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My grandmother was placed in a NH recently in Michigan and she hates it. She has called everyone in her phone book to complain and she is horrible to the staff. She is hard of hearing and refuses a hearing aid, which would help her understand what is going on around her. This isn’t my grandma. I know she is frightened but she initially wanted this care. I flew up to MI to help her transition to the NH (3 weeks) and two weeks have passed and now she wants to come to Texas to live with me. However, we found out yesterday that she has metastatic bone disease and declining rapidly. My husband says “No”, my family says “move her from the facility in Michigan to one in Texas”
Currently the doctors are saying she would be better off going to a rehab center in Michigan and then deciding what is best from there, more on the lines of hospice. She is getting to a point where she’s unable walk with her walker. I know a 20+ hour car ride won’t be good but what about a 2 1/2 hour flight. Would she need a letter to fly on a plane?
We also do not know how to move her Medicare/Medicaid from one state to the other, we also do not have POA.
We have no immediate family in Michigan, she has friends and acquaintances. They had helped when she was independent but it wouldn’t be fair to ask any more of them.
I’m not sure what to do!

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MI has some of the best medicaid policies if I am not mistaken. I am uncertain about TX but they will be changed, and if is quite difficult to manage. If you are not POA it is likely too late to do that and it would involve guardianship and you doing the work. I will tell you right now that I would not change her current housing myself, and if you do understand you are taking on a tremendous amount of work in doing this. You will not find many elders who enjoy being in Long Term Care so her complaints are not all that unusual. You will also find out that after laying out thousands for conservatorship and attempting to change her medicaid from State to State and get her placed that she will not be a whole lot happier. Welcome to the world of "not everything can be fixed."
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Duckiewife2020 Mar 2021
I appreciate your response. I have been thinking about bringing her to Texas but have since resigned that she is in the best place at this time.
mans you are right "not everything can be fixed."
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Leave her in Michigan. The car trip? She may not survive it. Don't let family built you into moving her. She will not be happy anywhere.

Has she been evaluated for hospice?

Transferring her insurance from one state to another would be difficult. Get a consultation with an elder law attorney in Texas. Not being her POA is another problem. Without POA do not do this.
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Duckiewife2020 Mar 2021
Thank you for your response. My grandmother was in hospice but was able to get them to discharge her from it. Her POA is an old friend who lived next door to her, she stopped speaking to them. They are willing to withdraw POA And let my grandmother choose. In know in my head she is in the best place but my heart says to take care of her.
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I agree with gladimhere...she wants to live WITH YOU, not in another facility. And I also agree she won't be happy anywhere. Again, I agree that the trip, even on a plane, would be extremely hard on her. Would she even comply with wearing a mask? I do think airlines limit who can fly depending on their medical issues.

I'm not necessarily saying to not move her, but just be prepared for the amount of work and cost involved, and that even in Texas she will still be calling you to complain, if she is able. Does she have the financial means to even cover the expenses? Your family wants you to take this on...where are your grandmother's adult children in all this? Who is her PoA? I wish you much wisdom and peace in your heart as you and your husband make this decision.
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Duckiewife2020 Mar 2021
Thank you for your response.

my grandmother would wear a mask but she would complain here too. I’m sure shes financially unable to pay for any private care.I know in my head she is in the best place but my heart says to take care of her.
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It won’t be right for you to move her. Your husband said know and respect his wishes. It will be easier for her to get out of nursing care if she was closer to you and you will be forced to take her in and she won’t be easy on you. It’s already clear because she is giving them a hard time. She will be harder on family. They will provide her with the best care you can’t give her. Don’t give her false hope of taking her in and that’s why she is bothering you because the other members made it clear that they wouldn’t do it.
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Duckiewife2020 Mar 2021
I appreciate your response.

I do respect my husband and he wishes. I know in my head she is in the best place but my heart says to take care of her.

I just feel horrible.
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Your grandma will not be happier in a NH in Texas and if you take her into your home, you and your husband and any other family living there will not be happy either. Also, you have to consider realistically if you can even meet her medical needs. As well as the Medicaid issue, etc. Expensive to make transfer and won't really make her happier. I think the problem is that she hates the ageing process, her disease, etc. You cannot fix that, wherever she is.
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If as you say she “has metastatic bone disease and is declining rapidly”, it would be good to find out how long she is likely to live, or at least to be as well as she is now. You could quite possibly do a lot of paperwork plus physical work to get her moved to care near you, find that she does not react well to the move, and that she then passes quite quickly. You will then probably regret the fuss and wonder if she would have done better without it. It’s a no win situation. Don't feel guilt, whatever decision you make.
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Duckiewife2020 Mar 2021
I appreciate your response. I’m still waiting a cal from her doctors about life expectancy but her POA has stated that moving her would not help her current health situation and cost a lot of money.

I feel guilty because I had told her several times she always had a home with me. In hindsight I wish I would’ve moved her here before covid. I know I need to accept her situation and I do to a degree, it still hurts though.
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"...she has metastatic bone disease and declining rapidly."

Have the doctors given any prognosis other than suggesting rehab (not sure what benefit that would have)? Have they determined the primary source of the cancer (lookup says this is typically cancer that has spread from another location in the body)? Depending on where this started determines the life expectancy. Have the docs given any estimate on her time left? Has she decided on trying any treatment for the cancer? This would have a huge impact on her and her ability to travel anywhere, by any means. If she's not getting treatment, the prognosis doesn't look good. One site talks of the bones becoming brittle and breaking easily - another gate to moving anywhere!

Declining rapidly - that would probably make moving very difficult. Certainly you feel for her and don't want her to be alone. Depending on how long the docs say she has, is there any way for you to spend more time with her? It is very early since her move to NH, so she may need more time to adjust or just need a LO to be there for her, at least for a little while longer.

If her time is limited, can you perhaps take a leave of absence and stay for a while? If you have young children to care for, that won't work. Combining her age with her medical condition, plus having to "transfer" Medicaid, find another place for her, etc, seems like more work than taking some time to spend with her. Like others, I would be wary that she might be looking to move in with you. With the rapid decline and cancer, she'd best stay in one place and get hospice care, as you likely won't be able to provide the care she needs.

My mother DID wear a hearing aid (she wore two until the right side was so bad it didn't help.) With dementia, she was forgetting to put it in, change the battery, misplacing it, etc. So I bought a Boogie Board for her. It's an LCD screen that you "write" on and can erase. It doesn't save anything written, but it does make communication a bit easier. The staff absolutely loved it! Even the dentist she went to loved it and bought some for their hard of hearing patients! It comes with a stylus to "write" with, but even fingernails or fingertips can work. It might be helpful if the staff can "communicate" with her better using this or something like it. Mom could read it and then respond.

So sorry to hear about your grandmother's bad news and difficulties. When we moved my mother to MC, I made sure it was local to me so that I could be there for her. Sadly the virus got in the way this last year (mid-March lock down.) I was able to visit twice by reservation, once outside and once in a special area set up for individual visits. But, between the masks, distancing, hearing and eyesight issues along with dementia, it isn't clear she knew who I was. I DO know she hadn't forgotten me - a staff member took a picture when I was dropping off supplies and showed her. It was so sad to hear that she questioned why I didn't come in to visit, didn't I want to see her?

Do visit your grandmother, if you can. If you do, don't promise anything about moving her. You can say you're looking into it, but don't set any dates. At least it would give her something to look forward to, even if it can't happen.
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Duckiewife2020 Mar 2021
I appreciate your response. I think the rehab is to help try and get her strength up, she was walking every where 2 weeks ago. She doesn’t want treatment of any kind, she keeps saying she just wants “morphine” but then doesn’t want it. Her POA asked for a psych consultation to determine if she understands what is going on.
I will look into the “Boogie Board” that may be something that can help, thank you.
I know this virus has caused disruptions to so many in long term care, my thoughts are with you.
I am trying to go back up to be with her but I have to arrange to take work with me. I call her everyday and I write too. I have thought about saying I’m looking into moving her but no promises. I’m just afraid that she would cling to that hope and be upset if it didn’t happen. She is very insistent about getting out of the NH. She has called everyone, literally. Even adult protective services on her POA. Long story but I feel helpless. I’m grateful for your helpful words and those of the others.
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Why was she placed in a NH? Michigan would have paid for 24/7 aides in the home under waiver. She would still have that choice.
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disgustedtoo Mar 2021
"Why was she placed in a NH?:

RIF:

"...but she initially wanted this care."

"She would still have that choice."

Depends... if she has no home and can't afford rent, home care won't work.
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You ARE taking care of her -- just not in your home. Caring for someone comes in many forms.

You need to get that POA straightened out ASAP, so you can be able to make decisions for her as she declines. Then you should calmly and gently tell your grandmother that she's getting the best care possible right where she is because you aren't qualified to be a caregiver for her issues. You'll be supervising everything from your place, and you'll know that you're indeed caring for her.
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No. She’s too old and will not adjust well.
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