Sharing is Caring
Being a caregiver is tough, especially when it’s your aging parent
So is sharing yourself, your time, and your talents to make a person in your care feel loved, comfortable, and well-cared for, even on your worst days.
You’re exhausted, and maybe they’re on your last nerve because they make you feel like they are unappreciative.
Take my dad, for instance. We have very little communication because of his aphasia rendering him mostly mute and his hearing aids that don’t work half the time. He can’t voice his questions, concerns, likes, or dislikes, but he can make noise.
Like harrumph or arrrrghhhh, when he doesn’t want what you are giving him or doing for him, and there is a look of disgust on his face when all you are trying to do is help him-however-you can’t really understand or make out what he is trying to say.
It’s beyond frustrating.
Today, a speech therapist is finally coming in from home health, and I’m praying she has some tips for us besides the whiteboard. It doesn’t work half the time because what he wants to say does not translate to the board all the time. He has frontal lobe dementia. He might be in pain, he might be angry about me trying to use the gate belt on him, but all he writes down is a word or two that makes no sense.
Luckily, I have been around him so long, and I’m pretty good at applying the context of what is going on at the time. Not always, though. One night, I was up with him until 11:30 at night (with my husband trying to help also), trying to figure out what he was trying to say. I was crying, he was upset, so I said, “Let’s go to bed and deal with this tomorrow.” I never did figure it out, and the next day, it was forgotten.
That isn’t fair to him because so much just keeps getting passed over; his life is a silent, mostly compliant one these days, just trying to keep the peace. That doesn’t mean he still doesn’t fight me on some issues. We just keep trying to make it all work; we have a routine now after three or four weeks of him living with us. Most of the time is peaceful, yet I stay tense. On alert. Waiting for the other shoe to drop.
Is what I’m doing going to piss him off? Am I being attentive enough, even though I have my own things to do?
It is very trying.
My future daughter-in-law is also good at sharing. She gave her time to come and help me a couple of days last week. She took copious notes, having a degree in social work, to see who to call about making sure Dad is getting all he is entitled to. She also brought over some equipment left behind by her recently deceased grandmother, bless her heart.
We now have rails for the toilet, a wheelchair, a doorbell (so he can call me if I’m in another room), and a hospital tray so he can reach what he is eating better. We use all of it except the wheelchair, which is the last resort if I can’t handle getting him to an appointment. There was also a baby monitor, walkie-talkies, some cream for incontinence care, and several bags of bed liners.
Much needed, and much appreciated!
Unfortunately, she is off to Spain on Sunday for a unique opportunity to learn about the culture while also being an au pair to a couple with kids that suffer from Down’s Syndrome. I’m so happy for her and proud of her at the same time, yet sad that she will be gone for at least 6 months. We will miss the heck out of her!
But back to Dad now.
I feel like I’m parenting the parent because sometimes I just have to. He doesn’t like having his liquids cut off at 6 or 7 pm, but I don’t like doing laundry every day when he wets the bed. I choose what he is eating most of the time; he isn’t picky, thank goodness. In fact, he seems the happiest when he is eating, like that is his only joy left in life.
He’s sick of watching TV, but he can’t or won’t do anything else.
Sometimes, I’ll take him out on the patio to enjoy a change of scenery. He doesn’t like to read anymore, and his tremors make it almost impossible to play games on his tablet. Any fresh ideas are welcome here. Remember, though, that he is at my house rehabbing and recovering from several falls in a row. He is weak on one side because of Parkinson’s. It really limits the activity he can do. I think he actually looks forward to the therapists that come in to do physical or occupational therapy on him; it breaks the boredom.
Unfortunately, the idea that he is getting stronger also makes him believe he is ready to go home, but I’m afraid we can’t support that. No, the smarter thing is to get him strong enough that he will qualify for assisted living. There they can take care of him while letting him live independently; that’s what all the brochures say anyway.
So for all my griping, the daily laundry, cooking, cleaning, coaching, and caring for my dad is worth it in the end because he will understand someday that I was only trying to help. Or maybe he really does know it; he just can’t tell me. My favorite time of day is bedtime, when I tell him, “Goodnite,” and have the pleasure of hearing his version of the same.
I know exactly what he is trying to say. :)
