For real.
😵💫
Let's just face it. I get really quite cranky and ugly when my sleep is interrupted multiple times a night. Especially when the sleep wasn't good for the past few days.
I know why some people choose a Nursing Home over caring at their own home. The demands are sometimes super human.
His med change hasn't changed his sleep habits. For two days we thought we had it going pretty good.
Then bam.
A half hour after he went to bed, I got the "Val. I need that pill." I had just turned off my reading light and started to fall into dreamy land.
Lights on. Pill handed out.
That med worked for 2 1/2 hours. "Val. I'm hungry." I looked at the clock. Midnight. "I want oatmeal."
Lights on. Bleary eyed I made instant oatmeal. I went back in the living room to wait. Tap, tap, tap, tap...the endless tapping of stirring his oatmeal into tiny chunks felt like a hammer in my brain. It was a hammer in my brain. My teeth hurt and my eyes squinted.
So this is what a major- burnout -melt -down felt like. I wanted to walk into the other room and grab his cereal away and then tell him to cut it out and JUST GO to BED!
Then the waves of guilt hit me like a brick up side my head.
He couldn't help what was happening to him. He can't. It is not his fault. His brain says feed me. His brain says *I'm awake.*
I clear the empty bowl away and say something snide under my breath. Where did that come from? Geeze, I'm so bad. I hate myself for a moment as my head starts to feel squeezed.
I ask if he is ready to go back to bed. He says no, he can't sleep. Do I call the nurse line and ask if he should have another pill? Rich says no, it won't help. He is wide awake.
He wants to sit at the table and just sit.
I go back to my little cot which feels like a torture chamber. My everything aches and my head throbs. And I am surprised by how angry I feel.
Damn.
At 3am--ish he wheels back towards the bedroom. I help him switch over to his CPAP. He decides to leave his clothes on and lays down. I try to lay down again.
He gets back up and sits on the edge of the bed.
"What now?" I ask.
"Nothing," he replies.
I get up and find some Tylenol and try to find slumber. Charlie groans when I return to the cot. Even he is tired out.
I keep an eye on him. By the light of his clock and can see him attempting to peer at his hands as if he'd never seen them before. What is he doing?
I fall into a fitful sleep and am awakened an hour later as I hear him get up and sit in his wheelchair. The lights go on and as he scoots through the living room he says, "Coffee made?"
My head blows up and I put on my clothes for the day. I grumble under my breath with words I shouldn't use around children or the dog.
Night and day blend together in a nightmare. Rich asks me why I am so mean when I put his coffee cup down harder than I intended to.
I apologize and explain that my head is pounding from lack of sleep. He just looks at me. He hasn't had sleep, his night must have been even more miserable than mine. I take a deep breath and rearrange my attitude.
My mantra.
And then my biggest fear hits me. What happens when he is gone from my life? Maybe that this is why I am here. This is us. I will not look back on these days with anger but with more understanding of what it is like.
Maybe my experiences could help someone else.
This is so hard on both of you. You’re doing what you can: re-arranged your life and bought a cot and made yourself available. And you are human, a good human too, in spite of over-tired feelings.
ReplyDeleteIt is hard. I cannot imagine not being able to sleep for 20 hours as sick as he is. I did call the Hospice people and his nurse called me back and we came up with another plan of action so I can sleep at night.
DeleteHospice cares for both the caregiver and the patient. Palliative Care does also, but at least now I'm asking for help.
We hold you in our thoughts and prayers. I know this is the most difficult thing to go through and how sad and tired and frustrating it can be. It has been 12 years since I slept on a cot outside my dad's door and it seems like yesterday. You get so tired you are wishing your life away and then you are racked with guilt because this is the moments you want to keep in your memory.
ReplyDeleteIt's not fair. It is not fair to you and not fair to your husband. The whole situation is not fair. You should be working and hiking and enjoying the days and rocking on the porch at night. You should be eating at a diner or packing a picnic or visiting grandchildren. It is no fun, and not fair, to have to deal with the hand we get dealt.
I feel so bad that your lack of sleep is happening. I wish I could sit up with Rich at night so you could rest. I know just one full night of sleep could make it better. (hugs).
You know what? Knowing that you have gone through this and that you have survived and do what you now do makes me feel stronger.
DeleteI got grumpy as all h3ll, but feel like I will make it through with the bad days and see some better days.
Tomorrow I will have the new home health aide coming in for Respite for 4 hours.
I told my son that I could take my cot and drag it out into the meadow and sleep on the edge of the woods for 4 hours if I felt like it. Now isn't that something?
Somehow I feel like I won the lottery when I get some relief.
Thanks. I'll get through it. Tonight I am sitting on the porch and watching the clouds. We are under a tornado watch so there is that to think of.
Thanks.
I know how hard it is, laying awake because they are moving around coughing and then when the coughing stops you sleep but wake up startled because they are not coughing. It is horrid. My heart goes out to you Val, do your best and cuss every once in awhile. Hope the eight hours a week helps you to keep up...then there is Spring stuff fencing and weeds and mowing that will start. Ask for what ever help you can.
ReplyDeleteVal, you are one tough, sensitive, bright, hard working woman. What you are doing is never easy, but you know it is the right thing to do. Both my Mom and Gary's Dad died here at our farm and we were very grateful they could be here with us when it happened. Hope you are having more success in the sleeping department. Lori
ReplyDeleteIt has its moments of sleep...not sleep but better now!
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