My life as I know it.

Started by



All our lives my husband and I saved, scrimped and dreamed of early retirement and travel. Then my mother had a stroke, after partial recovery she went home needing 24 hour care. My one brother and I did our best, my other brother gave every excuse not to help. Talk about feeling like our lives were blown up! I was becoming miserable, angry, guilty (feeling trapped) and sad (for mom). It is exhausting. At first my mother was not easy personality wise but I excused it by knowing it just wasn't who she was.

She fell, almost didn't make it because of her lung disease and is now in rehab constantly asking about going home. She told us PT said she is almost ready to go home and me and my brother dread it, I mean dread it! We are both very thankful she pulled through but we dread it. She is back to being mom (personality), funny, smiling, very personable, she does ask the same questions over and over but I think it's for assurance. If she goes home, she will need 24 hr around the clock care, she can barely walk, couldn't fix her own meals, couldn't get her own coffee if she wanted. We tell her she likes to decorate the room with her food. I was offended when her friend said, "you know, when we were young we took care of our parents", which I responded, when you were young the women didn't work.

I'm thinking I might tell the rehab she doesn't have 24 hour around the clock care.
continued (from above)

I've always tried to deal with problems head on, my mom is the complete opposite. I try to get her in on decisions and when I try to talk to her about important things she changes the topic or has to get off the phone. It's like she wants to ignore reality. Only the fun stuff.

When she talks about going home sometimes I want to ask. Mom, do you realize that if you go home we don't go home.

24 hour around the clock care, I just don't know if I can do this again. :-(

After her sickness we finally convinced her that she needed a POA. Me and my brother have POA. We applied for medicaid for her (finding the needed paperwork.. what a nightmare). She says she has a will but we can't find it. I think she has the house signed over to my (no help) brother which I don't care but when they come for recovery and being that my brother will feel control I don't want to deal with him when that time comes. No insurance to take care of her burial when that dreaded time comes. I was going broke paying for help so me and my brother could work and didn't lose our sanity.
If mom needs 24/7 supervision, you ask if they are talking about her needing skilled nursing, assisted living or memory care. Talk to the discharge planning person at the rehab.. Explain mom's living situation and emphasize the fact that you both work and that mom can't afford round the clock care at home. Her house should be sold to fund her care. It's her money and her assets that should be funding her care.
Thank you for your post. I did explain this to them and was met with blank stares.

I said I dealt with problems head on. I think this one I obviously didn't. I didn't want to face the facts (which I normally do) that mom was not going to be the same after all, people have come back from strokes to live normal lives. I finally said something to my mother today and she of course had to get off the phone. I think my brother is secretly hoping I will be the bad guy (can't blame him). Me and him, we really worked together on this.

I just wonder, does she want to be home so bad that she doesn't care what it does to everyone else? She's been a great mom, I feel so bad :-(
Caretaking is the hardest,non paying job there is!My husband and I are dying to get away for just a weekend ,however we cant leave mom.Even if I hired someone-I'd be anxiety-ridden the whole d*mn weekend!
Elisa, social workers will often try to insist that you take your parent home. You stand your ground. She needs 24 hour care and no one is available to to provide it. So you need their assessment of what kind of facility she needs. Repeat. Repeat. Don't take it personally -- they are just doing their job -- but don't let them bully you. You have done the hands-on-caregiving route. This time around you and Brother are going to do the visit-as-loving-children route.
Elisa, when did mom sign over the house to your brother? If it was in the last five years he is going to have to give it back. And it should be sold to pay for her care unless your brother has provided 24/7 medically necessary care for Mom for two years prior.
cinben, I hope that you and your husband can find a way to take a break or the stress of doing caregiving 24/7 will break you eventually. Take care of you in your caregiving.

Keep the conversation going (or start a new one)

Please enter your Comment

Ask a Question

Reach thousands of elder care experts and family caregivers
Get answers in 10 minutes or less
Receive personalized caregiving advice and support