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So, after a short vacation for some free time which...WAS awesome and wonderful...and a weekend visit from a granddaughter, I was left with the Sunday afternoon blues.
I'd had a great weekend with my son, his wife, and Rory. Someone else saw to the meals and checked in with hubby. The animals had enough hay and water to cover them for the time I was gone.
For the 36 hours I was in Kenosha, I didn't worry about making sure someone took their pills on time, if he got to the bathroom on time, or what did I have to make for breakfast, lunch, supper. I had back up for that.
Then, this past weekend I'd been treated to a girls' day out by my granddaughter, good sensible conversations about books, dragons, life, and all that normal stuff.
These were things that made me feel alive and normal. I had human interaction and lots of laughter. I remembered what life was like 8 years ago. Before one medical issue after another happened.
I would be lying if I said that at this point I am pleased about always being the person in charge.
Granted, my husband is not difficult and he is rather pleasant. The man who used to fix things, get things done, and be fun and engaging is gone.
In his place is a man child of sorts. There are very few things he will or can do for himself.
Now he sits at the table and stares out the window. Sometimes he has something to say but most of the time he struggles with words so it is easier to be silent.
He refuses to wear his hearing aids, so conversations can be pretty bizarre especially when his aphasia perks up.
"Bagels are trying to get in the scrins with those flies. Better shut the door."
Translation: Bugs and flies are on the screens, shut window.
I feel guilty for being grumpy and irritable when he spills on himself and the floor.
He asks me several times a day what we are having for lunch or supper. I tell him over and over. Sometimes I just purse my lips and tell him to think about it.
And then I feel like crap because he can't recall what he was told.
On other subjects he seems sharp as a tack.
It makes day to day communication otherworldly.
The interesting part of all of this is...
Maybe the time off and fun visits make me realize what I am missing.
I am jealous of those who have freedom to travel and the freedom to have friendships and a social life. I'm tired of turning down all the invites to friend's houses for evening campfires and get togethers...and other events. It is tiring to explain over and over why I can't just pick up and go.
Then the invites stop. And there it is. The thing in my life. Really, some don't want to hear my struggles and I don't blame them. So I don't talk about it.
I know he is better off here at home than anywhere else. Yet once again I feel the discomfort of wishing things were not this way. Some days I'm just so tired of being the responsible adult.
I don't know what to say except to validate your feelings. When I was caring for my father after his stroke and during his cancer journey, it felt like days lasted much longer than 24 hours. I was lonely. I had facebook but I knew whining 24 hours a day was not what people wanted to know or hear about. It was hard to do anything but monitor every move he made so he wasn't hurting himself in some way. It was so frustrating because almost anything I did or said made him angry. And I knew he was frustrated because he couldn't make sense of anything happening. But it didn't make it hurt less.
ReplyDeleteI started to make stupid mistakes myself from lack of sleep (he kept removing his cpap during the night) and stress. I gashed my head on an open cupboard door that I left open. It was hard to drive to appointments because he was always convinced I was lost and not taking the correct roads.
And then the guilt because you know you will miss them when they are gone. And you don't want them to leave. But you see the future as this same thing every day with no future.
I am so glad you got your weekend. I totally understand how you feel much more trapped now that you had a taste of being more free.
I should mention that once a week my dad's friends would come and sit with him about an hour and a half. Sometimes they would take him for a ride if they could get him in a car. I was able to go to my own house and just sit in a chair. I still remember how special those moments were.
That is validation, to know someone else who has lived through a similar situation.
DeleteOh yes, whining is not something people want to hear but as you pointed out a taste of freedom was wonderful and hateful at the same time.
Most of the time I am okay with what goes on. But being over tired and frustrated does get to me.
Another woman at the gym is developing a little program where people sign up to do good things. She asked me if I had a few hours a week to spare to do volunteer work.
I must have given her a stare of WTF? It took her a moment or two of my awkward silence to recall that I was a Caregiver and any spare time was time I spent at classes or perhaps taking a hike.
That guilt you mentioned is real. You wish their suffering would end and yours with it...and then you realize you would have a new set of suffering.
Thanks for your kind and wise words.