I have been the primary caregiver of my mother who had dementia, one of the primary caregivers of my father who had dementia, and one of the primary caregivers of my brother who had dementia. The feelings of loss, anger, grief, sadness, joy, etc... was similar with each but in many ways very different. Each bringing their own sets of highs and lows but overall they followed the same general course. Denial, anger, bargaining, compromise, and acceptance in some order. Generally when one stage was done, I didn’t return, I was into the next and heading for the next. There was too much to get done to look back.
But in all this, I have never been a spousal caregiver and therein lies my question. Is this situation a great deal different from that of being the caregiver of a parent or sibling. My wife has been by my side through all the years of caregiving, she has seen all that I have seen. Her mother is even in the early to moderate stages of Alzheimer’s. She has basically handled everything as I have.
But her day to day grasp of our situation is vastly different. As expected, the news was devastating when I was 1st diagnosed and then she became angryn then came sadness and some form of acceptance. All of this is what I expected. What I didn’t expect, but I fell is probably quite normal, is that if she sees me reach a new milestone on my journey or sees the frustration on my face or the exhaustion, it may well take her right back to the beginning of her emotions and she’ll have to work through them all over again. Albit, most times in a day or so rather than weeks or months but it’s still devastating watching her go through this so often. I really believe it’s the worst part of the disease for me.
My question for the spousal caregivers out there is, has this been your experience, or has it been entirely different? I’m really curious to know and maybe, just maybe, find some small measure to alleviate my wife’s pain.