Memory Care + Aide - Make it make sense

Anonymousjpl123 · October 31

I'm trying so hard not to vent, not to be angry. But my mom's MC is asking me to pay for a person to be with her 12 hours a day because of the falling. We literally can't afford this full time, so I'll be doing it on weekends.

I get that they can't be with her 1:1 all day, but it's just incredible. The cost seems outrageous. They said it eventually won't be needed, sadly, because she will not be mobile and the falls won't be an issue. I just keep thinking what if I hadn't stepped in? As POA I get that it's my responsibility, but this seems like a lot.

Yesterday was the first time she didn't recognize me.

FOR ANYONE NEWER TO THIS: it's still not as bad as in moderate dementia, when she was paranoid, confused, fighting - that was far worse than this, which is just a financial and emotional puzzle).

harshedbuzz · November 1

@Anonymousjpl123

Hugs. That's really hard. Especially her not recognizing you.

We had a similar situation in our family.

My mom's nastier sister had a fall in her AL facility that resulted in a hip and wrist fracture. She was transported to the ER where she had surgery to replace the hip and set the wrist. She was discharged to a SNF in a Medicaid bed, but the facility insisted on her having a sitter 24/7. There was no money for that. Her surviving child spent most days with her spelled over by an aunt (who was guardian/caregiver for a different sister of the PWD who also had dementia) and her late brother's widow. Mom was 300 miles away taking care of dad with dementia.

HB

ARIL · November 1

I am so sorry. This is awfully hard on all counts.

Thank you for posting about this. I can imagine this scenario coming up for my family, and it is helpful to know what that might look like. Cost is a huge issue. The MC is already scandalously expensive, and we couldn’t add the cost of a sitter for very long. And I can’t quit my job; that would cause different financial problems.

I do feel for you.

AmandaF · November 1

Is there any chance of her qualifying for hospice? The requirements are different for people with dementia, so it might be worth asking. My mom’s care needs increased after a bad fall and I was worried I’d have to hire an aide, but her MC facility suggested we try for hospice, which has relieved enough of the stress on the staff to make things work. It’s not the same as having a private aide but gets more eyes on her. Just an idea - good luck and I’m very sorry, the falling stage was so challenging for us too.

psg712 · November 2

Anonymous, I'm so sorry for this extra stress and expense. I thought I remembered that she is already under hospice care? That is helpful but won't provide 1:1 supervision every day. I worry about the time this becomes necessary for my mom - as someone else said, neither private help nor me stepping away from my job to do it would be financially feasible for too long.

Anonymousjpl123 · November 2

Thank you all so much for your responses. Yes, she is on hospice - so there is already all the extra help and visits that come with that!

Plus, up until 2 weeks ago, I visited at least 3 times a week (I shifted to 2 times on weekends, to cope with year end at work).

So it’s not like there is not help -AND, as others have said - it’s memory care, and she’s already on the “plus” level. That’s why it seems so insane.

To make matters worse, the aide they identified yesterday didn’t come back today. I’m not sure I understand how exactly my mom is so difficult. As a mother? Sure. But now, she’s literally just a person with severe Alzheimer’s dementia who still can move around a lot and spends a lot of time walking around trying to get into other people’s rooms. That is what she does - all day.

I’m at the end.

ESkayP · November 2

It happens pretty often on the forum that I'm having an issue and need advice. I log on, and sure enough, there are others here with the same situation! My mom is MC + hospice + private care (almost). I'm making the calls Monday. Mom sleeps most of the day, but when she gets the strength to scoot to the end of the bed, she tries to stand up and falls down. I've been with her all weekend long. She tried standing twice yesterday. The staff and I encouraged it today because she had been still for a long time. She got into the wheelchair all right, but she didn't want to eat or go for a lap around the commons. She was frowning and leaning forward as if to toss herself onto the floor on purpose. I held her gently by the shoulders, but she's still pretty strong. I honestly think she was just too tired and wanted to lie down again. There's a chance that Mom sped through this phase and will no longer attempt to stand by herself. I'm glad I had yesterday with her. She was a little bit responsive. Things are so unpredictable right now.

Anonymousjpl123 · November 3

@ESkayP im so so sorry.what are we going to do?

I am planning to have a call with the mc facility with my sibling (who lives out of state). At least have someone else with me.

I cannot take leave and it is just so impossible to know how long this will go on. I am trying so hard not to be be super mad at the MC. They have been so so good up until now.

Thank you, everyone, @harshedbuzz @ARIL @AmandaF @psg712 . She’s already on hospice. I just don’t understand what is so hard - other than the falling.

I went out with some close friends tonight hopefully will sleep well and think better tomorrow.

otfgirl750 · November 3

we are going through the exact same thing so know you are not alone. I felt like we were the only ones dealing with this until I read your post - so thank you. It is so tough to balance the financial impact of the sitter or the exhaustion of being there overnight and the desire for the LO to be safe. I know she will fall again and I am just waiting for the next shoe to fall. Siblings out of state feel the MC should be able to handle it and are critical but you know they are not set up for 1:1.

we are doing our best with a terrible disease and I am glad you had some good friends to help support you.

Quilting brings calm · November 3

Quite honestly I don’t understand this demand from the MC. Falling is to be expected from someone with the issues your mom has. MCs are supposed to be able to handle this. Can they be next to her 24/7-no. But even if they ( or you ) were, they couldn’t always prevent the fall. It’s the reason I finally told my mom I would no longer take her to the doctor unless she used her walker. It’s the reason I didn’t walk next to my step-father ( who I couldn’t get to cooperate with me ever). I could not prevent them from falling and I’d end up being pulled down too. By then I’d already had two compressed vertebrae fractures.

Mom fell 3 times during her last year alive. Yes there were injuries The AL never blinked. They removed her bed frame and put her mattress and box springs on the floor so she wouldn’t have so far to fall. They made her go back to her room if they caught her out of it without the walker or her portable oxygen unit.

At a certain point when mom was on hospice, she became too weak to adequately walk with her walker. It took three staff members to get her to the bathroom and back. After that, she was not allowed to get out of bed. Again, the AL never blinked. They never once demanded that I do anything beyond what I was doing. Other than a couple staff members who needed education in caring for the dying, the staff was my rock. I felt so supported.

Anonymousjpl123 · November 7

thank you all so much for your responses - @Quilting brings calm you nailed it. And up until this point her MC has been flawless. Thankfully, we’ve gotten someplace I can live with. They agreed for her to have someone 6 hours a day - huge difference from 12 - so I can do it 7 days. No weekend work. Thank god. She’s on trazadone and seroquel but god bless her she’s pushed through them. Very little in the way of making sense but she wanders like it’s her job. She has very strong muscle tone for this reason. MMSE of 7-8 so it’s really something.

@otfgirl750 its worth noting that I had to call the MC and really explain my situation - that I want what’s best for mom, that I want to be supportive, but couldn’t afford what they were proposing - and it worked out: thank god. I find being honest is key.

I’m so relieved. My mom does still know me. But no one else. It’s painful. But it’s ok. It’s hard. But it’s ok.

Memory Care + Aide - Make it make sense

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