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It's been 11 months for my mom. She is still unhappy and very negative, but I see that the clique of residents that she had gravitated toward are the ones who are bitter and complain about everything and fill her with misinformation, such as she is not allowed to have a toaster in her apartment, not allowed to eat in the dining room in the other building on the property, etc. All not true. Wish she would associate with some of the many kind, cheerful, interesting residents. But there's no drama there!
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It took my mother several months to get used to AL. Ironically the big shift in attitude came when she was hospitalized for a week. When she returned, everyone made a big fuss over her, staff and her lunch partners. She felt special. At her house, it would have been just me crabby and stressed getting her home, spending one or two nights. Then she'd be alone except the daily aide who was always someone new.
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Hi I am in the same shoes than any of the persons,who cared for their loved ones at home for several years.Unfortunatly I had to place my husband of 50 years of married life into a old age home facility.He has Lewy body Dementia for at least 3-4 years I have tried my best to take care of him at home,but it was beginning to effect my health.I had to do the unthinkable place him into a home.He was the most vibrant person during his whole healthy 75 years! Very productive highly intelligent person. Now I do my best to stay by his side(visit him every day,bring him home once a week to have an afternoon with us(his family)make him his favorite dishes.Even if the nurses don't care about my interference sometime I put him to bed,take him for walks,because he is in his wheelchair mostly during the days.So try to make the loved ones care for even if they are have to be in an institution.
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Donnahay, Expert Carol is exactly correct. I would add that when Mom was in a nursing home recovering from a bunch of issues about 3500 miles away from me, I hired a geriatric nurse case manager to go in as needed to check on her. She was my eyes and ears on site. She was a *huge* help. She spotted when Mom was moved to a less desirable room, when the care was not just ship-shape and when therapy was being slacked-off. She negotiated with the administrative nurse at a professional level. She knew the ropes. If it weren't for her, I don't know that Mom would have lived through the 3 months she had to be there. I don't know how you find a good one, but this one came recommended from a relative that lived in the area and used the company to look after his Mom. They catch stuff that you would not see even if you were there. Of course they cost plenty of money, but the peace of mind for me was worth it. I moved my Mom, but I can *not* recommend the experience.
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Willows and Linda, you are demonstrating the best of this forum - people do sometimes come across in a post differently than they intend, or they are having a bad day. Apologizing and forgiving is a wonderful way to go about setting things right.

komentaightor and Jennegibbs, as you both said, no two situations are the same. A person who never uses outside care in any form is not necessarily a better or worse caregiver than someone who does. Needs differ. Abilities differ. Most importantly, personalities differ - and that includes the care receiver as well as the caregiver.

Comparison shouldn't have anything to do with this since we are often comparing apples and oranges as the old saying goes. Support for the caregiver and the care receiver are what is needed and what, in most cases, come through here loud and clear. I'm so proud to be part of this group!
Carol
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To all new visitors to this forum - it is very educational to read through all these stories, and I so wish I had known about this Forum years ago, when I was first landed with being the official carer of a friend to whom I am in no way related, fellow exPat Brit whom I had known for 30 years. We were not even particularly close friends, but - she had no relatives in the country where we live, no useful relatives back in the UK, and her "boyfriend" of many decades' standing absolutely refused to take any responsibility whatsoever. I fought many battles with this boyfriend, and we have only come back to speaking terms since our mutual friend has been in a specialised nursing home for 2 years now.

The point I want to make is that EVERY CASE of looking after an Alzheimer's or dementia sufferer IS UNIQUE. The medical condition may be the same as hundreds of other sufferers, but the family condition is always different. Quite often the acrimonious debate among family members and friends can be as harmful and difficult to live with as caring for the sufferer over whom all the quarrels are about.
Non live-in carers are just as vulnerable as family carers to phone calls demanding them to drop everything in order to rush over to help a sufferer still living in their own home. I even got a call to take my friend home from hospital when I was on holdiday, 1000 road miles away! Of course I drove home through the night, arriving exhausted in the morning, only to learn that she had gone home by ambulance and the visiting nurses had already arranged extra day care for her. I was not needed.
Practically all carers have similar stories of extreme inconvenience. If they have not, they are extremely blessed and should thank all their lucky stars.

That is why there should be no judgement of others who post on this forum. There should be no criticism of the decision to place a relative in a nursing home or specialised residential care rather than take/keep them at home. Such decisions are agonising, often made worse by lack of available places or lack of finance to pay for them.

My one recommendation, strongly advised by the home where my Alz friend now resides: take away all cell phones and don't set up access to a fixed phone where they can call out. I protested at first, but later admitted it was a very wise recommendation.
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Thank you so much for understanding!!! :)
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Willows, it's all good. I too was having a tough day and your words hit a nerve. And it's funny because I read some of the stories here and marvel at the love and grace with which people are handling situations far worse than mine. We all have bad days, frustrated and angry with these miserable illnesses that are hurting our spouses. The beauty of this forum is we can vent freely, knowing these people truly get it.
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Linda, you are right; I was being judgmental, and I am sorry. I truly believe, in analyzing my situation, that I am far better off than you are. I don't know whether I could handle your burden. Please forgive me for running at the mouth. Having kind of a bad day today with hubby.
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Willows, I cared for my husband throughout his 10-year dementia journey. I told him and our 5 children that I would keep him at home as long as that was where he could get the best care. If we reached a point where I wasn't able to give him the best care, I would place him where professionals could, but I would continue to support him emotionally. Fortunately for us, he could stay at home for the full 10 years, and died in our bedroom, holding my hand.

But I have seen many -- most -- of the caregivers in my support group have to face the fact that they could no longer care for their spouse in their home. It was a wrenching decision but they made it in love. I am NOT a better person than any of them nor did/do any of them love their spouse less than I did. They were simply dealt a different hand.

My 93-yo mother has dementia. She is in a nursing home. I am absolutely amazed and how well she is doing there! I think I can say that objectively without "assuaging" any guilt, because I do not feel any guilt.

I send you warm hugs, Willows, as you deal with your spouse's dementia. I know how heartbreaking that can be. But along with Linda22 (and I expect many of our forum participants), I'm really tired of people judging without being in the other guy's shoes -- or even stubbornly insisting that one shoe size fits all.

I hope you are able to fulfill your own commitment. Please don't judge others.
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willows, I’m so sorry - I cannot fathom what it's like for you or anyone else to have your spouse stricken with dementia. My dad had Alz, but having your spouse have dementia involves so much more on so many levels. Your comments hit a nerve with me because they struck me as being a bit judgmental. Many of us are not "wimping" out when our parents need care or "assuaging" our guilt about our parents being in AL or NH. We are making difficult decisions based on many factors because we have responsibilities to/for spouses, children, employers, not just to/for our parents. We are assessing what we realistically can do. Some of have juggled raising our children while also caring for our parents and working fulltime jobs. Add to that that some of our parents have made caring for them quite difficult, with demanding personalities and also refusing needed medical care. Our parents were young and healthy when they "put up with us". We are aging and have our own health problems which often make caring for a parent 24/7 difficult or not possible. And some of us are helping more than one elderly parent. Many of us do not have the luxury of quitting our jobs to provide 24/7 care for our parents. I have a demanding fulltime job, my husband is in the early stages of PD and we help my FIL remain in his home – I cannot physically also care for my mom, who needs 24/7 care. If I sound a bit strident, it’s because I’m really tired of people judging without being in the other guy’s shoes. Because sometimes when you get into those shoes, you end up having to take an action you’d never have dreamt you would, but it’s the best one at that time.
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My MIL would complain to distant relatives about the ALF to the point where they wanted her out of there. But when we visit, we see her happily engaged in social contact, activities, resident meetings. As for complaints being filed, she told us, the nearby relatives, not to file any complaints, she was afraid she would be "in trouble". So very possibly you are being played. It's her little ploy to make you jump up and run to her side. Don't buy it.
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She needs more time to adjust -ask her what is her biggest complaint and try to fix it if possible some things he will have to live with-any thing you fix will b replaced with another complaint.
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I am amazed and saddened by how so many look upon their parents when they get dementia and need our help, our understanding and our love. They put up with an awful lot from us when we were growing up, often way into our late teens or early twenties. Why is it that children, then, wimp out when the parents need us to put up with them? We try to assuage our guilt by attempting to convince ourselves that this, that, or the other nursing home is good and they are getting fine care, but the majority of these places are less than adequate and do not meet the EMOTIONAL needs of the parents who raised us. I read some of these letters and feel so sad. My husband has dementia, and I would not dream of moving him out of his home that he loves so much. He will die in his home, not in a nursing home; not on your life!
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My mother has been the same way. We have explored several other places, but came to the realization that no place would make her happy. She would like to live with me and have me personally meet her every need, but because she is a constant complainer, nothing ever right, and very, malignant narcissitic person, my whole house would be unhappy. Plus, I would have to move my 94 year old father in too. It would be too much. My advice.... if her needs are met, the place is clean, and you have a good relationship with the staff, leave you mother where she's at. A move would make things worse. Save yourself inorder to help her.
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It is a hard decision to make, but sometimes the only alternative is placing a parent in assisted living or nursing home. And it will take time to adjust. As long as they are not mistreating her there, give her a few months. It took my dad about 6 months to settle in. They had to switch roommates a few times also. It is a big change for them (and you) if they are confused to begin with, moving them to another place will just add to the confusion. THey will get used to the routine there and interact with others that live there eventually. The staff knows how to handle this. I found that going several times a week in the beginning to make him more comfortable helped. I have tapered my visits to once to twice a week for about an hour at a time. Your mom will be happy to see you again when you visit. Just be patient and give it time, you will all be better off emotionally and mentally in the end.
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Billy-for your own piece of mind could you visit less often-that way it would not be as stressful for you-it may take a long time for her to accept being there-it should lessen in time.
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Give the staff additional information about your mother it allows them to redirect in areas that are familiar to her. Ask the Activities Director to engage her in the activities of the day, if she is not interested in any of them, it allows an opportune time to get her involved and vested.
2 weeks is not long enough, she's home sick for her past.

I hope it helps, it works wonder at my AL community.
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My mum has recently been sent to an assisted living facility especially for people with dementia. At first we had to tell her that she was being sent there for convalescence since she had a heartattack about six weeks ago, it seemed a good way to 'get her there; but now shes beginnig to ask how long she has to stay there and she thought this was only temporary. Every time i leave she asks me whats happening with her now and will i be back to pick her up, today she asked me this and i said no that she was stayin there and then she said that she had no stuff with her , like a night dress and the like and that she had nowhere to sleep, we had just come out of her room about five mins before that !!! I know its only been four weeks and the care workers have assured us that she will settle in and that nearly everyone that comes there asks these questions of their loved ones when the visit.....
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Wow, Gayle, that is a heavy load for you and your mom, especially emotionally.

It certainly does sound like dementia. I know that you are associating this with the move into AL, but please understand that if mental deterioration is going to occur, it is going to occur whereever the patient is. A change in surroundings may trigger more noticeable acting out, but it doesn't cause the underlying pathology. In other words, this is not your fault for moving Auntie.

It is possible that she is at a point where assisted living is not sufficient. You made an appointment with a doctor and I hope you can get her to keep it. Alert the doctor ahead of time of what the real issues are. Perhaps this visit could be a springboard to having her evaluated.Talk to that doctor. Talk to the AL visiting doctor. Talk to the AL staff. Perhaps your aunt needs more direct care and supervision than an AL is set up to provide.

Meanwhile, save your sanity! Set some boundaries. Do not accept 40 calls a day. Set some times for calls, and screen the calls the rest of the day. Don't answer hers. Tell her that outside of the "family call" times, she needs to call the AL staff, and if it is an emergency they will call you. She can call you at work only between 11 and noon; the rest of the day you have meetings and conferences and your boss does not like people to take many personal calls during the day. She can also call you at home between 7 and 8. (Obviously you can set whatever times you like.) And she may call her sister between 2 and 4. That's it. All the rest of the day you both will only accept emergency calls from the AL staff. Alternately, you can schedule times when each of you will call her. Accept no calls from her. This maybe sounds tough, but your mental health is just as valuable as hers. Take care of it!

I hope you are not actually delivering her meals three times a day!

Love this poor woman. Reassure her that she is safe. If possible get some medical evaluation and possible treatment of symptoms. Advocate for her. Determine if some other setting would be more appropriate for her. But set boundaries to protect your mother and your own mental health.

Best of luck with these difficult tasks.
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may I also mention that she is experiencing disturbing signs of dementia...Auntie seems to think there are meters in her bedroom walls that keep her awake at night....she calls mom and i no less than 40-50 times every day with various complaints...she called me at work at 7 am and said she found a lump in her vagina and needed help...so that is when i made an appointment with a dr. now she says she doesn't need a dr. and took care of the lump by poking it with a needle!!!! really? I am afraid for her health and she refuses to let us help her....what am I to do...she doesn't have anyone besides me and mom....
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I have a 94 year old fairly healthy (physicaly) aunt that we just had placed in an assisted living facility about 4 miles from us and her sister (my mom). She has been here about 8 months now and has failed to adjust. She refuses to eat in the dining room and want us to come to go get her meals for her. I work 60 hours a week and Mom is 86 now and has all she can handle to care for herself. Mom and I have been taking turns delivering items she needs/wants even though she is provided three meals a day and daily housekeeping and weekly laundry service. She refuses to allow the housekeeping to change her sheets or help her with showers (that I paid for) She refuses to leave the apartment for dentist appointments (her front crown fell out) or to visit a doctor to establish a primary care physician in this area in case she needs one. She does see the house doctor once a month as she comes to the building, but what would she do if she became ill..that doctor would not be available locally. She doesn't take her meds properly and refuses patient services help in any matter. HELP!!!!!!
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Hmmm ... so if she calls a family meeting and all of you participate in person or by speaker phone, the outcome is likely to be that each person will explain why it is not possible to take Mom in. Then what? Will that bring some closure to the subject, and encourage her to make the best of where she is?

If the meeting quickly established that living with one of her relatives is not possible, could it move on to what her specific complaints are about where she is? Then you could agree to look into them and work on ways to make some of them better. You want her to know that you love her and are not abandoning her, even though you cannot give her what she thinks she wants regarding where she lives.

You may also talk among yourselves ahead of time, and accept the likelihood that, given her negative attitude, she is not likely to accept reality graciously. Plan how you will handle that, and remain upbeat, loving, supportive, and with your boundaries intact.

Good luck!
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MIL is in AL. she is very hard of hearing but other than that she is relatively healthy.
She however, does have a very negative attitude.
We all work, there is no way she could move into one of our homes. Our house is not equipped. She has issues with lfting her legs.
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Jojosmeem, is your MIL in AL or a nursing home or ...? Is there anyone in the family able/willing/tempermentally suited to taking her in? Just because that is what she thinks she wants doesn't mean it is practical/possible.

If it were settled that where she is is going to be her home, is it possible that she'd go about adjusting to it? What kind of impairments does MIL have? What is the AL's view of how well she is adjusting?
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Well, it's been 3 months now for my MIL and no improvement.
She wants out of there...NOW!!! Wants a family meeting to see which one will take her in.
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I really like the idea of a note from the doctor!

Many people with dementia constantly want to go home. My husband did, in spite of the fact he was at home, living where we'd lived more than a dozen years, with me, sleeping in the same room, eating at the same table, etc. etc.

There is no guarantee that even if you could arrange for your parent to "go home" again that that would solve the problem.
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My mom did/does the same thing. She thinks she is "spending the night" at my house. When she says she's ready to go home I tell her "Mom, you are home, you live here now". Sometimes this upsets her, sometimes she is grateful. When we first started this journey it was really bad! I had her doctor write a note that simply says "It is unsafe for you to live alone. You need the help of another for your safety. Thank you and God bless you" and the doctor signed it. When my mom gets unreasonable about going home, I show her the note. This really seemed to help, and this way it wasn't something I was doing to her, it was doctors orders!
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My mom is 93 and healthy physically. But a stroke 5 years ago took away her short term memory. She was living alone in a small WV town 500 miles away from me. We finally convinced her to move her to a beautiful assisted living facility near my home. She has a one bedroom apt...she even brought her piano which she plays every day. HOWEVER.....all she has on her mind is "going home". We are in a support group. We have tried redirecting her conversation without any success. She is fixated on going home. She thinks she has only been here a few days when she has been here 18 months. The facility does a great job trying to get her involved in activities. But she is focused on going home to the house she lived in all of her married life. Her memory issues are severe. At one time she was calling us 30-40 times a month wanting to go home. I took her phone out at the end of last year and since then she has written me a 150 letters telling me she has enjoyed her vacation ? ....but she is ready to go home now...whenever I can take her. We have tried to go over WHY she cannot continue to live alone that far away from family.....but she FORGETS our conversation within hours . So we are exhausted...frustrated....and hope someone who has dealt with this can share some ideas. She is not a mean person and is very kind.....just wants to go home. Cannot reason that she would have no way to get to the store, pharmacy,bank, doctor, etc.....just wants to go home. We have her to our house for family get-togethers and she burdens everyone with the going home questions. Impossible to redirect her at times. Her long term memory is fine.......but her short term is basically gone. If we visit her on Monday she will tell folks on Tuesday she hasn't seen us in weeks. She just doesn't remember us being there.
Help........from Atlanta, GA
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I was faced with this very same situation last January. My 79 year old mother was extremely unhappy in her senior apartment. She even threatened to jump off her balcony. She was making everyone who came to visit unhappy, even the staff was concerned. After one month I decided to move my mother into my home. The decision was tough on my family. My husband supports me but it has put a tremendous strain on our relationship. My daughters went off to college thinking their grandma is a total "nut". Now, after 9 months of living her she still thinks she is just spending the night. She has no memory of living in the senior apartment. She asks us the same questions over and over, like 100 times a day. Its a very difficult situation and you should consider every other option before moving her. In retrospect I wish I would have given it more time at the Senior Apartment. Hope this helps, I wish I had had this forum prior to making my decision! Take care!
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