This is from Being In the Moment – a book by Karen Stobbe (available at beinginthemoment.org). It’s an excerpt from a chapter written by Karen Stobbe’s daughter Grace. It is her perspective and opinion about growing up with her Grandma’s Alzheimer’s.
Questions that may come up:
Why is Grandpa acting like that? Just like you or me he is responding to the world he perceives. His short-term memory doesn’t work like ours does. Your Grandpa’s understanding of his surroundings is different from yours. If your Grandpa does something you don’t expect or understand, think about his point of view. What is he thinking about that you’re not? What does the present moment look like to him?
Why does Grandma get angry?
We all get angry sometimes, whensomething doesn’t make sense, when we don’t get what we want, or when we hear something untrue. Someone with Alzheimer’s gets angry about those things too. Their standard for truth is different.
It may be hard to understand why your Grandma is angry when you tell her she can’t have more ice cream because she ate a bowl minutes ago. See if you can figure out what’s going on in her world. Perhaps she is tired of being told what to do? If someone bossed you around, you would get upset too. (I know it’s not being bossy, it’s caregiving, but bossiness can happen) We have to understand how frustrating it must be to search for a memory. When you are in a situation, but you can’t remember the last few minutes. That would be distressing for anyone and exhaust anybody’s patience.
Will they forget me?
Over time, they’re likely to lose details about you, but feelings hold stronger than facts. So even if they don’t remember your birthday or that you play the violin – how you make them feel remains the longest. They’ll hold onto how you are to them longer than who you are now. However, dementia is different in every person and maybe, for a while, they’ll remember who you were ten years ago, or the summer you stayed with them, or what you made them at art camp, and they’ll see you as who you were in that moment in time. So yes, they will forget. To them you might become constructed from pieces of feelings from different times. I chose not to focus on my name being remembered or not. I could see in my Grandma’s face she remembered; she knew me. I appreciated the opportunity to discover more about myself. Who you are is largely a matter of choice. In that regard being with a person living with dementia is a real gift; you can remake yourself each day with them.
What do I talk about with my Grandma?
What are you interested in? What is she interested in? What sorts of experiences does she have that you don’t know about? Tell her about what matters to you. Figure out what things she likes to talk about or remember. Does she like to hear what you’re up to? I liked to try to think about something in my life that was similar to what she was up to at my age. That can be a good conversation.
What if they don’t want to do things with me?
Kindly, ask them to help you. Even if you’re trying to help them. The feeling of being useful is needed by everyone to be happy. Let them feel needed. Ask for their help, advice or even just their company while you do something. And if they really don’t want to join you now, respect that and try again later. Their opinion might change. It might change (literally) in the next moment if you ask differently.
What if I feel frustrated or resentful?
There’s no easy fix for that. Things will be frustrating for both you and the person living with dementia. Caregivers have the advantage: we can look at the situation from a larger perspective. We, as a caregiver, can imagine what our loved one might be thinking or needing in a way they can’t. I try to remember all the more positive moments with my Grandma, but the sad moments were just as much a part of my life with her. Her forgetting her own stories, having to convince her to do necessary things, needing to spend time with her instead of doing what I wanted to do was, of course, frustrating.
However, we can only do what we are able. This is difficult. Let yourself be upset. Don’t build it into resentment. If your Loved One is responding to you in a way that makes you frustrated, try something new. Walk away for a moment. Look at the situation from their point of view. Their choices make sense to them. It’s difficult but look for the balance between what you both need. We had a way of looking into each other’s’ eyes and immediately seeing each other’s’ souls. Just a glance and I think we knew we were safe. I would grow up, she would forget more, but we could see that we held something between us no one else could ever touch.
In the hospital, the last days with her, I sat next to her all day and night as she lay there mostly asleep. She would wake up every now and then and a couple times we would look at each other and I could still feel all of her with me, looking back at me in those eyes. That night, sitting next to her, I wrote in my journal: “She looked so sad, but not pained, and gave me the most knowing smile. Then it really felt like she understood. That we were so very us in that moment and she didn’t need words or memory to say how she felt. And I liked her saying earlier ‘It’s good’, ‘It could have been’, ‘It was’. I like these bits. And I feel like I’ve said, seen, and felt the things I needed most. Said to her how grateful I am, how special we are, and how much I love her.
Seen her laugh, eyes, smile. Felt her hands, hug in a way, understanding me, her rubbing my back, kiss my cheeks, her be herself for a bit.” Those little words she whispered, felt like they could sum up the world. “It was.” I will carry her in my chest, in every Doris Day song I hear, and every crossword and apple tree I see. Now I think I grieve the memories I’ve lost of her as much as I grieve for her. We all deserve someone to search for our love, no matter how much we forget.
By Grace V. Carter
P.S. If you missed the first excerpt by Grace, click here to learn more.
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