Gratitude and the Starting Point
I have been truly blessed and I am ever so grateful for my life and the experiences/lessons provided.
I am one of three children born to my parents and I happen to be the last – forever known as “the baby”. (Sheesh does that leave a stigma, LOL.) Our parents were born just before the Great Depression in Omaha, Nebraska of the United States of America. They were the products of healthy eating (translation: minimal [if any] processed foods, fruit, vegetables, grains and meat from a time before GMOs, chemical fertilizers, etc.) combined with medical advancements. In my opinion, they did not seem “old” until they were well into their 80s because of this combination. This also applies to our in-laws for the most part, but those are stories for others to tell.
All three of us kids moved away from Omaha decades ago. Mom and Dad loved to travel so it wasn’t a big deal that we didn’t live in the same town anymore. Each of us made trips to Omaha, albeit usually not at the same time. I never really thought of us as a dysfunctional family… we siblings lead very different lives one from the other and it seemed normal for me to get news of my Brother and Sister’s families via Mom. My siblings went the military route and both ended up living in Virginia near to Washington DC. I (as you know from the website) live outside Kansas City, Missouri on a small farm. Eventually, between the headaches of air travel and discomfort of long drives, Mom and Dad took fewer trips out of town and we kids started making regular, scheduled, phone calls home. Brother taught them how to “Facetime” so they could do their communications face-to-face.
And so it was that my siblings and I passed into Senior Citizen land ourselves without having to think about caring for our aging parents. Oh, there was the occasional conversation with Mom about friends who had moved to “old age homes” and whether the places were somewhere she would entertain going when the time came, but that was about it.
Changes and Making a Plan
Then things started to change when they both passed 85 years of age. During a phone call they would tell us that either Mom or Dad had fallen and paramedics were called. Usually these were stories after the fact and were relayed as a humorous non-event … nothing to worry about and no bones broken.
Mom had requested a full family gathering for her 80th birthday and that had been fun. Fast forward eight years and she requested we all come to Omaha for Dad’s 90th birthday in August 2016. A few weeks later Mom was hospitalized with a UTI (urinary tract infection) after a fall. In preparation for the birthday gathering and then due to Mom’s hospitalization, sibling intercommunication became more focused and we all noted how we saw dramatic changes in both Mom and Dad.
What were the changes? Primarily, Mom would talk to us about Dad’s failing memory, her concern about how unstable his walking had become and about his fits of anger when any suggestion that he needed assistance was brought up. He handed over all the driving to Mom when they were out together (and that was a big deal). Mom’s changes were not as obvious being chalked up to the momentary lapses in memory that we all have and so we were focused on Dad; when in fact Mom’s memory was compromised and she was simply better at hiding it (both to us and herself).
Following is the first email that got us started comparing notes with each other (it happens to be from me to them):
Hi – I was wondering what you guys have planned for Dad’s birthday next week. I haven’t settled on a gift yet. Thought about a drawing, but he isn’t as keen on that as Mom is. Any special plans beyond gift ideas?
Also, has Mom brought up the subject of Dad’s failing memory with you? Each time I talk with her, she is more and more concerned. Especially when it comes to financial stuff. I asked if she had broached the subject of getting additional signatories on the accounts etc. and, I don’t remember exactly her words, it basically made Dad angry and he did not want to discuss it.
I know she would like to get into an assisted living situation and out of the house, but that subject is also taboo with Dad.
I don’t want to gang up on Dad… but I keep thinking of Nana and what a horrible time we had with her when she got like this.
I think *eldest son* probably has the best shot at convincing Dad to add him to legal documents, power of attorney, etc. since he/you are the oldest and male.
Anyway, thought I should bring it up before we get to Omaha. Looking forward to see you both… and *spouses*, of course. Any of the kids able to make it?
Dad did all the finances and legal stuff. So it was becoming increasingly important that someone find out the state of affairs and start the process of transferring those responsibilities. Turns out, all three of us had started doing searches on the internet about how to talk about these things with aging parents; and for once, we were not venturing into uncharted waters! There is so much good information to be found.
Also, thankfully, each of us kids has a different skill set (of course there is some overlap, not unexpectedly) and I wonder if not being close (physically and otherwise) helped in some way, but we were able to work in concert with each other. Honestly, I was afraid that we would end up in massive conflict but (once again) we were blessed with the ability to work together separately.
I wish I could tell you how we were able to do that so that it can be replicated easily. I hear horror stories of families that are torn apart because they cannot agree how things should be done and who should do them. It’s not like we always agreed with each other during this time (and since for that matter, LOL). Maybe you can use this narrative to help you in some way.
The biggest obstacle when it came to agreeing about something that needed to be done was that Mom would complain or simply tell about something to one or even two of us and when the other(s) would bring it up to help resolve it, she would say there wasn't any problem and/or deny bringing it up and not understand what we were trying to do. AND to make matters worse, she would tell each of us individually what she thought that specific person wanted to hear. Now THAT took a LONG time to figure out and using written communication about each of our conversations was key. What also made it hard was denial on our part because we each wanted to believe that our Mom was telling “me” her true feelings and just trying to please the other two. Eventually, having discussions with Mom and repeating that she needed to tell us all the same opinion/desire about important decisions helped… as much as her memory would allow, of course.
OK, so by December of 2016, Brother (eldest, son, AND executor of their wills already) became knowledgeable about transferring legal and financial things and agreed to take on the duties of being their representative in all of those matters.
Thankfully, Sister (second, daughter) is a Mom herself – 6 kids – and one of them is an accountant. It was relatively easy to get Dad to relinquish tax-prep to his grandson. Sister also works in the mental health field and she has been amazingly helpful when it comes to understanding and interpreting dementia, medications, and dealing with that stuff.
Me? I may be an artist and farmer now, but I was an executive secretary for over a decade. My contributions have been organizational and project management. I’m not afraid of appearing stupid (cause if you don’t ask the question, you won’t know the answer) and I don’t mind getting into the mud and doing the work. Thankfully, I was in driving distance (about 4 hours) and that made facilitating things much easier.
I always tell people that when it comes to us siblings… Brother has the brains, Sister has the mothering instinct, and I’m the comic relief. Of course, that is a silly simplification and we all have brains and compassion and we can all be really funny. Sarcasm and laughter always filled our house. Some people think sarcasm is a bad thing and I’ve never understood that. I suppose some people use it to hurt people intentionally. We never did. The rule in our house was: if you can’t take it, don’t throw it. And: you only poke fun at people you love. Oops, had a bit a bit of a “SQUIRREL” moment. My bad.
We did not consciously decide on our roles beyond Brother’s role; they presented themselves as we made our way through this journey. And, of course, our spouses were SO helpful both in practical ways and by supporting us.
I would be remiss not to mention that we DID have an extended family member in Omaha. Cousin (by marriage) thinks of our parents as her own in many ways. Her husband had died not long before and she was very helpful with practical information about end of life and rehabilitation needs. Plus, she was our in-town contact person. Cousin did not want to get into the middle of things and did not offer her opinion unless she felt we were missing something. I cannot express enough how helpful it was having someone minutes away from our parents.
Also by December 2016, I had taken it upon myself to contact “A Place for Mom” to educate myself about living options for Mom and Dad. Sister-in-law also contacted them a short time later from Virginia and we discovered that unlike SO many organizations, A Place for Mom coordinates nationally and they told her a case file had already been opened. Wow, nice… no duplication of effort.
And so, armed with information including understanding of the terminology; when the hubby and I visited Mom and Dad for the holidays it was with the blessing and encouragement of my siblings to broach the subject with Mom about either fixing the house to accommodate aging in place or finding an appropriate alternative place to live. The subject would not be discussed with Dad because we all already knew his opinion on these matters… “I don’t have any problems getting around, I can fix everything, and I’m not moving.”
Dad was demonstrably worse than in August, both mentally and physically.
Time to Move
I’m not a very subtle person. I don’t keep secrets – I mean I really have a hard time doing that. So, when Mom and I were alone I just came right out and asked her: Mom, do you want to fix the house up to stay here or would you like to move? And her answer was quick and firm… “I want to move to New Cassel.”
Wow, not just okay with moving, but definite about it and already knew where she wanted to go.
I’ve got to say it again, we have been blessed throughout this entire process; because Christmas was on Sunday and that made Monday a work holiday. We decided to see if we could tour New Cassel on Monday while we were still in town. Dad didn’t have to go with us, but we were going and it would be nice if he would join us. We called New Cassel and they told us to come on by, that the maintenance guy could show us around since the office staff was off for the holiday. Dad went with us (that was a surprise). The maintenance guy was straight forward, answered all kinds of safety questions that Dad brought in his negative way (such as fires due to living around a bunch of old people with stoves). We did quite a bit of walking and as we were leaving we met up with friends of Mom and Dad from church who had moved there the previous spring. They loved it. The best testimonial is from friends.
Dad was negative again by the time we got them home. Mom could move, he would stay in his house. Oh dear.
When the hubby and I got back to the farm, I scanned all the info about New Cassel and sent digital copies of it with my account of the visit to the siblings.
Over the next week, Mom and I talked about the various places that A Place for Mom had recommended. She knew of all of them and had opinions about each. No, she didn’t want to see them. She wanted to live at New Cassel. I had also contacted the staff at New Cassel and gotten the paperwork about qualifications to live there, getting on the wait list, etc. One of the forms was to be filled out by their doctors and (again, a blessing) Mom had an appointment the following week and took the paperwork with her. Dad’s doctor sent his form directly to New Cassel and then – Lo and Behold – someone called from New Cassel a few days later to say there was an apartment available, did we want to look at it? Doesn’t hurt to look! I made arrangements to drive to Omaha.
The next day (1-18-17) we looked at the apartment, Mom liked it, Dad was being polite in front of strangers. They both took the assessment test to determine if they qualify to live there (the test establishes whether they have dementia and at what level) and WOW, did that remove the denial I had been holding onto in regard to Mom. It turned out that they each have different levels of issues and they rely on the other to supplement the lack in their own. Between them, their dementia is slight, but individually it is significant – but not debilitating. They each qualified for residency at New Cassel which is described as an Independent Living residence with Assisted Living options available and the burners in the kitchenette would be disconnected. Other than disconnecting the burners, the apartment was ready for move in immediately. Mom wrote the check to hold the apartment, the remaining paperwork was provided and we discussed a move in date. Dad said wait until spring (of course), Mom said as soon as possible and so we decided to shoot for February 1, 2017 expecting it would be later. Not surprisingly, Dad was very negative after we left and gave the impression that he thought he was going to be moving to a jail.
Sidebar: What is Dad’s Problem?
I should give you some background at this point. My Dad’s experience with his own parents happened long before there were divisions of facilities into Independent Living, Assisted Living, and Skilled Nursing. When his parents could not take care of themselves, they were put into Nursing Homes; which were like hospital wards that you mostly could not leave until you died. As an only child, Dad helped his parents the best he could. His father went first to the Nursing Home and died after a short time. His mother lived alone in the family house (with Dad’s assistance) until he was forced to move her out of fear for her safety and the safety of others. It was a terrible experience for them both. She lived for years in the Nursing Home and he would bring her out for family gatherings and visit her every week… those were trying years for him, especially after she no longer recognized him. So it is understandable that his perspective on the subject was extremely negative. It was no use trying to convince him that his situation was different.
I should also tell you that Dad saved stuff. He had always been really talented at building things and repurposing items, which was good because while we were not poor, our life-style would be considered middle class or lower middle class. Mom only worked after all of us were in school and those were part time jobs for the most part. We did not take money for granted, we made due, and we used stuff up. Mom made our clothes, Dad made the things we needed and bought used cars and fixed them himself. Mom, not a “saver”, disliked clutter and so she donated unused clothes and items, she recycled, she threw things away. If you’ve read my blog posts… you already know all about this stuff because it’s how I learned to repurpose things, be a recycler and such.
Anyway, Dad saved stuff… not to the extent that he would be a candidate for that “Hoarders” show, but close, pretty darned close. One of the reasons Mom wanted to move, we discovered, was because Dad had started to encroach on the “public” areas of the house. Mom has never been a clean-freak type, but she liked the house to be presentable and so Dad’s hobbies, etc. were supposed to be limited to his office, the workroom and darkroom in the basement, the shed and the garage. Over the last couple of decades the piles and boxes had overgrown those areas and spilled into the breezeway, the living space of the basement, his bedroom, and finally the main floor living areas.
This background is provided to show that it was easy for Mom to think about moving – her home was not her home any longer – but it was really hard for Dad because he would have to leave the majority of his stuff behind to live in what he thought was a prison. All three of us siblings understood these incentives to move and to stay. We felt bad for Mom, we felt bad for Dad. We had to do what was best for both of them and, unfortunately, that meant Dad would have to make a sacrifice.
Okay, a little more background. Dad was not used to making this kind of sacrifice. His idea of a sacrifice would be to make something himself if he could not afford to buy it. Mom enabled him. There’s really no other way to describe it. He always said that Mom always got what she wanted, but the truth of it is that she facilitated Dad not having to give things up for her. Mom wanted Dad to do what he wanted, to have what he wanted; and there were only a few times during the time I lived with them or on my own in Omaha that Mom stood up for what she wanted and they are the only fights I can recall between them. Dad was never violent, he was very good at manipulation to get what he wanted.
As Dad got older, he started speaking his mind more with less consideration for how what he said affected others. This was especially true around Mom. And now that I’m thinking about it, I think the fact that Mom started telling us about it was probably the biggest catalyst to our getting involved. Personally, I began to fear for Mom… would Dad start being physically violent after all this time? After all, at 6 foot 2 inches, 225 pounds, he was still a big, powerful guy even with his stability issues. (By now, Dad was bent over like a candy cane.)
The Plan and the Move to New Cassel
All of this being said, the motivation to move quickly was shared by everyone (except Dad). We came up with a plan. Sister would visit the week before the move to do errands, help go through items and help them decide what to take and then she would fly home. I would drive up just before the move to help them finalize paperwork, last minute errands, etc. Brother would join me the day before the move to be the male influence on Dad and work with him to shift responsibilities. We would encourage Dad to move and not worry about “his stuff” because it would be in the house where he could go and visit it as he chose because he would have a car and still had a valid driver’s license (not that he should have been driving at all). It was going to take time to coordinate selling the house and we hoped by that time he would be comfortable in his new location. The new location being only a few miles from the house.
Once again, fortune looked favorably on us. Dad actually wanted us to hire movers (that was a surprise!) and I found a local company with reasonable rates and a good reputation (recommended by New Cassel staff) that was AVAILABLE ON FEBRUARY 1. Wow, 2 weeks out and they had an opening. I wasn’t sure if I should be nervous about that, LOL. One tidbit that you may enjoy… I chose a company that is made up of off-duty firefighters partly because I had this vision of Dad ensconced in his recliner in the basement, refusing to leave, with these big burly guys lifting him (recliner and all) and carrying him out of the house. :)
Things went forward according to plan. Brother and his wife (an interior decorator, no less) mocked up some furniture arrangements of the apartment floorplan. Sister arrived for her visit and it snowed enough to keep them in the house most of the time, but she was still able to take measurements of furniture, do a few errands and, more importantly, she was able to be there for Mom and encourage Dad about the move because by this time he had declared flat out that he would not move with Mom.
I’m sure he assumed this would stop everything, but Mom finally held her ground and said she was moving, period. The narrative for Dad went this way: “it comes down to this: it’s not a prison, for as long as you still own the house, you can spend time there. BUT, the beds are moving, the television and your chair are moving. Whatever food is left in the house will go to food banks or wherever and the refrigerator and freezer and other appliances will be cleaned out and unplugged.” Sister would also be coming back mid-February with her accountant son to do taxes and Dad would be able to be at the house for that. Incentives are important. And to that point, we started telling Dad that while he didn’t feel the need to move, Mom needed to be moved because she was not doing well at the house any longer. This was true and we needed to start saying it out loud. We hoped it would get him on our side because as much as he may have been self-centered and cantankerous, he loved Mom.
The staff at New Cassel were also very helpful. They suggested sharing with Dad that…
It’s a month-to-month lease, so he could stay for the first month on a trial basis. It takes about 2 weeks to get comfortable and then everyone loves it. Also, see if a neighbor that he trusts will watch the house during that time so he knows he doesn’t have to worry about that.
I highly recommend getting all the assistance you can from every resource.
It is amazing this thing called dementia. One moment Dad would be confused, repetitive, and obsessive; then he would be lucid and manipulative. Sometimes he would only remember his youth and the next could tell you what you said a few minutes before. If we hadn’t done our research into it, we would have thought he was doing all this on purpose. But, that is truly the way it works.
Dad occasionally would be resigned to the move and agreed to getting a new (smaller) bed that would fit better in the new apartment. He also started talking about whether he should take his ratty recliner and was interested in getting a new one for the apartment. Eventually, we figured out he wanted to leave his bed and recliner at the house so he could continue living there and just visit Mom in the apartment (can you say: have his cake and eat it, too?). After all, he said, he would need to get the mail every day and he could watch television. Heavy sigh. “No Dad, not really, because the mail will be directed to the new apartment and the television is moving with Mom” and we were back to anger and blaming Mom for having to leave his house. Thank goodness Sister was able to be there for that week before the move.
Where was I? Oh yes, my part of the actual move. It still amazes me how much we were able to do in two short weeks. I made calls, sent emails, etc. to coordinate everything so we would know exactly what needed to be done ahead of time and who was doing what, etc. How much the movers do, having everything ready to reduce time (and thereby, costs). One of my projects for the winter was supposed to be organizing my basement and getting things into clear plastic, lidded containers for easy viewing on shelves. As you may have guessed, that took a back burner to the move; but it was another blessing because I had already purchased a whole bunch of containers. Add to that the bubble wrap and other packing materials I had kept from our move – yes, I have that habit, inherited or learned – and there was no need to purchase boxes. The movers would be plastic wrapping drawers and doors, there was no maximum weight limit per item and we could pack clothes and stuff into the chests and other furniture as well. Have you priced packing boxes etc.? Phew! Pricey. As I recall, we used my 12 containers and a couple of big cardboard boxes (for unusually shaped things) in which I was storing the bubble wrap, etc. I also wanted everything that was being moved CLEAN as it left so that no old dirt/dust was taken into the new apartment. I put together a container with Swiffer dusters, gloves, hair covering, face masks, wood cleaner, non-wood cleaner, microfiber cloths, and transported my super-HEPA filtered canister vacuum. (I hate to clean and old dust causes me sinus infection troubles.)
After I arrived on Sunday, the plan was to find an XL-twin for Dad and look at recliners. He decided to go – which would either make things really difficult or a whole lot easier – and was actually pleasant (even though he forgot why we were going shopping and what for during the drive to the store). He picked a bed that was comfortable and a recliner that seemed to be tailor-made for a big guy with really long legs and arms. Both items would be delivered to the new apartment the same day as the move (Wednesday, the 1st). We found the rest of the paperwork we needed for the meeting at New Cassel on Monday.
The meeting at New Cassel was to confirm all the previous paperwork had been received, go over the paperwork that had been sent home after the assessment and sign what needed to be signed. We had all agreed that the additional costs for the staff to clean the room and do their laundry was a perk that Mom deserved after 65 years of marriage and raising 3 kids. “You are officially on vacation for the rest of your life! No more cooking, cleaning or laundry.”
After a late lunch, Mom took a nap, Dad did something in his office, and I started cleaning and packing. When it was time, we left for the airport to pick up Brother. Mom got out to meet him while I drove Dad around the circuit. I took that opportunity and put on my serious voice:
"Dad, I am happy we are alone because I want to talk to you without Mom. She is doing worse than she thinks and depends on you to help her." Dad said he knows and that is why he is moving with her.
“I don't want her to know we talked about this, it would not help her and could hurt her. There are lots of things you can do to help her.” Dad says he is worried about her driving.
“An excellent opportunity is to encourage her to use the New Cassel transportation instead of driving and you using it as well as an example of how well it works."
"Remember your wedding vows about for better or worse, well, this is the worse (and what a great place to live as you help her through it) and Mom really needs you at New Cassel with her." Dad agrees and restates it is why he is moving.
We agree not to mention the conversation to Mom. Our secret. I told him we kids had discussed this and don't be surprised if Brother and Sister bring it up as well.
This is almost word for word what I said to Mom about why it is so important that Dad live at New Cassel, except flip flopping Mom for Dad. It was a very positive conversation.
Tuesday was a work day: cleaning, packing for me, paperwork for Brother. Mom participated and Dad participated when it came to going out with Brother, but then stayed in his office in avoidance mode.
Can you imagine being my Dad at that moment? His whole world has turned upside down in a few short weeks. No one is coddling him. He isn’t getting his own way. He has to think about taking care of Mom rather than her taking care of him. He is being forced out of his home of 56 years, away from all the stuff that provides him with his identity as an individual. His job as provider and protector is over. Is it any wonder that he doesn’t want to participate? How do you help someone cope with all those things? Short answer… you can’t. They have to figure it out for themselves. Best we could do was do this as quickly and efficiently as possible and hope he could find a way to live in this new world.
Is it any wonder that Dad could not choose what to take with him? He wanted it all, how could we possible expect him to settle on a few things? Luckily, he had time to make decisions about what he would miss the most after the move because the house would still be there with all his stuff in it until we could figure out what came next.
Moving day (Wednesday, Feb 1) went along with minimal issues. The movers were great. I highly recommend you ask the staff where you are moving to for references in regard to movers. These guys have moved a lot of people in and out of New Cassel and know exactly where to get in and around with dollies, etc. The bed and recliner were already there when we arrived. The staff came with linens for the beds and towels for the bathrooms and told us how we needed to leave space around three sides of the beds so they can do their work.* They came back later to make up the beds and even left a mint on the pillows. Even the maintenance guy come by and hooked the cable box to the television and got it all set up. *Not every facility provides linens and towels.
Thursday was busy with getting the apartment looking like their home. Dad participated in decisions about where things should go. Later, Mom and I made a run to the store and stopped at the house to pick up a few things we had forgotten about. We ended up skipping the store because Mom was fatigued. I headed home that evening and Brother stayed the night before flying out Friday morning.
Getting Acclimated and Getting the House Ready Sell
I wish I could tell you that Dad adapted well once he was in the new place. He did not. The newness was at first like a vacation and he did well, except for going back to the house daily with one excuse or another (which was OK because he was learning he was free to come and go as he pleased). Mom, on the other hand, thrived with the change, the friends that lived there, etc. until Dad’s incessant negativity wore her down again. We thought that Mom at least would take advantage of all the activities and gatherings at New Cassel, so we were surprised that she seemed intent on only leaving the apartment for meals. We reminded her that she could leave Dad unattended without worry now and vice versa, Dad could leave Mom unattended.
We all knew that the next thing that needed to be done (beyond the taxes) was clearing out the house and preparing it to be sold. After a couple of weeks, Dad seemed to be less anxious about the move in general (probably because he had Mom drive him over there every day for the first two (2) weeks) and had managed to choose a few items to bring back to the apartment. We siblings discussed what we thought we needed to do before bringing Mom in on the conversation and eventually we brought Dad into it.
Sister would be there with accountant grandson first. Brother sent her a list of papers to keep an eye out for and suggestions about what he thought should be kept and what could be disposed of (donations, trash, recycling). I also sent my thoughts about what should be kept and what could be disposed of… which was along the lines of: don’t get rid of anything that is not obviously trash until we can determine if there is value in it. The hubby and I like to go to auctions and also watch Antiques Roadshow and other programs about ephemera and how valuable it can be. Sister is a declutterer (like my Mom) and has made many military moves and worked in many thrift stores. Suffice it to say, we have very different opinions about what has value.
Mom’s opinion was get rid of everything. Family has first dibs and then donate, sell or trash the rest. Dad’s opinion was slowly moving from keep everything to make sure the family gets the good stuff and eventually (this took several months) he was resigned to the disposal/dispersal of “his stuff”.
I was worried and my worry was not completely unjustified (LOL). Sister donated what was left of Dad’s clothes immediately. Unfortunately, she did not realize that he had only taken winter clothes to the apartment, so he had very few warm weather clothes (which will be discussed later).
Other than the clothing, Sister spent her visit sorting through things… a kind of “triage” as Brother described it. Dad was at the house and so it was slow going that visit. Probably just as well.
As I reread Sister’s email describing his visit, I was reminded about OLD DUST. The house was so heavily coated in old dust that I don’t think anyone had cleaned (other than dust the furniture used every day) for at least 20 years. Dust becomes toxic after about six (6) weeks (which is the subject for a different blog post) so the effect of disturbing the dust in the house was terrible on those of us who have allergies and/or asthma. Sister was really brave to both work in the house and sleep there (or really foolish – not for me to make that judgement, LOL).
We also hoped they would get used to using the transportation provided by New Cassel and not want to drive themselves as it was apparent that even Mom was not driving as well as she used to. Thankfully, Cousin was excited to be able to be of use and help out, taking them to the store and such things. They did not use the transportation beyond the initial time when I helped them fill out the form to take them to a doctor’s appointment even though they both gave a glowing review of the service at the time; as time went by the memory changed to a negative experience… isn’t it amazing how we can change the way we remember something.
There were several other services they could choose to use (like grocery delivery, for example) and they did not take advantage of them. Of course, there is nursing staff at the facility, as you would expect, in cases of emergency. A podiatrist comes in monthly to cut toe-nails (Mom and Dad took advantage of this one time, same results as the transportation: loved it when it they used it, remembered is as a terrible experience.) Did you know that you can tell from the condition of a person’s foot whether they are taking care of themselves?
New Cassel made it easy to transfer their phone number to their new apartment, which was nice since they had that number for 56 years and anyone who knew them would have it. Unfortunately, living for so long in one place meant that Mom didn’t think about the need to notify friends and family about their new address. Mail would be forwarded for six (6) months but at some time you have to provide your new address if you expect to get visitors and mail beyond that. I took on the job of going through address books and sending change of address notes. Unfortunately, there were people whose contact information Mom simply remembered and so it wasn’t written down.
Speaking of mail. Like many older people, Dad had a weakness when it came to charitable donations. He rationalized it as a way to lower his tax burden (not knowing about his special tax position as a very senior citizen) and he was an easy target. The church did really well and he got on all kinds of mailing lists for religion based charities who send out little calendars, calculators, gloves, blankets, etc. in an effort to guilt you into sending them money. He would send $5 to everybody, keep track of it, and list it in his tax records. The amount of junk mail sent to the house was astounding. When it came time to change the address, Brother opted to have it changed to HIS address so he would receive ALL the mail. This way, the majority of the flow of junk mail stopped reaching Dad. Unfortunately, there is always some junk mail sent to “resident”. Brother notified whatever magazine (etc.) that needed to have the mailing address of the new apartment.
Expectations and Health Challenges
Expectations. Mom seemed to think that moving would magically make everything wonderful again. When everything did not become wonderful right away, she became even more depressed (although she would never admit to that). She had agreed to an apartment with one (1) bedroom and it had been a LONG time since she had shared a bedroom with Dad. The apartment had two (2) bathrooms (which she had stipulated was a requirement from the get-go) so they each had their own bathroom; but Dad had trouble adjusting to his shower and fell at least once before the maintenance folk installed extra safety bars. Dad also had trouble getting used to a smaller bed and would wake Mom up “thrashing around”. We didn’t help things by telling each of them how the other was worse off than they thought; it caused them both to want to keep an eye on the other so they hardly spent any time apart. Telling them that there were staff to watch out for the other did not help. Too much togetherness is a problem and negativity expands when it is shared. Unhappiness about one thing becomes unhappiness about everything and suddenly it’s hard to get out of bed… which is what happened to Mom after Sister left.
The passage of time appears to be a real problem for some people. Dad relies heavily on his watch (with date feature) and calendars… probably from the years and years of doing office work and keeping the books. Mom does not use any “clues” and her perspective of time passing is vague to put it mildly. For example, the podiatrist came monthly to New Cassel and we made sure Mom and Dad were signed up for his visit that first month. They were both pleased with having their toes trimmed (they use a grinder rather than cutting tools) and we expected they would sign up again the next month. They did not. Their toenails seemed fine to them. The next opportunity presented itself and we were told how awful the podiatrist was because they had just been there and he hardly took anything off, their toenails were still long. That was the story from then on. Neither Mom nor Dad realized that it had been months since their toenails had been trimmed and nothing we could say would change that perspective. Time was just squished together. Something that happened once months ago would be retold time and again as if it had just happened. It was difficult to know when this was time being squished or something was actually recurring.
Getting older causes changes in our bodies. The ability to regulate our body temperature, for one thing; which is why so many older people keep their houses hot and wear lots of layers of clothing. Mom and Dad were keeping their apartment at 78 degrees and using a space heater in the bedroom. All that heat dried out the air causing low humidity and lots of dust. It turns out dusting was an extra service at an additional expense and we made arrangements for that level of housekeeping be added. Dad kept plenty of Mountain Dew on hand, but Mom didn’t seem to think about keeping beverages for herself. Neither of them, we learned the hard way, were drinking water and Mom (probably due to the changes and depression upsetting her digestion) was also dealing with diarrhea. And so it was that Cousin took Mom to the emergency room and they spent several hours there with Mom on an IV drip; luckily no urinary tract infection that time.
This probably comes under the heading of “Too Much Information” but it really isn’t, so… Mom had been using pads for several years because of urinary leakage. It happens, you learn to deal with it. Unfortunately, Mom had come to depend on those pads to hold more than a little bit of leakage and did not change it as soon as she felt the dampness. Thus the pad would get really full of urine before Mom would change it. The trouble with doing this (in addition to not changing it before it is supersaturated) is that the body gets used to things on its own and, in this case, stops sending signals to the brain about the wetness; making it more and more difficult to recognize wetness/leakage. Mom’s solution was not changing the pad more often or even switching to an incontinence product that will contain larger amounts of urine… no, it was don’t drink as much.
One of the hazards of any apartment complex is the spread of viruses. Facilities for the aged are particularly susceptible. You won’t hear my rant about flu vaccinations here, suffice it to say that Mom and Dad opted OUT of getting them. They tend to have very good immune systems and weather illness well. Mom came down with what was going around… probably aggravated by not staying hydrated. As soon as the staff heard that she did not feel well, she was restricted to her apartment and they provided her meals there (lots of fluids and soup) until she showed no symptoms for the required number of days. Dad did not succumb during that flu season.
Upon notification of this, I made arrangements and drove to Omaha with a selection of beverages that Mom might like to keep stocked in the refrigerator. I made a game out of taste testing the various items and Dad participated as well. We ended up with a list that showed what each of them preferred and what they did not like as well. I provided it to siblings and Cousin so whoever visited could be sure the refrigerator was stocked. I even made sure the choices I brought were available from the grocery store that the facility used for delivery.
I thought I had hit upon a BIG IDEA. Something I could share with folks around the world to help their aging parents avoid dehydration. Have you heard the cliché: You can take a horse to water but you can’t make it drink? Well, you can stock your parents refrigerator with healthy, tasty beverages but you can’t force them to drink them (at least not while they are able to make their own decisions). I learned later that Mom’s taste buds had been affected by the flu virus and so the whole water alternative taste testing was a waste of time because everything tasted different when she was back to normal. Heavy Sigh.
One thing we did not realize was that the move/change would cause both them to have an increase in their dementia. At the house, they had everything in the same places for so long that they did not have to think about where anything was and habits were ingrained. At the new apartment, everything was different and it was stressful and difficult for them to create new habits. It is one thing we wish we had known ahead of time so that we could have gotten ahead of that somehow. The most obvious example of this was Mom’s medication. At the house, she had her pill case on the dining room table so she would remember to take her pills when she ate. At the apartment, they ate in a communal (restaurant-style) dining room and she did not remember that she had to take her pills with her and was not used to thinking about taking them before or after her meal. Doubtless, not taking her medication had a part in the whole depression, illness, dehydration saga.
And thus began the unexpected costs that simply get higher as time goes by. Mom has been on high blood pressure medication for decades and in the last decade she developed Diabetes which is managed by medication. She needed help remembering to take her medications more than once a day and the best solution for her situation was to use one of the Assisted Living services in which her medications are ordered from the contracted pharmacy, delivered to the facility and the staff brings what she gets each day as prescribed and waits until she has taken them.
What to Do with All the Stuff
As all of this talk about water was going on, conversations about house contents were continuing. Plans were made for Brother to arrive the first of April, Sister a couple days later and myself a couple days after that. We would all work on going through the house, destroying personal papers, sorting and getting it ready for however was decided to disperse the remaining contents. Then Brother and Sister (who live in the Washington DC area) would load up what would sell best on the East Coast and/or needed to be catalogued/appraised and drive home.
I had some understanding of what kinds of things were in the house and a list of the clubs/organizations Dad (and Mom) had belonged to that might be interested in the files and things that pertained to them. I corresponded with them to say that Mom and Dad were moving (note, “moving” not “moved” so that the house would still be thought of as occupied*) and would they be interested in looking through the stuff that pertained to them? I also networked to find possible homes for things like the photographic darkroom equipment. I decided to do all this because I thought it would ease Dad’s mind to think of his stuff finding new homes, getting things to the appropriate person, etc. instead of just getting rid of his stuff.
*An occupied house as opposed to an unoccupied house turns out to be a big deal. We were initially simply concerned about vandalism and theft, but the insurance company is concerned about this in addition to frozen pipes, water damage, electrical issues, etc. should utilities be turned off and will therefore charge the homeowner MORE for the insurance premiums during the time that the house is unoccupied. Of course, initiating a change of address with the insurance company triggers a call to ask this very question. It is possible that a relative or friend could be living in the house throughout the sale process, so while it may be annoying to be asked this question about whether or not the house is occupied it should not be unexpected.
Next came the discussion about which is the best option when it comes to getting the most money out of things that have value; after all, they did have pensions but there was a finite amount of money in their accounts and the costs were beginning to climb. So, garage sale? Estate Sale? Auction? Ebay? Consignment Shop? We needed some expert assistance and I volunteered to investigate.
Once again, for a change we were not ahead of the curve. There is a great deal of information to be found on the internet about the pros and cons of the various choices available to dispose/disperse of possessions. Each situation is going to be different, so I won’t go into the attributes of each, you can find those easily yourself. What is true for everyone in 2018 is that the trend has moved away from keeping family furniture and dishes etc. in favor of minimalism and stuff from Ikea. While the “kids” of the aging parents are likely ready to downsize themselves. This lack of a market within the family means lots of stuff available to the population at large and therefore, more supply than demand. Unless the items are rare and extremely valuable, the competition for buyers is tough and the amount of money you can expect to bring in is low.
Even after a week with the three (3) of us working on the contents of the house, it was clear that this was a job for professionals and we ended up using an Auction House Realtor who would sort between trash (and dispose of it), low value items that were saleable (put them into lots) and high value items, putting the saleable items into an on-line auction. After the auction, they would “brush clean” the house, dispose of anything not picked up, list the house and start showing it. We chose an auction-type real estate sale for the house as-is and, since the market in Omaha during the summer of 2017 was a seller’s market, we hoped that would result in a bidding war. The entire process from interview (April 27) to sale of the house (August 30) took 4 months.
When it comes to disposing of unsaleable things, remember to recycle and donate. Oh, and don’t forget to consider the hazardous waste! In Omaha, there is a communal location for hazardous waste disposal. They provide a list of what kinds of things they will take, what is OK to trash and other great information. Since we were not residents but acting on their behalf, we were required to bring proof of residency and how we were related. I highly recommend researching to find a similar situation in your area.
As I mentioned, all of us siblings were in Omaha the first week of April and we made sure to spend time with the folks. Dad appeared to be reconciled to the cleaning out of the house and even suggested just auctioning everything off (before we mentioned it to him). Both Mom and Dad were in good spirits while we were there.
Then the **it hit the fan. A week later Dad started complaining about pain in his back. He wasn’t able to walk to the dining room and wouldn’t use the walker that he had bought some time before (“for when he got old”). He and Mom retrieved an old wheelchair that had been Dad’s Mom’s (and was therefore for a tiny person) from the house and he wanted Mom to push him to meals.
Personally, I think this was the effect of losing his stuff… whether consciously or not, if he was unhappy, everyone was going to be unhappy. And there may have been back pain or it could have been that manifested his loss into his back. Thankfully, they were able to get an appointment with Dad’s doctor right away (4-18) and Dad was given with a prescription for Meloxicam (basically a long-term NSAID) and a dose right away. He felt better almost immediately; which (we learned later from the doctor) is unlikely to be more than a placebo effect. My opinion is that the attention perked up his spirits which made the “pain” go away.
The next morning the pain was back. We got a call from Cousin saying that non-emergency transport was contacted to take Dad to Emergency at the hospital (4-19) because the pain was worse and Dad was even more confused than normal. The doctor on duty prescribed Tramadol (an opioid) with instructions to not use the wheelchair, use the walker and do more walking than just to the dining room three times a day. Another appointment was made with Dad’s doctor for the following day (4-20).
During the night, Dad made a trip to the bathroom, got dizzy, slid down the wall to the floor, and was unable to get back off the floor. Mom covered him with a blanket and contacted the nursing staff. This situation is technically “a fall”. When the staff discovers that a resident has fallen, they are required to report it. Dad’s doctor directed them to send Dad to Emergency (same hospital as the previous day) via non-emergency transport. (We didn’t know it at the time, but now we are all pretty well convinced that the Tramadol was the cause of this situation because Dad had never had anything stronger than Excedrin before.) Mom asked me to come to Omaha and so I went.
This is when I learned about the terms “transfer” and “1-person lift rule”; in which the first means to move, or be moved by someone else, into and out of a chair, a bed, off the floor, etc. and the second which means it takes only one (1) person to transfer a resident. I also learned that most Assisted Living Facilities do not have the staff on-hand to accommodate someone who requires two (2) people to transfer them. New Cassel is such a facility. Dad was a big guy and was considered a "2-person lift". If Dad was going to continue living at New Cassel, he would have to be able to transfer himself. Otherwise, he would need to move to a different facility that CAN accommodate a 2-person lift.
Dad was admitted to the hospital since he had been to Emergency twice in two days for assessment of his condition and to determine further course of action. It turns out that just being admitted doesn’t guarantee that insurance will pay for the further course of action, no... that requires a 3-day stay, and Dad’s stay was 2-days. The hospital stopped the Tramadol (in order to have an honest assessment) and Dad was less confused, somewhat pleasant and (he said) not in any pain. (Does this sound familiar? Dad gets attention, Dad feels no pain.)
The prognosis was degenerative arthritis. Meloxicam was restarted to be administered at bedtime (so it would be at its most effective when Dad got up in the morning). Dad was to use the walker 100% of the time (“doctor’s orders, I don’t care if you don’t think you need it, 100% of the time” – my reply to Dad every time he complained about the walker from then on) and physical therapy was prescribed to get Dad’s core muscles capable of holding him up.
Rehab at a Skilled Nursing Facility
As soon as the assessment was completed, a social worker arrived to tell us the results AND to inform us that we had to choose the Skilled Nursing Facility where Dad would be moving to take his physical therapy and actually MOVE him there by the end of the business day. While the social worker was very helpful, it was extremely frustrating to have to make such an important decision in such a short period of time (+/- 2 hours). Luckily, Cousin had some experience with Skilled Nursing Facilities (which is where you go for physical rehab) and was able to provide some assistance. Brother got involved because he handled all the medical and financial duties. Between all of us, we decided on a facility literally across the street from New Cassel. It turned out to be a really good decision. Further research (later) showed they had an excellent rating for short-term rehab (but not so good for long-term stays) and were about mid-range when it came to costs. This place wanted a full month’s “rent” up front (rent includes meals and non-therapy activities). Actual therapy and medications would be paid for by insurance, but the rent was not. The prescribed course was two (2) weeks. If he was able to leave before the month of rent, a refund would be provided.
A shared room was available and Dad was transported late in the afternoon to the kind of place he thought he was moving to when we moved them to New Cassel.
This is when I learned more about dementia. I went to see Dad the following morning with a sack of clothes and made the mistake of tickling his foot to wake him up. (It turns out he HATED to be tickled on his feet.) He had a bad night and fell out of the bed and soiled himself. But the worst part was the story he told me about his night. It was a complete fantasy. I tried to tell him he must have had a bad dream, but he kept insisting it all really happened. I could not calm him down, he got more and more agitated. I finally said I would talk to the nurse to find out why what he was telling me had happened, had happened. Once I got to the nurse and explained all of this, she was SO helpful… the best advice I’ve had to date.
The dementia creates dream explanations for things they cannot comprehend/understand/explain. They truly believe what their mind is telling them. If you disagree with them, they get more and more agitated. If you agree with them, you reinforce the dream explanation. The best thing to do is acknowledge that you hear them, commiserate about the emotions it created and change the subject.
And you know what? It worked and it continued to work every time I came into that situation.
Dad seemed to thrive at the rehab facility. One reason might be that we encouraged him to participate and work hard so that he could qualify to move back to New Cassel. That if he didn’t qualify, we would have to find a different place for him to live. Incentives are good! More likely he thrived because he could be the center of attention whenever he wanted. We found him sitting behind the nursing station one visit (before he knew we were there), laughing and joking with the staff. The dementia test when he arrived showed his score at 11 (it had been 22 when he took it at New Cassel before that move) and we were told it is completely normal for that reduction to happen because of the confusion revolving around the changes of a move. Dad had trouble throughout his time there remembering about the button to call when he needed help out of bed and so he fell (not far and not badly hurt) often. He was given medication for his dementia in addition to his pain medication. The family had a meeting with the staff a week into his stay (during which time he had NOT received any physical therapy, by they way...we were told it would start right away) and requested (demanded, actually) that he NOT be given any opioids because he was not equipped to handle the effects. It seems people in the physical therapy industry don’t come across very many people who are NOT heavily medicated.
I would be remiss if I did not mention that Dad began to refer to the rehab facility as “prison” and New Cassel as “magic castle”. We got calls almost daily during his first few weeks saying Dad had fallen out of bed or slid of the sofa. The facility finally found a bed long enough to accommodate him and situated it against the wall. Between this setup, the lessons on how to maneuver himself out of the bed, and signs posted in his line of sight to remind him to use his call button (among other things), those calls came further apart and finally, not at all.
By the end of the prescribed therapy and exactly one month from admission, Dad’s physical abilities were as good as they were going to get. His dementia score was up to 24. BUT, he did NOT qualify to go back to New Cassel because he would require a 2-person lift should he fall and “as good as they were going to get” was not good enough.
Some suggestions regarding Skilled Nursing Facilities. Don’t take anything that you are worried about getting lost. Label with permanent marker every article of clothing. Have a family member do the person’s laundry if you can instead of the facility. Don’t take the favorite pillow or other bed linens. Consider getting second hand clothes to use instead of bringing clothes from home – especially t-shirts, stretchy pants, light weight tennis shoes.
Overall, we were very pleased with the rehab facility; but things disappeared. Luckily, Dad’s clothing did not fit anyone else. When we discovered that most of his clothes were not in the closet at the end of his stay, the staff let me go through the racks and racks of unclaimed clothes. It was pretty easy to identify his clothes because they were pretty much all the same brand (also much bigger than any of the other clothes).
A Month Off for Mom
Mom was alone at New Cassel while Dad was at rehab and she thrived! Her energy level increased, her confusion decreased and she had full control of the remote for the television. She made regular visits across the street to visit Dad and sometimes those visits were unpleasant for her because it turns out that while patients will appear happy to their caregivers, they feel comfortable about complaining to their families and blaming them for having to be where they are.
Other than those visits, Mom seemed more like her old self. She enjoyed making her own decisions… for example, Dad always insisted that they eat breakfast in the dining room (because it was paid for out of the rent and he was going to get his money’s worth) whereas Mom liked to sleep in and eat later than breakfast was served (if at all). The weather had turned mild (it was May) and she started walking the various garden paths and exploring the complex. Because she was walking more, her balance got better, her appetite returned, and her outlook improved.
Mom even started telling us that she did not think she was capable of living with Dad any longer. She did not want him coming back to her apartment. And, as mentioned above, he was not going to be able to go back to that apartment anyway.
A Place for Dad (and Mom?)
Once again gratitude must be expressed. Because we were not ahead of the curve on any of this, people and businesses were in place to help find facilities that could accommodate Dad’s needs. The social worker at the skilled nursing facility gave us the name of just such a person/business. The way I understand it best is they are like real estate agents except that they show housing options/care facilities and earn a commission for doing this from the facility that you ultimately choose and move in to. What was especially helpful for us was this agent’s knowledge of Medicaid, Medicare, and other revenues of aid in relation to each facility.
Mom and Dad had Railroad Retirement from the Union Pacific Railroad (which, I eventually learned, was what Social Security and Medicare was originally based on) and do not draw from Social Security; BUT, they do qualify for some benefits from within Medicare/Medicaid. Navigating the Medicare/Medicaid waters can be tricky, so assistance is very welcome. Brother worked directly with the agent on what we needed to look for in those area.
The agent also interviewed us about Dad’s level of dementia and had discussion with the social worker at the skilled nursing facility. Did we want to look for a place just for Dad? Did we want a place where Mom and Dad could both live? A place that had multiple levels of care within a single complex? Did we want somewhere they could Age in Place? Someplace that has a Hospice option (for end of life… sometime in the future)?
I worked with the agent directly to interview and evaluate facilities, being able to drive back and forth pretty easily. As soon as the agent had the information they needed, we started touring facilities so we would be ready to move Dad as soon as he was released (assuming he would be released) from the skilled nursing facility. Actually, we also looked at alternative skilled nursing facilities once we determined that where he was getting rehab was fine for short term, but not highly regard for long term care.
Because of Dad’s dementia, we were focused on finding a Memory Care type of facility that could accommodate a 2-person lift if Dad did not regain the ability to transfer himself. Are you impressed that I am able to use those terms correctly in a sentence? I certainly am. We would not need to look for another Skilled Nursing Facility after all and the agent did not show me facilities that did not meet that important criteria: 2-person lift capability.
The price of living in the various levels of care facilities gets higher the more interaction and attention is required. So an Independent Living apartment is at the low end, followed by Assisted Living (which gets higher depending on how much assistance is needed), then Memory Care (because these have at least a Registered Nurse on duty at all times and are kept locked so the residents can’t leave and get lost) and finally Skilled Nursing.
Our agent showed me facilities that were small, large and in between. Facilities that were strictly for Memory Care and others that had separate sections devoted to Memory Care within Assisted and Independent Living Complexes. Some were small, like living in a large house and some were quite large with multiple buildings connected with long halls. It would have been overwhelming for me trying to remember which facility took what kind of aid and how long the resident had to live there on private-pay before aid was able to be applied for or kicked in automatically.
Oh, yes, did I not mention about private-pay before aid can be gotten? I think the shortest term was two (2) years of private-pay. Speaking of this, we learned during this time of discovery that New Cassel does not participate in any of the aid programs, government or not. They are a non-profit organization and therefore have quite reasonable rates; but they are also private-pay for all time. Once we became aware of this, Brother had to do some serious spreadsheet calculations to figure out what scenarios we needed to be looking at that would both not use up all Mom and Dad’s savings before aid could kick in and that had the levels of care they each needed.
We did not include Mom and Dad in the initial tours. There were quite a few to get through and I had an idea of what Mom would like based on New Cassel; so it was better to narrow the field down before bringing Mom or Dad in on them.
It was just before my trip up to start tours that Sister-in-law recommended this book by Atul Gawande called “Being Mortal, Medicine and What Matters in the End”. I was able to get it on CD from my library and listened to the audiobook on my way up (learned about assisted living/aging in place) and on the way back (learned about palliative care and hospice). This was SO helpful because I felt confident to evaluate facilities having this background information fresh in my mind. I was able to rely on the agent for the monetary information being relayed to Brother effectively which left me with the task of determining how these places made me feel about leaving my parents in their care. I highly recommend “Being Mortal…” to everyone for their own future decisions, their aging parents and/or terminally ill family members.
After each tour, I made notes of my first impressions so that I would not confuse one facility with another. I also took a photo of the person with whom we spoke holding their brochure so I would be able to tell which person was with what facility. At the end of all the tours, I ranked the facilities Best Fit to Worst from my impressions. When I got home, I sat down with all the brochures and wrote out a comprehensive report for my family detailing what was common to all, how I based my scoring, and the results of my ranking with details of why. I attached the packets (digitally) from the top three (3).
We all agreed that Dad was doing better mentally and should be part of the decision where he would live. Each facility that we narrowed down to requires an assessment of the prospective resident prior to signing a lease. A deposit is required to hold a room and is returned if the prospective resident does not qualify OR if we decide on a different facility.
Our agent contacted our choices and coordinated those tours with the social worker at the skilled nursing facility so Dad could be “checked out” for the afternoon and to have the appropriate paperwork sent so the assessment process could get started. A wheelchair was provided at our top pick and staff were on hand to help transfer Dad from the vehicle to the wheelchair. Once the staff met Dad in person, they shared their opinion that Dad did NOT require Memory Care (and that it could be detrimental to his dementia to be with people whose dementia is much more progressed) and he could age in place in the Assisted Living area of the facility where they would still be able to accommodate his transfer needs. Dad liked the place and so we did not take any other tours. An apartment was available as soon as he would be released from his rehab and a deposit was made to hold it.
Mom was not able to go on the tour with Dad so Cousin took her back another day. Mom also liked it and when we learned that a 2-bedroom/2-bathroom apartment would be available about a month after Dad could move, she decided that would be an acceptable solution “so long as I don’t have to take care of him”; which meant the staff did an assessment on Mom as well.
Happily, both Mom and Dad were cleared to move to the 2-bed/2-bath apartment. Since it was not available right away, Dad would move as soon as possible to the 1-bedroom and then both Mom and Dad would move into the 2-bed/2-bath after it had been renovated (approximately a month later).
Now it was crunch time… coordinate moving furniture and other memorabilia from the house to the temporary apartment and get Dad settled so as to avoid any further billing from the skilled nursing facility. The movers I liked so much from the move to New Cassel were not available on such short notice, so the local family pulled it together with additional help from a few local friends. The weekend before the move, my hubby and I hauled our flat-bed trailer from the farm. The “muscle” among us loaded Dad’s queen-size bed and a few other pieces of furniture from the house onto the trailer. The rest of us picked over items that we hoped would be nice for Dad to reminisce upon, boxed them and loaded the van. We caravanned to SilverRidge and set up the apartment for the temporary stay (leaving most items boxed for the move to the 2-bed/2-bath apartment).
This Assisted Living facility did NOT provide bed linens, towels, or toilet paper, so I did some shopping on Dad’s behalf to be sure he had the required 2 sets of bed linens, 2 sets of towels, a clothes hamper and other necessities. Like New Cassel, each resident’s laundry is supposed to be done separately; but we discovered even at New Cassel items got mixed up and so I brought a Sharpie permanent marker and put the folk’s last name on everything that gets laundered. (Except for black socks… need a white marker for that and did not have one.)
Brother ordered a TV to be delivered to a store close to the new place, which we picked up and hubby got set up and ready for the maintenance staff to connect to the cable box. We also purchased a large button telephone that could be programmed with speed dial. The move required using an in-house telephone service so you had to press “9” to get an outside line. Very confusing… it took me several tries to program our long-distance phone numbers into the thing. I left a sheet of written instructions by the phone for any other calls out.
Here is something that happened that might be helpful: the new place needed paperwork from Dad’s doctor. Simple, right? A call to Dad’s doctor and they were set to get them back as soon as they received them… and nothing. Turned out that there was a miscommunication about which doctor needed to send paperwork because a different doctor was working with him at rehab. So, remember: find out what doctor the paperwork needs to come from if there is more than one doctor involved.
Dad was released from rehab with orders to continue physical therapy from a home health provider. And so it was exactly one month from admission that we said good-bye to rehab and hello to Assisted Living with a Home Health Care Provider. He was SO happy to be able to sleep in his own bed again. He got used to using the walker for trips to and from the bathroom, but most of the time he liked to sit in the old wheelchair (even though it was too small for him) to watch TV. This facility uses pendants to be worn at all times (even in the shower) and in addition to having a button that can be pushed to call someone, they have fall detection technology. Unfortunately, the shower stall in these apartments are small with a molded seat at one end and being a big guy, he fell when he tried to shower by himself. So, instead, he decided to not shower and to wear the same clothes day in and day out. Because of the level of care needs determined by the assessment, Dad was given an assisted shower date (usually twice a week, but they relented to once a week in his case).
Some people are better together and some people are better apart even when they love each other. I learned this from watching Mom and Dad during the month that it took to get the 2-bed/2-bath apartment ready.
I’ve already stated how much improved Mom became while Dad was in rehab. On the down side, she became aware of how much she was not remembering while she was on her own and it was upsetting to her.
And Dad, while he claimed to hate being in rehab, did receive a great deal of attention from the staff and was in a better mood once he became accustomed to the place.
The experts tell us that any change will cause a decrease in the cognitive abilities in a person with dementia. We expected to see that in Dad after this move. But a remarkable thing happened… he gave himself a purpose for being there. He was assigned a seat in the dining room with another man who was all by himself. The man either had trouble talking or chose not to talk and Dad created a story for himself (we never found out if it was based in fact) that the man had worked at the Union Pacific like Dad. An instant comradery (on Dad’s side) and the job of being this “lonely” man’s friend.
The home health staff made regular, scheduled visits and the activity helped Dad’s mental abilities. When Cousin visited, he received her full attention. The same with every visitor: Dad was the center of attention.
There were things that Dad did not like, of course. He fell in the shower when he tried to circumvent the supervised shower days. He cut his foot in a peak of anger and luckily I was visiting later that day and called a nurse to deal with it (he would not). He was sure that Mom was doing badly without him there to watch over her and so called her multiple times a day. Dad also stopped taking his shoes off when he went to bed because when the “pill ladies” came in the early morning, some of them tickled his feet to wake him up and (as I mentioned previously) he really hated that.
Regarding Wheelchairs and Walkers
It must be human nature to be lazy. From my own experience, I know this to be true, LOL. For example, I’ll get a pain and go to my chiropractor and ask what I should be doing to prevent the pain and inevitably he will tell me to do the very thing that I was doing when I developed the pain (although on the rare occasion, the pain is caused by doing what I’m supposed to be doing but doing it incorrectly). In short, activity is necessary for health.
Dad decided he liked moving around in the too-small wheelchair rather than work at using the walker. Unfortunately, he used his long legs to pull himself around and he insisted on wearing dress shoes with black heels which dug in to the nap and left black marks. When he asked for a correctly sized wheelchair, we siblings wanted to make him happy and comfortable and did the research about making this happen, which included getting his doctor to sign off on it so insurance would pay for it.
The doctor did not sign off on a wheelchair because he wanted Dad walking and using the walker to keep his activity level up. Since the wheelchair was causing sores, we removed it and Dad had no choice but to use his walker. He was not happy about that, but resigned himself to it. By the way, Dad’s walker was an older, more stable model (no wheels, no brakes, no seat) that was good for his situation. It folded which made taking it on trips very easy.
Did you know that physical activity increases mental capabilities? We did not originally, but saw plenty of evidence that this is true as we experienced the ups and downs in our parents when it came to being on physical, occupational and speech therapy and then off of them. (I suggest you get familiar with those therapies… they are not what I imagined they would be from the titles.)
Mom also expressed an interest in getting a wheeled walker (the kind with brakes and a seat) like most of the people used at New Cassel. But then she started exploring and walking the gardens and forgot that she asked about it. She was certainly confused when Sister visited and offered to help her find one that she liked. We did not even get to the part about asking her doctor.
Moving Mom and Dad
As you may recall, in addition to the daily needs of Mom and Dad, we siblings were continuing with getting the house emptied and sold. Which was fortunate because we still had access to stuff at the house when Dad thought of something else he wanted to keep with him.
We had about a month to get ready for the move to the 2-bed/2-bath apartment. The same movers that we used initially were (thankfully) available for this move. They had no problem coordinating things so that the furniture etc. from Dad’s room were shifted upstairs at around the same time that the furniture etc. from New Cassel were installed in the new apartment.
During Sister’s visit a couple weeks before, she had hauled the matching dresser and vanity/desk to Dad’s apartment and put together some lovely photo collages of the things and people he loved.
The apartment was bigger than the one at New Cassel and since both Mom and Dad had their own rooms, everything fit beautifully. It really does help to measure everything and play with layouts on graph paper (or in the computer) ahead of time.
Brother and I were available to be in town for this move. Having done this together before, we had a good handle on where our strengths lay and it was easy for us to work with Mom and Dad about what they wanted to go where.
Having your own room is really helpful. Dad wanted lots of things on his walls that reminded him of the things he had done, his hobbies, and his friends. Mom wanted only a few photos of family on her walls.
Luckily, Mom’s room was HUGE and there was room to make a small seating area around the new TV that Dad had in the apartment the previous month (the big TV being in the living room). It is also nice to be able to watch what you want to watch and have control of a remote from time to time.
We added a clock to each bedroom that shows, in addition to the time, day of the week, whether it’s morning, afternoon, evening or night, and the date (month, date, year). These have been very helpful because it’s hard to keep track when all the days seem the same.
When we left after getting Mom and Dad settled into what we hoped would be the last place they would have to move to, we were optimistic that they would regain some level of interaction with others and participate in activities, etc. We hoped that the move would not trigger a substantial dip in their cognitive abilities.
Our hopes were soon dashed in regard to both Mom and Dad’s levels of dementia. There are studies that dementia risks are higher if your spouse has dementia; just as the staff pointed out about why it would not be beneficial for Dad to be in Memory Care (yet). Mom and Dad both declined immediately after moving back together.
Dad was still getting physical therapy and Mom tried the exercise classes, but it was only a matter of weeks before Dad could decide if he wanted to continue: he chose not to; and Mom forgot about the exercise class. The lack of physical exercise was definitely a contributing factor to their decline.
Additionally, the new apartment meant eating in a different dining room. A smaller dining room where everyone already had their seats picked out and that left Mom and Dad eating alone. Dad no longer had his purpose regarding the nice man who didn’t speak.
The Honeymoon is Over
What seemed like a great solution turned out to be a really bad idea. Mom and Dad fell back into their bad habits: Mom sleeping most of the time (“I enjoy sleeping.”) and Dad in front of the big TV in his recliner. No effort on their part to participate or enjoy the entertainment provided by the facility, the outings, the activities.
Mom did not want to have to take care of Dad. We promised that she would not have to, that all she had to do was call for the staff. But life is not as easy as that. Dad needed more help than even he realized… with little things that didn’t seem to justify pressing the button and waiting for someone to come. So Mom, ever the dutiful wife, did what she had always done… what Dad needed.
Dad fell again, but they didn’t call for help. In fact, neither of them were wearing the pendants that this facility provides and so the staff didn’t know of the fall until one of them saw a bruise on Dad’s wrist. (From then on, everyone reminded them to wear their pendants at all times.) He would often not know where he was living, muttering about doing what he was told so he could get out there as if he was still in rehab.
Siblings and Cousin went back into gear! We compared notes and discussed coordinating visits in addition to calls to Mom and Dad. We nagged, we cajoled, we enlisted the help of the staff who were happy to do what they could: they knocked on the door and announced activities, they encouraged participation in events (actually succeeded in getting Mom and Dad to ride on their float in a local parade), they even rearranged the seating in the dining room so Mom and Dad would have other people to interact with.
Unfortunately, the old saying about leading a horse to water is still true… you can’t force it to drink. Mom and Dad were still able to make their own decisions and, therefore, no one could force them to be active. Dad even complained about having to sit with other people and set himself apart which forced Mom to go back to sitting with him.
Staff and family encouraged Mom, at least, to spend time away from the apartment so that Dad’s dementia and the effect of his negativity would be minimized. Instead, Mom retreated to her bedroom to sleep and watch her own TV.
We even considered hiring a companion to come in to visit with Mom and Dad at an hourly rate once a week (or whatever) who would accompany them to activities as an added incentive. Before we progressed with that idea, I contacted the local Catholic Church to find out if they had an outreach program. It turned out to be the church that came in to Mom and Dad’s facility once a week to provide mass and communion. They were happy to see if one of the parishioners would be interested in visiting with Mom and Dad on a regular basis. An appointment was made and the gentleman came by and according to Mom they had a nice visit, but no further visits were scheduled because Mom and Dad couldn’t understand why they would want to visit with someone they didn’t know. Needless to say, we scrapped the companion idea.
All too quickly, the wonderful things about the new place were forgotten and the excitement wore off. No amount of reminding helped. The new facility became an unpleasant place to my parents because they created that environment for themselves. Suddenly, there was never anyone around when they needed them. The pill ladies were coming in the middle of the night. The food was horrible. These are just a few examples. ALL of these complaints were followed up on and all of them were proven to be fictitious.
At least we were able to improve the meal situation. It turned out that one of the residents decided to sit with Mom and Dad. We only learned about it when Mom complained (yes, the unthinkable: Mom complained) about how the woman they referred to as “Mother” would talk constantly, try to “help” them by salting/peppering their food, and generally be annoying. So I contacted the staff and it turns out this poor woman has moved herself from table to table and no one wants to eat with her. I met her during a visit and she was deeply unhappy and spreading her negative attitude everywhere. Mom and Dad were repeating practically word for word all the things that this poor woman was saying about the facility. I don’t think they were even aware of this.
We asked the staff if it was necessary that Mom and Dad eat in the little dining room. After all, Dad really missed eating with the fellow in the big dining room… could they be shifted back to that table? Yes, the staff were fine with that solution. It didn’t solve everything, but the level of negative talk diminished a bit and Dad had a purpose again.
Mom had talked about getting a walker while at New Cassel, then she started walking more and there was no further discussion. After a couple of months at the new facility, she started talking about getting one again. She did not remember talking about getting one previously and this is the seesaw of dementia.
The next time she brought it up, I was visiting and we were chatting with the staff in the office. They told us not to bother buying one because they had several in their storage area that we could use. They sent a note to Mom’s doctor about prescribing the walker so the insurance would cover the physical therapy people who would work with Mom to find the best fit/solution for her situation (and also so it would cover the cost of purchasing a walker if it came to that).
Remember what I said about time being squished? I often wonder if that is why things are forgotten, events get squished with the time. I mention this because a few days later the physical therapy people arrived to help Mom pick out her borrowed walker and she did not know why they were there. Why did they think she needed a walker?
Being the accommodating person she is, she went with them to pick out a walker. Then they came back every few days to check on her progress with it. The kind with wheels, handbrakes and a seat turned out to be inadequate for Mom’s needs; so she was switched to the sturdier kind (like Dad’s) and that worked better. The physical therapy people also did exercises with her and that helped so much that after a couple of weeks, Mom once again wondered why her doctor would prescribe a walker for her? Unlike Dad, she was not required to use it all the time. So she ended up using it on the long walks to the dining room. (Eventually, the physical therapy came to that point where they ask if you want to continue even if it doesn’t qualify for insurance coverage and she terminated it.)
Mazda Van in the Parking Lot
As I mentioned early on, Dad relinquished driving to Mom when they were going somewhere together. He still drove the old (second) van on his own, but not very often. When they moved to New Cassel, Brother and Sister hooked a U-Haul trailer filled with stuff to keep in the family to the old van and drove it back to the East Coast where the van would be sold. The Mazda van went to New Cassel in its own reserved parking spot even though we hoped they would not use it. Mom drove it occasionally but by the time she moved to the new facility, she said she was ready to stop driving totally.
We siblings discussed selling it in the auction of house contents, but decided that it would be handy to have it for our visits because both Mom and Dad were used to getting in and out of it. A rental van is not always available and they tend to be higher off the ground than the Mazda.
The Mazda was parked (not a reserved space) out of the way in a spot designated by the staff at the new facility and the keys left in the apartment. We intentionally didn’t say exactly where it was parked. After some time, Mom forgot that she decided to not drive anymore and asked us to tell her where it was. Oh dear.
Not long after this Brother discovered that the Mazda registration needed renewing. I was visiting Mom and Dad so the three (3) of us had an adventure going to the Department of Motor Vehicles in the Mazda van. Mom would get her driver’s license updated with the new address, Dad would get a State ID to replace his (now defunct) driver’s license and I would be their legs and chauffeur. I was hoping Mom would not pass the eye test and basic questions, but she did and so was issued a valid replacement license. Dad griped (are we surprised?) about not being able to get a new driver’s license.
We arrived as early as possible on a Wednesday in the middle of the month to avoid as much crowd as possible. Since they no longer lived in the city, the DMV was for the entire county and still was not nearly as busy as I expected it would be. We were in and out in under an hour. (Did you fall over? Ha Ha.) We made a couple of stops, but neither Mom nor Dad were interested in doing any kind of outing and we headed back to the apartment.
Then out of the blue, Dad decided he wanted us to sell the Mazda. So, being dutiful siblings, we looked into it. Do we drive it to one of our cities to sell it? Do we list it ourselves, where it is? Who is going to be able to meet people where it is? It is amazing how many things you have to consider when you are doing things long distance. After all, it is not fair to assume that Cousin would take this on. That is a large commitment of time and energy. And, then Dad forgot he told us to sell it, and wanted us to store it in Cousin’s garage. Oh dear – never mind being an imposition on Cousin. Sheesh! We decided to just let the whole issue fade away.
Next thing we know Mom has decided to drive the Mazda and take Dad on an outing. Mom only hit the curb once and they made it to the store a block away and back without further incident. However, both were totally exhausted from the outing and they both decided it was time to sell the Mazda. (Thank goodness for guardian angels.)
A New Year and Changes
The next months went by without much incident and the Xmas holiday visits were staggered to maximize personal interaction with each of us. We were each using the Mazda during our visits so selling it wasn’t in the forefront of our minds.
I’ve said before that Dad was a big guy. He also liked things HIS way and was manipulative about getting his way. I mentioned at the beginning of this story that Dad’s fits of anger had increased in number and amplified as his dementia revealed itself. It was a year to the day from when we visited New Cassel that Dad had the worst outburst that we knew of. Cousin had gone to visit them for the holidays and Mom was not feeling great so she sat with her in her room and they chatted. Dad suddenly burst into the room ranting and banging his walker on the floor as emphasis. It scared Cousin enough that she decided to leave and come back another day. We assume that Dad was upset that Cousin did not come see him first. Dad had never been a physically violent person and this outburst, while upsetting to all the rest of us, did not surprise Mom at all. The physical and emotional toll of dementia is an equal opportunity disease on everyone it touches.
In January 2018, Mom asked me to visit right away (this was unusual) and so I drove up the next day. She had been feeling off for a few weeks and while I was there she fell, hit her head and bruised her left hand. I was able to see the staff in action (very impressive) and I felt completely useless. Since she hit her head, we decided a trip to the Emergency Room was a good idea. She felt up to riding in the Mazda, so I drove us there instead of getting an ambulance. Luckily, she had no concussion and her hand/wrist was not broken. She WAS dehydrated so they pushed fluids and gave her oxygen. Did you know that means they put a compression “garment” on the saline drip bag that actually “pushes” the amount of fluid entering your blood vessel? That was news to me. Anyway, yes, another UTI which explains the previous couple of weeks of poor balance, etc. She also ended up with a splint to protect her wrist/hand while it healed. (Within the day she did not understand why she was wearing a splint.)
Ten days later (a Saturday), Dad had a stroke as they sat down to lunch in the dining room. Once again, the staff handled it beautifully. Mom travelled in the ambulance with Dad and Cousin met them at the local Emergency Room. Dad was aware enough to agree to the recommended treatment while they determined if more invasive measures would be required meaning a move to a different hospital. The clot was stubborn and did not break up so an ambulance took him to the big hospital. Mom went with Cousin and Cousin’s Daughter (CD) joined them. Brother called me and I got on the road immediately. By the time I arrived, Mom and Cousin and CD were back at the apartment. Dad’s arteries were too hard and clogged to do the simple surgery originally hoped for so the hospital staff were making Dad as comfortable as possible and tests would be done the next day to help determine courses of action.
The next days were tense. Mom and I got to the hospital about noon on Sunday (no sense going earlier because of the testing they were doing had Dad away from his Intensive Care room). He recognized us and while his speech was distorted, he was as coherent as he had been. He had no control of muscles on the left side of his face and torso and very little in his left leg, with no feeling in his left foot. He was on an IV and was catheterized with his right hand mittened and restrained because he did not understand that he should not pull the tubes out. Unable to swallow, no food or drink was allowed.
We met with the doctors on duty and the recommendations were surgeries designed to prevent future clot/strokes because there was nothing they could do about the current one due to the condition of Dad’s arteries. I asked what would happen if Dad decided not to do those surgeries and the doctor looked confused that I would even ask that question. There was still an MRI scheduled and then the doctors would meet with us again (including Brother via FaceTime) on Monday. Brother and I discussed Palliative Care and he started looking into that option.
The stress on Mom was observable. After the meeting with the doctors and Dad was taken for the MRI, we left. I’m sure some people would be horrified that we did not stay; but with Dad’s dementia creating a “reboot” every few minutes, it was exhausting to say the least. We could not help Dad’s situation, but I could help Mom’s.
Mom and I talked that evening about how the medical people were focused on fixing a problem and keeping people alive. And how they see stroke patients often… where we saw Dad as being horribly disabled with low quality of life, to the doctors and nurses Dad was in pretty good shape, all things considered. We also discussed what changes would likely be required if Dad was to have full nursing, full-time care. We discussed many things and the one definite thing Mom knew to be true for her was that she did NOT want to be in the same facility as Dad. It was too hard for her and she felt guilty about feeling that way.
The Monday meeting was moved to Tuesday due to a snow storm depositing nine (9) inches of snow. The delay provided time for full evaluation of Dad’s situation AND for Brother to contact the palliative care people at the hospital who agreed to attend the meeting on Tuesday to help us coordinate an holistic approach to moving forward with Dad’s best interests as the goal (we were blessed in this, because many hospitals do not provide this service). I was able to speak with the SilverRidge staff to find out what options were available on their end including hospice if that was necessary. Like many facilities, SilverRidge contracts with an outside Hospice Agency so that people who choose to can stay in their apartments until the very end. We were able to ask the questions that those of us who have never experienced hospice need to ask. The Palliative Care team reached out to me and we also discussed hospice options including at the hospital and a special facility for hospice patients only, assuming they would have an opening when we needed it.
Thankfully, Mom and I were able to get to the hospital early for the meeting on Tuesday. I contacted Brother via Facetime first to be sure the connection would be sufficient and that gave Brother the opportunity to see Dad and talk to him privately. The Palliative Care team arrived before the doctors which gave Brother (with Mom and me) the opportunity to also talk with them before the meeting. Considering the attitude of the doctors initially, we were surprised that they did not push us to decide for Dad to go to rehab. They explained Dad’s condition to us and also expressed that while rehab could be done, they did not expect any significant improvement; in other words, Dad could live, with a feeding tube, in his current condition for the rest of his life.
Throughout the discussions (both before and during the meeting) Dad had moments of clarity when he was able to express very clearly his wishes in front of all of us. Despite the partial paralysis in his face, his speech was understandable by all of us. He did not want a feeding tube, even temporarily. He did not want to go through rehabilitation. He was prepared to face death. And so, it was our combined job to see to it that Dad’s wishes were followed.
Immediately following the meeting, the information in the room was changed to palliative care only. Which means to keep the patient comfortable, period. The IV was removed. A social worker was sent to meet with Mom, Brother and myself about our choice for hospice. We already had decided that it would not be in the hospital, our first choice was the hospice facility but there were no openings. Dad was OK with going back to his own bed in the apartment and so we contacted SilverRidge to set up his hospice experience there. And, thankfully, it was made very clear to us that Mom would not have to do anything but be there or not, as she felt comfortable. Did you know that the hospice staff cares for the wellbeing of the family members as well? The entire experience was new to me.
The ambulance would arrive with Dad at or around 10:30 am the following day (Wednesday). This gave SilverRidge time to get things in place. They wanted to bring in a special bed, but we had promised Dad he could be in his own bed; so the staff searched for extra sheets and such that would fit his queen size mattress and lots of pillows for propping him however was most comfortable. This was in addition to the usual supplies as you might expect for a bedridden patient.
Sister wanted to be there and was able to get transport to arrive on Thursday.
Dad’s transport arrived as expected and it was a bumpy ride which had Dad unhappy. I promised he would never have to do that again and he said “GOOD” and that was the end of that. Unfortunately, the staff was not able to make him comfortable in his own bed no matter how many pillows they used; so a hospital bed was ordered after all (with Dad’s agreement).
It is important to check the paperwork no matter how much confidence you have in the people and facilities involved. When the hospice people arrived and were working out what medications to have on hand, we discovered an error that showed Dad COULD swallow when he COULD NOT. There was also no information that palliative care had been started and so they wanted to give Dad medications he no longer needed or wanted. We sorted that out quickly.
Dad was Catholic. The last sacrament a Catholic receives is the “Anointing of the Sick”. We had tried to have it administered at the hospital, but somehow the communication there was lacking. Once again, I reached out to the local Catholic Church. The priest and the lovely outreach lady arrived on Wednesday afternoon while Dad was still coherent. Dad recognized the priest and spoke very clearly to him, remembering that he had been travelling. (Those moments of clarity are such a surprise.) The priest offered to hear Dad’s confession and then began the last sacrament. It was lovely. I did not know the responses, but Mom did and the outreach lady was well practiced at them. Dad was able to respond a bit… he had recently received his first dose of comfort meds (a pain killer and something for anxiety, both administered through the inside of the cheek). After the ceremony, Dad seemed to relax fully. It was as if he had performed the last requirement in life.
While Dad was not able to swallow, that did not mean he could not have his mouth swabbed with whatever flavored thing he wanted because we were not concerned with fluids travelling down into his lungs instead of his stomach. So, they staff made sure there was Mountain Dew, ice cream, and coffee handy for the purpose of swabbing his mouth when it felt dry.
At his age, Dad didn’t have many friends left alive, so there was really only one person to contact outside the family. He was able to visit and say his good-byes. Likewise, the caregivers come by as their schedules allowed. It amazed me how much love these people had for that cranky old man who always made their jobs so hard. The lady who supervised his showers asked for his electric razor and shaved him because she knew he did not like to have stubble. She offered him a sponge bath and he was OK with that because that meant he didn’t have to get into the shower.
Mom and I were left to watch all the proceedings and simply interact as we wished. It is surprising difficult to do little.
The hospital bed arrived in the evening. By then, Dad was overwhelmed by the pain killer and snoring soundly, which was good because there was furniture moving to be done and assemblage (noisy). Once they had Dad shifted to the new bed (he did not wake even during that), his bed was dismantled and all the ‘extra’ furniture was moved to an empty apartment for storage. I have to say again how amazing the staff were during all of this.
Sister arrived on Thursday. I picked her up at the airport which gave us a chance to discuss things that were best said privately. After she had a chance to see Dad, we were able to take Mom to lunch because one of the lovely staff nurses had volunteered to sit with Dad in our absence. I left after lunch and headed home for a much needed break after saying good-bye to Dad. It was a bit overwhelming for me even though Dad was sound asleep; knowing it was the last time I would say good-bye and I love you to him. I had been doing well to hold myself together until that moment (too much to do to get emotional).
Dad left before dawn on Saturday, January 27, 2018.
Sister took on the responsibilities of helping Mom arrange for the mortuary, funeral mass, etc. This worked out well because she was the only one of us siblings that continued on in the Catholic Church.
Mom and Dad had purchased cemetery plots years before. But it took some digging to figure out if they had also made any other arrangements… they had not.
I didn’t have first-hand knowledge of what was required regarding preparing for the funeral, but that is where research comes in handy! We made a list of what decisions are common and we each contributed as best suited the situation.
Sister and Mom decided on a mortuary and what Mass cards, etc. would be needed, that the visitation would be open-casket and picked out the casket. They contacted their Parish of 57 years to schedule the Funeral Mass. They also chose a restaurant to host a luncheon after the internment.
Dad had not told us what to bury him in and after some discussion, we decided he would like to wear something airplane/pilot related and we included a banner that said “I’d Rather Be Flying”.
Brother wrote the obituary. Nephew (Brother’s son) created a slideshow for the visitation.
Mom contacted people who should not find out by way of the obituary.
We were pleasantly surprised at the number of people who came to the visitation at the mortuary. Considering how isolated the parents had been in recent years, we thought it would be a very small number. Many good memories and laughter were shared. The Mass and internment the following day were pretty standard and also well attended. Unfortunately, the priest didn’t really know Dad and so the eulogy was lacking and not entirely correct. Luncheon was lovely, lots of people, great food.
And so Dad was laid to rest. Mom, on the other hand…
A Place for Mom
As soon as we knew Dad was going into hospice, we had to start thinking about where Mom would live after he was gone. The financial situation would change without Dad’s pension and she certainly would not need a two-bedroom apartment anyway.
As you may recall from the beginning of this writing, Brother and Sister both live in the Washington D.C. area. We had discussed the possibility of the parents moving there originally, but they were both against it because they loved living in Nebraska.
Now that it was just Mom, we all knew she would be better off close to more family members. Cousin is a great person, but she is just one person; whereas, in D.C. there would be many more people to visit and help Mom. And so, while we dealt (in each our own way) with Dad being in hospice, we started talking to Mom about her choices after.
For my part, I told her that I am not SO jealous as to ask her to move to my area and have just me around when she could move to the siblings’ area and have all their families around as well. In other words, don’t use me as an excuse for not moving to D.C. Sister agreed to gently encourage her to move.
Sister-in-law had found a facility A MILE AWAY from their house called Chesterbrook that seemed idyllic! She had toured it with a friend (for that friend’s mom) several months before. Brother toured it (while Dad was in hospice) and found that it compared favorably to New Cassel (which was where Mom had WANTED to live). He scheduled a Facetime session with Mom and the administrator for Chesterbrook to plant the seed about moving.
I read Brother’s email to Mom about Chesterbrook and she worried about not being able to see her friends and we discussed that she hadn’t made an effort to see friends for the last year (at least) and that telephones work on the East Coast as well as in Nebraska. We talked about how she had come to dislike living at SilverRidge. We got on the internet and looked at the Chesterbrook website; how they go on lots of outings, lots to do in D.C. Then at Goggle Maps to see how close it is to Brother and that there is a beautiful park adjacent to it.
She agreed it wouldn’t hurt to just talk with the lady as part of figuring out what to do next.
The call went well and Mom was assessed by phone as level 1 (due to medications, we think)… good news! They were able to look at photos of the facilities. It is smaller than New Cassel and also smaller than SilverRidge so not so much walking (one of the ongoing complaints everywhere).
Mom decided she was OPEN to moving to Chesterbrook but wanted to see it first in person before deciding. So Brother did the paperwork to hold a room for her to occupy as soon as she passed their physical exam et al. (Does this sound familiar, LOL?)
A plan was made. Since the family were going to be in Nebraska for the funeral, we would all work together to get Mom’s things packed, family items distributed and furniture etc. into a Rental Truck to drive to Virginia with Mom as a passenger in the Mazda. If she didn’t like Chesterbrook, they could always drive her and her stuff back to Nebraska. But we were pretty well counting on her liking Chesterbrook primarily because she would be getting SO MUCH MORE attention than she did in Nebraska.
Regardless of if she moved to D.C., she was moving out of SilverRidge and so notification was provided as required regarding the move out date.
We looked at the size of the new apartment and determined how much of the furniture etc. it would hold. Sister then contacted local places to donate what the rest of the family decided not to keep.
It was all just meant to be. Exactly a year to the date of the move out of the house, Dad moved to his final resting place. The following day we packed up Mom’s stuff, the stuff that was going to family members and watched the rest go to someone who needed it. The next morning Brother drove the Rental Truck and Sister-in-Law drove the Mazda Van with Mom as a passenger from Nebraska to Virginia (over the course of a couple days).
Mom liked Chesterbrook and so that became her home. (February 2018)
Same As It Ever Was
We had pretty high hopes for Mom at Chesterbrook. The food was delicious! The dining room was arranged so that each resident got a tray and walked past the food displayed cafeteria-style. So in addition to the weekly published menus, they could SEE the food before they had to decide what they wanted to eat. This aids in the decision process and whets the appetite. Volunteers carried the tray to the resident’s choice of seating location and fetched drinks or whatever. The best meal setup we had experienced yet. Of course, meals could also be delivered to the room as needed.
The apartment was big enough for what she wanted around her which was less than we expected, so some of what went with her remains in storage in the closet… just in case she changes her mind. Sister-in-law found an excellent doctor that Mom liked and who was agreeable to letting some of her issues just be instead of insisting she fix them. The biggest hurdle was the cultural change from the Midwest to the East Coast regarding the large level of diversity of people. Not that Mom was prejudiced, she simply wasn’t exposed to many people with different skin colors, accents, etc. in Nebraska; so she noticed how many people were different from herself and it was a bit overwhelming at first.
It didn’t take long for me to have feelings of being left out. Mom had long been my resource to learn what was happening with my siblings’ families and now that her memory was leaving her bit by bit, she had trouble keeping up with that role and it obviously bothered her. So, I broached the issue with Brother and Sister and asked for weekly emails to keep me informed about their interactions with Mom, PLUS what was going on with them and their families. This way Mom wouldn’t have to remember anything and if she DID but stumbled a bit, I could slip the troublesome word or event into the conversation so she wouldn’t have to struggle with it. They agreed and we settled into the weekly call routine between myself and Mom supplemented by those emails about each previous week. They were IMMENSELY HELPFUL! Also, like the other facilities, Chesterbrook has a monthly activities calendar that I was able to refer to during conversations.
Of course, nothing is the same as being there… so while getting photos of everyone spending time with Mom is wonderful, it really brought home how difficult being the long-distance relative is. I thought I understood how my siblings felt not being able to BE WITH the parents, but I was wrong. No wonder so many people try to compensate absence with material things. I wanted to send Mom stuff so she would know I was thinking of her, but I also know that Mom doesn’t want more stuff. So I made travel plans for her birthday week and dealt with my feelings of inadequacy (which were illusions anyway).
Brother and Sister also slipped into routine visits (in addition to doctor appointments, etc.) with Mom both at Chesterbrook and away. Grandkids didn’t necessarily visit routinely, but did visit regularly.
Mom made an effort (at first) to try some of the activities at Chesterbrook. She used to love to play Bridge but had trouble playing up to the standard she remembered living up to in the past… so she stopped going to that activity. The same thing happened with the knitting group.
Her first apartment had a lovely view of the woods. Yes, first apartment because Brother discovered that she was eligible for a reduced rate that applies to a few specific units* and since saving money matters when you are on a limited income, and Mom liked one of the apartments available, she was moved to a second apartment. This one gave her a different view, which she was happy about because there were just too many trees outside her window for a person used to the wide open spaces of the prairies. LOL. From the second apartment, she was able to see the tennis courts of the school next door and really enjoyed watching the kids.
*It turns out this was because Brother had been doing all the legal/financial stuff from his location for the previous year and Mom was technically a resident immediately because of it. Otherwise, she would have had to establish residency before being qualified to apply. I highly recommend checking that kind of thing out… it saved Mom $500 a month!
A few weeks after the move, Mom once again fell. She wasn’t hurt this time but, as we have learned so well, a fall often indicates a UTI from dehydration. And we learned, once again, that Mom was avoiding drinking to keep from having “accidents” with her pads. Speaking of this issue… those pads produce a sickeningly sweet floral scent when wet and since they accumulate in the trash can, the whole apartment gets pretty smelly. Sister-in-law found a Diaper Genie to replace the trash can and it is great! The smell is contained a bit better and it uses a roll of plastic that is tied off to create the bottom of the bag instead of having to open the whole thing to replace bags. Highly recommended. Of course, the best solution would be to get Mom out of the incontinence pads and into incontinence underwear, but she would have NONE of it and she still made her own decisions.
The next fall was during an excursion and she simply tripped. But this one left her bruised and sore once she was back in her room. She hadn’t gotten a pendant for calling the nurses yet, and this fall prompted her and Brother to go back to having one. It also was memorable because the facility has a mobile imaging unit so they can take images without having to go to the emergency room. They do that during the night so the resident is calm. Mom really got a kick out it! LOL. We also learned that Mom wasn’t showering regularly and that lead to getting a shower aid and also to complaining about a shower aid, OY VEY.
I won’t recount every fall now. Suffice it to say that Mom fell regularly but didn’t require hospitalization. She needed to be drinking water and exercising.
Once the newness of the place wore off, Mom went back to staying in her apartment except for meals. Family members were able to get her out and about occasionally, but most of the time she wanted to sleep or watch tv or look out the window. My visit prompted a bit of excitement and we took one of the bus excursions which she seemed to enjoy, but even those days became ordinary.
How long could we nag, cajole, etc. without upsetting her? After a few months, we gave up. Without Dad to fill in the blanks, she got irritated at herself for not knowing the words she was trying to say, the event/program/whatever that had happened that she couldn’t articulate. She became unhappy (but the food was still good!) and started complaining that she should have stayed in Nebraska. That going back to Nebraska would solve all the problems. Mom would just as soon join Dad as anything else and that is one thing we cannot help her to do.
It really doesn’t matter where she is, she can’t remember how to be happy. She doesn’t remember her favorite foods and so she orders what one of us is having. What was her favorite cake? None of us remember and neither does she. As much as we DO know about her likes and dislikes, telling her elicits nothing more than “Really?” and is soon forgotten. I dread the day that she doesn’t recognize my voice. I know it is coming sooner or later. Is it wrong to hope that she gets her wish to move on before that happens?
A Final Entry
Eventually, the people who run Chesterbrook began contacting brother and sister about Mom's incontinence and her decline. The staff interaction was increased and Mom's underwear (and those pads) were removed completely and a supply of both day-time and night-time adult diapers replaced them. They helped her dress and checked throughout the day on her need to change to a new diaper.
After a short time (couldn't really tell you how long, probably about a month), the administrators told brother we needed to bring in someone ourselves, because the staff couldn't devote so much time to one person. Part of this was due to Mom "escaping". There wasn't anything to stop Mom from wandering away (that changed to a "buzz" to get in or out situation soon after this). Twice she made it out to the parking lot or down the driveway.
And so it was that Companion came to help with Mom. At first, Mom seemed to enjoy having Companion around. Companion had been at Chesterbrook working for another resident who had since passed on. Companion was with Mom 8am to 5pm, Monday-Friday (the Chesterbrook staff taking over nights and weekends), she kept her clean, did her laundry and kept an eye on her. Soon Mom was OVER IT. She did not like that someone was ALWAYS watching over her. She had little to no privacy. Companion was asked to back off as much as possible and she tried to do that.
I was able to go visit Mom (my second visit, in November 2019; the first had been in July 2018 for her birthday) and meet Companion myself. What a lovely person! Cheerful, upbeat... a joy to be around. During my visit I finally learned that the reason Companion was always watching Mom was because THAT WAS A REQUIREMENT as her companion. She had to be in eyesight in case Mom fell or worse and the only exceptions were when one of the family were with Mom. Poor Mom, she truly didn't have any privacy and there really wasn't anything we could do to restore some privacy and still keep her safe.
My visit lasted about a week and at first Mom was excited to see me and her spirits lifted some. After 3 days in a row of seeing me, I became part of the "usual" and she slumped back to boredom. I had not saved her. I had not taken her back to Omaha. She was unhappy. It was difficult to leave her that way.
In January of 2020, Mom once again slipped away (even with safeguards in place) and there was discussion about whether a full-time aid (as in someone lives with Mom 24/7) was now needed OR if it was time to move Mom to a secure, memory-care facility. Mom was clearly unhappy and openly telling people she would try to leave (which for someone raised to keep their feelings hidden, is a really big deal), so it was not entirely surprising when the suggestion of putting mom on anti-anxiety medication came up.
About anti-anxiety medication… There are plenty of reports of elderly people in facilities being overly medicated and that, I’m sure is true; however, sometimes medication is a blessing. Mom had decided some time back that she no longer wanted to take medications to prolong her life, so she had not had anything beyond the occasional aspirin/ibuprofen for several months.
The doctor (after examining Mom) told the siblings that Mom’s dementia had increased to the point where she could no longer make decisions for herself. The siblings broached the subject about a “happy pill” with Mom’s physician and she agreed that, in this case, medication could be very beneficial.
After looking into the logistics, costs and everything that goes into using a full-time aid compared to moving to a secure, memory-care facility; we decided to move her.
Sister and I each researched options with the focus being on memory-care and locked facilities. Very quickly (thankfully), sister found a small group home with Avalon. They convert a house in a residential neighborhood to support a handful of residents with a 2 full-time aide. There was a house with a room available a half-mile from brother and that became Mom’ home... 25 months after leaving Omaha.
At first, Mom thought we were moving her back to Omaha and was surprised at how quickly they arrived at the new place. That wore off very quickly and Mom started trying to walk away, but was unable to (thanks to the aides). I had flashbacks to when my Dad took his mother to live in the nursing home outside Omaha in the late 1970s. Just as we were instructed back then, the staff recommended that none of us visit for a couple of weeks to let Mom get used to the situation. That was really trying on brother and sister. They even (secretly) ended up removing Mom's phone because she would speed dial them at all hours demanding to be taken back home.
And then covid-19 hit. Everyone was in lock-down. In a way, it helped... because there was a REASON why no one could visit for 2 weeks, there was a REASON no one could take her out of the house. Visits were done at the sliding glass door using the phone to talk to each other. My phone calls didn't change, so it wasn't as hard on me and my visits with Mom.
Speaking of phone calls with Mom... that was a learning experience. There was no way of knowing one week to the next what would work to bring Mom into a pleasant head-space. I started asking the staff what her mood was before they handed me to Mom. I stopped asking any questions of Mom at all. Everything became a statement that Mom could either agree or disagree to. Some days she would be able to talk in full sentences; but those days got fewer and fewer. There would be days that we laughed together and days that I cried after I hung up. She would have surprisingly good moments and it was hard to not get my hopes up knowing that was an aberration not an improvement.
In November 2020, Mom's hip broke. Whether she fell and it broke, or it broke and she fell, is unknown. She was taken to the hospital and sister met her there. The decision to do a partial hip replacement was made so that she could sit with less pain; she was rarely able to walk by this time. Also by this time, Mom's reaction to any pain was minimal. After the surgery, she was taken back to Avalon house and both brother and sister (individually) were allowed to visit with her in her room (fully masked) while she recuperated. Their in-person visits boosted her attitude. Medically, the breaking hip brought about the question of hospice and was Mom now eligible? Did you know you have to be “eligible” to enter hospice? From the perspective of benefits available to the person, you do. And, yes, Mom became eligible for hospice.
Even being a hospice patient, Mom was able to receive the covid vaccine when it was available early in 2021. The weather got warmer, and visits could be made at a distance with the sliding glass door open. Brother, sister, and spouses got vaccinated and outdoor visits with hugs (everyone masked) became possible. Mom had surrendered to living in the house (or perhaps she forgot that she had ever lived anywhere else) and when she was allowed excursions, she enjoyed riding in the car to see grand and great-grandkids from her ‘carriage’ (window down: masked, window up: unmasked).
Sister would visit on Wednesday or Thursday, brother on Saturday or Sunday, and I would call on Mondays or Tuesdays. That is how it continued through most of 2021. The in-town family were able to gather as a group and take Mom to an outside seating restaurant for her 93rd birthday in July where she enjoyed her favorite sandwich: the Rueben.
It was about this time that the emails between my siblings and I started noting concerns about a faster/more obvious decline in Mom’s abilities. Our concerns brought up questions about end of life decisions and making sure we had everything ready and the way Mom had previously told us she wanted it.
Then we learned that Mom was not able to hold herself up in the wheelchair and the staff was attending her in bed (which meansthey had to leave the group to check on her frequently – this is a big deal). She had trouble closing her lips together to sip water from a straw. Mom was semi-responsive to visitors. She didn’t want to eat anything. It seems we were correct in our assumptions about Mom preparing for the next journey. Sister arranged for Last Rites to be given.
My last contact with my Mom was a blessing. The aid held the phone to Mom’s head so she could say “hello” and then put it on speakerphone so I could hear the aid talking to Mom when Mom couldn’t respond. I rambled about my life for a little while and then told her I didn’t want to keep her from one of her lovely naps, blew her a kiss, and told her I loved her. There was a pause and I heard the aid say “She can’t see you smiling” which started my tears and I quickly said “thank you for telling me that Mom is smiling” and said goodbye.
It was a week from when we learned Mom was being attended in her bed to the day she died. My siblings took turns those last few days sitting with Mom. Brother was with her when she left.
Then all the hurry started. Arranging for the crematorium to come get the body. Calling the people who shouldn’t learn about her death second hand. Writing up the obituary, getting into the newspaper back in Omaha and onto the website of the crematorium. Removing all her belongings from the group home, dispersing them among family or donating/selling them. Filling out the paperwork associated with finances, legal things, etc.
I can’t say how my siblings handled it or how they grieved. For my part, I needed to be busy and I am grateful that there were things I could do from far away while my siblings handled the things that had to be done in person. They seemed to find comfort in a last viewing before cremation; I could not have done that even if I had been there.
Eventually, the busy work was done. But this was during the time of covid and everyone had to travel to take Mom to Omaha. So we decided to delay a funeral/service/wake/memorial until warm weather in 2022. The plan is to have a Catholic mass for her, then a service graveside (her ashes will be put in the grave next to our Dad) followed by a meal. And the next day we will have a picnic where we can eat, drink, and merrily celebrate her life and how she touched all of our lives.
And so this chapter ends.