Mom's worsening health and need for in-home care/supervision. Any suggestions? - AgingCare.com

Mom's worsening health and need for in-home care/supervision. Any suggestions?

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Since my original question a few months ago, my mom's heart disease has worsened with recent onset of congestive heart failure. 4 days in hospital last week for treatment of CHF and ongoing A.fib. Cardiologist, thank goodness, told her no more living by yourself. Her additional problems include obesity, poor mobility, fall risk, confusion (no dx of dementia so far--going to internal med doc today, will see what comes of that), dental decay (needs extractions, new bridge, worried about the extent of work needed), high blood pressure, arthritis, high chol, cannot independently manage her own ADLs. My husband and I moved her directly into our home after hospital discharge. That didn't work, contributed to her confusion to be in unfamiliar home plus too many physical obstacles in our home. Sent her to her home with my sister temporarily staying with her. Husband and I know moving out to her house is the logical place to care for her--that house is accessible, safer for her. Husband is totally supportive of this arrangement. He works, I will be her caregiver 24/7 except when my sister fills in to give us a break. I am struggling emotionally with leaving my home that we have been remodeling ourselves for 3 years and just moved into full-time in October 2017. We will keep the house, but we will only come here for breaks or when I am here to maintain the yard/house (will bring mom with me; mowing is something I truly enjoy). Sister has multiple significant health problems, is raising her now 5 yr old granddaughter (born to absentee daughter), has volunteered to now keep her new infant granddaughter 7am to 5pm M-F (suspect my sister planned this to reduce availability to care for our own mother; the baby's parents could afford daycare or sitter). So my second struggle is knowing how unreliable my sister will be to relieve us and stay weekends or longer with Mother. Sister only lives 3 houses down from my mom, but she deliberately rations time spent with her, responds to texts/calls only when it suits her, actually disappeared for 5 hours yesterday to attend a local funeral for an elderly family acquaintance--leaving me to sit with Mother after having just arranged for sister to care for her for 4 days until we get moved out there. We've had no luck finding anyone GOOD to hire privately to help provide care and supervision. Our history with home health aides and private sitters for various family members is terrible, they either want to nap, live on the phone, don't really provide any care, or don't even show up. Mother refuses to go to assisted living and can afford to pay for anything and everything she needs without any fear of running out of money. She has friends in the same boat, the ability to pay but no one reliable to hire here. I dread leaving our home and being the sole caregiver for the majority of the time. Thank goodness there is at least a housekeeper who cleans mom's home once a week! And a crew tends to her yard. Never thought this would become my life. I welcome suggestions to adapt to this twist as retirement was knocking on our door.

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You dont seem to have to sell your house .. you could always short term rent it. I found some very good staff by asking our local Temple if any of their people could recommend anyone. There are always lots of staffing agencies ..Keep looking , interview , interview , interview. If you live close .. Couldnt you hire night staff and stay in your home ? Maybe some kinda compromise?
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Reply to baskethill1
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"Husband and I know moving out to her house is the logical place to care for her--that house is accessible, safer for her. Husband is totally supportive of this arrangement. He works, I will be her caregiver 24/7 except when my sister fills in to give us a break."

I have a feeling your H won't be so supportive anymore after a while. YOU will be ON 24/7, and won't be nice to be around after a while from all of the stress. Why can't he see this?

I like this comment from surprise: "She does not have the luxury of changing your life because of her refusals."

Bingo. You have to stop fooling yourself about how difficult this is going to be. It will be awful. Forget about any help from your sister (as you've already found out). It will be YOU YOU YOU all the time. Your mother is going to decline...you really this to be your life??? Your mother has money, so let her use it for her own care.

What's the worst that can happen if you refuse to become her slave? I can certainly guess at what the worst will be if you DO become her 24/7 slave.
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Reply to CTTN55
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cbrb,
Read what you have written.

"I am *struggling emotionally* with leaving my home that we have been remodeling ourselves for 3 years and just moved into full-time in October 2017."

"I *dread* leaving our home and being the sole caregiver for the majority of the time."

" Never thought *this* would become my life."

What you wrote tells me that you don't WANT to move in with your mom.
Having been there and done that, I would not recommend it either. It is NOT healthy to be a caregiver 24/7. You are going to crash and burn. Your sister will be no help, as you have outlined. Your home health workers have proved unreliable. You'll be STUCK with no way out.

I don't think you are listening to your "inner voice". You will be sorry you didn't.

Too bad Mom doesn't WANT to go anywhere. You can't tear your life apart because she wants you too. I would tell her that plans have changed and you won't be able to move in with her. That will force her hand to move into an assisted living facility. It doesn't sound like money is an issue, so she will be well cared for and able to afford it herself.

Like Mick Jagger sings, "You can't always get what ya' want."
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Reply to SueC1957
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Thank you for your comments. Today one of her rx dosages was reduced by half, and we hope to see improvement in her intermittent confusion. We have all the necessary legal paperwork in place (POA's, advance directive). She has a long term care policy plus adequate funding, so when we meet again with her physician in 2 weeks, I will begin talks with him and the NP regarding caregivers, hoping he will have some better resources than we do. Before I retired, I worked in hospitals in a major city with lots of patient resources. In this tiny rural town, tiny county with not even one hospital, I certainly miss all those resources. Thanks again.
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Reply to cbrb2017
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No, I would not move into her home and I would not move her into mine. She does not have the luxury of changing your life because of her refusals. What's wrong with caregivers living in their phones? They are there to babysit, not converse or teach her something. If she does not like them, then she can move to AL sooner rather than later. We did not give mthr a choice about memory care, we acted. She was fine in a week - she still did not know we'd left her home state even though she was awake for the whole 8 hour journey.
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Reply to surprise
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When she was last discharged, she came so close for both of you to get her in long term care. She refused and both of you blinked. The doctor would have filled in the paperwork to make this happen. I suggest you search local assisted living or nursing homes. Next time this happens which sounds like soon, prepare to say no. YES she will be confused for a bit but you can stick to it. Remember that no one should take advantage of you do something without your permission
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Reply to MACinCT
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Hi, I'm 35 years old and moved my grandparents into my home two years ago. I relocated them from Honolulu to Seattle to live with my mom and I (paternal grandparents... my parents divorced 33 years ago). My grandma unexpectedly passed in May. She had never been hospitalized before. She had Afib, a leaky heart valve, dementia and eventually CHF. She couldn't take diuretics because it lowered her blood pressure and put her into kidney failure.
My advice to you is, it's not for forever. I thought my grandma would live until 100, she passed two months shy of her 95th birthday. Even when the doctors told me she would pass, I had faith that we would prove them wrong. I brought her back home on in-home hospice and cared for her for three weeks. I watched her die, I watched her take her last breath. Were there moments of familial discord? Of course! Were there moments of stress and anger? Of course!
My suggestion to you is, if your mom can afford assisted living out of pocket, she should be able to afford in-home caregivers. What my family and I did before I took this task on is, we hired a care manager to do an assessment of my grandparents' care needs and how much that level of care would cost. We hired an elder care lawyer to prepare a care contract.
I worked full-time and continue to do so. When I am at work, I have a caregiver come into the home. The caregiver gives baths, does light housekeeping, prepares meals and logs daily. You should speak to your family about hiring a caregiver, usually, the daily minimum is 4 hours per shift. I had someone coming 6-7 days a week for up to 6 hours in a day. It sounds like you don't need that much, but instead of relying on your sister and being disappointed, have your mom pay for her care. You and your husband moving into her home is already saving her a lot of money. I couldn't save my grandparents home and I still feel a sense of sadness and guilt about that.
I would also suggest you obtain DPOA over your mom because as your mom's health worsens, someone needs to be readily available to make those hard decisions for her. Most of all, remember.. It's temporary. I wish someone told me that. It seems so simple and common sense, but it really isn't when you're taking on a journey as big as the one you are about to embark on.
Before you burn out, have professionals assist you.. It's worth the money. Also, setup consultations with caregiver agencies so you know how much in-home care will cost. And have the difficult talks with the medical professionals, they may suggest hospice care. If not, you can ask for a referral for in-home health care. Her PCP should be able to refer you to a home health agency that can provide PT, OT, ST and nursing.
Good luck! I won't sugarcoat it, it's going to be tough. But I will never regret the journey I decided to embark on two years ago. Many people say, "you did good by your grandparents". But I always say, "my grandma did so good by me".
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Reply to allisonlei
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