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
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