Dear @grace4u
I have a suggestion that may seem completely unrealistic, but I will share it in case it can lighten the burdens for both you and your husband.
Consider quietly and lovingly Taking Control.
I have been on the Alzheimer's journey with my husband for 16 years so far. They have been wonderful years. My user name, MemoriestoMoments, has two intertwined meanings.
1. It refers to the path that our Persons are on once they have dementia. Although we can do things to stretch out the decline, once on the dementia journey we cannot reverse it. Over time our loved ones will lose most of their Memory and this may well erode capabilities, preclude valued activities, change relationships, upend plans. Over time, they will come to live life as a series of Moments in the present.
2. Though that trajectory is (currently) inevitable, we, their partners, can keep that memory loss from leading to annoyance, sadness, anxiety, incapacity, loss of dignity, and embarrassment, among other negative effects. That is the parallel Memories to Moments process for the partners of people with Dementia:
For our loved ones and for ourselves we can shape a life that:
1. Makes the most of the joys of the “Memoried” life while you can still share with your person,
2. Evolves -- with us increasingly becoming the curators of a series of pleasant Moments for our Person. The result is new joys and deep fulfillment experienced together, and separately, in the present.
I am writing now about how I did this in our life, but here is a summary that may be useful.
The default thinking that many people adopt when Alzheimer’s enters their lives is that their future is going to be dominated by sadness and suffering as the afflicted person’s capabilities inexorably decline.
When I realized my husband had memory issues, I remembered that when my mother was dying of cancer I was able to anticipate what she needed and wanted. In her last weeks, it was as if we were partnering to be her: As she lost agency, I was an able complement. Her death was the most devastating event of my life, but being able to reduce her suffering through that complementarity makes me treasure the memory of those days. Remembering this, I realized that I could do the same thing with my husband as he went through Alzheimer's.
Once you realize that your loved one is having a hard time doing things, you can start experimenting with how to step in (or have others step in) to fill the capacity gaps that emerge. There are two intertwined objectives to this "complementarity" .
• One objective is practical: It is to enable your loved one to achieve outcomes that they want, but can no longer accomplish on their own, or without stress.
• Even more importantly, there is an emotional, psychic objective: It is to minimize, and even eliminate, the stress (and associated anger, anxiety, etc.) of losing capabilities.
The more naturally and tacitly you provide complementary assistance, the more likely you are to reduce stress for the person. Nobody wants to need help. As we know, asking someone with dementia if they want your help, makes it an issue.
Providing the needed help sensitively and proactively, makes it a gift.
As you do this with the intention of wrapping your husband in your solidarity and love, obstacles dissolve. One activity at a time we gently and lovingly redefined independence, replacing it with collaborative effectiveness.
As the disease progressed, I found it important to use "adaptation" as well as complementarity. Complementarity changes Who does what the person wants to do. Adaptation changes What the person does: You accommodate losses of capability by substituting-in doing something similar -- that is within their abilities.
I know that this may seem like a lot. You have your own life to manage, plus the things he used to do for the two of you. Now I seem to be suggesting that you take on his life too. I can only report from my experience that it has made our life joyful and has created great satisfaction and growth for me. I take the chance of sharing this with you because I found that this approach can move those of us facing dementia in our families:
- From victims to agents
- From reactive to proactive
- From fearful to confident
Wishing you the best.
@memoriestomoments Such great advice. Particularly doing one thing at a time. It took me awhile how difficult it was for my husband when there was to much going on even like opening a door and getting his shoes on. Also, thinking of helping as a gift and realizing he can no longer admit he can't do it. These are small changes in the big picture but a loving way to be a caregiver. I realize not everyone is able so get help and support!