Weighing a Difficult Decision: The 'When' and 'Where' of Assisted Living Placement

Note:  The original submission below was titled, "When it is Time for Assisted Living."

As a spouse caregiver for my wife, Clare, who was diagnosed with young onset Alzheimer’s Disease (AD) in 2009, I have faced some very painful decisions.  Without doubt, until recently the most painful decision was about driving.  When I had my first discussions with Clare about how it was no longer safe for her to continue driving, we argued like never before ... amid many tears by both of us.  After our initial discussions, I realized that Clare was not going to stop driving without a lot of pressure from me.  Members of my spouse support group at the Long Island Alzheimer’s Foundation (LIAF) had prepared me well for those emotional discussions.  They told me that taking away the car keys was going to be a painful decision, but one I had to make.

However, no amount of support can really prepare someone for the crying and screaming of a spouse trying to fiercely hold onto a symbol of independence, especially when that spouse is in denial and still feeling that he or she can drive safely.  Although there are differences of opinion as to when someone with AD should stop driving, I feel very strongly that driving should end once there is an AD diagnosis ...  if not immediately, then certainly within a few months.  Once there is an AD diagnosis, it’s no longer a question of if it is unsafe to drive ... the only question is when.  As AD worsens, one’s ability to drive safely will become increasingly impaired, and no one can predict just when that impairment might cause an otherwise preventable accident.  Therefore, in my opinion, it makes sense to stop driving before people are injured or property is damaged, rather than continue to drive until an accident actually happens. 

When a loved one has AD, the caregiver must eventually decide when to take full responsibility for completing all routine household tasks, administering medication, and providing increased assistance with various activities of daily living.  Along with these decisions, when the caregiver’s need for respite time requires placing loved ones in day care programs, or hiring part-time home companions or aides, all can be very emotional times for caregivers.  They all were for me but, until recently, I still would still have said that taking away the car keys was the most emotionally difficult decision I’ve had to make as a caregiver.  However, as Clare‘s decline spiraled downward, I’ve since had to make another decision that proved to be even more painful than ending her driving days.  I decided it was time to place Clare in an Assisted Living Residence (ALR).  Without doubt, if I now had to describe the one most gut-wrenching and emotionally draining decision I’ve ever had to make as a spouse caregiver, this is it.

For many months prior to making this ALR decision, I was becoming more and more stressed due to Clare’s worsening impairment, especially her lack of any short term memory.  Her inability to retain any information led to two very frustrating behaviors.  I referred to the first one as “Groundhog Day” syndrome.  Over and over, Clare would ask me the exact same questions, totally unaware that she was asking me the same questions I had just answered moments earlier.  It became incredibly difficult for me to respond as if it was the first and only time she had asked me that question.  The second very frustrating behavior was a complete inability to carry out a simple one step direction because she would forget in a matter of seconds.  I would remind her of a simple procedure, such as to place food back in the refrigerator after eating, but she would always forget.

Cognitively, Clare was having increasing difficulties processing information.  Acutely aware of what was happening to her, and knowing there were fewer and fewer things she could still do successfully at home, Clare was constantly asking to “help me” around the house.  If I said no, she’d get angry and say things like, “There are so few things I can still do.  Please let me do that.  I can still do that.”  If I said yes, she’d invariably start doing that task incorrectly.  If I would correct her or ask her to stop so I could take over, she would say with anger in her voice something like, “Well, if you had told me to do that, I would have done that.”  Of course, I had told her to do precisely that, several times, but she just couldn’t process the information or remember what I had said. 

As her memory and cognition worsened, along with her aphasia, Clare was also starting to lose her thoughts midway through asking me a question or making a comment.  She also began speaking incoherently at times and I was increasingly unable to understand what she wanted to say to me.  I knew I desperately needed more respite time and, prior to considering an ALR placement, I gradually upped Clare’s time in day care programs.  She originally went once a week for 4 hours and that eventually increased to four days a week for a total of 22 hours.  Whereas I appreciated the additional respite time by myself, time spent with Clare at home was also changing.   Clare could no longer read easily or play her favorite word games independently, and she had lost interest long ago in piano, guitar, and other favorite activities.  Because she could no longer do anything independently, from the time we got home after I picked her up from day care until the time we went to sleep, all we did was watch TV together.  Often we watched the same repeat broadcasts over and over because, to Clare, her favorite repeat show was always “new” to her. 

Clare was now feeling tired all the time and her need for sleep increased.  If she didn’t sleep for at least 11 hours, it would be very difficult to wake her up the next morning in time to go to day care.  We would watch TV in our den starting at 4 p.m. every weekday, go to our bedroom before 7 p.m. to give Clare sufficient time to get ready for bed, and then watch TV in bed until 9 p.m. when I would turn off the sound so she could go to sleep.  On weekends, Clare would sleep for up to 15 hours, and then we’d sit and watch TV all day unless seeing friends or family.  Often when I would suggest that we take a walk or go somewhere, Clare would say she was too tired and preferred to just sit and watch TV.  So ... we sat and watched TV together.  Whenever I would leave her side for a few minutes to check email or to do something else, Clare would come to find me saying she was bored by herself or didn’t know where I was.

The worst and most frustrating effect of all these changes in our lives was that for the first time in our 46 years of marriage, matters of personal hygiene, dressing properly and selecting clothing appropriate for the weather, daily medication, eating, and a host of other issues were causing daily arguments and shouting matches.  We were arguing more in a period of several months than we had probably argued in all of our previous years of marriage put together.  I also noticed that things were starting to “fall through the cracks.”  I had so much on my mind trying to help Clare get through each day that on some days I’d forget to remind her about important matters.  All of these “falls” invariably led to more stress, and the stress led to more arguments.

That is when I started to think about whether the time had come for me to consider an ALR placement for Clare.  Instead of leaving our house at 9 a.m. for day care programs and picking Clare up in time to arrive home at 4 p.m., I envisioned that she would simply wake up in the ALR and have an even better quality day care program during those same hours.  I could then arrive at the ALR at around 4 p.m. and there would be nothing to argue about.  With the ALR responsible for all of the activities of daily living, and with no household tasks for Clare to “help me” with, and with no “reminders” I would have to give to Clare, I imagined that all of our time together in the ALR would be quality time spent hugging and talking and laughing.  We could even spend some of that time watching TV together just as we did at home if that’s what Clare wanted to do.  I envisioned “signing her out” occasionally so we could go to eat at her favorite restaurants, and signing her out on some weekends so we could spend time with friends and even take short day trips as long as her health would still allow for such activities.  The more I thought about the benefits of an ALR placement at this time, the more I knew I had to learn more.

I intuitively knew that Clare was not going to accept an ALR placement easily, so when I first spoke with Clare about the need to check out ALRs, I said that it was just so we would be prepared and know where she would go when the time came.  I said that knowing “the where” and “the when” were two different decisions.  Clare readily accepted that she will need to enter an ALR at some point, so she was okay with the decision to find “the where.”  When we did our retirement planning well over a decade ago, we discussed what we wanted to do in the event either of us would eventually need a high level of care.  We both agreed that we didn’t want live-in help and both preferred to enter into an assisted living facility or nursing home what that time came. As a result of those discussions, we purchased long term health care insurance to help cover eventual costs.  However, I’m not sure that a loved one with AD, whose brain still provides many lucent moments and who remains deeply in love with and dependent upon a caregiver, will ever be ready for “the when.”  Therein lies the source of the intense emotional pain for the caregiver who must make that “when” decision. 

I placed the “when” issue temporarily aside, and over the course of several weeks I did my research and selected six ALRs that I thought would provide Clare the best possible care and greatest opportunity to be happy.  Wanting Clare to be part of the decision-making process for “the where,” we toured facilities together and agreed upon the one we felt was best.  We then returned to that same ALR a second time for one more opportunity to observe residents interacting during their lunchtime and observe resident and staff involvement in various activities.  Still agreed that this was the best place, I returned to meet with the director by myself the following week, signed several forms, and gave a deposit to place Clare on a waiting list.  I left the director’s office, got into my car, and just sat there and cried for several minutes.  

I knew that by placing a room deposit, I was accepting that “the when” had somehow already arrived.  Intellectually, I knew that it was the right decision.  Emotionally, however, I still was not completely prepared to “let Clare go” and live apart for the first time in our marriage.  I cried a lot that day ... and for several days afterwards.  With two other women ahead of Clare on the room waiting list, the director said that a bed could be available for Clare in a matter of weeks, or the wait could be several months.  I was thankful that I would still have time to prepare myself emotionally for this new reality.

Writing this article more than a month after placing that deposit, I can now say that I feel emotionally prepared to place Clare whenever that room becomes available.  I am pleased that Clare is happy with “the where” and feels that the ALR we selected will be a good place for her ... even if she feels that a placement is not necessary yet.  However, her worsening behaviors and our daily arguments have reinforced my emotional acceptance of the need for such a placement as soon as a room becomes available.  I no longer feel “caregiver guilt” that all caregivers know so well when having to make emotionally difficult decisions that they know their loved ones do not want them to make. 

Just as with the driving issue, “the when” for an ALR placement is a decision that must be made solely by the caregiver because a person with AD has mental impairment that precludes objective participation in such a decision.  And just like the decision four years ago to take away the car keys, this ALR placement decision is in Clare’s best interests.  Even if things do not work out exactly as I had envisioned, I know that once placed in the ALR Clare will be in a safe and caring environment 24/7.  She will have highly trained and highly skilled people taking care of her.  Her daily activity schedule will allow her the socialization and mental stimulation she needs to keep her mind actively engaged in enjoyable activities.  She will eat nutritional meals each day and be able to maintain a high quality of life with dignity.  In short, she will receive all of the care I want her to have.

Will our nights alone feel lonely?  Yes.  Will our large house feel empty?  Yes.  Will we miss each other?  Yes.  But we will not miss those daily arguments, and we will not miss the stress caused by those arguments.  And I will not miss the stress caused by trying to remember all that I now must remember each day in order to properly provide for Clare’s needs. 

I cannot now imagine a decision more painful to make as a spouse caregiver ... but it is the right decision to make at this time in our AD journey.  Whenever I do receive that phone call from the ALR director telling me that a bed is available for Clare, I’m now as emotionally prepared as I’ll ever be to say yes.  It will be an incredibly painful and emotionally difficult day, but we will somehow get through it.   It is time for assisted living.

Published in care ADvantage, Fall 2013, Vol. 9, No. 2, pp. 10-13.  Access at: www.alzfdn.org/Publications/care_advantage/issues/ca_fall13.pdf