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jriva

Caregiver Fatigue

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Hi Everyone,

 

I'm going to vent here, so if you don't want to reading venting, stop here.

 

I don't get upset....but I do admit to being frustrated, at times, over how long my husband naps and sleeps! Or is it the contrast of how little sleep I actually get that really bothers me and I'm jealous?! We've consulted three doctors and I accept that fact that needing 16 hours of sleep a day is Don's 'new normal' but I can't accept the fact that I can't even sleep when I take two sleeping pills! At least four nights a month I never even get to close my eyes and most nights I'm lucky to get 4 to 6 hours.

 

I know my sleeping problems revolve around the fact that I've spent the last four years forcing myself to stay awake until Don was in bed and he likes late night TV. But even before that, we both worked many years in middle of the night so I got too good at fighting the natural rhythms of sleep. The difference between now and then is that Don can fall asleep anywhere at any time, but because I have to do everything to keep our lives running, plus going to all the medical appointments Don's health generates, I can no longer sleep in the day time the way I did before Don's stroke. Even if the body was willing, I haven't had more than a dozen daytime naps since the stroke 4 1/2 years ago.

 

How do other caregivers cope with their own fatique, if you deal with this issue, too?

 

Sleepless in Michigan, and tired of being tired all the time! Jean

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Neeeedsleeep.gif

 

Where do I start.. Ponder.gif '

 

How about before the stroke..I would average about 6 to 7 hours of sleep..Sometimes I would nap on the sofa, but on weekends..I used to work 3 days a week, full days..Some evenings I dozed off after dinner cuddled next to him..God I miss those days.

 

While he was in the hospital I was by his bedside for two weeks, not budging only to go and eat or releive myself..Or on a rare occasion my family would convince me that he will be fine if I went to dinner with them..Someone usually was with him and would call if needed..

 

Then the transfer to the Rehab hospital, I staid in his room for a couple of nights untill he settled in..I asked should I go home or stay with him, he pointed to the lounge and smiled..So I slept or tried to for a couple of days like that..The remainder of his stay I sat by him from 8am to 10pm, leaving his side to eat and for when he went to physio.. I was told that he was realy agitated if he found me gone..

He had the fear of being abandoned something fierce those first months.. Scratch-Head.gif

 

You betcha I was sleep deprived, even as a patient in a hospital you cant get much sleep, the noise is continuous.

 

When he came home it got worse..I must have been up every hour, changing the sheets and him..Not even double briefs helped..At that time he went both, blink.gif I was lucky to have 2 hours in total..It would seem that I would just fall into a deep sleep and I would hear "up up"..

It would have been so easy to get angry and loose my patience.. but to be hones I was too tired to even do that..

We fell into a routine that he would nap right after lunch..inbetween naps in his lounge chair.. Then I made a point to nap with him, it would last half hour to an hour. Oh well something was better than nothing I said..

 

As he got into a routine at home and I around his routine my sleep depravation continued and my patience, or impatience grew..I kept it to myself. I didn;t show it in front of him..for fear of adding more stress to his life..Never mind the stress to my life..I kept telling myself that it will get better. How naive I was..Well some of my predictions came true.. He did walk by Christmas with a hemi walker..Did quite well untill the seizures started and then increased with the coming months. His strengts dicreased as his walking did.. So I was back to doing most of the lifting and pushing and pulling..

 

Just when I thoght I seen improvement in him and that affected me too, a set back would happen, and so would the sleepless nights..

 

I can count on my one hand how many nights I woke up only a couple of times to help him, only to find him soaked.. He tried to hold it in but let it go in his sleep..

He is back to using Pad inserts because when he has to go, he has to go and can't hold it..

There have been nights that I lost my patience like last night,,I just finished helping him, then I hear his favourite word,,Damn, a couple of times,, He had let go again this time getting everything wet, so here I am changing the under pad and him, again,, angry.gif I lost it,, sad.gif ..

I asked him why didn't you call me I am right in front of you.. I wish the earth had opend up and swallowed me, it would have been easier to bear than the look of frustration and pain on his face.. Appoligies don't help in this situation, they are too late,the harm has been done.. But I know that he forgave me, he realises that it is just as frustrating to me as it is to him..

 

I have tried to make our Dr's and Physio appointments in the morning, that way he and I can nap in the afternoon.. I insist on AM appointments, most of the time it works.. I just explain to them he does not do well in the afternoon..

My family knows not to call at that time too, if they do I ask them to call back unless it is something important..

Usually it will be some uninportant caller,selling something, but rarely..

 

His blood work came back and he is on Detrol now, been on it a couple of days but I see no change. He still wakes up having to go at least 5 to 6 times, with 2 out of three false alarms.. tired.gif I hate those...

I told him one night that if this continues I may be so tired that he will end up with the urinal on his nose instead of bottom giggle.gif I get rewarded with a big grin.. melts my heart,, blush.gif

 

I just keep telling myself that there will be one day that things will be better.. just like Dorothy on OZ .. I feel if I say it enough times it will happen.. Dreamer huh.. Zzzz.gif

 

Rant-Off.gif Angie... Yawn.gif I am off to nap on the sofa, again,, had an hour nap already,, Sunday my lazy day,, don't care who comes, don't care how house looks, you don't like, you clean,,, Wave.gif

 

 

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My dad has slept on the floor next to my mom for 4 years now. I am fortunate with that. She sleeps pretty much all night so I sleep. On days when I am really tired, I crawl in her bed (hospital twin bed) with her and take a nap. That way, if she wakes, I wake up also. Even though I have my dad's help with her, I am still responsible for all the cleaning, cooking, errands, and everything else that goes. I get extremely tired and grumpy at times. There are nights when she hasn't had a good day, that I stay awake waiting for my dad to come get me to call 911 or something. It doesn't happen, but I still don't sleep. I have found that when she is awake I am with her the whole time and I do everything else while she is sleeping. Like I said before, when she takes her nap in the afternoon and I am really tired, stuff just has to wait so that I can take a nap with her.

 

Cyndi cloud9.gif

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I hope that this post is being read by stroke survivors as well as caregivers. It is a good reminder how we ( stroke survivors) need to take stock in how our stroke impacts the ones we love the most. I am convinced that we can each find little ways to make life better for our caregivers and feel the sense of accomplishment. Patience is a biggy. When you are not mobile things we took for granted before seem to take forever.

Pat

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Guest tgm464

Jean ,

Ill start by saying my heart goes out to you .My husband sleeps 90% of the day , while because of everything I have to get done with him & the kids am lucky if I get 4 hours sleep , Im tired of being tired , Ive also found that my body is worn down in the past 6 months ive been sick 5 times , but even when sick we caregivers have to suck it up & continue on like nothings wrong ,,And it never fails I drift off to sleep & someone is screaming for something ,,, eeeekkkkkk.... I HATE THAT ,, I WANT TO SLEEP WHEN IM TIRED ,& AND DARNIT IF IM SICK I JUST WANT TO BE SICK. angry.gif Everyone else can take a mental day or a sick day ,but not us.Thats the hardest thing about caregiving is the fact that on thatneverending list of things to do ,Im not even on it , and I know you understand that feeling .I long for a day when I can wake up with nothing to do ,or a day with no place to go , I long for a hot 2 hour bubblebath , I long for an end to laundry & dishes , and you know what else I long for the day my hubby can do all that stuff for me .... again.

So there is a reason for our madness ,, I have to keep reminding myself why Im doing this.

 

hugzzzzzzzz & I hope you get a nap biggrin2.gif

Teresa

 

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Sorry Jean - I can't imagine how frustrating it must be for you after this long. I'm only in the 3rd month of having Gary at home and there are days when I want to just collapse but I can't. Every time someone tells me "be sure to take care of yourself!" I want to scream! I can plug in a curling iron and leave it there all day and never get around to using it, so I look like the wicked witch of the west all day long. I shower when I'm showering him and I'm lucky if I get all the soap rinsed off or the shampoo out of my own hair. I tried sleeping when he slept, but then the laundry didn't get done, the floors didn't get vacuumed and nothing got dusted. I think I've managed a full hot meal without interruption maybe 3 times in 3 months. Yeah right - take care of yourself!!!! Before his stroke I had lost 80 lb. over a 9 month period and I think I've gained back 20 since June just from grabbing food on the run. Luckily, in the last 3 weeks, we cut back on the high blood pressure meds since his blood pressure has been consistently low or regular, and he only wakes up one time during the night now to use the urinal and then goes right back to sleep. I am finally able to start taking aspirin or Tylenol for the pain in my arms (from pushing the wheelchair) and not worry about whether I will be able to wake up if he needs to go. Also helps to have the puppy who stirs or barks when she hears him stirring at night. Oops - gotta run - he's awake again. God Bless All - and take care of yourself! Sarah

 

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Judi,

 

Don't be scared. sad.gif Each and every stroke survivor is different. So are the caregivers for them. I have learned that in just a short time. Some of us adjust different than others. Sometimes we vent just because we don't have anywhere else to turn. But don't be scared.....Things will work out however they are suppose to.

 

pash.gif

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My husband and I did a total role reversal after his stroke. I now get to see what it was like for him to put in overtime hours at work and be gone all the time. He is finding out how boring life is when your mate is gone to work and there is no car available for you to go anywhere on your own. Well, he doesn't trust himself to drive so even if he had a car it would just sit here.

 

We are short-handed at work. This week I put in 73 1/2 hours so my husband is feeling quite lonely. Even when I am home I still want to lay down and sleep although I never sleep more than 5 hours at a time. Some days I really feel weary but I refuse to get myself dependent on drugs to help me sleep. There are enough drugs in this house without adding another.

 

There are days when I just want to throw in the towel. Other days I'm very proud of the fact that I took the skills I learned caring for him and I found myself a great job with them. With my work and his social security we have not had to ask for a penny from anyone. That alone keeps my mental wheels churning. I carefully plan each budget and I plan outings for him so my brain feels like mush for the most part.

 

We did have a major breakthrough this week with all of the overtime hours I put in. Usually I put in my 3-4 work days and on my first day off I give the house a thorough cleaning so I can spend the next couple of days doing activities with my husband. He just sat around the house or out on the porch being bored. This week he put some of his time to use and he actually started doing some of the cleaning! I didn't ask him to do it either. He told me when I finally do get a day off he does not want me to spend it cleaning. Yes, he had a selfish reason but he also took a burden off my back. When things go back to normal at work I can still expect him to help clean the place up and not sit around and trash it while I'm gone. I don't make the messes but I always had to clean them up. He always spouted TEAMWORK to me but his idea of that was for me to clean up whatever he had done.

 

We still have some issues to work on but we are slowly and surely getting there. I'm still waiting for the personal time I've seen people talk about on this board. It just can't be done here. My personal time is a way out of this house for him and he is going to take it. That's okay though. I don't have it as rough as some of the others on these boards. He can do most things for himself. His stroke mostly affected his left hand, vision and memory. He can do anything except cook because he usually forgets to turn the stove off.

 

I'm tired and depressed but I just can't bring myself to resent my new life. If it had gone the other way I wouldn't have him here with me. He's a messy Marvin but he's my messy Marvin and I just love him to pieces. I've learned that he will get tired of living in his own filth and make the effort to clean it up. Sometimes one small thing like that makes me wake up and appreciate life again. Believe me, I made sure the praise was long and clear when he did that for me. I was selfish enough to hope he would keep helping out and I admit it.

 

Hang in there everyone. Bless you all!

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