(Originally titled, “Tips to Ease the Transition to Assisted Living”)
In September, 2013, I placed my wife, Clare, in the dementia wing of an Assisted Living Facility (ALF). Her Alzheimer’s Disease (AD) had reached the point where she needed assistance with all but one of her Activities of Daily Living (ADLs). It was either an ALF placement or hiring 24/7 home health care aides, and we had long ago decided that in such an eventuality we would choose the ALF option. I fully realize that not all caregivers may be able to take the steps I took due to the condition of their loved one, the availability of assisted living facilities in your geographic area, or financial considerations. However, here are several suggestions based upon the steps I took as Clare’s 24/7 caregiver to ease her transition from our home to the ALF.
1. Divide the ALF placement issue into a two-step process. First select the “where” your loved one will go, hopefully well enough in advance so you are not rushed for time. Once this decision is made, the “when” will allow you to move forward without delay.
2. Select an ALF with a favorable wait list policy. At some ALFs, once you place a deposit and arrive at the top of the room wait list, your name remains at the top of the wait list until you agree to accept the room. You can pass again and again and still remain at the top of the list. However, at some ALFs we visited, if you reject a room when it is available, your name goes to the bottom of the wait list. If you place your loved one on a room wait list at an ALF with a favorable wait list policy, you will have more flexibility to select the “when.”
3. Prepare your loved one to accept an ALF placement. I fully realize that not all caregivers can have a discussion with a loved one about an ALF placement for a variety of reasons. But if your loved one is still highly verbal as Clare was and still is, you may be able to discuss such an important issue during lucid moments. I wanted Clare’s “takeaway” from our discussions to be what I referred to as the “half loaf” scenario. I reminded her that we had just celebrated our 46th anniversary and, until recent months, we were lucky enough to have the “whole loaf” ... a fairy tale marriage that was absolutely wonderful. We had rarely argued about important things during our marriage, but now we found ourselves arguing with each other every day. I would try to help Clare but she would insist that she could do this or that without my help. She’d yell things like, “Stop trying to manage my life. You’re treating me like a baby. I’m not a baby. I can do that for myself.” But, of course, she couldn’t do this or that by herself anymore. She’d shout at me, I’d get frustrated and shout back, and we both hated what was happening in our marriage.
So I told Clare that whereas her AD has prevented us from continuing to have the “whole loaf” anymore and our lives had changed dramatically, an ALF placement would at least allow us to keep that “half loaf.” The ALF would assume all of the daily responsibilities for her ADLs and that way there would be nothing for us to argue about anymore. I promised that I would visit Clare each day and with the ALF taking responsibility for her ADLs, all of our time together would be quality time. We both liked the idea of that “half loaf.” I reinforced that concept by reminding Clare how much she was enjoying her day care programs and the ALF would provide her with an even better quality day care program. I also reminded Clare that I would still take her out of the ALF from time to time to eat at her favorite restaurants and spend time with friends. Clare internalized the “half loaf” concept and that made all the difference in the world to her attitude and eventual acceptance of an ALF placement.
Although Clare had lost interest in virtually all of her former hobbies, she still loved listening to and singing along to music. Research has demonstrated that music memory seems to linger longer than most other memories for those with Alzheimer’s. Aware of the assisted living facility’s “Activities Calendar,” I knew that they had at least one and often two musical activities each day. So I timed our visits to allow us to enjoy musical programs before leaving to “leave a good taste in her mouth” so Clare would see that she would have enjoyable activities once she moved in. Once we listened to a singer guitarist whose songs from the 1960s were very familiar to both of us, and we sang along with gusto. Another time it was a singer with taped background music whose repertoire ranged from big band to Broadway show tunes. Again we sang along and the smiles on Clare’s face made me feel very happy.
4. Take a few days to move in. When I was notified by the ALF that a room was ready, I decided to spread out the move-in process over a three day period. I had already prepared a comprehensive packing list, but I wanted Clare to help choose which personal belongings she wanted to bring with her. I labeled all of Clare’s clothing and other personal items as directed by the facility. Then, with help from family and friends, over the course of parts of three days we moved in Clare’s clothing, jewelry, toiletries, etc. and placed everything where Clare could find it. We set out lots of picture frames on tables, placed a dozen plants around the room, hung quite a few paintings and posters, and even brought in her beloved rocking chair to make her room feel more “homey.” By taking several days to do this, Clare’s room made her feel more comfortable when she actually moved in. On each visit I also made sure that Clare participated in a musical activity before we left, and she enjoyed each activity. By having her room already furnished with many familiar objects from home, and by having enjoyed those musical activities, move-in day somehow seemed less abrupt than it might otherwise have been. This helped to ease a lot of the emotional strain and pain of that difficult day ... both for Clare and for me.
5. Once admitted to the ALF, be prepared to deal with “glitches” effectively. Clare made about as wonderful an adjustment to the ALF as her new home as one could reasonably expect. Within days she had made some good friends, she liked her aides, she enjoyed her program of daily activities, the meals, her room, etc. However, several “glitches” arose in those first few days and the Director asked me to be patient until he had the opportunity to sit down personally with all of the aides to review Clare’s needs with them. With three complete changes of personnel every eight hours, it took several days for the Director to do this. On some visits I’d notice that Clare wore the same clothing she had worn the day before. On some visits I’d notice Clare’s hair had not been shampooed. I obtained the Director’s email address and direct phone line and, for those first few days, was calling or sending emails on a daily basis to indicate needs to be addressed. Since I visited Clare daily, I was also able to sit down with the Director, his assistant, his superior, and the head nurse during those first ten days until all of the glitches were dealt with. In any large bureaucratic organization, there will inevitably be glitches now and then, so I know I must expect occasional slip-ups. But I will follow up immediately each time such glitches may occur. I also prepared a comprehensive list of questions for the Director to review with both daytime and nighttime aides to provide me with the information I needed to be further assured that Clare was receiving the quality of care I expected for her.
6. Complete other ALF-related caregiver tasks quickly. I wanted to minimize disruptions to Clare’s new daily routines so she could socialize, make friends, and experience different activities. I decided to visit daily during the same 3-5 p.m. time period, one in which she would not be missing any of her favorite activities. It also backed right up to dinner time, so separation is natural when I leave after bringing her into the dining room at 5 p.m. I had already scheduled various morning and afternoon doctor and dental appointments for Clare prior to her ALF admittance, so I rescheduled all appointments into the following month during the same two hour time slot when I visit with Clare each day. For those who have long term health care policies, it is also important to quickly initiate a claim with the insurance company and then follow through on completing forms and submitting documents that are required. Don’t let yourself get sidetracked because some documentation is time-sensitive. I also had to schedule appointments with personnel representing the insurance company to evaluate Clare with respect to eligibility for insurance coverage. Caregivers using Medicaid, or private payers without insurance, will also have notifications to make along with paperwork to complete and documents to provide.
7. If you decide to visit regularly, consider a backpack or carry bag. For the first few weeks, I wore a small backpack each time I came for my two hour daily visits. I kept a pad and pen inside to allow me to jot down observations or concerns to follow up on with the director, nurse, or some other person. I also kept a folder with copies of previously sent emails in case I needed to follow up with someone in person on any unresolved issue. Also in this backpack was a “staff list” I had made up so I could learn the names of Clare’s aides as quickly as possible and I referred to this list on almost every visit. The backpack also allowed me to conveniently bring in bulky picture albums or trip albums from time to time to refresh Clare’s memories of people or travels. A final item in my backpack was a copy of the “Daily Activities Calendar” so I could review with Clare some of the activities of each day. Sadly, on most days Clare was unable to recall anything about any of the activities, but sometimes this daily review led to a discussion. By Clare’s second month, a small carry bag replaced the backpack.
Some final words about an ALF placement: For most caregivers, placing a loved one in a setting outside of the home is the most difficult and emotional decision they will ever make as caregivers. The placement itself may also be a traumatic event for the loved one with dementia. Depending upon the cognitive level of the person with Alzheimer’s, a caregiver may or may not be able to discuss various aspects of this placement. And the person with AD may or may not be accepting of such a decision. I was very lucky. Clare knew, in her lucid moments, that it was time for placement.
In the course of the back-and-forth revision process with the editor, I had indicated that I was now faced with a new question: I had placed Clare in an assisted living facility ... so now what? The editor asked me to expand on my thoughts and I submitted this 1249 word “coda” as an addition to my original submission. This was printed as a separate column immediately following my article, under the heading ...
“You’ve Placed Your Spouse in Long Term Care ... So Now What?
Placing Clare turned out to be a complete “win-win” decision. She is receiving high quality care in a 32 resident lockdown dementia unit (“Reflections”) that is part of a large ALF. On most days, Clare has organized exercise periods twice a day ranging from zumba and yoga to walking, stretching, and fitness activities. On most days she has at least one arts and crafts activity and one music activity, and on many days she has two different musical activities ranging from resident sing-longs to listening to visiting musical entertainers. She participates in a wide range of daily activities ... balloon volleyball, billiards, chair dancing, various word and trivia games, and the list goes on and on. There are matinee and evening movies seen in a dedicated movie theatre room ... approximately 50 movie theatre fixed seats, complete with a popcorn machine! There are daily socials with different delicious snacks served each day, and the daily meals are of restaurant quality with at least half a dozen choices of entrees for each meal. And there are several outings each week using the ALF bus to take both Reflections and non-Reflections residents to see musicals in local theatres, to enjoy special meals at various neighborhood restaurants, and to visit local sites. One thing is for certain. Clare is now leading a very active life, physically and socially!
Prior to placement, it was very hard for me to make sure that Clare ate nutritious meals. On the four days each week when I brought her to day care programs (that provided me with badly needed respite time), more often than not Clare refused to eat breakfast and ate very little for supper. On the other three days, she ate poorly ... mostly ‘junk food’ when she ate anything at all. On those four day care days, I had to wake her after “only” 11 hours of sleep. When not going to day care, she’d sleep for 14-15 hours. Whenever I’d suggest we go for a walk, Clare would always say no ... she said she was too tired. She felt tired all the time, even right after waking up from 15 hours of sleep, and never wanted to do anything but sit in front of the television and watch the same TV shows, over and over, despite being unable to tell me what show she was watching or what was happening even while she was watching the show. That was her life.
Now, after being in the ALF for several months, Clare looks younger and healthier than she has looked in years. Friends who visit all agree. Now that she is exercising regularly, eating well (she now eats a full and nutritious breakfast, lunch, and supper!), and socializing with friends each day, Clare no longer sleeps more than 6-8 hours per night! She is up late gabbing with friends over coffee/tea/cookies in either the Reflections dining room or in her own room or one of her friend’s rooms, and she gets up on her own by 6:30 each morning to get going on her new day! When I visit with her each day from 3-5 p.m., she is always smiling and telling me how happy she is and that she has had a good day ... despite being unable to tell me about even one activity she participated in that day. She is never able to recall where she went on any outings ... not even if I arrive at the same time as her ALF bus returns and I greet her as she leaves the bus ... nor can she ever tell me about any meals. BUT ... each day when I visit she looks happy, tells me she’s happy, and the aides tell me she is eating well and is happily engaging in all of their daily activities.
These daily visits and positive reports from the aides and their supervisors have all helped to ease much of my initial sadness at placing Clare. I still have those occasional “dark moments” when my mind reflects upon my “living widowhood,” but I try to stay away from those dark places in my mind because if I dwell there too long I’ll spend my days and nights totally depressed ... and in need of lots of tissues. At this point, I really cannot say what the future holds for me ... a 67 year old man lucky enough to be approaching the 47th anniversary of what had been, until these past few years, a “fairy tale marriage.”
I try to fixate on the positive ... that even though Clare is sinking deeper and deeper into her AD, we still have “half a loaf” ... a few hours each day when we can hug, kiss, and just enjoy our time together. I love making her laugh and smile, and I love hugging and kissing her. She is and always will be the most special person in my life. I know that I will continue to visit with Clare every single day without fail as long as she still knows who I am, unless severe weather or some emergency prevents such a visit. I know that I will cherish those few hours we spend together each day even if I now must do the talking and carry on the conversation for both of us. I know that I will continue to cherish those times when I take her out to a restaurant by myself or with close friends.
But I also know that it is time for me to carve out a new phase of my own life, and as I make my recovery from recent hip replacement surgery I am looking forward to returning to previously enjoyed activities I had to place on hold these past few years when I was Clare’s 24/7 caregiver. Golf, for example, is one such activity. I miss playing, I miss the camaraderie with friends, and I miss the enjoyment of being away from life’s stresses for half a day. So returning to past activities will surely be a part of my future. But there are also many questionable areas to re-visit. Until Clare’s AD worsened to the point where it was very difficult to travel, we used to take long international trips. Will I ever go on such trips again? We used to see Broadway plays and new movies regularly. Will I ever go to a movie theater or playhouse again?
Sure, I can go to such activities with friends. Or I can go by myself. But will I want to do so with friends or by myself after never doing so without Clare ever since we married a week after we graduated from college? Will I want to meet another woman at some point in the future to provide me with the companionship and ongoing friendship I always had with Clare, not to mention the attention to my physical needs for giving and receiving love?
Only time will tell. In my real and online support groups, I’ve noticed that each member who has either lost a spouse, or whose spouse no longer is even aware of who they are, has handled similar questions in ways that best befit their individual personalities. I suppose that, over time, I will do what I want do based on my personality and that will be that. But whenever a caregiver places a loved one in an ALF, several months later that caregiver must answer a new question ... So, now what?
Published in care ADvantage, Alzheimer's Foundation of America. January, 2014 winter edition, pp. 14-17. (This article may also be accessed at the care ADvantage tab on the Alzheimer's Foundation of America website, available at: www.alzfdn.org.)