Dementia Journal — hospital bed — January 17, 2020 in Daydreaming on the Porch

This is probably the most difficult entry to write up until now. I’ve done a lot of thinking and soul-searching but could only come up with vague ideas that didn’t deal adequately with the gravity of the situation. Basically, I stalled and procrastinated up until now. I just couldn’t write it. I’ve also been in a semi-state of denial about Mom’s overall condition and the trajectory of where things are heading. Not good, at least for me emotionally and psychologically. For Mom, her quality of life has been significantly diminished in the past two months. She’s lost a lot of weight. She’s more and more confused and disoriented.

The end of her horrible struggle with dementia is approaching. Her suffering with extreme anxiety, fear, and loss of awareness of who and where she is, will be over. It will be a blessing for her. She’s suffering more than ever now. For about a year she’s been saying she’s dying, and we’ve reassured her that she was not, and that she was living and loved and capable of giving and expressing love. Now our reassurances seem to ring hollow, though we keep up a brave front for her. Mom’s dementia is not so all-encompassing and brain ravaging that she doesn’t have an awareness of her own mortality. She was, and is, fearful of dying despite a strong faith in God that is still miraculously intact. Last night I read her some Bible verses, and on two occasions I asked her out of curiosity, and not expecting much, to tell me what I had just read. I was astounded when she repeated the verses verbatim.

The big change this week was having a hospital bed installed in her bedroom. The hospice nurse had been gently suggesting that I consider doing this, but I resisted rather selfishly knowing I would feel sadness and shock seeing her in the kinds of beds one sees in hospital rooms and nursing homes. So I continued on with the morning routine of getting her up and out of her big queen bed and onto the sofa in the den where she would sit, repeat herself endlessly, and then sleep most of the rest of the day and night until I put her to bed. We had special pillows and foam cushions, but to my dismay this arrangement inevitably led to the formation of awful pressure sores I had heard so much about. I began utilizing the whole arsenal of medical grade honey and zinc oxide to control and heal the sores, but no luck. The lesions only began to deepen and spread.

I knew it was time early last week. Thankfully the bed is there now, and what a difference it’s made. Mom is resting much more comfortably with a special massaging air pocket mattress cover that, combined with sleeping on her side, should greatly facilitate the healing of the sores. We never had a problem with them until Mom weakened to the point where she was basically immobile and couldn’t, and didn’t, shift her weight on the sofa at all. We tried moving her from side to side periodically during the day, but that was awkward and stressful for Mom and didn’t help that much.

With the hospital bed it’s so much easier to clean Mom and take care of basic needs such feeding her and seeing that she sleeps comfortably, adjusting the height and raising and lowering the top of the mattress so she can sit up and eat. When I come in to check on her, and after getting over the initial shock of seeing a hospital bed, I notice her sleeping peacefully. I’m grateful. A little while ago we had to wake her for supper, and she’s upset now and calling for her mother.

The hospice nurse and I had a frank discussion yesterday afternoon about what to expect as the end nears. There are signs now that her body is starting to shut down in earnest, based on what I told the nurse I had observed in the last few weeks: legs and arms are so stiff I can barely pull them apart; her swallowing is getting more difficult; use of the sedative, Ativan, is decreasing as she has less energy to sustain dementia-related agitation and is actually calmer; and, she is sleeping anywhere from 20-24 hours a day, awake only to get up and eat breakfast and other meals, and get ready for bed at night.

Fortunately, I feel pretty good, have a lot of energy, and have my depression and anxiety under control for the most part. Believe me, one needs to be running on all pistons to get through each day in my situation. Controlling depression also means I don’t feel normal sadness. This can be a blessing and a curse. Right now it’s helping me cope. I’ve been through so much emotional pain with Mom, particularly over the past five years, that I sometimes feel I’m on auto-pilot. I think to myself that I must now be in fortress mode. As things start to spiral down, I am becoming both more numb and more resilient and tough. Again, these are coping mechanisms. Others around me seem oblivious to what I’m experiencing inside, and I feel they just assume I’m a rock and will withstand the battering waves. Obviously, it’s not that simple. I am tougher. I am more resilient. It’s not a facade. It’s real. But, can I maintain this posture of heroic fortitude when the forces of dying and mortality are pressing against me in the terrible struggle of my once vibrant, confident, poised, and loving mother? It’s all way too much to absorb, so I go about my daily routines as if they will continue indefinitely and nothing will change. I can’t bear the thought of losing Mom, hence I never think about it for more than a few, fleeting moments. Yet I know what’s coming — I just don’t know when and whether I will be prepared for it.

As a final note, and to add a bit of levity to this sobering assessment of the life of a dementia caregiver, I will recount some incidents of Mom’s sense of humor and irony still working. This manifests in things I just can’t believe she’s said and which upon even slight reflection make perfect sense. As with everything else though, these moments of lucidity are coming to an end.

In these times when Mom is regressing back to childhood where I think many of her remaining memories reside, it’s fascinating to see how truly complex the mind is, even with the extensive damage of dementia. Sometimes with flashes of awareness Mom almost seems like the person she once was. I wonder how much of that there is hidden down there waiting to come out. The other afternoon I was pointing to her small stuffed animals in front of her and reciting the names I had given them. “There’s Johnny Dog and Baby Bear and Honey Bunny, and…” .but before I could finish she looked up at me and said, “You’re crazy.” That shut me up.

Finally a few nights ago I was reassuring her that someone was always with her and that she would not be alone. I’m going to be here with you all night,” I announced. “You poor thing,” she replied.

Moms been so sweet lately, too. She’ll start thanking us for every little thing we do. And she will say, “ I love you.”

“I love you, too, Mom.” And then I’ll see her look right at me and give me that beautiful smile she’s so famous for. I fervently hope she’ll always have that radiant smile.

Last updated January 21, 2020