We paused our unpacking last week to go visit my parents in New York. I’ve written about them before. Both are in their mid-80s, both are still living together in their own home which is convenient but much, much too big, and both experiencing serious health issues in the last few years. They seem to be helping each other with daily tasks and learning to be patient and kind to each other as well. The illnesses have been a reminder to be patient and kind. You don’t stay married for over 60 years without having a base of tolerance, acceptance, patience, and kindness, do you? I think not.
My mom has Alzheimer’s disease, among some other illnesses – most common and one rare – recently diagnosed. She is doing well physically but mentally, I think her memory is more fully receded. She doesn’t realize she’s done self-care activities such as taking her medicine and repeats stories about family and their neighbors (only a few of whom we’ve met). She mixes up when she saw her doctors and what they’ve told her. We’ve tried to get someone to go to her doctor’s appointments but she has not allowed this after letting my father come with her once last year and it didn’t go well. It’s a long story, but I blame the physician for most of it. He needed to set guidelines as to who would answer his questions during the visit. My mom is stubborn. It’s not a quality when those who love her are trying to help.
My dad, also, has been diagnosed with a rare yet still indolent form of lymphoma. My sister is an expert in blood cancers so she has been able to go with him to interpret what he is told and advise accordingly. He has allowed that.
But, back to Alzheimer’s disease. Of course, with both my mom and my maternal grandmother (MGM) having had dementia, it worries me. I attribute both of their declines in some regard to social isolation. My MGM lived until she was 92 but spent a large part of the last twenty years of her life alone, aside from one close friend, and consistent visits from my parents at least once a week. My mom has cut herself off from most, if not all of her friends. She listens to FOX news during virtually all her waking hours with my dad. They debate and commiserate and complain to each other. But, have you heard FOX news? Oh, the argumentative, pressured speech is awful and constant. It’s part of our visit there, whether we want it to be or not. This visit was a little better. The first day we were there, it was not watched at all. That was a welcome relief.
But, with each subsequent visit – we’ve been trying to go to visit them every three months, despite the fact they live 900 miles away. I notice the memory issues more. We nod and agree and try not to correct. Sometimes, I slip and say – “you told us that already.” But, it’s hard.
It’s hard to watch your parents’ age. Harder than I thought it would be. Memories are twisted and I become who they think I am not who I truly am. I hope that makes sense. I fall back into being the smart, quiet, older daughter who is obedient. My sister sees my parents more often but for shorter periods of time – several hours to a day, rarely more than that, even during episodes of emergency. It works for her and they seem happy with what she is doing, so who am I to judge. I cannot do much more when I live so far away.
Our unpacking resumed this morning. We got back yesterday. But I feel more unsettled than I did before we went to see my parents seven days ago. I cannot put my finger on it. But, I know that I will do what I can – and there ARE things you can do – to avoid memory loss. My mom thinks my dad doesn’t know she has Alzheimer’s. I didn’t tell her otherwise. But, he knows mom, he knows. We all know. How can we not?
So what does this have to do with Poetry Friday?
A few things…
- Poetry and fiction can help caregivers and families navigate the unknown when it comes to this disease. Reading it or writing about it can ground one’s experiences in reality and assure one that you are not alone in what you are seeing and feeling about your loved one. Here is a Washington Post article about this very fact.
- My mom can still connect to poetry and the written word. Although her eyesight is not what it was and her comprehension fails after a few minutes, she remembers I just published a poetry book! It was on her table with pages marked when we arrived. We were able to have a conversation about my poetry and my aspirations in the field. I am thankful that she has an appreciation for the poetry I write.
- I am working on a poem about my mom’s Alzheimer’s disease. I am not ready to share any of it yet, but I will do so at some point in the future.
- There are many examples of poetry and prose about this mind-taking disease. I would recommend a poem by Susan Hunter entitled The Long Goodbye (2018). And another, somewhat disturbing poem read by the author Beth Copeland about her father’s disease can be found, here.
- Something in poetry, when recited to seniors with the disease can jog a memory as explained in this brief excerpt from the Orlando Sentinel.
- It’s hard to find a poem about Alzheimer’s in the public domain to share. And, since there are three stages of this disease (my mom is probably between stages one and two), it is hard to find a poem that speaks to her early symptoms of memory loss. There are three very good poems (in my opinion) on the Alzheimer’s.org UK page. I’d be pleased if you took a minute to read them. But, if you cannot, here is a brief excerpt from one:
"We sit together Words from me Smiles from you Cruel dementia Stealing your memories But leaving mine"
The above is an ending in a poem by Phil Sharman (2013) on his wife having Alzheimer’s. It could apply to any family member. For the whole poem, click on the link in #6 above.
More about Alzheimer’s disease can be found on the National Institute of Health website.
Today is Poetry Friday. If you want to know more about Poetry Friday, stop here. Thank you to Elisabeth from Unexpected Intersections for hosting today’s roundup. Please visit her page to leave a link or read more contributions from Poetry Friday participants.
Postscript: I am once again behind on return comments from last week, due to travel. I know for many, if not all of you, family comes first, so I will count on your grace and respond to your kind comments soon! Thank you for understanding!
Carol, Alzheimer’s disease is a horrid part of many people’s life. I am not wondering if my Nonnie and Aunt had it in their lives. I know my mother started with partial dementia and then it moves to a much more serious level. My uncle is 93 and doesn’t remember me when my sister has him on a video call. I understand your feelings and wish you well in the months to come. The poem remarks that dementia is cruel. Indeed it is. I shall look through your links. (I logged in with Word Press but do not see that my comment went through. Let’s see if FB works for me.)
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Firstly, I’m sorry you had trouble logging in to WP. I’ve heard some are having trouble leaving comments on my page. I feel bad about that but don’t know quite how to fix it. Thank you for sharing about your own experience with dementia. When I was in nursing school (eons ago) they called it senile dementia. Now, it’s Alzheimers. I consider us lucky that my mom is not that bad yet. She knows us but occasionally will mix up my dad for her father. That’s go to be so hard on my Dad. I am trying to learn about it so if I have a chance for my mind to stay healthy, it will. I’m sorry that your uncle doesn’t know you. It’s such a hard disease to cope with for everyone involved. It seems so prevalent – and in that regard we all have to lean on each other in times of sadness and distress. As always, I appreciate your comments and insight. Thanks.
‘cruel dementia’ indeed. Sending you and yours love and support, Carol.
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Thanks, Bridget! I appreciate your kind thoughts.