The lack of help is wearing me out

CassLoftis

I have a caregiver that comes for 4 hours a week and am supposed to have another for another 4 hours.

It is not enough. I need a break. His family shows up once or twice a year for a few days. Still no break. Now I am hosting guests.

My parents come and get him out of the house and make decisions for me like dinner etc. They make sure I get a nap if I want etc..they are in Europe right now.

I missed the family birthday celebration last year and Christmas. my sister's family doesn't want to come to Texas for valid reasons, but it means I am alone.

I need like a whole week to myself. DH won't accept that, he would be so combative and hurt.

jehjeh

I understand. I wish I had advice to offer but I'm in the same situation. I'm glad you have your parents to help but I'm sure a longer break would help a lot. I just want you to know you're not alone.

CindyBum

I am going to say the hard thing —- that your DH will be hurt and won't accept you getting a week alone isn't as important as you getting that week of respite. You need it. He will survive you being away, even if he doesn't like it.

I fight for my respite now and my DW's anger or hurt will not guilt me away from getting what I need to survive this terrible journey.

xoxo

SDianeL

some memory care facilities have respite care. They usually want them to stay a month though. Sorry you don’t have friends or family that can help right now. We understand. It’s mentally and physically exhausting. 💜

Jgirl57

I know how you feel; I just toured a facility that provides respite and their minimum is 2 weeks and others were a month . I need to get our apartment re-organized for the long haul and I need some continuous sleep. I wish everything about this horrible disease was easier. I hope you find a solution that works to give you more time away from caregiving.

trottingalong

I was going to say I’m getting where you are, but honestly, I’m already there. If I can just catch a good nights sleep it makes all the difference.

Jazzma

I agree with CindyBum. I doesn't sound like you have options except for a week or two of respite putting him in a facility, if you can afford that. Will any of the family help with the cost? He will be angry and hurt and all of that, but you will not be able to take care of him if you don't get a break for yourself. He will be safe and taken care of, and he may adjust to being there better than you think.

It's hard to decide to help ourselves when it 'hurts' our loved ones — but it's as important as anything that you will do. Sending warm hugs and lots of understanding.

tboard

https://alzconnected.org/discussion/73141/the-lack-of-help-is-wearing-me-out

my situation is similar. I can not even dream of a whole day off let alone a week. If I could imagine it maybe I could do it. I get about 3 hours of help a week and few visitors. Parts of the family are ignoring me for now. My life as I knew it is over and I miss most of it.