How to deal, keep up with my own life and family, and remain sane? New to caregiving and life upside down.

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babziellia Asked November 2019

How to deal, keep up with my own life and family, and remain sane? New to caregiving and life upside down.

MY MOM lives with us now. My mom (89) went from independent living to suddenly requiring 24/7 supervision with assistance as needed within past 4 months following a series of strokes. No other financial alternative. She's depressed, irritable and occasionally mean. Mostly cognitive. Mobility and self-care problems. Not happy living with us and demanding as all get out! Treats everyone like a slave (not new behavior). Seems do anything to be admitted to a hospital. Even had a suicide plan. Back in rehab now and on antidepressant. Won't talk about coming home though, but annual coverage for inpatient rehab running out. I'm still unpacking and rearranging our house as the move happened on short notice. I have a great husband who's rolling with this (mostly) and 3 boys - 18 (in the house, not thrilled with negative grandma), 23 (college senior out of state) and 21 (Married, duty station Alaska, whom we have planned to visit end of this year). To sum up my life right now: I can't find any clean undies for myself, and I can't remember the last time I had a shower. Jesus, take the wheel because I don't know what I'm doing anymore. Every day's plans go ary and I feel like I get hit with a 2×4 to the back of the head often.

Burnout Family Caregiver Multi-generational Living New to Caregiving

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score 0 · Answer 1

Depression and dementia go hand in hand. My mom started out with what we thought was only depression. It wasn't. I had the same frustrations as you because I thought she was also capable of doing more than she was. She wasn't! Dementia had set in before we knew what was happening to her. Her doctor couldn't or wouldn't call it that but it is exactly what she had. Had we had dementia on our radar, it would have saved a lot of frustration on our part, but it wasn't anything we ever expected. Once it sunk in to us this was the problem, we had a better understanding of why she was behaving the way she was. People with this disease can't help their behavior. What you know as up or down no longer exists with dementia. It just all twisted and there is no reasoning, begging, pleading or crying that will help change anything. She may "understand" for the moment, but don't expect that to last because it won't. 15 minutes later, that is all out the window. This is a terrible disease on everyone, including the person with it. It won't get any better but will continue to get worse. Your best alternative is to find a facility to place her in.

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score 2 · Answer 2

Who is around to help you such as family? Do husband and son "baby sit" her so you can get some time off? If you home schooled kids, I assume you are a stay at home mom. Organize your time around your life and let her fit into what you have going on. It's hard to set new boundaries when you haven't done so before. So limit your expectations to small results at a time.

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mom is more self - sufficient now, modified independence within our home. We can leave her for a little while, but we try to make sure someone is in the house most times. Hubby and sons help out when I need to go somewhere.

She doesn't get that she's never going to live independently again, but I don't point that out. She's so depressed; I can't burst that bubble.

I have 2 planners now: one for all her stuff and one for mine. She has her own calendar also because she didn't like the planner I bought her. I've slowly established a routine and put boundaries on the HH people coming to the house. They were coming everyday for various reasons, and it was chaotic. Most of them honor the days. During eval week, it gets screwed up for about a week, and Mom gets out of sorts, but it's working in general. I needed a day "off" and she did too.

I've just started refocusing on my own self-care this month. It's still hard with Mom being as self centered and demanding as she is, but I either ignore it or address it directly depending on the situation or if my tongue is sore for biting it too much.

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score 1 · Answer 3

Thanks yall!

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score 6 · Answer 4

You should try to get her into a facility before she applies for Medicaid. Being on Medicaid first greatly reduces her NH options because those beds in good facilities are filled from the inside, and are usually always occupied. Even if your mom doesn't have enough resources to pay for more than a couple of months, she can then apply for Medicaid and the facility cannot kick her out.

In the meantime you can look into an in-home care agency to provide some assistance for a few hours every week so you can get your life in order.

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score 2 · Answer 5

Take a look at your states (now her state)Medicaid requirements. When the time comes (as far as residency requirements) then, if possible, get an elder care attorney to help with application. If she requires 24/7 care/supervision she will have that in NH; Memory Care and you will have your life back.

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score 5 · Answer 6

If your mother doesn't have a dx of dementia, you set boundaries, initially this way: she says something negative, abusive, whatever, you simply turn around and walk away. You pay NO attention to the negative. You only reward, with your attention, the positive.

If she mentions suicide, you call 911. You don't "threaten" to call 911; you simply call them and say "my mother is threatening suicide and has a credible plan".

Please don't put up with any acting out from her.

Did they prescribe meds for her? When is her psych followup appointment?

If she threatens not to keep that appointment, or not to take her meds, you start eviction proceedings.

Helpful Answer (5)

Yes, she is on Lexapro. I watch her take it. I take her to all doctors appts and insist on being in the room (before moving here, I had people who took her and put me on speaker phone during the visits). She's had 1 psych followup, and I scheduled another. I'm trying to find a local caregiver support group for me.

I'm on board with walking out as long as she's safe from falling. If I have to stay with her, I give her the silent treatment. I also plan to put my earplugs in if necessary.

I homeschooled my 3 boys for 12 years; we had a classroom covenant. I think I will draw up a house covenant and call a family meeting, mom included, at the rehab to go over it and have everybody sign it.

I must establish a new normal and keep my wits about me.

I have 2 older brothers who are out of state or 4+ hours away. They know my family comes first and support that. Mom doesn't get that, and that will be an issue.

The roll reversal is an issue. I find myself talking to her in my mom tone, and she doesn't like it, but I don't know any other way to be.

(1)

score 3 · Answer 7

Met with social worker today. Must establish residency before applying for Medicaid, but mom will not qualify for facility Medicaid. She must come home, probably Friday or Monday. There's no money for any other option.

Spoke with Mom this afternoon. She doesn't "want to overtake my life." We've had the "I don't want to be a burden" discussion before, but this time I just said "You're not going to take over my life because you are more capable than what you do at home. You can do a lot more for yourself because you're capable of doing it, not me."
It was a babystep for me. She didn't blow up or pushback or talk about wanting to just die or how hopeless this all was.
Then the therapy manager came in and told Mom that I would be observing her tomorrow and that's protocol here because she'll be going home soon. When I left, mom thanked me for all I'm doing.

So, good day today. I do know better that tomorrow could be the complete opposite.

I need to set boundaries and am hoping for suggestions on how to do that.

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score 2 · Answer 8

While she in in rehab have her evaluated. Tell them she has mentioned suicide. She needs more help than u can give. She maybe able to go straight to LTC and apply for Medicaid. Talk to the Social Worker now. This is the easiest way to get her in LTC.

Helpful Answer (2)

She ended up in rehab again after being admitted to hospital on suicide watch during a routine doctor visit. They know all about it and why she's now on an antidepressant. But I'm going to find the social worker today and talk about applying for Medicaid, IADLs and discharge options.

(0)

score 5 · Answer 9

Work with the social worker to find placement but do not take her back home. If it is tough now - it will only get worse. Insist that she cannot come to your house as it would not be a safe release. Why would you want to continue doing the in-home care for several more years? Make a change now - and help your mother - but not in your own home.

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score 2 · Answer 10

Have you exhausted all possible placement options for her? If she cannot do some of her ADL's she may be eligible for nursing home care under Medicaid.

Helpful Answer (2)

She can do most ADLs when she wants to, except bathing herself; but she refuses to go to the regular commode at night, insisting to use a bedside potty, which she can do by herself. She's more capable than She lets on. She can't do IADLs and has been relying on friends in the past. She is a fall risk also, that's why the doctors require 24/7 supervision. I will talk to social worker at rehab. She's only be in our state for 30 days. not sure how Medicaid works when you move to new state. She doesn't have medicaid right now, but I think she qualifies.

(0)

How to deal, keep up with my own life and family, and remain sane? New to caregiving and life upside down.

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