This is one of those days. One of those days when patience is harder to find, when motivation is so very scarce… when I just want to go to bed and call it a day. I just want to sleep, and dream, and to wake up to a new day when things feel so much better than they do right now.
I’d love to be able to honestly share that this mindset is rare, but it’s so much more common of a feeling than I think it should be. Things have changed, and my mother needs so much more from me than she’s ever needed before. I wish I was a perfect person and could avoid feeling impatient. But I’m not, and I both feel and sometimes express my impatience. I speak when I should just be quiet. What’s happening isn’t my mother’s fault, she has no ability to fix anything that’s happening – which means that acceptance is my only recourse. Some days this is can be very difficult.
Understanding the Depth of Her Confusion
I wish I had a better grasp on dealing with my mother’s confusion. She’ll say, “I need to go to the bathroom, but I don’t know where to go…” I often use humor to respond to uncomfortable situations. So, with questions like this, it wasn’t uncommon in the beginning for me to respond, “Well, you can go out in the front yard or you can go to the bathroom…” Once I began to see my mother’s distress at choosing the correct destination, I stopped being so flippant.
You see, her confusion at these points is genuine. Yes, the answers seem obvious to me – but for her, I’m starting to more clearly understand, these things need careful consideration. Her confusion is real. She’s not a toddler and repetition doesn’t help things sink in. Trying to guide her to a logical conclusion has only one potential outcome… my frustration.
The Difference
With a toddler, you can ask questions that encourage them to think and to reason out problems. Each time I guide my mother through the steps of using and leaving the bathroom, I’m reminded that it doesn’t work the same with dementia.
Mom will be in her TV chair and will say, “I need to pee, but I don’t know where to go.” I’ll most often respond by telling her she needs to go to the bathroom, at which point she’ll tell she would, but she doesn’t know how to get out of the chair.
“Take my hands, Mom.”
She does and we get her headed towards the bathroom.
As I’ve shared in earlier posts, she has an ileostomy bag. Once I have her seated, if appropriate, I’ll say, “Ok, empty your bag mom.”
“What bag?”, she asks earnestly.
When the patterns emerge that were developed while raising my son, my response is too often something along the lines of, “Do you see a bag, mom?” Touching her ileostomy bag she’ll ask, “This one?” And we move forward from there. Then, thing’s proceed.
“Ok mom, use the paper to wipe.”
“Wipe what?”
“Use the paper to dry where you peed, mom.”
But here’s the reality. Her lack of recognition doesn’t reflect a lack of familiarity with a process as it does with a toddler, it demonstrates her newly developed lack of reasoning skills. The thing here that’s currently lacking is my ability to recognize the real problem and respond appropriately to assist someone who’s brain isn’t working right instead of treating her like someone who’s just learning.
How Long Can I Do This?
This question comes to the forefront of my mind some days. I know that in the mix is my promise to my mother that I’d keep her at home as long as possible, and that if we could make it happen, she’d spend her last day in her home.
Then we come to the bitter reality. Putting her in a care center isn’t an option at my income level. A dementia care center wants $3500 to $4500 a month to bring in someone like my mother. At the lowest end, I might have enough left each month to buy my groceries, but not much else. And my paycheck wouldn’t allow me to bring her into a dementia care center at the higher end.
We have no real options. I’m coming to the point where jumpsuits and diapers are becoming a potential reality. Her care is no longer something I’m able to address all day long every day and still live my own life, at least to some small degree. So, either I keep pushing along as I have been, or I make the decision that living my own life is just as important as the environmental familiarity I’d like her to have and decide that living on a few hundred bucks a month is a reasonable price to regain part of the life I should be living right now.
Really, Rod?
Is this selfish? Being judgmental to myself in these matters comes way too easy, and yes, this feels completely selfish to even consider this. I can sacrifice 90% of my income and regain my life, while my mother gets passed off to people she doesn’t know and shiny tile floors with nothing to look forward to but visiting hours.
This really isn’t easy to even consider as an option, and that’s why I needed to write about it. Writing is my personal therapy, and you, dear reader, are my support system. My candle is burning fiercely at both ends right now, and I don’t know how long I can keep this up.
Have you been here? Can you share your experience to help me on my path? I will welcome your inputs. This isn’t an easy place I find myself in, and I could really use some guidance from the voice of experience.
Thank you.
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