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My husband and I moved in with my Sister (she has Lewy body dementia) and BIL. I am helping to take care of my sister and her husband..they are both 74. I am 58 and have had 3 back surgeries. I am really not supposed to lift more than 20 lbs. That was ok until this weekend when she broke her ankle in 2 places. He cannot lift her anymore because of his knees when he fell. The Dr. said the only way was surgery. When the temp cast came off she had an ulcer and it is not healing (she has diabetes too!)
So.. Dr. said there is 30% chance it will need to be amputated.
My BIL thinks we can still take care of her after her surgery on ankle on Thursday. She will have 3 pins sticking out of her ankle and can not put ANY pressure on her foot for 3 full months..Her dementia is getting much worse and she will not do what we ask/tell her to do. I think she should be in rehabilitation but BIL disagrees. Advice desperately needed!
I pray I can convince him and he changes his mind!

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You need to tell BIL that you CANNOT do this; you physically CANNOT take care of a sister with Lewy Body Dementia *LBD* in addition to a serious situation with her ankle. Period. Does he not realize how diabetes can complicate her situation to the degree where it's not unrealistic to have her foot amputated??? My SIL is going thru the same thing withOUT LBD to further complicate an already complicated situation!! Sores & ulcers do NOT like to heal when diabetes is involved. I think you're in way over your head, personally, and aren't qualified to take care of someone in THIS condition. Honestly. Your sister won't be able to follow ANY directions either, so things will be even MORE difficult than they would be under ordinary circumstances, you know?

Tell your BIL you will have to move out if he doesn't agree to rehab, and then to getting extra in home care afterward. It's not unreasonable to think your sister may require full time care in a Skilled Nursing Facility at some point, either. Perhaps you can appeal to your sister's doctor to get your BIL on board here and to make him understand the seriousness of the situation you're faced with.

Wishing you the very best of luck dealing with a very difficult situation. My heart goes out to you in a big way.
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IMHO, BIL has zero say in this.

IS he, by chance, worried that a rehab facility may likely lead to a permanent move and that will eat up any inheritance? My BIL was adamant we not move my FIL to a NH at his EOL and was more than happy to run me ragged caring for him. (Your sister could require a very high level of care that will be expensive. Too many people look at family members as being 'free' or 'cheap' labor. )

When it became apparent that my 3xs a day runs to FIL's for meals, etc, was eating me alive and FIL's Dr. said he could no longer live at home---BIL was furious. Dad passed away 2 days after the news that he couldn't go home. BIL swooped in and vultured everything of value before a funeral was even planned. He also listed and sold dad's rental property, took the commission and 'allowed me' to flip dad's condo to make it sell faster (I was allowed a $5K budget and NOT allowed to take any payment for my hundreds of hours of work) The condo, BIL sold and took the commission. MY DH was executor...and did not stick up for. It's been 18 years and I still have some residual anger.

That's just MY story---but I know I am not alone nor unusual in this.

I do not weigh in on my MIL's life. It's NONE of my business. I support DH in dealing with her, but her life is none of my business. Sounds like you are in the position of obeying BIL---is he by chance a bit of a bully, to boot?

Families are so great...until they aren't.

I, too have a bad back and cannot lift more than 30 lbs. I am slowly trying to reclaim my life and take care of ME for a change.
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If BIL insists on "bringing her home" you are going to need to vote with your feet and leave HIM to take care of her.

He's deluding himself to think that this kind of care can be done at home.
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I agree with those who have said that you need to put a stop to this now. Your BIL is not going to agree to any other situation unless he sees there is no option. You don't mention financial issues and he is likely concerned about how much care might cost and how that would impact him; he is not very old. She needs to start by going to rehab after surgery; that will buy a little time but only a little. She will need PT to see if they can get her to ambulate with no weight bearing. Good luck with that; she will likely walk on it, fall on it again and it won't heal. They don't keep them very long and certainly not until they are actually rehabbed even if she does well. She will need nursing home care while she heals and possibly placement after that.

He should meet with social worker/discharge planner to start talking about options for care. I would suggest that you go with him to make sure they understand he will be alone caring for her. If he does not listen, start packing.
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You will need to let him know that bringing her home means he will have to hire full time help because you cannot manage her care. Be firm. It’s not safe for your sister or you. It’s likely that rehab will be covered by Medicare for a certain period of time. And truthfully, it doesn’t sound as if your sister will be able to return home without ongoing outside help, between an amputation, her dementia and her other chronic conditions. It may be time for a new plan. Having her discharged to rehab after surgery will allow for an assessment of her future care needs. So sorry you are going through this.
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Time to put your foot down...not so hard as to break it though.
YOU can not care for her.
BIL can not care for her.
There really is no other option but to have her go to rehab for however long it takes to heal.
If that means going to AL for a time if necessary then that is the way it has to be.
The problem with any dementia and rehab is how participatory will the person be. If she is cognizant enough and willing enough to participate and retain what is done then she may fare well. But if not the doctor may be right and she may face amputation. If this is the case you truly will not be in a position to help her.
If he is insistent on bringing her home I think you and your husband need to move out, look for another place to call home. You can not remain there as it will be a danger to your health if you try to do more than you can or should
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You have made a very strong case for rehab. Rehab will also keep an eye on the pressure wound and address issues needed for healing: wound care specialist will see her weekly, she will get specialized care to her wound, she will have her diet monitored and offered snacks... Also, having physical therapy in rehab will result in more frequent and more effective "work" than trying this at home, which requires very motivated patient and family.

You should probably talk to her doctor who can then reinforce the need for rehab over home recovery. Most times a resistant family member will "obey" a doctor over a family member. Your BIL is probably taking to heart that his wife is his responsibility and "sending her away" seems like a failure on his part. He needs to know that she will be coming home when she has recovered.

Seems that the time she is in rehab would be a perfect time to "fix" any problems in their home to make it easier to live in: lever doorknobs, rocker panels for lights, handrails in bathrooms, removing scatter rugs, streamlining decorative items... The general lay-out and design elements should remain, but their home may need adjustments so they can continue to age in place. Maybe your BIL can get onboard with modifications if he knows they will make it easier for them to stay home as they both age.
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We have been down this road with my mother who refused to go into rehab after fractures. It was a huge mistake. She could not get around and we were simply not able to care for her in the way she needed. My advice is to insist on rehab where she will have the care she needs. BIL can spend his days and evenings at the rehab with her so together. She needs special care now which she will get. Also this might enable you to get visiting services to transition her when home which might include visiting nurse PT/OT and an aide to help with bathing and such. You and he will see this as giving her the best care if you select a good rehab facility. That’s very important. Good luck.
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worriedinCali Dec 2020
Let’s not assume BIL will allowed to spend his days and evenings with her. In a lot of places, visitors are still banned entirely. Or limited to brief in-person visits.
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Your sister has really reached the point of needing professional care. Would BIL accept doctor's advice for Rehab and is your sister's doctor willing to tell him/them that Rehab is a necessary step?
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For your own safety, and as a nurse I will be frank here, FOR HER OWN SAFETY, she should be in rehab. I think also that soon you will have to face your own limitations in general before you do yourself a permanent injury. I am so sorry. I wish we could all just "fix it" in these situations, but that is not the case. We cannot. I hate to sound so tough in this one, but if your family will not protect you, then you MUST protect yourself. So the answer is a simple "No. She must go to rehab. I couldn't be more sorry, but she must".
That is just one more "personal opinion" for you to weigh, adding to the confusion, but I think you know the answer. I think you must tell ALL that you will be unable to participate in care now other than to do the cooking, carry in meals, do easy housekeeping; the rest is on them. I am so sorry.
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Teirra, are you, your husband, BIL and your sister comfortable with the doctor who's treating her?  I assume it's an orthopedic doctor, and perhaps a surgeon?    I think that's the first step in accepting and acting on medical recommendations:  confidence and trust in the medical pro who's providing that advice.

I'd like to share some insights into a similar situation.   The woman fell down a few stairs, broke an ankle, had surgery, followed by more surgeries and adaptations for diabetes.    She was younger than your sister, but still required support at home and long healing periods.    Her husband had medical experience; her grown daughters helped.   Still, it was  a long recovery period b/c of the diabetic complications with healing.  

Your BIL is  good person; he would be an asset to anyone who  needs care.   But the complications from diabetes may change along the way, and he should prepare for multiple doctor visits, possibly more surgery, and frustration from his wife, especially since she has LBD.   

I really think though that the crux of the issue is how best to address her care and healing, for her as well as for her husband, w/o compromising his need to provide care, but at a safe level for all.    And, unfortunately, that's unlikely to be with home care at this stage of the journey.

Someone else suggested and I concur that focus be on the long term, the healing, and how each of you can contribute during this challenging journey, w/o providing physical care that will challenge your own physical limitations.  

What might work is for you, your husband and BIL after discussion with the surgeon what will be needed, is to create a work division plan - someone does the shopping, someone else the cooking, and the various medical trips, so that each of you participates and can benefit from knowing that you're helping.  

Someone can read up on LBD, possibly consider the Alzheimers Creating Confident Caregivers Course, which is excellent, and provides alternative methods of thinking when working with dementia.

Someone can research and arrange for installation of grab bars, etc., as well as arranging the house to avoid any mishaps.  If you think she'll need assistance with medical appointments, research, discuss and locate transportation (I used an ambulance w/ non emergency service for transport when I had cataract surgery.)

If you contribute at a level that doesn't challenge your own health, you're really accomplishing your BIL's caregiving goals, but in a different way, and at a safer level.

I hope that each of you is able to find peace with a compromise, and that your sister's healing progresses well, without complication.

I think the family could look toward a positive outcome by frankly discussing how difficult it will be for both of them, but how you each can help in your own ways, and by safely doing so.
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Given the situation medically speaking, I say how dare the BIL says to bring her home - pure insanity. You have serious medical issues as does the patient. Going in your home is just simply not intelligent. Stand up to BIL - you are NOT, under any circumstances, going to have her in your space and expect YOU to care for her. She needs far more help than you can give her and you have your own needs. Do you have a POA. Get a medial pro to help you - SHE MUST BE MOVED. Tell BIL she should live in HIS home and HE should take care of her.
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Isthisrealyreal Dec 2020
The poster lives in her sister and BILs house.
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Lockett wrote:

"Tell BIL she should live in HIS home and HE should take care of her."

The OP's sister and BIL ARE living in their own home, as is the OP, and her husband, who moved into Sister and BIL's home:

"My husband and I moved in with my Sister (she has Lewy body dementia) and BIL. "
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Hi As a nurse and psychotherapist, I have had experience with families with similar problems and sometimes you have to make a stand to make your point especially since it appears you provide the majority of care.
The writer who suggested that you move out has one approach. I know someone who went to a hotel for a few days and got a positive response from the rest of the family.
I have had my husband age 80 in a Rehab 3 times for a stroke , serious infection and after 2 major surgeries. He did not want to be there but the PT in rehab was necessary. Medicare usually pays some of the cost and some insurances pay the copay. A skilled rehab provides 5 or 6 days of therapy per week which may help her become more mobile.
With 2 broken ankles dementia, diabetes, she requires skilled inpatient rehab, followed by home PT and outside help with her care unless the whole family is then able to care for her. It is really in your SIL's best interests .
Good luck!
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I have to disagree that she should be in rehab, especially with the Covid.

If she isn't suppose to put weight on her legs then she will have to be bed or recliner ridden and use a wheelchair.
If she can't transfer from her bed or recliner to the wheelchair bu use of a walker to stand up on then she'll have to stay in bed.

Her Insurance should pay for her to have therapy at home.
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I definitely think you need to look at placing your sister in a long term care facility. Due to your back problems and her dementia it is too much for you to handle without help. You need to tell your brother straight up that you can no longer do it. Nursing homes have trained staff to deal with dementia patients and she will get good care. You need to be firm with your brother. It is unfair of him to put all the responsibility of her care on you. Talk to your sister's doctor about caregivers comings in to help you out. Tell your brother if he isn't willing to take her in and care for her then you are going to start looking at retirement/nursing homes. Don't let him make all of the decisions. You are entitled you protect your own health and have a life of your own. Good luck!
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Imho, perhaps she should be in a rehab facility The magnitude of this issue is too great for her to remain in the current situation. Prayers sent.
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OK, so firstly, if you & your DH were NOT living there what would BIL's choices be?

Since HE can't provide the physical care for his wife in her current condition;

1. Hire round the clock in-home care, or
2. Arrange for residential care (whether it be called respite or rehab). This may be in a skilled nursing facility.

Since you & your DH have said no, these are the only choices I see.

Anything else is denial.
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If you are not able to care for her, she would probably be best staying in rehab for the 3 months that it will take for her to heal. Can you arrange to visit her often? When parents are in a facility is is best to visit so that you can make sure they are caring for her properly. Make sure that at the end of her stay they actually give her rehab so that she can walk and do things for herself. If she stays at home you will need extra aides to come in to help, and she'll still need rehab at the end of her healing process.
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Maybe doctor can explain to BIL that she NEEDS to got to rehab for continuing medical care after surgery, not just for physical therapy but also wound care and surgical follow up care because of her other medical problems she has to have a professional taking care of and monitoring her healing progress so she doesn't need to amputate her foot. Ask BIL which would be worse, a few weeks of rehab, giving all of you time to prepare the home for her, grab bars, trip hazards removed, deep cleaning, throw rugs removed from floors, furniture moved to make clearer pathways, setting up continued pt/ot at home for after her discharge, or having her come back home,having it not heal completely due to her diabetes and because none of you know what early signs to look for, she ends up having to go back to the hospital to have her foot amputated, she already has an ulcer from the temp cast that is resistant to healing, this too would be treated.
Do you and your husband have the means to move out of their house? If so, you can tell BIL that as much as you love both of them, you can not sit by and watch her put in harms way by not doing what is in her best interests. She may need a wheelchair at first to keep her off of her ankle, will their home accommodate it?
Good luck, I really hope he listens to reason for her sake.
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