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A series of health problems have left Mom with short term memory loss and behavioral delusions and aphasia. However, she can still communicate her feelings to me. She was living independently until last June. She has always been somewhat reclusive and hates having people around her and touching her and telling her what to do. She has been placed in a long term care facility and just hates it. Every phone call ends up with her wanting me to get her out of there and take her home where she can be alone, to die on her own terms. The facts are, she can't live alone and now her home has been sold.

My phone calls seems to upset her and I was wondering if I should call less or not at all. I usually call twice a week. I have an elder care nurse who visits regularly and reports to me. The staff all tell me Mom seems pleasant, somewhat depressed and confused. She will not participate in any activities.

My husband and I are planning a trip in few weeks and I fear that seeing her will create a whole new set of problems. She might think I am coming to take her out of the NH. What should I do? Mom cannot travel long distances. She is being given low doses of an antidepressant. I thought I saw a change for the better for a week or so, but now she is back to her complaining and crying.

Thanks for your suggestions. This website is a wonderful place for advice and support.

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In for a penny… If you're still thinking in terms of moving her to a nursing home near you, it can be done. Ask a logistics company for advice - after all, "if it absolutely, positively, has to be there…"?! Ask the airline, or Holiday Inn, or what about train companies? Ask both nursing homes, the one she's leaving and the one you'd like to move her to: this won't be unprecedented, they'll know what works and what doesn't. It might seem like a heck of a project, but why not see what you can pull together?

My great aunt moved from Edgware in England to an ALF in Mass. in her mid-eighties to be near her daughter; and the reason she had to was that she'd become too frail to live alone in the house she'd been in all her married life. How she and her daughter got it all done I will never know, but done it was. Good luck!
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Joyce, I would meet or arrange a call with your moms care team and talk about your concerns and mom. They can give you an unbiased and candid opinion on her emotional state and whether she quickly recovers and participates with others or is truly unhappy. If it is the latter, you might visit some similar care facilities near you and check for comparable costs. Then reconsider if you want to move her closer for your peace of mind and if this is a possibility. I think you will have to do by car or rail. Know that another move can still be traumatic for her and may not solve her happiness -- you would be doing this to relieve some of your stress and worry and there is nothing wrong with that.

My mom sounds exactly like your mom and my long distance situation. My mom has refused all in home care assistance and to consider any move. Talking to her by phone is hit or miss. Visiting her is painful as the dementia makes her paranoid, accusatory, etc. ; lately she refuses my visits and locks me out or tells me if I come she won't let me in and she's not up to it.

I know from this site that taking her into my home even if she would consider is out of the question because I work full time in a travel job and will not quit to care for her. Further, I don't have the caregiving skills she will need as her dementia progresses.

You will have to decide what is best for you. I would go ahead and visit and steel yourself for the emotional tug that will likely occur. Stay strong and enlist the care team and director when you need to help you reconcile your feelings about moms care. If you can, visit and participate in the dinners in the dining room, activities, walks and sitting on the porch, etc. certainly you can take her off premises to shop or for lunch or visiting one of her old friends but I would steer clear of going by the old house or keeping her occupied outside the facility too much as it might seem like a punishment when you leave and she has to resettle in her home and routine. Encourage her to show you around, meet the staff, have mom give you a tour and try to make it a positive experience there.

Good luck and let us know how it turns out. Your experience god or bad helps us all as we navigate the same problems.
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My father has Alzheimers and other medical problems. He sleeps a lot, isn't eating much, and has abusive verbal outbursts. He lives with my mother at home in Fl. There are 2 home health aides that come in, plus a visiting nurse. Dad is kind of in and out of being cognizant, and has some paranoia. My mother has a variety of health issues herself, and does not want to keep dad at home. I know he will fight this, but it is what she wants to do. She is pretty close to falling apart herself. Previous to this, he was shuffled between a hospital and rehab nursing homes for the past 5 months. At this point, does she have to have his consent to have him placed in a nursing home ? I am in NJ and she is in Fl, and she is on the phone with me in tears all the time. I don't know what to do anymore. Should mom move elsewhere nearby (they live in a trailer park) and leave dad at home with the caregivers? Should dad be put in a nursing home ?? I need help, and soon.
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I know it's hard to seperate emotions when you speak with your Mom. I would suggest, keeping the call as short as possible, when it starts to head south, tell her "oh, I need to leave for an appointment" or something simple to end the conversation. More short calls are better than long crying ones.
My husband and I live with my MIL and when people call and she starts crying with them, I want to grab the phone and tell them "make it short and sweet". I don't know if my MIL knows what she is doing but sometimes I think she's trying to push buttons and make others feel sorry for her that she is in a terrible living situation and so unhappy. I have tried to tell her that circumstances have put us where we are and we have to learn to live together. Or in your case apart! But ......speaking logically to a dementia person is like beating your head against a wall. I can only hope that in time your Mom adjust to her surroundings, I pray my MIL will get used to us. I have jokingly started calling her "Greta" to some of my friends, they only get it if they like old movies, "I vant to be alone". Seems to be a state the elderly get into and is very hard to adjust too. Good Luck, remember short and sweet and call often.
PS Just noticed this posting is a little dated, hope everything is working out.
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Just a thought here I know people can deteriorate with a move but thats usually due to depression being put in a nursing home, not a real home. My Dr said my Mom wouldnt ever walk after her broken leg, but I brought her home and she did. He said she wouldnt survive her strokes, but she did. being Home is everything. He then admitted it was because when their spirit is happy, they heal, but not when they are depressed usually. I hope to god my kids dont ever leave me in a home, I rather all my money go to home care for my husband or I . I do kwow my kids wouldnt ever leave me thou, they have been so proud of me taking care of my mom thru thick and thin. I hope your poor mom home or at least closer and has visits daily. It doesnt matter if anyone remembers anything or anyone, dementia patients live in the MOMENT and they need lots of love...
"They are sad and sick and lost and need you at all cost, they dont understand but need you there to kiss their check and hold their hand. The best of them is gone, but need someone beside them until their life is done." author unknown
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I can see your problem. We have dealt with many issues with my MIL that actually surprised us, deeply imbedded fears seem to surface when dementia sets in. My thought was that she probably would not "miss" the east coast if she doesn't really gain anything by being there. My MIL did have friends who she missed greatly, but some of those friends urged us to move her because they couldn't really car for her & they could see she wasn't caring for herself very well.
Sometimes people decline very quickly when they are moved, so it's a tough call. You know her best and know if she can tolerate that much change in her routine. There are medications that could help with the short-term anxiety ( actual transportation time) if you think she would benefit in the long run.
The staff at the Assisted Living where my MIL now lives gave us a book, "Talking to Alzheimer's", which is about how to visit with people with dementia. It gives practical advice, i.e., how to phrase questions so they don't sound like you're quizzing them, etc. Many of the tips in there could be applied to phone call conversations as well. I found it very helpful.
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Dear caregiverinCT, In my heart everything would be better if Mom were closer. Living on opposite coasts is the pits. I am intrigued about this bus service. Mom would probably get quite panicky traveling. I have seen her have anxiety attacks over less. To answer your question, she never goes out. She refuses to participate in any activities. She has no friends or relatives who visit. I am her only child. I call her at least twice a week. I tried to call more often, but the conversations were usually either quite negative or sad. The elder care nurse sees her twice a month and is very good with her. Even when she lived at home alone independently, no one had ever been inside her home. She would only talk to people outside. Her house was always clean. She has never liked being around people and it got worse as she aged, choosing to isolate herself. She always used my Dad as an excuse not to entertain, saying she had to take care of him. She seems afraid of everything. On the other side of the coin, she can be truly personable talking with people and used to be quite funny. It sure is hard to watch what this "dementia" disease has done to her. Thanks for your input. jw
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I know you are asking about interacting on the phone & visiting,etc., but it would be easier if she was closer. Does she go out much? Have contacts with old friends who visit? If she is not gaining anything different from her present area, it would make sense to move her. We moved my MIL 400 miles to live with us, even tho she was afraid to do so. SHe lived with us for 4 yrs., moved to AL this month. I know there exists a bus/ambulance service which will transport people anywhere in the US. Not cheap, but they have 24hr travel option with more than 1 driver on board, so someone can sleep while the other one drives. A friend used it to bring her husband home across country.
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Dear JRW,
I feel your pain. It is very hard to have your parent cry. Blame & guilt accompany these feelings and it is quite natural to want to not call because it distresses her. (& you) This is a part of the equation that can't be solved. When you visit, step up the calls before to tell her how excited you will be to see her on ________ (day of the week). Explain it is going to be a great visit and plan an outing or two for her with you guys. She will probably think you are coming to get her out but that can't be helped. What she means by this is that she wishes you were coming to take her away from this place.
Regarding the "better for a week" sounds very familiar. Unfortunately their acting kills can only last for so long. I can't tell you it will get better with time. It doesn't. The best you can hope for is her acceptance of the situation. She will not be happier anywhere other than her home. This is a fact. A facility is still a facility, no matter how expensive & dressed up it is. It's not home. My psychologist said "You can't have a rational discussion with someone who is irrational." You just have to keep plugging and deal with the situation of 'it is what it is' for her and you. It won't get better. This is a chapter left out of 'The Manual' of caring for old people and certainly left out of Tom Brokaw's book 'The Greatest Generation'. My prayers are with you. It is not easy.
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Echoing what others have said about no one answer fits all situations. One thought did occur to me that I didn't see addressed, though I didn't read all the words of all the posts. Your mom's crying may be a good release for her. She may feel safe crying with you. I am super emotional, and sometimes folks will say, "Oh, I'm sorry. I shouldn't have brought that up." But no, actually, I needed to cry, so it was good they asked a question that allowed me to take my "all is well" mask off. Maybe your mom sometimes needs to cry, and you're a safe outlet for her. I know that's rough for you, and you have to draw your own boundaries on that part. Anyway, sounds like you have found the input you wanted. Lay aside any judgmental responses you received (personally, I don't feel safe expressing myself on this board.) Best of luck. Peace to you.
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A couple years ago, it was decided my father and his wife (with ALZ) could not remain in their Leisure type world apartment as my older brother was moving to Mexico and they would have no family around. My younger brother moved them from Virginia to St. Louis to an ALF. He brought them there by train.
That may be an option to look in to.

Little Bro oversaw the care of my father for 2 years until his passing last November. My step-mother is being relocated by her son to a faciity in North Carolina. (My 84 year old mother lives with me.)

It is very hard seeing our parents age - losing control of their bodies and senses. But, even harder for them - depressing & frightful.

Good Luck!!
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I just want to thank those of you who have responded to my question. You have all been very helpful and given me lots of options to think about. I called Mom today and will continue to do so. I will let everyone know how our visits go next month. Hugs to all.
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yes please keep calling her. it still keeps her happy to hear from you even tho she misses you
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It sounds to me like you're might be trying to wiggle out of having to call your mom. Of course you should continue to call. Perhaps what is needed is for you to figure out what sets off the crying. What's her overall state of health-- is she ill, suffering from dementia or perhaps very frail? Do you and she fight in these phone calls? Is she longing for something that's unrealistic, such as you moving back home? Is she depressed? Is she living alone and isolated? Is she in a care facility with plenty of people around her? How often do you visit? How often do you call? Tracking the answers to these questions may help you come up with a plan for her that will allow for phone calls that don't end with her in tears and you wanting not to call again.
Joanne
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JRW,
Everyone's situation is SO completely different; there are no "one size fits all" solutions. What works great for one may not at all for another. And unfortuately, as Dr. Laura would put it, "some things just can't be fixed, only endured."

It really sounds like you have explored all kinds of options and solutions and your heart aches. Be careful to not lose yourself in all of this, because if you do, you will have nothing to give to your mom. I agree with Lilliput's comment: "The second part is that no one can live our life for us or make things better if we do not participate in our own happiness. I know this because I have been w trying to make things "perfect" for Mom for three years now. In return, all I have gotten are more "to do lists."
I too am an only child, looking after a challenging dad with HUGE medical problems and who has no other family or friends. He has ALWAYS been what I call a "self-imposed hermit." I try so hard to make him happy and become very sad when I cannot. It IS very difficult. I try to point out all of the positive things that are going on but sometimes people don't want to hear that. It takes more work and effort and it is easier to just be negative. Fortunately, he does live close so distance is not an issue.

If you try and uproot her and force her into something she herself clearly does not want, you may find the situation escalate to a whole new level that you couldn't have anticipated. She clearly does not want to interfere with your life, as she was uncomfortable when you lived with her for 3 months. There is a real trick to "honoring your mother and father." Sometimes there are no clear answers.

Perhaps her feelings will change with time and you can keep on encouraging her to allow you to move her closer to you. Continuing to say "how great it would be if we all lived closer" might start to have an effect on her, especially if it can be viewed as a solution when she has her fits. I understand the actual move will be a challenge and for that I wouldn't know what to do. Even a cross country drive is not perfect as sitting for as little as 2 hours can set up a clot. I feel for you.

Try not to feel guilty. Again, quoting Dr. Laura, guilt is a feeling we get when we have done something wrong. Clearly, you have your mother's best interests at heart. You can feel sad, but it shouldn't be guilt. I too struggle with this.

Hang in there and keep us posted.
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You will learn more about how she feels by watching her facial expressions and her body language (if you aren't there, most likely someone will deliver it to her and they can give you feed back).

I'm sorry but asking her if a card makes her happy or sad seems questionable, she may not remember even seeing the card. Most likely she will nod "yes".

If you visit give her different items and YOU watch and observe.

It appears whenever there is an issue, we blow it out of proportion, put it under a microscope and it gets worse.

KEEP IT SIMPLE
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It's pretty clear you've thought hard about the decisions you've made. Your original question wasn't about your mom's living arrangements, it was about how to handle contact in such a way that it's a good thing, not a source of new upset. Right? So let's get back to that. Something I'm learning is, how to think differently about the situation where there's memory failure vs. the situation where there's not. If the person doesn't remember something key, like that their spouse died for example, then it's upsetting to them to insist on the truth, because they keep getting awful "news" as if for the first time. And you can't really negotiate with them. But if your mom is not demented/incapable of remembering, then you can still have honest and adult interactions based on the truth. And you can ask HER for help with your decision: "I want to see you and talk to you but I know it also brings up painful things. What should I do? If I visit you it won't be to take you home, is that worse or better than my visiting you? What if anything can I do for you? Do you like it when I send cards or does that upset you more?"
Another thing is, the clearer you are within yourself about WHY you are visiting her or calling her, the easier (or at least the less difficult!) it will be for you to handle her sadness. So for example: If you are visiting her to try to make her happy, then you've succeeded in that goal if she's happy and failed at that goal if she's sad. That sense of failure adds to your own unhappiness at the situation. AND it makes you question your own behavior even when it's got good motivations and you're doing a good job. If you're visiting her to check on the situation and see for yourself how she is, then you've succeeded at your goal whether she's happy or sad. And you'll be just one little bit more able to stay centered, yourself, which will make you more effective at handling the situation -- including better able to keep her from getting upset. It's ironic but true that you will be able to keep her happier if you're not as triggered, yourself, when she's unhappy. This stuff is so, so hard! Good luck.
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Oh I hope you do, how about short driving trips and sleeping over at hotels along with way. I bet she will come home with you now that she has had a taste of a nursing home. My Mom wanted to go to her own house too, cried in rehab and every day said "are you going to take me home?" I finally said after a week "you bet I am, but its to my house because I cant leave my family for now" she cried hysterical happy tears and home we went. By the time she recovered, she thought our home was hers, and here she stays. We have SO much fun , family time, tears too, but we spoil her as best as we can. I have daycare, caretakers, and still hold a job. Its hard but she was always there for us, and she would always be if she could. Its a huge undertaking, but so is rearing children, so well worth it!!!
Prayers for you and your Mom!
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I truly would love to bring Mom home to live with me or at least near me. We live across the country from one another (about 3000 miles apart). Her choice. After Dad passed away in 2006 I talked till I was blue in the face to try and get her to consider moving. She didn't want to or was too scared. Her dementia/short term memory loss began manifesting itself after Dad passed. Caring for him was her last responsible job and she did it with perfection. After that I couldn't get her to look forward to anything new. Mind you she disliked the man, but felt it was her duty.

I don't know how I could even begin an undertaking of this magnitude. She has a lot of health issues. An all day plane ride with her history of blood clots would be unadvisable. In an automobile, driving would be almost as bad and would take us weeks, not to mention the expense. My husband and I aren't getting any younger either. I even thought of renting or buying a motor home but financially that is out of the question. I chose to live closer to my children when we retired. We all live on the West coast. Mom and Dad chose to live on the East coast. Now we are stuck in this terrible situation. If only money were no object or I had a magic wand, I would charter a plane and whisk her off to be closer to me.

I even contemplated living with her in her home before she went into the nursing home. I spent about 3 months with her. That made her very uncomfortable. She felt she was taking me away from my husband. He never complained and is totally supportive.

In a perfect world I would love to do what you suggest. Yes, it is sad. I often fanticize about how wonderful it would be to have Mom close to me. She has never seen her great grand kids. Thanks for responding.
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goodMorning JRW... I'm sure the calls are difficult for you especially when she starts crying.

You might try sending her a cheerful, fun card or small gift once a week. Patients love getting mail and this would be less stressful for both of you.

Great Memory Card Games and Memory Jogging Puzzles online that will ship in your name.
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JRW,
Oh my goodness! The only thing I have to offer is this - My Mom lives in assisted living with Alz and other medical issues for 2 years now in Pittsburgh - I'm 350 miles away in Jersey. She did not want to move here because of my brother and his kids and I understood, although being her daughter, I really wanted her to be near me. I try to get home (Pgh) often to see her but the longest stretch is always the winter months. When I do see her we both realize how much we miss each other - and frankly, her more than me as she needs me more now. If I could, I would move her here close to me whether she agreed to or not because it would be the best thing for HER. She hardly leaves the facility anyway, so she really has no connection to Pittsburgh and when I do take her out she doesn't recognize much - so what difference does it make. But, she has my brother and that's the way it went. It's family, family, family. If you are the only child, my advice is to do what it takes to bring your Mom close to you so you can better care for her. She will feel so much more secure knowing you are close by and stopping in to see her on a regular basis, bringing her what she needs. Tough times, tougher decisions.
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Cant you bring her home, this is so sad :(
Dont ever ignore her by calling or visiting less. How would you feel if you were already confused and scared, and in a strange place, I agree with Lilliput, "theres no place like home" and our parents were there for us, we must be there for them. She is continent and in early stages, my Mom is home and incontinent, needs help with everything but we spoil her rotten with family time, laughs and singing. I hope you can reconsider.
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Thanks so much for your reply. During her recovery from the first brain hemorrhage and blood clot, when she was well enough, we explored the option of assisted living. Went so far as to pick out her apartment, paid for everything and started to pack up her house. It tried to take it as slow as time would allow, but when it got down to the wire, she went into a terrible "funk", got extremely anxious and backed out of the move. She paniced at the thought of getting lost, eating in a dining room full of people, etc. etc. With each fear she was reassured that she would have someone to help her get used to the place and she could eat in her room. She would even get angry when a caregiver or nurse would come to the house to assist us while I was there.

As I mentioned, Mom hates people being around her, touching her, watching her or telling her what to do. There could be some deep physcological issues underneath it all and I know as we age, these problem can get worse. So moving her somewhere has been out of the question and moving her back into her old house is no longer an option, since it has been sold.

I haven't seen her since October so I don't know how much she has physicall deteriorated since then. I know she has lost about 11 lbs. She walks with the aide of a cane and or a walker, can take care of her personal needs. Refuses to let anyone help her bathe as she feels that are getting a thrill looking at her body. It embarrasses her to no end and I realize that is part of her dementia and delusions.

There is also the cost factor. We have applied for government assistance in the form of medicade and/or VA since she is the widow of a verteran. This nursing home accepts this type of payment. I thought private care in the home or most full time caregivers in the home are not covered in this manner. Mom would need 24 hrs care and I think if left to her own devises she would fire anyone that was hired to come in and care for her. Because of her aphasia, she would have a difficult time explaining what she wanted or how she felt. I did say she can seem to communicate with me, but Mom and I were always close and I kind of know what she wants without her even having to say anything.

After Dad passed in 2006, I wanted so much for Mom to move closer to me. My husband and I would have been able to it all for her. She kept refusing. I know you understand when I say I talked myself blue in the face to get her to move. She was too afraid of change to agree even then. In 2008 I started the process of helping her with her finances. She has always been independent and controlling (not in a terribly negative way) of her own life. She feels she has lived a full life and it is time to go. However, her body is remaining strong and her mind is going and the loss of control is very difficult. I know that she knows this is happening.

Well I have rambled on long enough. Thanks for your suggestions. I do so much want to see her, but don't want her to be upset. I realize I have no control over her emotions, but don't want her to have a complete melt down when she sees us. I know she is going to ask questions that I will not be able to answer honestly.

I will most likely still call her. I had to almost hang up on her the last time we spoke, because I couldn't redirect our conversation. I don't like doing that, cause then we both have a bad feeling. She may forget (sometimes I think she remembers the negative interactions more than the positive ones) but I don't and then I am sad. I said I was going to end this note, now I am. Thanks all for your thoughts.
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Before your visit, you need to decide how far you want to go, if at all, in making changes to her living environment. If she is unable to live with you or near you, you need to avoid any conversations about you removing her from her present home. Try to impress on her that you are coming for a visit and will have to go back home afterward.
I have been going through something similar with my Mom. When she gets these irrational things in her head there is NOTHING that will change her mind. (My Mom does not have Alz. but it is no easier)
No institution will be like home...that stands to reason. However, how we all approach our living situation will make a big difference in our success. The second part is that no one can live our life for us or make things better if we do not participate in our own happiness. I know this because I have been w trying to make things "perfect" for Mom for three years now. In return, all I have gotten are more "to do lists."
Btw, is your Mom physically healthy enough to live in a senior apartment with a live-in caretaker? If she does not need a lot of medical care, this may be an option. There are in-home caregivers who specialize in cognitive care. That way your Mom is in her own space, but has the caregiver there to ease your mind. The caregiver can also take her to doctor's appts., etc.
good luck
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