Regret...guilt...after making the transition home.

Started by

I've only posted one thing since I've been here. I've replied to a few topics, and then stopped myself from posting them. I'm young and have only been at this for about 6 months now...what do I know. I've realized I know just as much as some, but with some things, I'm still quite uncertain.

In October, my grandmother fell ill. She has lived alone since her husband passed five years ago, and done well, but she suddenly fell ill-UTI, refused to eat, etc. She was hospitalized and then went into skilled nursing for rehab. She did very well, although I had serious grievances with the facility itself (I'll write another story about that, later). But she had a good roommate and appeared to be happy.

In November, I was unsure of whether or not she would be able to return home due to several issues, the biggest of which was dressing and toileting. I knew that she would need care that I couldn't provide. She spoke to a family friend, Beth, about moving into the home to help her, while I was talking to the nursing home about completing a Medicaid app for long term care. I started the ball rolling to get all of the information that I needed for the application, but Beth had an absolute breakdown when I explained what going on Medicaid actually means (taking income, asset liquidation, etc). She pleaded with me that there MUST be another way go get my grandmother home. And my grandmother became increasingly bossy about it, telling me that her income was her money and she had the right to choose how it was spent.

By December, I found out about a community waiver program which would cover in home sitting for 8 or so hours a day. Between Beth's presence at night, and the sitters in the day, I figured it was worth a shot. So I called the number that the local council on aging provided, got her on the waiting list (the wait time is greatly reduced if you're in a facility already).

The next three weeks were hell. My grandmother's medicare pay would end in January, and I was left scrambling, trying to figure out what to do. I can only describe what I went through between Beth and my grandmother as bullying. I was still waiting on the info that I needed to complete the Medicaid application, and I begged them to just stay in the facility until we got the community waiver stuff sorted out. But they'd have none of that.

The first week of January I got the call that she'd been approved for the community waiver. I felt a weight lifted off my shoulders. The local council on aging evaluated her and we got everything set up.

The day before she was discharged from the facility they called me asking about her Medicaid application. I hadn't finished it because A) I had only just received the information that I needed to proceed and B) she was going home-why did I need it? Turns out, I needed to fill it out because community waiver is a Medicaid program. Stupidly, I didn't realize that I needed to complete the Medicaid app to get her on the program. Everyone else approved her, after all.

The first couple of weeks she was home, she was doing well. I came by at lunch and after work facilitating. Stocked the house with medical supplies and groceries. Beth showed that she was completely incompetent. I hired sitters to fill the gap left from the community waiver misunderstanding.

By the end of February she was sick again. Hallucinating.Wouldn't eat. Refused to let us get her up. Went into the hospital and long story short, got her into a better nursing facility. Was advised she still had skilled nursing time left through Medicare. She was in and out of the hospital for the entire month of March. Over the course of a month, each hospital visit is as follows: UTI, dehydration (due to restricting liquid-due to sodium deficiency), low bp when she got up, elevated heart rate, low blood count. Also, she was diagnosed with dementia because she was losing touch with reality-talking to people who weren't there, thinking people were taking her to random places, leaving her on a boat, etc.

Here's the point of this story.

I feel guilty. I feel like if I'd never taken her out of the original nursing home, she might not be in the poor mental state she's in right now. I feel like I exhausted her mind and body by all of the changes in the past three months. I feel like I broke her.

In my defense, it was she who pressured us into bringing her home...but I'm POA and should have known better. I did know better. I made the decision to appeal to her wants instead of what was better for her. And now I've screwed up so terribly. I feel like her state now is all my fault.

Has anyone else been put in a position like this? The doctor says it would have happened anyway, but I just don't know. I don't know what to think about it anymore. I don't know if I'll ever not feel guilty about moving her out of that home, even though where she is now is MILES better than where she was. I just feel like taking her home nearly killed her.

4 Comments

I should also advise that :

a) She actually never had skilled time left. The first nursing home goofed and told the new nursing home she still had 50 days or so left, but that wasn't the case. What happened is that the first nursing home never "billed" for the time between mid December, when she came back from another hospital stay, until the time she was discharged in late January. So their records were wrong...because they didn't keep up with them. So I ended up getting a bill for March, which was mostly covered by Medicaid.

b) speaking of Medicaid. I was advised by the social worker at council on aging to go online to complete the app. That was in January. I waited until mid February and finally knocked doors down to find out what the hold up was with the application. Turns out, the application on Louisiana's website is an "Obamacare" Medicaid app, and our Medicaid system here doesn't honor that app. So basically there are thousands of people who filed, but if they filed online, applications are falling into a black hole and never reaching the Medicaid office. Well, I contacted the governor and got a response immediately. They mysteriously found the lost app, and told me everything I needed to send to them, and finally, I got her approved for Medicaid. That was about two weeks or so ago. So all of the torment I put my grandmother through in waiting for the Medicaid and the Waiver to go through was for nothing at all.
You are fine. Just because your grandmother made no logical plans for her old age care is not your fault.

You did the best that anyone could, when the patient is being irresponsible. Just try to remember that you can't be logical, when the person you are trying to help is illogical.

I am shaking my head about the run around that you got, with all of the red tape. I know it is awful. My MIL is 91 and my mother is 95.
Wow what a mess. Don't feel bad that you don't understand the system I sometimes think they want it that way. I went through about the same thing as you. UTI's make the elderly nutty. In my case the first NH was a joke and so was the second one. Mom didn't have UTI's because she wasn't clean...( what an insult )... I took her to a specialist and found out she had bladder cancer. So then she had a surgery to hopefully take care of that and while in surgery she had a mild heart attack. It's been two months now and she is much better. She is still seeing things and talking to people I can't see but no longer wetting herself. The NH told me I was incompetent to take care of her and sent the state to check on me because I took her out of their care once her 30 days of Medicare was up. Well they (the state) of course let me keep her due to how well she has it here with me. It's all a rat race really. She isn't going to get her mind back and NH aren't perfect places. I know better than to let her go to either of those two places but, she does need to go somewhere very soon. I will not feel badly. I have gone above and beyond just like you. All we can do is try.
All of your intentions were good. You believed Beth. Your Grandma's insistence is actually pretty typical. Congratulate yourself for realizing quickly that Beth was in over her head. You actually got a better NH out this experience. Grandma's decline has nothing at all to do with what you did, it is a natural part of aging. You came through this wiser and stronger, and Grandma will not fool you again. Keep your head high and move forward.

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