(Original title, "Helping Caregivers After They Place a Loved One in Assisted Living")
Seven months after placing my wife, Clare, in the dementia unit of a nearby Assisted Living Facility (ALF) in September, 2013 I unexpectedly plunged into a weeklong bout of serious depression. Until that time, I thought I had been dealing as well as could be expected while adjusting to Clare no longer sharing a bed with me at home after more than 46 years of a wonderful marriage.
I had been visiting Clare daily from 3-5 p.m., leaving when she went into her dining room for supper. Clare enjoyed participating in all of her ALF’s activities, but there were no scheduled activities between dinner and 7 p.m., and that time period was becoming increasingly difficult for her. She would ask aides where I was, tell aides she missed me, asked if she could speak with me by phone, etc. The social worker told me that Clare was so anxious and missing me so much at that time that an aide had to be with her 1:1 to keep her calm, and this was taking that aide away from being available to help other residents during that time. The social worker suggested a one week experiment to ease her anxiety between 5:30-7 p.m. For one week, I’d either hire an aide to be with Clare during that time period, or I could stay with Clare during that time, and then we’d re-evaluate the experiment. That sounded like a good idea, so I suggested we begin the next day and that I would stay with Clare.
The social worker also had something else to share with me, telling me that Clare had followed another gentleman to his bedroom the previous night, thinking that he was me. By the time one of the aides noticed Clare and figured out what was happening, but before the aide could pull her away, Clare had already hugged him and kissed him on the lips while wishing him a good night.
I nodded my head when the social worker finished and said something like, “Well, I knew this day would come eventually so what you’re telling me doesn’t come as a complete surprise ... but I didn’t realize we were already at this point.” What I didn’t say to the social worker was that I was completely devastated. Clare had already been having difficulty remembering our children and grandchildren on some days. But now it was clear that she was starting to forget me ... or at the very least, she was now confused at times with respect to always knowing who I am.
That news pushed me into depression. For many months I’d been watching Clare’s appetite diminish, her ability to speak in complete sentences virtually disappear, and her understanding of concepts and word meanings disappear more and more. She became more frail and more dependent on others with respect to her activities of daily living. I knew that I would be “the last to go” in her mind ... but this incident demonstrated that the time was getting closer when Clare would no longer remember that I am her husband.
I must have watched at least a dozen hours of television in bed each day that next week. I ate all my meals in bed. Except for visiting Clare each day, I did not leave the house. In short, I had myself a week-long “pity party.” I cried ... I cried a lot ... about how much I missed Clare and how our future plans had all gone up in smoke at such a comparatively young age (we are both 67). I also gained 5 or 6 pounds, going to my “comfort foods” for ... well, for comfort ... and I only slept 3 or 4 few hours each night.
I had apparently reached that place in my life that many Alzheimer’s spouses eventually come to know all too well. I had to accept that Clare and I now had a relationship more like father-child than husband-wife. I had to accept that, in a very real sense, I am now both married and widowed at the same time. Toward the end of that week of depression and after much soul searching, I finally came to accept the reality that my life was forever changed. Not that I didn’t know that earlier ... but it took me nearly 7 months of grieving followed by one week of depression and introspection, to fully accept the words in the Serenity Prayer. I knew that I had to have “the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.” I was now “alone” in our house, all by myself, and Clare would never be here with me again. I had to accept that, although still married, I am also now a “single man” in many respects and that I have to take back control of my new life.
Here are some suggestions that social workers may want to offer to caregivers based upon what I did to try to get mentally and emotionally healthy again ... to begin taking small steps towards building a new life for myself as a single person.
1. Make yourself a “To Do” list for major decisions to be made.
I made up a list of items that I needed to attend to, and then re-arranged those items in priority order. My first item was to make a decision on whether or not I would stay in my home or move. Other items on my list included personal appointments I had to make, such as meeting with our attorney and financial advisor, as well as scheduling various repairs and house maintenance. Once I made the decision to stay in our current house, that led to an expanded list of “To Do” list items that needed attention ... going through all of Clare’s clothing and personal items that have remained untouched since she was admitted into the ALF, and going through the entire house room by room to make it more “livable” according to my needs now that it is just me living in our house.
2. Get out of the house and set up a regular exercise plan
I went back to the gym three times a week, and went back to bowling, slowly building up my stamina since I’m still recovering from my two surgeries. As I am writing this, I am already looking forward to returning to golf this spring and joining a summer bowling league.
3. Remain active with friends and family.
I set up “dates” to do things with friends, mostly involving taking Clare out of the ALF to join them for lunch or supper but also to do things with friends by myself. I have a weekly lunch date with friends, take my daughter out for breakfast at least once a week, etc. In short, I am committed to getting myself out of my house to be with others.
4. Talk about your feelings with others you can trust.
Fortunately, I am still in a loosely defined caregiver support group that meets weekly for lunch and we often call or email each other between those lunch dates. I shared my feelings with my group members, and their support helped a lot. I did the same with my best friends and close family members. Each of them in their own way helped to snap me out of my weeklong depression when the bottom dropped out. They continued to tell me they were worried about me and, most importantly, they each reminded me how I had to remain strong to be there for Clare ... sufficient motivation to get myself well!
5. Try to eat and live a healthy life style.
I have battled a weight problem since I was a child, but I gained a lot of weight, 80 pounds, from the time Clare first started exhibiting symptoms of Alzheimer’s and I was now determined to take all of that weight off ... for good. So, on most if not all days, I’m now eating healthier. Hopefully, with exercise now back in my life plus additional walking that is also excellent therapy for my legs, I will lose those 80 pounds within two years.
6. Memorize the Serenity prayer.
When I placed Clare in her ALF it was an emotional time for me, but I had not fully appreciated just how much my emotions continued to be strained even 6 months later. When I “returned to normal” after my bout with depression, I was more accepting of the reality that Clare and I now and will forever lead separate lives ... except for the few hours a day we will spend together at her ALF or on a day trip outing. I must make changes in my life to lead a healthier and more productive life style and I cannot let myself dwell in those “dark places” to think about what might have been, or should have been, or what will no longer be. I now must fully internalize 5 words I have said so often these past few years ... “it is what it is.”
7. Seek out professional help, if necessary.
If you are feeling delayed post-placement depression similar to what I experienced and you feel you cannot apply my suggestions to help snap you out of your funk ... and have tried, unsuccessfully, to apply other suggestions from people you trust ... then you should immediately seek out professional help from your doctor. And listen to your close friends and family. If they suggest that you seek professional help, don’t be shy. Do it. You now have a new life to live, one for the most part that will not involve your loved one. Do whatever you need to do to make sure you can take those next steps, mentally and emotionally, in a healthy way. As I was reminded, take whatever steps are necessary to end your depression, if for no other reason than to remain strong so you can be there for your loved one.
By the way, that one week experiment of my staying with Clare from 3-7 p.m. has been very successful. On most days after I escort Clare to dinner at 5 p.m. in her unit, I go to an adjacent room to eat a “bag supper” that I bring with me. Then at 5:45 I pull Clare out to spend time with me in a lounge until her 7 p.m. activity. On other days I’ve arranged for us to eat together in the ALF’s private dining room or have taken Clare out for dinner. We are both enjoying that extra time together each day.
And such is my “new normal” ... married for 4 hours a day, and single the rest of the time. It is what it is.
Published in Social Work Today, May/June 2014 issue, Vol. 14, No. 3, p.30.