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My mother just turned 78. In 2014, she began to show signs of dementia and was diagnosed with dementia and Parkinson's.. She was still able to take care of herself at that time. Eventually, she could not handle any of her household responsibilities or drive. My sister elected to move in with her at this time. Since then, my mom has declined at a rapid pace to the point of being unable to perform her ADL's and toileting. She was hospitalized the beginning of January for dehydration and that has made things worse. My sister is overwhelmed and can't handle the care. We have a nurse that comes in 8 hours a day during the week, but all care is left to my sister at night and on the weekends. We are torn about what to do. Mom is still with it in terms of knowing where she is and does not want to leave her home. There are so many things to consider. On top of all this, we are getting some family guilt thrown at us because our aunt took care of our grandmother until she died at age 98 without ever moving her to a nursing home. I think the same is expected of us. My sister is a prisoner in the house, as Mom can't be left alone for any period of time. I help as much as I can, but I live over 1 hour from them and can only help on the weekends. I know this is rambling, but has anyone gone through the same thing? I'd like to add that money is not a problem (Mom planned well for her retirement). We are so overwhelmed. I also believe Mom has Lewy Body Dementia with Parkinsonian features, but that's another story. Thanks

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Dear Bethany; Oh, I so feel for you and your sister. Has your sister had a physical checkup any time recently? It sounds as though she may be at the end of her rope!

The idea of doing a respite stay for mom while the house is undergoing rehab sounds like such a good idea for ALL of you. You may find that mom loves AL, or not. But in any event, it will be what sounds like a much needed break for your sister.
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Wow. have been trying not to complain or say anything to anyone about my feelings about the situation where my father in and out of skilled nursinug and hospital ever since the day the day he had an appt with the cardiologist. Every time thought he had a chance to come back home, but maybe for health and other screwed up reasons he is still in there.

A younger family member who seems to have control issues has moved his bedroom without his permission. Another family member is.suuposed to be planning to make a trip up here and was hoping for a visit but have been told they may try to move him to Florida. Not sure if he can travel as he is not doing so good. He is hanging in there but he is having a difficult time standing and not walking much anymore. Really miss him and not sure how other caregivers cope when their loved ones have had to stay in skilled nursing for so long and unusual family situations.

This has always been a nice forum and am hoping someone else can relate as this is really not easy to deal without cg support group.
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Thank you for your answers everyone. We are scheduled to visit 2 assisted living facilities Saturday. My sister is really digging her heels in that we are only going to visit and we are not making any decisions...in between crying to me on the phone that she can't handle taking care of Mom. *Sigh* One facility offered us respite care while the house was being rehabbed, to see how my Mom and we did with the placement. These are private pay with good reviews and reputations, so we will see how it goes. Mom is not going. As for my aunt, as many of you asked, she became an angry, bitter woman for giving up so much of her life taking care of her mother. She missed out on so much because she couldn't travel and do the things she wanted to do. I'm hoping my sister begins to see that.
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It really sounds like your mother needs to be in AL or a nursing home. You might be able to do an AL for a while if you can hire an aide part time and transition her into 24/7 care.
All the time, I think about my mother who has been in a nursing home for the last 3 months. I feel guilty every day that she is there but we have no choice given her age. Mom always said she would kill herself if she had to go to a NH and she keeps saying she wants her house but we all reach a point we cant care for a house no matter how much we want to.
At 101 our Mom needs professional care. She can't walk and has dementia but keeps trying to get up and falls if she is not watched constantly. My sister and I are seniors ourselves and we physically can't take care of her or watch her 24/7.

Try not to let relatives make you feel guilty. You need to do what needs to be done for her (and for your) best interests.
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Bethany, it strikes me that that plumbing disaster might have been "sent." Isn't this the perfect opportunity for your mother to give the best ALF you can fix her up with a trial run? Think positive: she'll be going there for a perfectly good logistical reason - that the house is uninhabitable - for a predictable length of time and she may well take to it. I'm not suggesting you should trick her in any way: seriously, she is there, booked in, for the duration of the rebuild; and in the first instance that's it.

After that, then either she likes the ALF and you extend the contract, with her willing consent; or she goes home with a full care package in place, as much as your sister agrees is necessary for her to cope. Or indeed to replace your sister completely. If money isn't an issue (and replacing family care with professional care costs a bomb and half), it can be done.

On the auntie issue: well, good for her. But auntie is not you or your sister. Your mother is not your grandmother. And besides, what was left of your aunt after all that? Not every practice deserves the status of family tradition.
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A dear friend chose to move in with her mom "temporarily" while she rehabbed from a surgery. 7 years later she was still there, full time. Her mom hated this woman's hubby, so he wasn't allowed to come into the house. Her last child went all through HS and college with her mother living at Grandma's. This caused horrible strains on the marriage and 2 of her kids aren't even speaking to her anymore, as she chose grandma over them. She has stated emphatically, many times, that she should have placed her mom, rather than moving in with her. She cannot get those years back and is still struggling with her marriage. I asked her why they didn't place her and she said "Guilt, and now I have tremendous guilt about abandoning my family". She has been a primary "voice" for me as my mom is getting worse. This woman is 59 and looks 80. The stress of caring for a very difficult mother just about killed her. And she has the guilt to deal with, too. It would have been so much better for her to have her mom professionally cared for and for her to visit a lot.
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Thank you for posting your message, These are so much similar to my feelings and thoughts about my adult special needs daughter. I too have caregiver burn out, I'm 71 and tired. I don't need placement for her but do need some help with breaks to rest up.
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Please seriously consider placement for your Mom. My Mom is 91 with dementia and she too could not be left alone and needed assist with all ADLs. I was her 24/7 caregiver with the only break being 4 hours on Tuesdays when she went to the Adult Day Center. Last month I placed Mom in a nice Memory Care facility. I just could not do it anymore. Like your sister I was a prisoner in my own home. My own health was declining because I couldn't go anywhere or do anything. I was becoming impatient with Mom and I knew I had reached total caregiver burnout. I had to make a change. Now that I'm a month out do I feel guilty or regretful about placing Mom? No, I don't feel guilty. I do regret that she has to go through this horrible disease but there is nothing I can do about that. I just could not care for her alone anymore. A burnt out caregiver cannot provide good care. I did the best I could for Mom and I will still continue to do the best I can for her. I know she is getting good care at the center and there are more people there to help her if she has a problem. I go see her every couple days or so and it's nice to visit and enjoy her as a daughter not as a caregiver. Ideally I would have liked to care for Mom at home until she took her last breath but sometimes things just don't work out the way we would like.
To those who are trying to lay a guilt trip on you and your sister I would just ignore them. They are obviously ignorant as to what goes into 24/7 caregiving. Speaking from ignorance is easily done. Do what's best for you, your sister and your Mom.
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I have the same feelings of guilt and abandonment with the thought of putting my adult daughter with CP in a care provider home. I'm 71 and have caregiver burnout.
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Mom is hanging in ok at the hotel. She and my sister have had to move to several rooms until they got a room with a kitchen and roll in shower. My mom hadn't had a proper shower since last Friday because she can't get into a tub. I'm calling some facilities tomorrow...
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Oh, how awful!!! One of the immediate benefits we saw when we moved mom, fist to IL and then to NH is that we didn't have to worry about the various house things that would go wrong, like leaks and even the expected stuff like snow removal. Is your mom doing okay in the hotel? Is this maybe the time to start looking at facilities?
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I need to clarify a few things, since I was rambling when I wrote this. My mother's dehydration was caused by a bout with a stomach bug. Normally hydration is not an issue.

I think the guilt is me beating myself up, rather than anyone in my family actually judging me. My grandmother never had dementia, her body just wore out because of her age (98).

As my mother continues to deteriorate, it becomes more obvious that we are going to need to place her in a health care facility. It is so sad to see her become a shell of her former self. She is not interested in anything, has a low alertness level and wants to sleep all of the time. She is still ambulatory and can speak.

Last week a pipe burst in the house, flooding the upstairs and downstairs. All 3 bathrooms need to be redone, and all the carpet, flooring and ceilings downstairs need to be ripped out. Dry wall will need to be replaced. We really didn't need this now. My mom and sister are in a handicap accessible hotel room, and will probably be there for at least a month. Thank goodness insurance is paying for it.

It never ends.
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Ah, family guilt! Is the aunt who took care of grandma still alive? Is she the one doing the guilt tripping? I'm going to assume not. I'm also going to make an assumption that grandma didn't have dementia.

Dementia, for me, was and is a game changer in the elder care home or NH question. As is mental illness. When an elder needs 24/7 supervision, it takes 3 shifts of young, mobile, trained caregivers to do the job.

If mom was hospitalized for dehydration, I'd say that's a pretty good indication that she's not getting the level of care that she needs at home, aides or no aides. Being at home is isolating for an elder. Being in a NH setting will give her access to peers, activities and better on-site health care.

My answer to anyone who looks askance at the fact that my 92 year old mom with dementia, CHF, Pleural effusion, anxiety, depression and aphasia is that my mother is getting professional care. They have nursed her through pneumonia 4 times now; I never would have even noticed the symptoms, because elders don't present with the same symptoms as younger folks.

Healthcare is ONSITE. No one has to bundle my mother up, risk her getting fractures getting her into a car to go to the doctor. The doctor or nurse practitioner comes to her. At the first sign that there was some skin breakdown, a special cushion was ordered and a wound specialist comes in to see her weekly.
There is simply no question in my mind that my mother is getting much better care in a facility than she would at home.
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I had an aunt who had very specific opinions on how I should be caring for my mom. I told her that if she thought she could do better then she was welcome to come on over and try. She didn't and began keeping her opinions to herself for the most part.

You said there are so many things to consider. Why don't you and sister discuss those things? Is more help needed? Can you hire someone around the clock to give your sister some peace? However, since your sister lives with your mom she will still be involved and I'm not sure it will help her stress having someone in the house 24/7. I would imagine that she would still feel obligated to help even if there's around the clock care.

Once you've discussed ways to keep mom in her home if you come to the conclusion that it's not possible then it's time for the nursing home discussion. The nursing home discussion should include your sister and your mom, then you. Family guilt has no place in the discussion. Your sister can't continue caring for your mom when she is so overwhelmed because of family guilt. This is YOUR mom. Only you and your sister are to make any final decisions.

Let us know how it goes.
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