By Allan Vann, Huffington Post, April 11, 2016
Clare’s Alzheimer’s disease continues to worsen and she entered a nursing home last month. I now try harder than ever to savor each “good” visit with her. It’s been a long time since Clare could remember my name or understand that we are married or that I am her husband. But Clare still continues to recognize me as someone she knows and someone she loves. She no longer recognizes our children or grandchildren.
During “good” visits, Clare is calm. As soon as Clare sees me she steers her wheelchair towards me with a bright smile on her face and then tries to get up to give me a hug. She frequently tells me that I am “a good man” or “nice lady.” I can usually say or do something to make Clare laugh, and we can often sing some songs together. (Isn’t it amazing how among the longest lasting memories for many people with Alzheimer’s are the words to songs learned so many years ago?) Sometimes we can even exchange a few words together.
During “bad” visits, however, Clare is anxious and often greets me with that classic “blank stare” often associated with Alzheimer’s. On “bad” visits, even while I am hugging her tightly in my arms, Clare will often repetitively ask, “Can you please help me find my husband?” Sometimes I’ll turn her face toward mine and say, “Honey, I have good news for you. I found your husband. He’s right here. Look at me. I’m Allan. I’m your husband.” Usually Clare will respond by saying, “Oh,” or “I know that” ... but then she will quickly ask again, “Can you please help me find my husband?”
I do not see bright smiles on “bad” visits. The best I can hope for on “bad” visits is for Clare to fall asleep in my arms. I do not like “bad” visits. But even after a series of “bad” days, I remain hopeful that my next visit with Clare may be another “good” visit.
Although “bad” visits are tough on me, emotionally, I sometimes feel even sadder after “good” visits because glimpses of Clare’s former personality make me miss her that much more. I have two pictures of Clare and me in my bedroom. When I get into bed after “good” visits and look at one of those pictures taken in happier times, I’ll sometimes just start crying. I still miss Clare terribly ... the life we had and can no longer have again.
For three years I have been living as a “married single” ... married to Clare but mostly living as if I am already widowed. In my HuffPost blog post on 9/28/15, “Transitions for Alzheimer’s Caregivers,” I discussed transitions faced by Alzheimer’s caregivers, how I’ve “said goodbye” to Clare in my heart, and how I planned to move on with the rest of my life. In my Huff Post blog posted on 12/7/15, “Uneven Transitions for Alzheimer’s Caregivers,” I shared how my transitions seemed to be one step forward and two steps back ... but I still intended to keep moving forward.
However, it’s now April of 2016 and I have stopped moving forward. Ironically, I increasingly find myself missing the companionship and physical intimacy that might come with a new loving relationship. However, I continue to resist any efforts that could help make that happen. I am stuck in place ... not truly married anymore, but not truly single yet, either.
But it is my choice to be stuck in place. Despite the urging by some to take more steps to move on with my new life, I just do not feel ready yet to move forward without Clare.
All caregivers, especially spouse caregivers, know that we need to “turn the page” at a certain point and move on with the rest of our lives. I honestly thought that I was at that point last fall. I had already cut back from visiting Clare on a daily basis to visiting her every other day. I had expected to cut back on my visits even more but I missed Clare too much when I tried cutting back.
I want to ... and need to ... visit with Clare at least every other day while there are still possibilities of enjoying more “good” days with her. Being with Clare on a “good” day nourishes my soul. I want to ... and need to ... maintain my emotional connection with Clare for as long as possible. If that delays my moving on, so be it.
For other Alzheimer’s spouses or Alzheimer’s caregivers having difficulty moving on ... you are not alone. You are not the only ones who feel that way. I am still working through those stages of grief ... but there is still much anger and pain, and even full acceptance is there only on some days but not on others.
In eight weeks Clare and I will “celebrate” our 49th wedding anniversary. I am hoping that will be a “good” day and we will hug and kiss and be very happy for a brief moment. I am an Alzheimer’s spouse who is just not ready yet to move on.