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kitkat

Member
Joined
Nov 9, 2015
Messages
21
Reason
Lost a loved one
Diagnosis
11/2015
Country
US
State
MN
City
Fairmont
I am so exhausted. We have home health aids taking care of my PALS on weekdays as I still work full time. He has no use of his arms & legs. I get home about 5:15, just in time to help Steve use his urinal. Then I use the lift to get him out of his hospital bed & transfer him to his wheelchair so we can watch the news. I feed him supper, do the dishes & sit down for an hour until it's time to transfer him to the commode/shower chair so he can poop. Then it's a shower & transfer to bed. We actually have a pretty good system, for now.

Bed time is very frustrating. He gets his meds between 8 & 9 pm, depending on how things are going. His meds include two Melatonin and two diphenhydromine. I get the bi-pap on him, get his arms & legs just right, the pillow to his liking. Then the fun starts. He wakes me up every 15 minutes or so to adjust something, itch somewhere, etc, etc, etc. Next thing I know it's 1 am and I have to be up at 6. I am so exhausted. Thankfully, this does not happen every night, but it does most nights.
I get snippy, angry, feel sorry for myself, then feel extremely GUILTY for having those feelings & snapping at him. This goes thru my mind over & over while I'm at work.

I know it's not all about me, but this nasty disease sure takes it's toll on everyone.

Love you all. Hang in there!
Kathy
 
Kathy,

I'm right there with you. I don't work anymore, but sometimes I'm not sure that's better. I take care of my PALS 24/7. He also has lost the use of his arms and legs. The sheer number of things he needs help with sometimes puts me over the edge. It's not any one thing, just that the needs/wants seem to be never-ending. I know he is frustrated needing so much help too. He used to be very active.

I love him, but I get so frustrated by the end of the day that we often end up " having words" when getting him into bed. I have such a gamut of emotions - feeling sorry for myself, frustration, anger, guilt - none of them good.

Hang in there and know that you are not alone.
 
Count me in as well. I also take care of my PALS 24/7 by myself and have been doing this for almost 7 years, although he required a lot less care in the beginning. I really don't like the person that I have become and am often overwhelmed with guilt for the unkind things I have said to him. This happens more often when I have had very little sleep. I really don't have any good advice but just want you to know I totally understand.

Sharon
 
Me 3. I take care of my husband 24/7 mostly by myself. He’s been vented for 8 years and bed bound for about 3. I have a nurse 1 day a week.

I’m curious as to why your nursing help doesn’t do his bath for you. They could also have him up in the chair for you to watch the news before you get home. That would at least take care of those 2 things for you.

I totally understand the constant need for things as well. I’ve had my moments as well. I’d also suggest, if you don’t already do so, looking into counseling and possibly something for anxiety/depression for yourself. Many here are on a low dose of something. I’m on Celexa, some are on Zoloft etc.

Hugs
 
I have more help than most, and I'm still snippy when I get pulled out of sleep over and over. Please don't beat yourself up over it--to care for him all night and then go to work--I'm in awe.

I'm also wondering why the caregivers don't do the shower and have him up in the chair for you when you arrive home. You may need to ask him to let them start doing the showers. It's tough for many PALS at first, but after awhile they get used to it.

No guilt, lady. What you are doing is way beyond difficult.

Becky
 
Kathy -

Thank you for your post. I am recently diagnosed and am considering the burden I will become to my family. It helps me to see the illness from the viewpoint of caregivers as I can consider what my actions should become to help ease the burden.
 
I would love if his aid would give him a shower, but, Steve does not want that - modesty?? And, he will only poop if I am there to clean him up. Yay. It's enough for him that they help him pee. But I get it, I would probably be reluctant to have an aid get that personal. He has an aid with him until 3:30, when he is put down for a nap. I get home shortly after 5. So he is alone during that time. I have his phone set up so it never goes to sleep. It's an app called "No Screen Off". It is next to his bed, so he can voice call me or the neighbors if he has a problem. We know this will have to change at some point.

Meanwhile, we continue to help him adjust arms, legs, sit up better, fluff the pillow, scratch that itch, clean out nose & ears, etc.

dldugan - Know that we all LOVE our PALS, and would do anything for you. It's just hard sometimes & the stress can take a toll on us all.

Meds do help....I take Effexor and my PALS takes Citalopram.

Love you all.
Kathy
 
Didiugan
As a daughter of aPals and occasional cals I try to see things in terms of team work rather than burden. Although we may be exhausted at times we are not the ones locked up in our bodies with a terminal disease. My idea is that planning all the possible help is good. It also helps preserve the precious relationship.
Discussing the possibilities and desires of all is the ideal before we get in an emergency situation. And this is not easy.
The burden on everyone is that @&€!?)(:) illness, not the person suffering from it nor their loved ones.
Trust love
Good vibes
 
Ps : I have been taking Effexor for a month now and it helps a lot : I haven’t collapsed feeling overwhelmed since. SoI am more ready for good times and he is happy to see me looking good.
Let’s take all the help we can find
Love to all
 
I get the whole thing of caregiver burnout. My father went through a long drawn out battle with cancer, and you really have no idea how played out you are till it stops. As far as guilt goes, in my experience guilt is alcohol soluble. Whatever pulls you through is all good.
Vincent
 
Kathy, I have exactly the same situation with my husband. He refuses to have anyone take him to the bathroom or do his bed baths other than me. I guess it is modesty but it makes it tough on the CALS. He has such little control over anything in his life that I have been granting him this request. I remember Mike posting on this forum that he tried to do whatever his wife (PALS) wanted and I have tried to do this for Frank.

Dldugan, I love my husband and would never want him to feel that he is a burden to me and I am sure your family feels the same way. I have been afraid sometimes to post on the forums because I don't want to upset the PALS who might read how difficult it is for us CALS at times, especially if we have been doing this for many years. I do this because it is so helpful knowing that you are not the only one going through this. Please do not let my words make you (or any PALS) think that you are a burden to your family.

Sharon
 
Yes grief pain and guilt are alcohol soluble. I do that at times with a friend who knows what it is but then next morning...
Getting drunk in good company once in a while is really good.
��
 
Cbd helps as well
 
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