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My mom is 84 and having trouble caring for my dad (85) at home. His dementia is growing worse, he often refuses to eat or bathe and he no longer cares to socialize with their friends. He's also incontinent and she has difficulty keeping him clean. He hurt his shoulder and it bothers him so he wanders all night and screams in pain most mornings till around noon. That means she gets little rest and the doctors say there's nothing they can do for his pain. (He has no stomach due to stomach cancer so he can only take Tylenol which doesn't help.) Mom thinks an assisted living facility with a private room near her house would be a great option. She could spend time with him every day there and participate in activities with him but still maintain her own health and independence at home. My sister is infuriated and wants mom to hire round the clock care at home instead. Mom doesn't want to have to live with a third party in her small ranch style home and feels she'd be giving up any freedom she may have in the few remaining years of her own life. I see both sides. Each wants my support. Both my sister and I live too far away to be a daily or weekly relief system for our parents so I feel my mom should have the final word, I guess, but if mom makes this choice, I think my sister will completely cut her off. My mom is a higher strung person who doesn't deal well with stress and I know she's doing her best but truthfully, it might be better for my dad to be away from her for periods during the day because she gets frustrated and has meltdowns. But I can't convince sis. She's aghast that mom would even consider putting dad in assisted living and thinks it's cruel and cold. Needless to say, dad also doesn't want to leave his home or his wife. I do feel bad that my mom doesn't want to try home health first but with no kids nearby, I understand that she'd have to always have another person in her home and she's just not the type to be comfortable with that scenario.

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Perhaps if the agency can give both your parents relief at home, light housework, dusting, cleaning a bit, watching dad, take him on a walk if they can. Preparing meals, hygiene . Perhaps adult daycare to see how he does in a social environment. I

Break down the part that taking care of dad 24/7 will take a physical/mental effect on mom and now you have two people who need help.

This decision should not have the outcome of your sister abandoning your mother, especially when nobody is close enough to check on them. Sell ranch style home and move parents closer to either of you kids. Maybe find a senior living place that can take mom and dad as hubby and wife and give them a renewal of vows and life together in a safer place :)

My girlfriend is doing that right now in Arizona with her mom and stepdad. Senior living complex where they start out with just senior living and add levels of care when they arise. For instance, medications, hygiene, memory care, etc. 3 meals a day in the dining hall. Social events and activities.
Nothing is perfect, but you just might find something that fits for you and your family. Keep looking, keep trying. you and your sister and your parents will find something that fits your family's needs.
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MargaretMcKen Jun 2019
Mayday it’s great that your girlfriend has found a good option for herself and her parents. OP says that her mother “thinks an assisted living facility with a private room near her house would be a great option” for her and her husband. We don’t know enough about it to say OP and her mother should keep looking and keep trying other options like selling a house, or hiring an agency for in-home care. Or to tell her that any decision shouldn’t have ‘the outcome of your sister abandoning your mother’, no matter how unreasonable sister is being (and abandonment is certainly unreasonable). OP is doing her best in a difficult situation. Let’s support her.
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I agree, your mom should have the final word, and she is the one most affected. What u say your mom wants to do sounds perfect! It should come down to what's best for dad and his health and safety would be more insured at an ALF. I would think your sister would want that as well. Not to mention the negative health effects on mom from stressing and little sleep by trying to keep up with caring for dad. Good luck I hope it works out
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It’s not your decision and not your sister’s. Your mother is the one who does the work and makes the choices. Sister gets a say if she moves there and takes over the job. If sister will cut your mother off because of this, it will say something very unpleasant about sister. However the chances are that she will sulk for a while and then come round. Let your mother decide, and give her your support in what ever decision she makes.
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PandabearAUS Jun 2019
Perhaps sister is worried costs will eat into future inheritance
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Agree with Margaret and Stephanie. It's mom's decision. It's her finances, her husband, her home and her life. Unless mom is somehow mentally incapacitated, she trumps everyone.
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I always try to mind my p's and q's on the forum, but your sister is being a - silly person.

Don't stay neutral. Back your mother, and educate your sister.

Unless, of course, you think there is an argument for an 84 year old lady to be on duty 24/7 in a small house with an incontinent dementia patient who's in constant pain. Does your sister suppose that your mother no longer needs sleep or rest or privacy?

For the shoulder pain, there are effective pain relief gels on the market - common brand names in the USA are Voltaren, Cataflam and Zipsor, apparently. Your mother should always check with your father's doctor first, but gels containing diclofenac and ibuprofen are available over the counter. And I do stress that she must check before she tries this on him. The drug is absorbed through the skin but it's none the less potent for that.
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JoAnn29 Jun 2019
There r pain management doctors too. I must say though, that people with Dementia are like children and make a big thing out of a little pain. Is it really that bad? Or is he exaggerating it.
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The decision is your Moms. She is 84. I would not like having strangers in my home either. Actually would make her anxiety higher. 80 yr olds cannot take care of 80 yr olds. It will kill ur Mom to continue this way. Its not fair to her. Let her have peace. Be supportive to Mom. She needs u. If sister gets mad, she gets mad.

Oh, and who is going to coordinate 24/7 care. Who is going to make sure that aides show up when they are suppose to. Who is going to make sure Mom isn't taken advantage of. I think placing Dad in a AL is the best solution. This really isn't ur or sisters decision.
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It's your mom's decision. I hate to say this but your sister may not have mom's best care at heart. She may be concerned about the money that is going to be spent if you get my drift.
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I agree with some of the others - this is NOT your sister's decision. If SHE thinks she knows so much, convince her to live at mom and dad's for a week and let mom have a vacation (even if it's just to stay in a nice hotel nearby - key is sister gets to stay with dad for the week and experience EVERYTHING it takes to care for him. It wouldn't surprise me to see her change her tune after one day!)

My older brother couldn't even handle a simple visit with mom. No care to provide. No lifting, no anything, just VISIT. During his last time in the area, we visited mom, brought pizza, I left them alone at the table to have one-on-one. I suggested a morning visit another day, bring her coffee and a donut, while I prep for condo clearing/cleaning. When I suggested another visit (later afternoon/early evening) he refused, saying he didn't know what to do with her. This from one of two brothers who BOTH said they would take mom in for that cost after first learning how much MC cost! You can't handle a simple visit and you were thinking 24/7 care??? AHAHAHAHAHA.... Some people are just clueless about what it takes - seeing/experiencing is believing - she needs a good taste.

Decision is mom's. Both of you should support whatever mom feels is best for both of them (from the sounds of it, placement is best IMO!) YOU can make that decision to support mom, but you cannot make sister change her mind. She needs to experience it - put up or shut up. Your support for mom can be key - at least she knows from one of you that this is what is best for all. You can try to explain to her how sister might be reacting and how she is basing her feelings about this on lack of information. Try to assuage mom's feelings about this, if she is afraid of losing your sister based on her decision. This is not about taking sides, but rather providing positive reinforcement for doing the right thing!
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Why do you need to remain neutral? This is your family and it’s ok to have an opinion. Your mom is 84 and elderly herself! She can’t do this anymore and she’s telling you. Believe her. Help her. Support her with her decision and tell Sis to take dad if she thinks it’s so easy. If she’s worried about inheritance money, let her know that I’m home caregivers may be more expensive than assisted living.
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If your sister is infuriated, she should move Dad in with her. Your Mom is 84 years old, both of you are very lucky that she’s managed him at home this long without injuring or giving HERSELF a heart attack. If you can’t support your Mom, I’m glad you’re remaining neutral.
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Your mother is 84. I repeat 84. You support your mother. Not hard to do. If your sis is so against it tell her to look after him. Can’t believe your mother has been doing it all this time on her own. She has a life beyond your father
SUPPORT your mother and help her out. She wants some peace
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As soon as my dad's dementia got wiggy (and he needed nowhere near the care your dad needs) my 75-year old mom gave me three choices: 1) I move him out to a care facility, 2) she would move to a hotel and leave him there alone, or 3) she would commit suicide and leave him there alone. I picked #1, and moved him 100% on my own to memory care. Mom refused to help in any manner. Be glad your mom kept him as long as she could. When you are done, you are done. My parents' situation had become abusive (she verbally and emotionally abused him), and I felt the move was in his best interest at that point. Your mom is too old to do this any longer. If she says she's done, she's done. It will only get worse. Sister's only option was my option #4: give up my own life to move in with my dad and become his 100% care-giver. Not an option at age 50.
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JesusLove1976 Jun 2019
It matters not how old, any age is rough.
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Who is going to take care of dad when mom dies from the stress of this situation?

Support your mother; she's making the only sensible decision there is.
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Your mother, quite honestly, to my mind is the caregiver, and the only one with a vote. Your sister has a right to her opinion, but not a vote. Perhaps get a licensed social worker to meet with you all and she will both listen to your sister and will explain who gets to make the decision now. This is not for you and your sister to side with or against. This is the decision that belongs solely to your mother.
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I would back your mother on this, she's 84 years old and this is an extreme stressor on her. The fact that she actually said this out loud to the both of you means she is past being done.

Tell your sister she needs to come for a week and stay with your father while your mother goes on a little vacation. Even if it's just to a hotel for the week. THEN ask your sister what she thinks. This is one of those instances that unless you are the hands on caregiver no one understands what it's like.
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JesusLove1976 Jun 2019
I would say support her even if she was 25! I caregave briefly at that age, it was no piece of cake! But I was fortunate it was only some months compared to years........
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I was going to put in my two cents worth, but you all beat me to it. Step out from the zone of neutrality and support your mother. She needs your help.
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When was the last time either of you sisters spent the night at your parents home?

Your mother sounds like she has really had her hands full. I feel bad for your sister to take such a stance. I won’t assume why but you seem to give her position some validity.

Regardless, both your parents will benefit from this placement. If one of you were there even to lend emotional support it might be different but your mom is making the best decision she can.

Mom may seem strong and able but this situation is far from over. Even with this help she still has a full plate. Caring for a LO at home or in a facility is all consuming. Initially she needs to rest. I hope you support that. As an advocate of an elder, there is never a truly “off” time.

It’s very hard no matter what age the caretaker is.

When I read through your dad’s list of health issues it appears your mom has already been taking care of him for many years. I’m sure she is tired.

Don’t be surprised if after she gets him placed, she has to deal with her own health issues.

Under the circumstances you’ve mentioned, she is doing the right thing to get your dad where he can be taken care of. Not only should you support her decision but hopefully you will let her know you are there for her as well.
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So why do you and your sister not care about your mom? You guys are all worried about your dad being treated unfairly, but have either of you thought about her and how hard all of this is on her?

I would loose my mind having to deal with someone screaming in pain for hours, have you ever personally experienced that? It is nerve shattering.

Please support your mom in her decision, which could not have come easily. If not she may very well die before your dad and then what?
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I haven’t read the other responses yet.

Gently, why do you want to remain neutral?

This is not your sister’s choice. Not even a little bit. Your mom has been the one being worn into the ground. She is the one who knows your dad far more intimately. This is her husband. This is her home.

What your sister thinks/feels is irrelevant.

Your mom actually has a thoughtful, caring plan worked out. She is getting him adequate care. She is not abandoning him. She is keeping her own well-being in mind. She is setting her own very healthy boundaries on who comes in and out of her home. This is more than most people on this board have seen in this type of situation. Her kids should be making this awful decision EASIER for her, not harder.

Having caregivers into a home can feel very invasive. It can be necessary sometimes, certainly. However, in this case, it is not necessary. And she still matters too. This isn’t all about one person, it is what is best for both parties.

I would be very surprised if sis would get this upset if the roles were reversed... if Dad was exhausted caring for Mom.

Your mom isn't doing anything TO your father. The age, dementia and bodily decline are the culprits. This isn’t his fault either. And of course someone with dementia doesn’t want to leave what they know. But, your dad’s illness means those choices aren’t ones he can make objectively. It also means he isn’t able to be a partner in the hardships (i.e., she has the extra stress of being the vigilant one as strangers come into her home. Dad can’t help. Sis isn’t there every day. And Mom probably doesn’t feel all that strong.)

It sounds like she is trying to forge a path for both of them, as best she can considering what she has already been through. I am sure her caregiving time and the process of coming to this decision has been no cakewalk.

It seems pretty arrogant of your sister to make any of this about her own feelings. Sorry, but we see so many parents on these boards that refuse to make responsible choices. Your mom seems to be doing just that. I am sure she would appreciate any support you can give her.
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JesusLove1976 Jun 2019
I do not know the answer to neutral, maybe she wants to stay out of it and not be the middle person and end up with one or both angry with her and she loses her relationship with one or both?
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Around the clock care!? I guess neither of you know how much that would cost but it would be more than a nursing home and certainly more than assisted living. To me AL sounds like the right choice. Your mom deserves the right to make that decision and your sister and you should be supportive.
Perhaps if your sister and you could tour the AL facility and see how it is and that it would be a kindness to your dad and your mom, it would help.
if your sister would cut her parents out of her life over this then there are other underlying issues with her. That is not a normal response.
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It's not about your sister, or you. It's about your mom, who is now your father's caregiver. If your sister wants to 'cut her off,' so be it. Home health care isn't always what it promises to be. Maybe let your dad do a respite stay first and try to make this as comfortable as possible, with your mom visiting every day.
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Guessing that you're trying to remain neutral to maintain a relationship with your sister, but as many others have pointed out, it's not your sister's decision. Until you've actually cared for someone with multiple needs 24/7 you haven't the faintest idea how hard it is - so unless she's willing to step up and do that, then it's not her decision to make.
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So let your sister cut her off...she needs help, she can't do it alone....it should be her decision, and it sounds like she has made it. He needs more help than she can give...she should definitely consider it.
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It is Mom's Decision to Try and Work this Out, Not Sis, Unless she is Put in Charge of Everything.....
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Sounds like your sister needs to care for your Dad for a week. Maybe then she'll gain some perspective and stop being so selfish. Your Mom is not comfortable having people in her home so you're right in the fact that it's her call: it's her house after all! Your Dad is her husband but she needs rest and at 84 she can't take care of a grown man while also sacrificing her own well being. It's not fair to her and it may result in you and your sister losing both of your parents sooner rather than later. So if I were you, I'd explain to your sister your Mom's point of view and ask her what it would take for her to spend a full week helping your Mom with your Dad. Then take it from there.
Good luck.
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Oh this is such a hard discussion because often times guilt will take on many emotions. Your sister is angry bc guilt of placing dad feels like giving up on him.
Your mom seems to know her limitations as well as what's needed for his care. Especially when Alzheimer's Disease is part of the picture. That's a whole other level.
It is statistically proven that caretakers in general have a higher rate of incidence or death because of stress. Factor in a brain disease and you can double if not triple those stats.
Im sure mom is feeling guilty too as are you, which is normal. However. You both seem to approach this realistically and for the better of him.
The "cut-off" threats are part of the guilt. It is a last ditch effort to prevent his admission. Continue with what is in HIS best interest and moms and she will come around.
Regarding home health... very expensive. Especially since Alzheimer's Disease is 24 hours, around the clock care. A couple hours a day care is realistic for someone who simply needs help with ADL's not AD. Good luck.
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Your mom is spot on. It's her decision and she is absolutely correct. Both will be safer and your mother will likely live longer.
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Mom is carrying the load, not sis. Unless sis wants to move in and care for dad, or drive her mom to her grave, she needs to back off and support mom's decision.
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Your sister has no say in this.
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So much good advice from the other responses. You have 2 parents that need to be considered. By supporting Mom in this, you are helping Dad as well. Stop being wishing washy & help Mom now or you & sis will be dealing with so much more when Mom dies from the stress of it all.
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