I Can Type Through Closed Eyes


WickedWitch1How can someone, let’s say me, go from a woman who was thrilled only a night ago when Al said he loved his sister  to the wicked witch of the west this morning.

This is the fourth night in a row I am not getting any quality of sleep. Quality, an interesting word, I think.

Quality of life, quality of living, quality of spending time together. Now suddenly this seven letter word can’t seem to release itself from my pointy tongue this morning.

I am not usually awake at 7am but here I am. Sitting here with a half-empty cup of coffee. A smoldering blue line of smoke rising from my ashtray. My  pink long-sleeved nightgown with Christmas gifts for its scene. I think this is to remind me that it is truly the Christmas season we are about to enter into.

As I look out through half-slit blinds I see the first ray of daylight peeking through. Another night has come and gone. Al has just gone to sleep and I am sitting here bitchy inside. I know I am tired but I don’t know how to fix it.

Yesterday Al went to the Day Program. I had an appointment I had to attend to and then I scurried to the grocery store; like a squirrel going after nuts to store for the winter. Except I was replenishing our kitchen cupboards and refrigerator.

Grocery shopping has become a chore more than a pleasure. Maybe a lot of you don’t see pushing a noisy, wire, gum stuck on the wheeled cart down the aisles a pleasure, but I always did. It was a chance to look out for people I know, a chat here and there, looking for the bargains.

But anymore it is do I have everything I need for Al. Will he be able to eat this meat or not? Do I have the apple juice, prune juice, the kind of snacks he eats. Which by the way the latest rage in our house is Little Debbie Star Crunch or Kellogg’s Pop Tarts. Do I have his yogurt. I hope I have enough macaroni and cheese since he can eat this pretty easy. Do I have  enough pancake batter? Oh that reminds me, do I have enough chocolate chips left at home for the week? We have to add the chips to the batter.

Ever since Al has become worse he extremely enjoys chocolate and sweets. Oh crap, I didn’t check the amount of chocolate ice-cream. I better pick up another box. Can you believe I take a list with me also?

This is how scatter brained I am it seems lately. In between the list I  need to be home running the washer, which will be Al’s bedding. I really should be sweeping and dusting his room since he is gone right now.

Have I changed my own sheets this week? Oh forget that, change the sheet on the couch, because this is where I have laid my  head this past week.  A much shorter walk to Al’s bed then my bedroom.

I feel like my life is out of control. It is spinning but never stopping. I look at that empty couch and dream of my head on that pillow but also realize that the helper will be here in less than an hour and I am still not dressed. I haven’t touched my hair or brushed my teeth.

I did manage to give Rhino fresh food and water. Saving the cleaning of the cat box for when my eyes are more awake. That fat cat is in on my comfy bed, sleeping on my extra pillow. Al has finally drifted off to sleep, and so here I sit, the wicked witch of the west.

Feeling sorry for myself, pouring my tired thoughts out to you. Obviously looking for a pity party. It is funny as I look back at what I wrote. A grown woman, full of love and compassion. Empathy is my middle name and yet I am definitely green-faced and cat claws are showing, just like the photo above.

And all this is from a silly thing called lack of sleep. Do you think I will turn into Dorothy’s worst nightmare and remain this way? Lord I hope not. When the caregiver comes and breakfast and medications are over, I am going to find my pillow and we are going to meet somewhere in the middle. I don’t care if it is daylight or not.Judy-Garland-as-Dorothy-i-001

31 thoughts on “I Can Type Through Closed Eyes

  1. Years ago my Gram used to sing a song that went something like “Go to sleep, go to sleep little baby” , as she rocked me and that song popped into my head while reading your post. I sincerely hope you can get some sleep Terry and that it will be a rest and renewal to you body, mind and soul. God Bless my dear friend.

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  2. pretty typical of a care giver…I know my sister didn’t sleep all night for about 2 years…taking care of her ill husband…and I saw all of her moods or heard them…NO!…it’s certainly not fun…and makes us quite the witch as you say…Just fill in the cracks whenever you can Terry…Learn if possible to rest when Al does…and the house will wait…That’s when I would go help her out…doing small chores that would just spruce up the place…Maybe your aide can do that for you sometime…or a sweet friend…Don’t be shy to ask…you need help!

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  3. Good morning my name is Lorraine and I recently came across your blog. my wonderful boyfriends father has MSA and so I have recently started doing some research about this disease and I came across the Facebook website. I feel we all are blessed to have someone who is so open and honest about the pain and tears of being a caretaker to a suffering loved one. I feel Iike in a way I know you from the beautiful things you write. I know you feel like the Wicked Witch but its really not that bad at least you still have feelings its when the feelings end that its not good. At least you have a helper so trust your helper go take whatever did you need to sleep maybe even pop in a couple of air plugs. warm up your heating blanket if you have one and give yourself permission to just sleep because your body needs it. If you don’t sleep you’re going to be almost drunk.! Talking about shopping I know what my mother did and home care for her mother that 10 years ago when my grandma was basically going from dementia shopping for us to take exactly like you said it was don’t want to just going and grab shopping cart and then…crap you get home and the two most important things were forgotten! Sorry for some of the odd grammar… I am typing this voice recorder on my ph. autocorrect does funny stuff at times! I wanted to get my words down on how I’m feeling about how you’re feeling right now. So just remember that we as your extended MSA family are here for you to reach out to you and hopefully you feel our arms of love coming from to you from all over the United States. Here’s to being Dorothy again very very soon. God bless you

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    • It is so nice to meet another new friend. I have been caring for Al for six years but the past six months have quickly gotten worse. I have always gone it alone until the past two weeks. I am so thankful for her. My biggest issue aside from being tired is I feel so helpless, just watching what is happening. Big hugs my friend!!! Thanks for the chat! Come by again!

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  4. Sleep! Sleep! I know that the pressures of all that need to be done & purchased will push on you. But you will remember those things better if you are rested. You will have more energy and emotional stability if you are rested. Remember what the airline stewardess says – “People with small children, please put the oxygen mask over YOUR face first.” Maybe you can find a store or service that will deliver your groceries and sundries. I know I am looking for that. Maybe some friend – who is not comfortable watching Al would be comfortable shopping for you. That doesn’t mean you can’t go, but it would be more enjoyable then. I know I also enjoy shopping. That comes from the days as a young Navy wife and that was the only place I could spend money. Not trying to fix your problem, just sharing what is going on in my head about the same issues we both deal with. And yes my evil twin sister shows up with her sailor mouth about the fifteenth time I have to climb the stairs to find out that he just want to know what day it is.

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      • Yes we do know. Bob and I are not far behind you. While he is in fairly good health right now (I always say he’s the healthiest terminally ill man you ever met) and so he is enjoying the holiday season, I am taking every chance to appreciate it as much as possible because it’s likely his last. Hugs love and prayers to you

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      • I am so happy that you and he can really enjoy this Christmas. I doubt if Al will be here next Christmas, and according to him, he won’t be here this Christmas. I don’t count anything anymore except this minute. hugs my friend

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  5. Everything seems better when you are rested, Terry. Is it at all possible to get more help, more time for yourself? If not, you need to find ways to sneak more pleasure into your life, even if it is just losing yourself in a movie, or an engaging series on Netflix. Even better would be one that Al would find equally engaging so you could both zone out together for a little while. Hugs, Terry. I’ve been there, and know that, however much you love the person, it is mentally and physically exhausting.

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  6. Lack of sleep is definitely a mood changer. I know it makes me cranky sometimes. And – you – on top of lack of sleep are being pulled in 50 million directions. That can’t be good on stress levels. Hope you can catch a good nap and a good night’s sleep soon.
    {Hugs} to you & Al

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  7. Without enough sleep, function is not possible. My sister in law is the sole caregiver for my brother, who has MSA. Curse this horrid disease. My sil also has a hard time getting enough sleep, waking up every few hours to help her husband. I hope you can catch a few hours of sleep! Bless you for all you do.

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  8. Maybe take a nice hot shower and that will help you be able to rest deeper and feel more refreshed when you wake. Hope sleep finds you soon sweety. You will be back to yourself as soon as sleep comes.

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