caregivers support, Caring for a parent, Dementia, memory loss, Mental health, mother daughter relationship, paid caregivers

No, I Don’t Know…and I Do

I don’t know what it’s like to be old-old. I don’t know what it’s like to be visually impaired. I don’t know what it’s like not to be able to hear. I don’t know what it’s like to be afraid to eat. I don’t know what it’s like to feel like someone else wants to be in charge of my life. (Well, I do kind of know that.) I don’t know what it’s like to be losing brain cells at warp speed unable to make it stop. I do know what it’s like to listen to the desperate attempts to place blame for the above. And I don’t deal well.

If Mama had said she couldn’t find her clothes that morning, would I help her, I would have been so pleased to, so understanding of and sorry for her frustration. But instead she couldn’t find them because M might be left handed and therefore maybe doesn’t know her right from her left and didn’t put them where she was instructed to and she needs a caregiver who “knows how to work with the blind” or maybe M put the wrong shoes and the wrong long underwear downstairs in the Goodwill box and yes I can go look but she wants to come with me, why I didn’t know.

I checked her bedroom first. “Don’t touch anything,” she said. I didn’t. The shoes and the long underwear were right where they were supposed to be. The wrong ones were there confusing her because she refuses to follow through with getting rid of them, but doesn’t remember that.

If she had said a giraffe ate her shoes, I could deal with that too. At least I think I could, but I’m aware the water is always clearer in someone else’s pond. My mother’s dementia is very subtle, and as I’ve written before, hard to separate from who she has always been. It’s difficult to explain to people who see her rarely, to whom she seems perfectly amazing.

I find I can’t do the “better to be kind than right” thing when she starts working overtime to find a scapegoat. I am incapable. I told her that morning it was really hard to help her when she was so focused on the blame game. I told her it wasn’t nice, it wasn’t true, and it was hard to listen to day in and day out. Everything I’m not supposed to say. But frankly agreeing with her is counterproductive. (Disagreeing doesn’t change anything either, but it makes me, at least, feel better.) And then I excused myself from her presence because, well, for the same reason I sometimes used to put my colicky baby in the crib and went out on the porch.

When I story-tell to family, they remind me she is 100 years old and has dementia and that makes her power to reason wonky. I know that (read that in all CAPS with multiple exclamation points), just as I knew my son’s stomach hurt and he had no way to tell me what was wrong or what would help, and nothing did help. Being reminded of the facts doesn’t really help when I’m nearly off the deep end without a life jacket. I’m sure they are tired of my bitching too. I just need to express frustration and feel like someone is there to pull me back from edge. Reminding me of the facts is more like a push. I am grateful for friends and readers who have never even met my mother—or me in many cases. You are my life preservers.

I just finished a novel, “They May Not Mean to But They Do,” by Cathleen Schine. Sister Rebecca asks why I keep reading these books that are just like my life. I don’t mean to, but I do. I guess for the same reason young mothers read books about young mothers, and women who are in the midst of divorce are drawn to books about women in the midst of divorce: we need to know we’re not alone, and we’re looking for clues to help us understand our own lives. Anyway, the book is mostly told from the elderly mother’s point of view, and it’s interesting. It sounds dreadful to be alone, and for your children to be taking over your life when you think you are perfectly capable of taking care of yourself. Except you’re not and you can’t admit it.

I don’t know the answer. How does a child keep a parent safe when the parent doesn’t understand they are not safe? How does a parent not take out the fact of old age on the very ones who most want to help them navigate the rough seas around a foreign land and whose very presence reminds them daily that their vitalness is forever gone? How do all parties keep from going mad?

I would amend the last line of Philip Larkin’s poem: “And vow to not get old yourself.”

“They fuck you up, your mum and dad.
They may not mean to, but they do.
They fill you with the faults they had
And add some extra, just for you.

Man hands on misery to man.
It deepens like a coastal shelf.
Get out as early as you can,
And don’t have any kids yourself.”
Philip Larkin

More and more I think I can’t keep doing this indefinitely. I know some children do it for a very long time. I don’t know how. I’m no martyr, nor do I aspire to be the world’s most anything daughter; there will be some changes down the road. I’m ready for an exit plan.

23 thoughts on “No, I Don’t Know…and I Do”

  1. In alot of ways, you are doing the hardest job there is. With a child, there is so much hope for what they will become, when they quit throwing the fit and grow up. With the elderly, it is not the same. Love your writing. Hang in there. Thinking of you!


    1. Thank you, Penny. That would be WE are doing the hardest job there is. You are right, it’s not the same as raising a child. In many ways they act alike, but the care and the outcome are very different.


  2. You know what Gretchen—every single person who attended the birthday soirée for your Mom, saw you standing at her side. She knew you were there too. She couldn’t have gone on without you. Bask in that. I’m not sure what you need or want. But I do recommend you bask.


    1. Thank you, Kathi. I read my mom the note tonight, including the Beatles lyrics, you wrote for the book. She was very touched. Of course I could barely choke out the reading of it. You are dear and thoughtful.


  3. It’s like when you’re ill and it seems you’ll never, ever get better. Everything is colored by your illness — until the day you are fully well again. Then you see that the world was always wonderful but you couldn’t see it due to your illness. You are not like your mom and never will be — but it seems that way until you’re no longer immersed in the illness that colors your life.

    I imagine an exit strategy is like a tunnel to reality that will help maintain your sanity until you can leave all this behind and stand in the sunshine again.


  4. Dear friend: I think having an exit strategy at hand…one that’s viable, helps the feelings of feeling trapped. I totally support you in creating this for yourself. Your mom’s suffering of wanting things to be other than how they are, creates suffering around her. It’s painful…plain and true.


  5. Hugs and acknowledgment to you for the job you do with dedication, and to which you bring infinitely more dignity than many bring to prime-of-life jobs, i.e., family, work, leisure, etc.!!
    Need more breaks? Playing music in your environment? Need more yoga practice at home to stop the noise of life? I can see that the hardest job might be ensuring that you are taken care of, while taking care of another. More hugs 🙂


    1. I got a ukulele for my birthday. I need, now, to enroll in Erica’s school! I take a lot of breaks, but it never feels like enough! I’ve also missed yoga the past five weeks (no place to park today, it was ridiculous). I’m not good at home practice, sadly. No discipline. More writing is one thing I need. And more local friends. I am grateful for a weekly coffee date.

      Thank you for the hugs!


  6. we’ve talked about this, of course; I am the same way, and for me it’s because scapegoating is the worse ‘violence’ we can do to another person (and probably to ourselves). My mother has engaged in it all her life, so the ‘she’s old’ excuse doesn’t let her off the hook for me. It’s a reminder (for me, at least) that we take into our old age and dying all the stuff we’ve carried around all our lives – just probably more so. xxoo


    1. Hmmm…I dont know about that, M. I have no desire to be who I think I was at 40 or 50 or even 60. Perhaps my physical healing lessons have shown me that, in some ways, its possible to be in a mode of refresh, reload…my belief! So I ask myself, why did I say that? Why didnt I say something else? Why did I do that? What happens if I do I this way? Next time I will…going out to get a new fav wine! Flat Creek sparkling with almond!


      1. i should have said we take that stuff into our old age and dying if we haven’t done the work of healing and processing. make better sense that way?


    2. My mother did not do the work, and she has been carrying this stuff around all her life. You are absolutely right. And that’s the issue. It’s hard to detect as dementia, because she has always been this way. Do the work, and that doesn’t necessarily mean therapy; it means awareness and willingness to learn to be different while you can. Dementia makes that impossible. She can’t be different now, but I still want her to be. And I want not to be like her.


      1. I thot about this all day…doing the work, becoming aware of ourselves, our thinking, and how we be in the world, yes, those are key to becoming. Being conscious. Or not. All paths lead to it, I feel, but some beings wont, cant, arent ready, dont see the need for it. And I ask myself, how can it be! And it simply is. We choose. Love and hope are needed everywhere, always. Lets keep them active, always.


  7. Those down days can be especially rough. Know that you’re loved…even by all your readers and friends who’ve never met you or your mom. Thank you for remaining authentic in this space.


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