On cold evenings
My grandmother,
With ownership of half her mind-
The other half having flown back to Bohemia
Spread newspapers over the porch floor
So, she said, the garden ants could crawl
As under a blanket, and keep warm,
And what shall I wish for myself,
But, being so struck by the lightning of years,
To be like her with what is left, that loving.
My mother has dementia. My father-in-law does too. In their crazy Alzheimer’s world it’s hard for me to share reality with them. Okay, it’s hard for anyone I believe to have shared realities, but even more so when the mind turns inward on itself, creating cognitive loops that by pass experience and learning. Given that it is in our family, my spouse and I wonder what our fading years will look like. Will we be who’ve we always have been, but even more so? For instance, will we be more loving and caring, or more angry and afraid? When we have so little left, will we be willing to give it to others? I don’t know the answer to that, and I imagine I will end up being a mix of outward and inward focusing just like I am now. What if, though, I do all I can to rewire my brain and lay down those pathways of compassion and interconnection so that they might endure through dementia? What if I did so now so that pathways of love could endure in the hard times of stress and not getting my needs met that will surely arise as does the sun now as I write? Today I will pick up a newspaper and as usual read it and play the jumble to ward off dementia. When I finish, may I bow deeply as I lay the paper down in gratitude, as if I were giving it to the ants and to the least of these. I may not ward off dementia or stay out of the crazy ward, but I might just see the whole world as my ward, my love.
Do you have any older mentors who have show you the way forward?
My mother suffered from dementia before she died. She was very fearful in the beginning as she realized she wasn't understanding things around her. As she lost contact with our world she was less frightened. During her normal years she had had many fears and was pessimisstic. Finally she lived in the moment and seemed content. Having just been through drug induced crazy thinking I, too, wonder what my final years may bring. While I was ill the side effect of the only antibiotic that was not causing allergic diaster and still was killing off the germs left me confused and disoriented. The decision was made to cope with my lack of understanding until the germs causing the problem were sufficiently eliminated. In reviewing my discharge summaries and talking with my children I can now connect what was actually going on with what I thought was happening. I did not feel fearful or angry. I did feel cared for and loved by my family. My brain was quite creative in imagining a parallel story, so it seemed to make sense to me at the time. My daughter, Kay, reports that the standard question was, "Do you know where you are?" I didn't know, but could come up with very creative non-answers, such as, " I'm right here with you. I'm in the same place you are." Finally someone told me where I was, so I repeated it to answer their question, but my daughter didn't think it proved anything as I was just giving the expected answer. In the things I remember for that period of time I don't recall anyone telling me I had pneumonia. I remember having trouble breathing and needing treatments which in reality were probably the nebulizer treatments. My brain wasn't able to connect the experiences and realize that I had pneumonia.
ReplyDeleteI choose to think that having lived optimistically with positive loving interactions any dementia will not be fearful and anger producing in my final years.
My mother’s dementia was at first disorienting and confusing. A years later she took it in stride, relying on her familiarity with her own innate logic (“I must have decided to _____”). Then she became more quiet as she had to share her apartment with my brother, who had a rough time caring for her and structured her life, often with obvious impatience. Next, in a memory care facility, she spread her wings again and enjoyed the people around her, with lots of hugs and kisses and baby dolls, speaking half sentences and later gibberish. After a fall with her walker and a broken arm she lost energy due to pain and less ability to exercise. She lost her remaining teeth around this time. She ate well for as long as she could but struggled to swallow. There were times when she was angry at the indignities and physical hardships, and she was rightly suspicious of certain personnel (though may have suspected others who were trustworthy too). She was usually able to focus (though she seemed in many ways like a toddler in her last year or two). She was generous with hugs, kisses and smiles even when nearing the end.
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