Good morning, J-Dog. I am writing to you from a small town in North Eastern Nova Scotia. And I am writing to you from a profound experienmce of loss which is similar to your own.
My wife and partner of forty seven years died from Huntingtons's Disease. Huntingtons affects every aspect of a person's identity. As in your case there is a "slipping away" of that person you knew and loved. They become a stranger - physically, socially, cognitively, psychologically, and emotionally. The depth and reciprocity of the relationship you once shared is eroded to the point where it is almost completely one sided. It seems like you are in the midst of the same traumatic losses.
I cared for Sarah for fifteen years, thirteen of which were at home. Like you, the thought of having her placed in a care facility felt like I was "betraying her" as you wrote. On one occasion due to a another critical illness in my family, I had to place her in a local care home for a week. When I returned, I found her strapped in her wheel chair in a corridor, slumped over and asleep. It was the kind of a nightmare that seems to be currently afflicting you. I understand the guilt and anxiety that is troubling you at the moment when you consider a similar placement.
Eventually, caring for her at home, doing all the things you too are now doing in terms of personal care became too exhausting - physically and emotionally. Fortunately, I was able to have Sarah placerd in a facility within walking distance of where I live. Like you, I wanted to be able to still care for her on a daily basis. And I did. I visited every day. I continued to feed her, shower her, sit with her, take her for walks and drives, and accompany her to various in-house activities. The difference was that I did all of those things within a wonderful community of professional, compassionate care givers. I was no longer alone, isolated, lost and broken in my grief and in my care of this woman I loved. I had companions. The nurses, the maintenance staff, the kitchen staff, the recreational staff all, other family care givers became a part of a circle of care focused on Sarah's welfare, indeed, but also focused on my welfare as well. I, the care giver became one who was cared for. And, I could go home at night and sleep - secure in the knowledge that Sarah was safe, and was being held warmly, attentively, lcompassionately within that circle of care. That care within that facility within that circle of support allowed me to continue to care for Sarah at a time when I was close to collapsing, disintegrating from grief, physical exhaustion, and loneliness.
I would encourage you to look for a similar arrangement for your partner - for her sake, and for your own as difficult as that might initially seem. It is not a betrayal. It is, at its best, an extension of your ability to care for the woman you love.
One other comment: As mentioned above, over the years Sarah became estranged from all of us who loved her most dearly, her family, and her friends. Such was the profound consequence of her severe dementia. This was a woman who was an exceptional mother to our kids. She was the one who hugged them when they were sick or upset, listened to them when they were troubled, shopped for them months in advance of Christmas, or birthdays, or eventually - anniversaries. She was the heart of our home. She was also an exceptional professional as a bacteriologist in our local hiospital's lab. Scrupulous in her attention to the welfare of others. Her illness took all that away from her, and from us. It was and remains a profound, heart breaking tragedy.
I wiite all that not to add to your grief but rather to acknowledge your grief, your loneliness, and your anxieties. It is a difficult, difficult path to accompany someone you love dearly on a journey they themselves no longer understand. Holdfast to family, to steadfast friends, to other care givers both professional and personal, to the friends and supporters you have met on this site. It is a difficult, difficult path. Those who would suggest otherwise, have not lived it. Have not walked it.
- With care
Jimmie