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Maybe mom could move out to small apartment nearby and leave dad and caretaker in the house.
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Why does sis even have a say? This is mom's decision. Do mom a favor and find her unbiased emotional support. Mom has been clear and cannot do this any longer, it is killing her.

Call the Area Agency on Aging and ask they visit mom and dad to complete an assessment. Or find a Geriatric Care Manager to help mom get this done. It would be very helpful to mom if sisters could get on the same page and support mom in her decision. It would make it much simpler for mom.

Get on the phone today and find your mother the unbiased support that she needs. It would sure help if at least one sister would visit while all this is occurring.
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You don’t remain neutral. Why would you force an 84 year old woman to provide 24 hour care to a very needy person with multiple different needs? Even if she were a young fully trained nurse she would only work a few hours if the day. Many people get to retire at 65.
Your mother is an intelligent lady who has done her best and has researched what’s best for her husband.
He will get professional care and proper meds (injections of pain meds that your Mother can’t provide-no one needs to scream in pain). Sister has no say.
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This basically is your Mom's decision.
If your sister loves so far away that she can not help o n a daily basis or even weekly then she should have no say in what your Mom's life should be when it comes to care-giving.
For me it was safety that I drew the line at. As long as it was safe for me to care for my Husband, as long as it was safe for him I decided I was going to keep him at home. Luckily with the help of the VA and Hospice I was able to keep him with me. But I would not have been able to do so if it were not for the help I got.

There is another option that might make your sister feel better. (If her concern is that Mom and Dad will be apart...will not help if her concern that the cost of Assisted Living will eat into her inheritance)
Has Mom thought of moving to Assisted Living? If so they could move together. Mom would have help with Dad and later if she needs help herself. (Your Dad would probably transition to Memory Care within a short time) And your Mom would be able to come and go while Dad is cared for. No utility bills, no maintenance on the house, no home owners insurance, minimal food bills, probably reduced driving since most have vans transporting to shopping and other outings.

But again bottom line..this is Mom's decision to make not yours or sisters. Support Mom, I am sure this is not an easy decision for her to make and only she knows what she goes through on a daily and nightly basis. She probably does not tell you everything!
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If a person at any age, even 15, do not have what it takes to be a caregiver, the perso, if need it be, move the one needing care to NH or AL if that is the best thing. The one needing to be cared for should be checked on regular basis and not be penalized for not being a caregiver. If anyone else resents it, why are they not jumping in to help? If they do not want to sacrifice their lives to do it, or even feel, not their responsibility, then do not think less of the person who cannot be a caregiver. Now, if send someone to NH or AL and refuse to check in someone often enough, that is an entirely different story.
Also caring for an adult is nowhere near the same league are caring for a kid or teen. A lot harder to care for adult.
As for bringing age into caregiving, a person can be under 30 and it still be just as hard as passed 70.
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Dear ImSusan2:

I had to read this post a few times to understand and reply. I was shocked with your sister’s stance on your Mom’s need to have your Dad go to assisted living. It seems like her guilt is what is what is in play here. She has no idea what is involved in the day to day care of your Dad. Hiring a round the clock live in is not the answer to your Mom’s needs now are for a peaceful, less stressed life. Like maybe a vacation to see her children and grands or visit friends. Your mother is not abandoning your Dad she is making both their life’s better.

Your sister has absolutely no say in how your Mom handles your Dad’s needs and your Mom’s own needs. It’s the best decision for both your parents and both of you as well. Please support her at this critical time in her life.

I hope your Mom has all her ducks in a row should she need an assisted living situation when the time comes.

I hope you support your Mother in her decision. Your Mom truly has it all together and knows what is best for your Dad, and her.

Over a year ago I was taking care care of both parents in their home for seven months. My Mom has lived me me the last 7 years. I couldn’t do it anymore. So my Dad, now 89, with an “attitude” went to AL. My Mom, 92 with Alzheimer’s (with many medical issues including double incontinence) and I moved back to my duplex. My Dad adjusted well and I try to visit him a few times a week. If my parents had money my Mom would be in a nursing facility.

Again, please support your Mom and help with the transition.

Bless you all.
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I can hardly believe this! Support your Mother. If your Dad didn’t have this horrible disease I’m sure he wouldn’t want your Mother going through this. It’s obvious that you have all the reasons written down but have no clue how hard it is to deal with. You and your sister should go spend a couple weeks there (use your vacation) and send your Mother on a vacation. I’m sure you would both fully support her after a couple days of it. I’m much younger than your Mom and my husband is in a memory care facility. People in the house didn’t work our very well and when I found one she still couldn’t do it by herself so she was paid just to watch him because he would not cooperate with her. My stepdaughters totally backed my decision for a facility, they wanted no part of the caregiving. It’s a horrible decision your Mother has to make and I can’t believe she is getting no support.
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Your answer is in your own words...Both my sister and I live too far away to be a daily or weekly relief system for our parents so Mom should (DOES) have the final word. Unless your sister is willing to move in and help out she flat out she has NO say here. Your sister being "Aghast" She needs to go stay with Mom and Dad for two weeks (not one) she will see for herself how difficult this situation is for your Mother. Your sister sitting from afar trying to dictate policy is just rude, selfish and mean. As far as having someone move in. My wife has done this for several years with her parents (now just her Mother) One of you would have to help your Mother find and manage this person. Our experience has been about every 8 months it goes south and we are having to deal with a surprise vacancy or having to deal with getting rid of someone that did not work out. Without one of you close by to stop in on at least a weekly basis to check in on this live in situation your Parents are at high risk. My wife used get calls from her Brother and Sisters. You should be doing this or that. yak,yak,yak. From 1000 miles away it is sooo easy to judge. How about you come here and take over. Phone goes silent!!! Things could be SOOOO much worse for the two of you. Your sister should be thanking her parents every day and be sooo grateful they have the financial resources to even have these choices.
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Why would you want to remain neutral? This will actually kill your mom. Get her the help and rest she needs and stop trying to make everyone happy.
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Keeping him at home is so unfair to your mother. She knows that it is time for him to go to assisted living, possibly memory care. If your sister gets upset, so be it. Support your mother, she deserves a life too!
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I had to do this for my mother and then grandmother. Believe me it was hard I cried.



My uncle didn't want this for my grandmother. But we cant afford to have someone around the clock. It is up to your mother your sister will come to understand. My mother and grandmother are together and the place they are at is wonderful. I am able to see them everyday. I put them near me.

By the way my uncle never offered to take care of her. Tell your sister to put her life on hold and move in if she feel so strongly about this.
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You shouldn't remain neutral. You should do the right thing for your mother.
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It sounds like you mother has a very good plan for what is best for him and for her and recognizes she cannot continue caring for his numerous needs and AL would give her the break she needs, but still allow them to spend time together, doing activities together and the time she is with him will be quality time without wearing herself out and give her the reassurance that he is being well cared for. She simply cannot handle it alone. Studies show that being a caregiver with dementia is one of the hardest types of caregiving there is and many times the caregiver dies before the one they are caring for. Sounds like Mom has thought it through and knows what she has to do. Good for her, and good for you for wanting what is best for them.
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Two suggestions: First, if your sister feels that strongly that your dad should not move into an Assisted Living then have him move in with her!

Second, around the clock care is very expensive. Would she be willing to cover the cost?

Your sister should not be telling your mom what she should or should not do as far as caring for your dad. No one knows the stress caused by trying to take care of someone with dementia. It sounds like your dad is in the later stages of dementia, he may do very well in an Assisted Living Facility (ALF). ALF's can provide a structured routine which individual's with dementia do will with. I will caution you that if your dad wanders and there is a chance that he would try to leave the facility (called elopement risk), then an ALF will probably not take him. If that happens you would need to place him in an ALF Memory Care or Skilled Nursing Memory Care Unit.

Finally, if your dad is wandering at night then your mom is probably not getting enough sleep at night because she is constantly being woke up by him or is worrying about him getting out of the house. She could very well be suffering from sleep deprivation and that would explain some of her frustration with him.
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Judysai422 Jun 2019
I agree on all counts, but dad definitely needs memory care if he wanders. The other option if for both parents to move into ALF together. That's what my dad did when he could no longer care for mom even though he could have stayed at home or Independent living. However, your dad's condition is more advanced than my mom's.
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Why in the world are people so aghast at having to put a love one into care? I don't get it. These places are NOT horrible. Maybe some are but there are a lot of good ones out there. I had to place both my mom and my MIL and they were well taken care of and did fine. My mom even enjoyed the activities they had for her. I cringe everytime I read where "I WON'T ever put my loved on in care." Would they have the same reaction if they were going to a hospital for care? People need to back off and let the people doing all the work, make the decisions.
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X4patience Jun 2019
Where I live; Homes are short staffed, and therefore staff are over-worked which results in frequent cases of neglect, theft and elder abuse.
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I'll add another vote to have your sister take a "vacation" for a week to take care of Dad. Encourage your mother to take a vacation at your house or actually go somewhere for some much needed rest so your sister handles all the problems your mom presently does. Sister has no clue and her attitude will take a sudden change after taking care of Dad for a week.
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lynina2 Jun 2019
Excellent idea, although more than one week would be better. She has no idea.
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This is a difficult time, for everyone I’m sure of it!
Playing a supportive role is important but may seem impossible without someone feeling betrayed somehow, or hurt.
I don’t know your relationship with your sibling or parents, so I can only advise as far as what I’ve known.
Generally, no one wants to leave their home, or their family, (which it may feel like to your Dad) and dread the adjustment of a new place to call home and how it also may seem one step closer to the end of his life. That’s normal, so it makes sense Dad doesn’t want to go.
He has to be honest with himself, his situation and be realistic when making this decision. I say this, because we all hope if our minds are somewhat still well, that we have some kind of control over our own lives, especially in the end years. Depending on his level of dementia & his ability to reason, is he able to be realistic? Does he understand and accept the state he’s in, and understand the level of care he requires and whether or not he can reasonably be cared for at home?(and whether or not in home care is affordable for them)
It is his home too, so why would he want to leave it if there’s a way for him to stay? It’s never convenient or comfortable to have others in your home or to have to adjust your life around other people but this is part of the changes that occur for most people in their end years, like it or not.
You didn’t mention how much care is required, or if your Dad is well enough that he will require help for years, months, weeks? Dementia can go on for years and of course, is progressive. Does he require round the clock care or less?
My mom had about 3 healthcare workers a day come by. They always called first and we were able to initially request the time of day it was best for Mom.
IF THEY CAN AFFORD IN-HOME care, then isn’t your Dad entitled for them to try it out?
Maybe your Dad only requires these kinds of short visits like my Mom during the day?
If more care is required, then it’s more adjusting but it’s peace of mind. Your Mom won’t be burdened with his care as she is feeling she may be right now, and your Dad will have more peace being where he wants to.
My Mom was the same as your Mom in the sense that she didn’t ever like people invading her space. Funny though, when she was the one needing them, it was suddenly OK.
Your Mom must consider that like my Mom was first to go, it could very well have been your Mom who was in your Dad’s shoes! Would your Mom want to feel pushed out because your Dad wouldn’t want to have people in their home? I’d imagine not.
No, your Mom shouldn’t care for him if it’s too hard and it IS HARD but she also shouldn’t be against being ‘inconvenienced’, by having healthcare providers there to both help him and help her! This is her husband of years and years and the father of her kids and that is his home too! Who does that to someone in their most needy, weakened time? Ship them off to be someone else's problem’?
Imagine one day if you were in the same spot as your Dad? Helpless and your other half wanted to relieve their burden of you so their lifestyle wouldn’t be cramped?
If the home care doesn’t work out-and your Mom would have to give it an honest go; then it would be time to consider sending him ‘away’.
Your Mom is thinking of what’s convenient for her and selling it like it’s what’s best for him :/ without even first trying the inhome care.
Inhome careworkers are very respectful and try to be as least intrusive as possible. They realize it’s their client’s home and that it’s a difficult time for everyone.
Eventually, he’ll progress to the point where he will most likely require living in an assisted living facility, but at home care for now, may work out in the meantime.
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What happens if your mother dies, is your sister going to step in and care for your father? or will she make sure that ALL of your father's care is coordinated from miles away or will she make it your responsibility? (in home care does not necessarily mean good care) If your father is placed in a facility your mom can make sure that he is properly cared for instead of being exhausted and responsible for 24 hour care with no assistance. Maybe you can suggest that your sister come to visit your parents for a month and take on 24 hour care without assistance from your mother. She just may change her mind about placement because a month will seem like an eternity. I cared for my mother for 4 years because I prayed that she would pass before I had to place her but it did not work as I hoped and I placed her in a facility 10 months ago and I visit her 3-4 times a week to make sure she is being cared for properly and I feel so much better (mentally and physically).
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My husband has dementia although we are not at the point of that decision yet . I too have 2 daughters.
So far any decision I have made , such as staying in our home that he’s familiar with rather than moving a bit closer to them ( luckily they are only about 40 minutes away) they have agreed even tho they know I’m thinking of myself as well as I cannot add the burden of a move to my life at this time . I hope they will always realize that I love their father but , while I’m still of sound mind the decision is mine. I’ve supported them and their father their whole lives and when/if I make this decision it will have been made with great sadness but with a bit of self preservation as well . They help constantly but unless you’re living it 24 hours you have no idea what the caregiver is going through . They seem to support and understand this and have even mentioned gently that things will change and when they do they will support the changes I feel I need to make . Your mother deserves that same support.
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Your mom is reaching out for help. No one wants to go to a care facility, but many really need to. She is 85 years old herself. As dementia worsens it will get harder for your mom to deal with. Dementia is very frustrating to the patient and hard for the family emotionally to deal with. Is your sister prepared to take your dad and care for him herself? Or move back to help with him? If not, she needs to step back and stay out of moms way or you will be losing both parents about the same time. Or can mom move in with one of you while someone stays with dad? Mom probably won’t go for that either. Bottom line, can they afford to pay the help? If not, then they need Medicaid and Medicaid has their own rules and regulations on what they will do and how it can be done. They may not have a choice but for him to go to a facility in that case. At this point, the answers are not easy but complex. You have to think about both of their mental healths. Dad could last for years, but with the stress of caring for him, will mom? I care for my bedridden mother, changing her diapers and getting her up in a wheel chair to have meals. I knew I couldn’t keep it up much longer, I was having back pains and struggling with it. Hospice sent in people, but only for visits lasting 15 - 30 minutes each. It was all on me. We couldn’t afford to put her in a facility without selling her home. Selling created more problems. It’s not fair to anyone, but it is a part of life many have to deal with. Ponder it prayerfully. What is best for both of them? Is moving mom and dad closer to you girls a solution? Every elderly person wants to stay in their own home, some can’t. If moving them is unsettling, then maybe help in the home won’t be so bad. Does he require 24/7 care or just help during the day to lighten mom’s burden? How is her health? Will her continuing caring for him decline her own health? Getting upset isn’t a solution. But considering all the options is. Finding a workable solution for both of them is the key. Forcing her to have a stranger in her home may pull her health down. The decisions made will affect both of their healths.
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It is your mother's call; she knows that she has reached her limit and that continuing to care for her husband has become detrimental. Her decision must be honored as long as it is financially feasible and the assisted living facility can handle his needs. Your sister must remind herself, "There, but for the grace of God, go I." She is also imposing her personal standards at a much younger age. She needs to imagine how it might feel for mom at age 84. The arrangement your mom desires may be the kindest and most healthy for their relationship as well.
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I'd be thinking about calling Hospice. I totally understand as I am just at the point of getting some in-home help for a few hours a week. I'm in the "business" so I know what to look for...and know the concerns...getting breakables and valuable into a safe space to be protected...I was shocked to have met with THREE different agencies people (no aides, just initial interviews with the exception of one) and I would not work with any of them. Reasons were aide had 10 offenses on driving record + a court record for trashing an apartment; marketing person was sent for initial visit and was clueless about background check procedures for sure and did not see breach of confidentiality if aide was dropped off by 3rd party; follow up by one company's employee resulted in my taking 1.5 hours off from work to meet and she was a no-show--this was to create care plan which could have been done at initial visit. I did not receive any call or message. Work time had to be made up; when I conveyed anger/annoyance person made comment about my "bashing" her and "maligning her character" which was not doing...but she took no responsibility for the lack of call and I refused to be talked to so disrespectfully. Finally 4th seems good. So, all to say that I'd rather try at home before the cost and hassle of asstd living. Call the local Area Agency on Aging, explore all the options, but in the end realize with both you and your sister living out of state, the decisions may not be yours to make. ANd with dad having dementia...it may not be up to him either...but do be aware that sometimes a change in environment can result in additional issues and failing health or worse. Maybe mom needs to clearly know all of her options.
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PattiRaeT123 Jun 2019
OMG. Your answer is like Charlie Brown's teacher. The sister has no say in this decision. The mom has the power. Move dad and the rest of the family can shut up. I've been in this situation and was lucky my five siblings supported me with both our parents.
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Hello:

I think that it up to your Mom what she is to do. Caregiving takes a huge amount of energy, and caring for an aging partner when one themselves is aging is extremely difficult. As your sister (and you yourself) are not able to be there with her 24 hours a day to relieve her burden, then your Mom should be able to make her own choice. Even if one or both of you could help, the final responsibility would still belong to your Mom. You could also be too much in the way, even if you are helping her. As a person who helps caregivers make these kinds of decisions every day, the only person who can know when they have reached the tipping point is the individual themselves.

When I counsel people at this point in their lives, I want to make sure that they are able to make this decision and carry it out BEFORE they themselves collapse. One such clients mine did so a few weeks ago because she is so committed to caring for her Mom. But Mom's needs have increased in the 13 years she has been living with her daughter and son-in-law.

I hope that when the decision is made, your sister will not chastise your Mom for the decision she has made, but be supportive. This is not an easy choice for your Mom. She is not being selfish, she is granting them both a greater freedom for the last few years of their lives. She is freed up from the daily challenges and fatigue of being wholly responsible for another person, and he is freed up from the guilt of requiring so much more care and assistance.

Despite the aging care statement: your loved one doesn't have to got o a nursing home. Yes, sometimes they do, because even with in-home caregivers, there is a huge amount of day-to-day oversight of those people coming in to help care for the loved one. making room for the extra person, personalities, scheduling, failure to show, language barriers as many are not primarily English speaking. Many at teh beginning of this journey start with in-home caregiving, but then find that it is simply not enough, because the Primary caregiver is still required to fully and actively participate. The burden may be lightened, but never fully removed. And at some point a lone caregiver without any support , particularly one who is aging herself, will not be able to provide adequate oversight to ensure that the loved one is getting good care.
In other words, hired caregivers need to be cared for as well, so the care taking shots from direct care of the loved one to oversight of the hired caregivers. Even if they are hired by an agency.
It is not an ideal choice, but life is often a chore between the lesser of two evils.

Love them both and support them both through this difficult time.
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You cannot remain neutral!
Side with your mother & fufill what she desires!
Things you all are experiencing have actually come to a head!
Bottom line.....Your parents quality of life & dignity is of the greatest priority and absolutely vital for them.
Mother is wanting what's best for her husband, getting the continuous care he needs. She can't do it! In turn, this will give her peace of mind and heart & Mother will the get rest she needs. It will be difficult enough that her husband & life long love will not be living with her in "their" home. She certainly doesn't want stranger caregivers in their home. But she can & will enjoy being able to go to be with him at the AL.... remaining close to him.
Another important issue is, mother is well aware that both her girls don't meet eye to eye on this even though she may not give much attention to it. Never the less, this is additional weight mother does not need.
High strung or not, sister is experiencing a reality check here & there's a lot of emotional turmoil.
In any event, the on going battle she's causing or having, it's vitally important sister put her feeling aside immediately. Sister needs to be strong for Mom & Dad. Especially mother!
Don't be afraid to move on this if sister doesn't. Don't be afraid of what she may do. Your parents are priority. Your mother needs your strength & support to fulfill her desires regarding her & her husband.
Blessings
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It never ceases to amaze me when someone who doesn't have a clue what it's like to live 24/7 with a person that is afflicted with Alsheimers or Dementia or Parkinson's decides they have ANY say about that person's care or placement in a facility when that time comes. If others want a say then they should STEP UP. PERIOD. Don't even pretend to understand even a little about what that caregiver has to endure. They love that person and they give them their own life without question. But it takes a HUGE HEARTBREAKING toll on the caregiver both mentally, physically and financially. It's the worst situation ever. I wouldn't wish that on my enemies. I'm in my 50's and have endured this for 6 years with no help from siblings. But the advice is always there. Save it. Unless you want to turn your own life/world upside down.... keep your thoughts to yourself. Your mom is 84...God love her. She is far too old to have to go through that. Either your sister should step up and move dad to her house and get a big taste of Sun downing and the rest of it....Or she should thank her mom for all she's done for your dad and help your mom get dad in a facility. Spend a few weeks with Mom and see what her life is like. Unless you and sister have a life and can't. Help your mom. She deserves to live her life. Hers is much shorter than yours. She doesn't need your opinions. She needs your help and understanding.
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LorraineDe Jun 2019
Wonderful response!
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One other note - mom doesn't want people in her home to begin with, but even if she did, it is NOT going to resolve the wandering/screaming in pain - that will continue to impact mom. I wouldn't want others in my home either, PLUS it is more difficult AND more expensive to hire help to come in (never mind assuring quality care, though that can apply at a facility too.)

As hard as it is, sometimes moving them to a care place is the best and often only good option. Focus on supporting mom's decision. For sister - as I said before she needs to put up or shut up. Until she can experience the whole 9 yards, she isn't going to understand. TELL her to take over for mom for a week and then rethink her stance on it.
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It sounds like your dad will need greater care than assisted living can provide. We found a nice memory care facility for my mother-in-law nearby so we could visit her easily.
Keep in mind that if Dad is screaming in pain most mornings until noon, that will upset the other residents at the facility, and they will need to find a way to control his pain (or his response to it).
Mom needs sleep and she needs respite. We began to look at memory care facilities when we realized we had no recourse if a family emergency were to arise and we could not leave her alone. We were amazed that her transition to memory care was so much smoother than we thought it would be.
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Does your sister plan on caring for him 24/7 or try to figure out the funding for him to stay in the home. Regardless, your mother has the first say and if she can't do it anymore, well she ought to know. Everyone is all talk until, you realize first hand what it's to take care of someone who is elderly and is fading away in regards to health. Your mom can't do it anymore let's just face it and by far I am sure it hasn't been an easy decision for her. It must be really really stressful for her period!!!! I hope both your parents chose their health proxies wisely, so in an event something God forbidden happens they will step in act accordingly to what their wishes are.
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Remaining neutral is not an option. Your sister is being unreasonable. Your father has dementia. And your mother is the only one whose being sensible about the whole situation.

Caregivers often die before the ones for whom they are caring. Support your mother before it's too late!!!
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I have been a caregiver to my Mother for 3 years and have also been the director of admissions for a long term care facility and am a certified assisted living administrator. Your sister needs to put on her big girl panties and grow up. Mom can't take care of your Dad any more. If you sister thinks she can do a better job then she can either move into the house with Dad or move him to her house. If you Mother drops dead while trying to care for him, what will happen then? How will your sister feel then and what will she do with Dad. After a few days of trying to cope with Dad, I'll be she will be more than willing to find an AL that will accept him. Support Mom - she needs some TLC and space too.. Give Sis the choice of moving Dad with her - she can hire the live in help or supporting Mom. Remind her that she had two parents that need care and that life is not a script on the TV where it all ends with happiness and cute resolutions. And show her my response.
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katiekat2009 Jun 2019
If anything happens to mom, angry sis will continue to keep her distance but begin to tell sis ( that wrote in) how to take care of dad. My bet is she will then turn her anger and ire toward other sis. Be forewarned!
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