My friend Kate recently posted, in her blog, a piece on "realities." It really moved me and gave me some new information about my journey with Gregory and Dementia/ Alzheimer's. Yes even though Gregory will be gone two years come October, I am still processing and learning and sharing my understandings. https://kateswaffer.com/2017/07/23/sharing-our-own-reality (opens in a new window) So here is my reply to Kate:
This particular post really spoke to me (brought tears) and brought back many difficult memories as you (and Paul) so accurately described regarding living in one or the other's reality and needing time to oneself, for the players on both sides of Dementia!
Gregory and I always enjoyed being with each other but also loved our private times and solitude, vacations together and vacations apart, together friends and personal friends, together activities and personal activities, likes and dislikes.
We learned how to be in the same room working alone or in different rooms working together. Dementia/Alzheimer's changed all that, and not for the better. But I must say, that love conquers all so we learned to be flexible (mostly me but Gregory as well) and we changed to accommodate his changes and our needs.
While alone time took new forms, we both were able to secure periods of time to ourselves by enlisting the help of friends and hiring "companions" for Gregory. He got to be "rid" of me for an hour here and there and I was able to get "rid" of him :-) We both benefited!
In addition, not only do the realities (abilities) change in a moment but they can also get weaker slowly, change back to where they started, or become some totally new and strange reality!
This makes for a difficult time in not making assumptions about the person with Dementia's abilities and treating them at all times with respect while at the same time not going too far to allow them great frustration and confusion!
Also, I am not sure that anyone out there (other than extremely close friends who are truly altruistic and enlightened in themselves and life, having been in a similar situation) could really understand my reality.
I was lucky to have half a dozen people who truly could identify with what I was going through and the others, even though well meaning, proved to be hurtful in their comments and awarenesses and dealings.
A new understanding for me with your post is that I just assumed that Gregory's life reality was the same as mine and what was changing was the reality of his cognitive skills and abilities. I just assumed both were the same.
By life reality, I mean that we thought the same, believed the same, experienced the same vs cognitive reality based on what he could do and his failing abilities. I understand now that his cognitive ability reality was changing but failed to realize that the mental, philosophical, belief, assumed, memory etc realities were changing as well.
I could have done a much better job in my caregiver partner role if I had thought of that! Not chastising myself but perhaps sharing that understanding of reality with others so they can be better at what they do.
Meanwhile, friend, I wish I could make it all better for you, and besides my positive thoughts sent your way, I send platitudes like KEEP ON KEEPING ON and HANG IN THERE and KEEP UP THE GOOD WORKS, and I LOVE YOU SO MUCH. So many depend on your words and your wisdom!