Music, Longevity and French folk songs

It broke my heart to see her banging on the small drum, long after the music had stopped. Her automatic, auto-pilot striking of the instrument, oblivious not only to the silence but also to her own banging and movements. I pictured the old Alda, the one who used to say “people live too long!” And now she was one of them, a person who, in her old estimation, had extended her visit beyond what was acceptable.

Do I look at her current situation through the lens of the older Alda, or through that of the newer (and actually much older) one? Do I pity her for living longer than that Alda thought she should, or do I take joy in the gifts that she still has, those that she still gives, and the things that she can still do? 

People will say, often cavalierly, “shoot me if I get like that.” But could it be that, from one lens, the lens of a middle-aged or older person with all of her faculties intact, a situation looks pathetic and dire but to someone in the situation, it’s not actually that bad?

Everyone’s terrified of dementia. I used to be too. Perhaps it’s somewhat insincere of me to think so, but in my quiet private moments I think that there are worse fates, worse ways to decline and die than that of my mother. She is not suffering. She is not having existential death angst. She is not anxious. She is not worried. She is in the moment, each moment quickly moved through and forgotten. Is it really better to be dying and know that you are dying? To be in pain and fully conscious? Maybe it’s ok to hug and love a little pink pig, as she does, to kiss it and arrange its tail at breakfast, to be confused by toast and riveted by a napkin’s folds. I don’t know. But living it every day, as I do with her, I can imagine worse.

When Alda stopped banging the drum, the music therapist brought out some old French folk songs. Accompanied by her guitar, I sang them loudly, in Mom’s ear, with great articulation. She shifted, she recognized. She sang with me. And, for the duration of “Au Clair de la Lune,” she was there.

Written by Lea Haravon Collins

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Sue McCann
Not Sleeping

The view out my window this morning as the rest of the world sleeps. My sleep was disrupted by a boxer bulldog mix with itchy feet. But sleep issues are common for people with dementia and that makes caregiving difficult. Keeping a routine, limiting day napping and encouraging socialization can help. 

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Sue McCann
Communication

 When there are fewer and fewer ways to communicate, we rely on eyes. And touch. Somehow, dementia clears away all that was extraneous in our relationship - the tense silences, the searching for something to say, a mother, walking on eggshells afraid – nay convinced – that she will somehow offend her daughter by asking the wrong question by being supportive in the “wrong” way. Now, as a mother of a young adult daughter, I wish I could tell her: Mom, I understand now. And I am sorry.

Now that there is so little left, there is so much left too, but a different kind of much. Dementia leaves very little of the trappings – the ungainly human attempts to connect that mothers and daughters are heir to. What is left now; smiles, touches, a fork to her willing mouth. Sometimes a wink.

Sometimes I think that the soul is happier with dementia than is the ego, or any other part of us. The soul can speak through its window, the eye. It can feel through physical contact. Small talk is both foreign and the only means of speaking to one another. “How are you?” I ask her countless times in an hour. Her answer varies at each query. Her answer does not matter. The touch of communication, the connection, does. That is all there is, and it is enough.

As more and more losses occur, more and more failings and leavings take place, how will I find a way to connect to her?Our souls will teach us how. I am an unwilling student but a willing daughter. Dementia has gifts and one of them is these deeper ways to connect without meaningful words. I am still with you, Mom. I am never leaving you in the soul ways, the important ways. And even though I wish I could ask you detailed questions – or really any questions - my soul is happy because it has found you.

Jennifer Maher
Valentine's Day

Making Valentine’s day cards with my Mom has been a tradition of ours for at least five years now, since she moved to Iowa City to be closer to me. It’s also special because my birthday is the day before. Today was the day. I went to the nursing home for their Valentine’s Day craft time.  I asked her to make me a card. She could not do it. It was the first time. Another goodbye. Another lost connection. Another ambiguous loss.

“Mom, can you make a card for me? Can you write your name?” She said yes to both but could do neither. She sat, hunched over with eyes closed, pen in a hand trembling slightly, then more forcefully. I took the pen from her. It was too painful to leave it there, strong purposeful, in her useless hand.  I made the cards.

 

Small delights: she liked to look at the stickers on the table, the cards that I made. She seemed to have some memory of doing cards before. Low bar. But still, I want you to hold a pen and make a card for me.

I see glimpses of her, but mostly I wonder where she is going?

What will we do next year on Valentine’s Day? I know that this is going to get worse. I thought I could not bear it when she did not know my name. I have borne it. What more will I have to bear? How can I say goodbye when you are still here?

Jennifer Maher