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Hi all - I'm new to this forum but looking for any advice. I am 30 y/o, newly married and living in NYC. My mother is widowed and lives in Ohio. Currently I'm her long distance care giver. I fly home 2x a month and I am on the phone nearly all the time. A year ago, mom was independent and living with her mentally handicapped brother in law who had his own aide services. After a broken femur, a bone marrow disorder scare and a plethora of unrelated health concerns, she spent the better part of the last year in and out of hospitals and nursing homes. She's currently in a SNF but transitioned to Medicaid because Medicare coverage ran out. She is miserable and desperately wants to return home. I'm struggling on what to do. PT is going to stop working with her because they don't feel she's made enough progress (she left ICU after an infection 3 wks ago so I do feel this is premature) and she's combative and depressed. She wants to keep trying, but they won't let her learn to walk again because they don't feel that it's going to improve.


I'm struggling as a caregiver what to do. Moving home is nearly impossible as my husband and I would both have to quit our jobs which is a big risk. I can look into waiver services for home health but she cannot get to the bathroom alone so it would likely be full time. We've considered moving her with us and hiring home health but Medicaid doesn't transfer state to state and the process is daunting.


How long until it's clear mom will no longer improve? She's so young and has no dementia diagnosis—she's just depressed and wants desperately to leave and isn't getting stronger. I have no idea who to talk to because no one my age has gone through this yet. I want what's safest for her but also what will make her happiest and I don't know that being in a nursing home at 69 will make her happy.

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As others have said, do not bring her home, do not quit your jobs, she has a lot of issues that require professional help. She will not be happy about living in a nursing home, period. No one says in my old age I'm going to live in a NH.

However, her needs dictate what kind of care she requires and it is 24/7/365.

I am sure you are feeling fear, she is fairly young and very ill, obligation, she is your mom after all and guilt, she's so unhappy and I have this life....it's called FOG and it is not a position to be making life changing decisions from.

You are just starting your life and as hard as it sounds, she's had her life, she could live 20 years in this condition and that would be so unfair for her to take 20 years of your life.

Medicaid will not pay for 24/7/365 in home health, it is cost prohibitive and the taxpayers would not have a penny left if that was offered. Can you and husband afford 20 - 25 dollars an hour (maybe more in NYC) to cover what Medicaid doesn't cover? Can you afford to quit your job, stay at home, become isolated, never have 1 minute privacy with your husband, never attend another social event, birthday party, wedding, christening, or just get your hair done? Because that would be your reality. So you would not just be unhappy you and your husband would be miserable, resentful and maybe divorced so she doesn't have to adjust to her reality.

She is making a choice to not adjust and to learn to live where she needs to be. You did not do this to her, please do not give up your life for her happiness. She is where she needs to be, it sucks and it seems so unfair but it is her reality and she needs to be encouraged to find happiness where she is. Activities and socialization need to be encouraged by you for her to make friends and let you have your life.

I would recommend not going to visit as frequently and don't take every call, she needs to do this on her own with you cheering her forward, right now she is strapped tightly around your throat and you are being dragged down. I know it is hard but you are now the adult in this relationship and you will have to make decisions based on need and not want.

You can do this and she will be okay in a NH, her needs dictate that is the best place for her, now and in her future. Please do not forfeit your life to try and make her happy.

Sorry for the book I am just sick with the options you are looking at doing.
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rovana Oct 2018
You are so right. After all, spouse comes before parent, every time. And in such a young marriage, it would be very unfair and destructive.  No one can "Make another person happy" - that is something we all have to do for ourselves, by adjusting to the reality we are in.
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This is going to be an up and coming problem in this country. Right now the majority of care givers are seniors caring for seniors. But the next generation chose to have their children later, into their 30s. So now you have people in their 60s with children in their 30s. I am one of them. At 69 one daughter is 41 the other 33.

I agree with the posts, Mom is not going to get better. 69 is still kind of young to have the health problems she does. If no Dementia now, she will eventually have it. My suggestion is to have her remain in the Nursing home with Medicaid paying the bill. Maybe find someone who will check on her for you. At your age and with the economy the way it is, I would not quit your jobs. Remember, you are now married and your decisions effect your husband too.

Your responsibility to Mom is to make sure she is safe, fed, clean and cared for. Its what she needs now not what she wants. Tell her for now she needs to stay in the NH to get stronger. You will need to see how she progresses to determine what the next step will be.

When doing therapy, Medicare will not pay if she is showing no signs of improvement. Talk to the head therapist. Tell her Mom seems determined to get better. Ask why they feel there will be no improvement?
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I reread your profile. You said:

"I am caring for my mother Linda, who is 69 years old, living in a nursing home with age-related decline, arthritis, broken hip, depression, diabetes, incontinence, mobility problems, parkinson's disease, and vision problems."

This is a lot of problems for a 69 yr old person. If she goes home, who will take care of her, because to have medicaid, she has no money for caregivers. Poor lady, I would be depressed too. No one person could care for this woman. Parkinson's will progress and Dementia will set in. They go hand in hand. Since she is breaking things, good reason to keep her in the NH. Fall risk.

So sorry you need to make this decision.
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You should be able to ask the doctor if she doctor for another round of PT. As far as discharge you can just remind her that she has to wait for the doctor to see much progress that she could live on her own to try to calm her down. From time to time her doctor does see her. You can remind her to ask when you are not there to ask the doctor. That may satisfy her complaints.

It is likely that she may never get back home. She would have to be able to make her own meals, walk, toilet or transfer. Please to not go for bringing her home with you without fully knowing what you would be in for. Plus being on Medicade and living with you would drastically reduce her services. You would have to quit you job and be responsible 24 hours a day putting your retirement in jeopardy. Read lots of posts here to get an idea what caregiving can be. There are ways to bring her to a SNF closer to you and transfer Medicaid. Speak to the social worker. At least it would cut down on travel. Also consider asking your tax accountant if your travel qualifies for a deduction.
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MACinCT Oct 2018
Darned spell check keeps changing things when everything was ok in the first place
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I was in my mid-30s when I quit a job to do in home care with someone with Parkinsons and her husband. It was hell.

So these are my opinions based on experience. A person can stay at a SNF longer than requested as long as payment arrangements are made to cover balances until the deductible is met and insurance kicks back in. BUT, they will not keep someone who is not progressing in therapy. My exes mom used to shed crocodile tears and put on fake shows to people not around often and would get kicked out of the facilities for not making an effort. Once she got home, it was worse...omg, it drove me crazy listening to the whining.

The facility will send out outpatient PT and OT for about 6 to 8 weeks 2-3 times a week. The therapists had told us that for each day the person did not exercise it would take 3 to 5 days to rebuild what was lost....that increased the pain and the depression. It is just an unending cycle which will cause you alot of frustration and alot more work. Medicaid aides will come in limited hours based on needs but they cannot force a person to exercise or comply.

I know it is hard to put a parent in a home but I think it would be best for all involved. I would also look into a therapist to medicate her depression.
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If you are likely to live in NYC long term, the best option for you and your mother might be to start the daunting process of transferring Medicaid so that you can find a facility near you. Unless you can rely to some extent on family and friends close to her current facility, she is going to be lonely and you just can't get there often. It's going to be difficult for both of you. And for your husband as well - he will be facing all vacations spent visiting his MIL, as well as his concern for your stresses. Best wishes in a difficult situation.
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Mom is determined to be unhappy and nothing can change that, she has to come to terms with what life has handed her and make the best of what she has left. Can she do that? Maybe not. Perhaps the help of some antidepressants would make life easier for her. Parkinson and eventual dementia usually go hand in hand so whatever you try to do will not make any difference to her and ruin yours and your husbands life.

As others have said make sure her life is safe and she is properly cared for and under no circumstances move her into your home.

Do you want to have children? Can you imagine trying to cope with aa screaming infant at 2 am when Mom is demanding her bed be cleaned up.

She has ruined her life do not let her ruin yours. Hugs.
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"I want what's safest for her but also what will make her happiest and I don't know that being in a nursing home at 69 will make her happy."

Based on my experience caring for my in-laws and MIL who had a neurodegenerative disorder that eventually caused her death, safety is always first. That is your new role - to keep your mother safe. Your mother may never be happy again and you cannot control her happiness. But you can control whether or not she's safe.

Just to give you an idea of how expensive in-home care is: we spent $38,000 a year on *one* 8-hour shift Monday through Friday, for an aide for my MIL. She helped my MIL for 2.5 years for a grand total of $95,000. And for the last year of her life, we *also* paid $25 per night for someone to come and get her ready for and into bed at night so that cost $9,125.

Read Roz Chast's "Cant' We Talk About Something More Pleasant?"
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Don't take her to live with you! This would be a BIG mistake! She needs 24/7 care, so think about what your life would be like. I had the same issue with my mom. She was 98 and 2 months and living alone when she fell and broke her hip. She had surgery, went to a SNF for rehab and is now a permanent resident at age 100!

After two years, she still talks about going home which is very painful to hear. But, thanks to this forum, I realized that I would never be able to provide the type of care she gets in the SNF.

One suggestion for you would be, could you find a SNF closer to your home? Then you could see her more often at less expense to you. Good luck. It's not easy...
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I engaged all day in home health for a couple of months before placing my father in MC and the extended family has engaged in home care for 12-16 hours a day for various seniors. My 72 year old and otherwise healthy cousin currently has in home care following a bad fall where she managed to break both her arm and leg so she is stuck in a wheelchair for several weeks as bones heal.

We live in rural TN and have found in home CNA care through a local agency or direct hire to be very workable. I'm not sure the experience would be in the same in a metropolitan area of NY. Is your mother's OH location rural or big city too?

Since you and your husband have a full time job, I would suggest trying to find a good agency as long as your mother needs 24/7 coverage. If she improves to a point where she doesn't need someone there all the time, the a direct hire of a couple of retired nurses, stay home mothers with school age children, homemakers with grown children, etc. may work well.

Since your mother got out of ICU just 3 weeks ago, she may not be recovered enough to have the endurance necessary for a full PT program. I was in the hospital for 10 days followed by another 45 days of IV antibiotics for an aggressive infection at age 48 and it took me over a year to fully recover my previous energy levels. When my mother lost a high blood volume during hip replacement surgery at age 64, it took her about a year to fully recover too. Neither of us had the assortment of health problems your mother has. She may need time to recover while she sits in a recliner and does various non-weight bearing exercises to build endurance.

Another option you may want to investigate is smaller group nursing homes, maybe where none of the residents have dementia or are younger like your mother. We have some in our area that have as few as 8 residents in the home.

I encourage you to begin thinking of both short term and long term plans. Short term you may bring your mother home with 24/7 in home care and see if she improves, then engage in home PT. Long term would probably include relocating your mother somewhere within a hour of your home in a good care facility according to the level of care your mother needs and is likely to need in the next few years.
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