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Old 06-05-2006, 11:41 AM   #1
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Is this normal??? Help please.

Does anyone else get this behavior? My mom, who has moderate - severe alzheimers, has one thought and one thought only - I want to go home, just give me a chance to prove myself. No matter how many times my sister and I try to change the subject she will always, immediately, go back to this one thought - she can not be diverted. The alzheimers org said this behavior was unusual - is that true? It's impossible to hold any kind of conversation because this is the only topic she will talk about. She even has someone at the assisted living house call us (she can not use the phone herself anymore) and when she gets on the phone she asks why we're late in picking her up to take her home like we promised. Or when are we coming to take her home. She doesn't stop.

We've tryed telling her that her house is being renovated, that we're painting her kitchen, etc. For every reason we come up with she has an answer - I'll help them paint, I don't need anyone, I can live alone, there's nothing wrong with me.

Recently mom has resorted to crying to try and convince us she is being mistreated and needs to go home. They're not feeding her. They make her sleep on the floor, they're mean to her. We can't bring the great grand kids around anymore because her crying upsets them and the youngest one is now afraid of her. This assisted living home is wonderful and mom has even gained much needed weight. Her clothes are always clean and when I arrive (different times, different days) someone is always nearby keeping an eye on her to make sure she is OK because she needs to be watched. She has also started to become quite mean toward my sister and I because we're not bringing her home.

When mom's friends visit her she tells them how nice the place is and how wonderful everyone is to her. We asked her friends if she ever asks them to take her home - she doesn't. When her friends take her out for lunch she always tells the people at the home when she returns that she's "so glad to be home again." Only my sister and I get this one train of thought - which sometimes makes us doubt just how bad her illness really is. We know that she needs assistance with everything - she doesn't even know that she takes medicine several times a day.

Has anyone else experienced a single minded parent like this? Does anyone have any suggestions?

 
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Old 06-05-2006, 01:40 PM   #2
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Re: Is this normal??? Help please.

Actually, if she is at an earlier stage she will be at the obsession stage where she WON'T forget something she's singled out and is obsessing with ...

but ....... on the bright side, she WILL forget, it's just a matter of when and how her disease progresses .... there's no time restraints with this disease, some have it come on them faster than others, but time WILL prevail .. I promise!

Mind you, the obsession to go home by then might be an inbuilt behaviour ..

Now .. that over and done with ......... there is something else to look at:

Many dementia patients want to "go home" because they are scared and unsure of what is happening to them, and the statement "go home" is them actually wanting to be safe and secure .. it doesn't actually have to be "home" so to speak .. does that make sense?

Make sure she hasn't got a urinary tract infection. Make sure she's warm at night (or cool .. depending on your season), has she got familiar objects around her? Is she being kept active enough or has she got time on her hands to be aware of her changing circumstances?

She obviously recognises you and your sister as something to do with her former life and relates that to home -- yes it's difficult -- sorry .. but you'll just have to be firm .. it IS cruel to be kind unfortunately but it's for the best.

And as a last resort .. you may need to seek medication to calm her down. She's going to use every trick in the book to make you feel guilty so she can get her own way ... DON'T give in unless you know she's being mis-treated, which from the sounds of things, she isn't.

I hope this helps a little ...

Big hugs
Sally

 
Old 06-05-2006, 06:44 PM   #3
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Re: Is this normal??? Help please.

alzannod,
My mom is exactly the same way. I have two brothers and she seldom mentions going home to them when they visit her, but that's the only thing she talks about to me.

My Mom is in a small home with only 10 patients. So they're like a small family. She really likes the place, and all the things she says about going home are almost like a recording. The same thing over and over.

She doesn't have a phone in her room, but they all have access to the "house" phone. And she calls me every single day to tell me that she is ready for me to pick her up and take her home.

She tells friends and relatives who visit that I dropped her off and never came back. Tells them I have never visited her there, despite the fact that I go to visit twice every single week.

As soon as I get home after a visit, she calls to ask if I'm coming to get her to take her home.

I know how you feel. It is so tiring and stressful to hear all the time. I asked her doc if there was a "med" that would help her calm down about going home, she already takes zoloft. He did up her dose but there's been no change and he said, often, they continue asking to go home for a long time. He said, usually, "home" to them is not necessarily where they use to live but a better time in their life. My Mom does talk about going home in reference to where she was nearly 5 years ago. She wants to do those things that she did then.

I haven't found any way to cope, either, other than agreeing with her on the phone and making excuses when I visit in person. She never remembers that she has ever phoned me.

Sometimes it seems that all we can do is just keep prodding along.

Take care of yourself!
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Old 06-06-2006, 06:56 AM   #4
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Re: Is this normal??? Help please.

thank you Sally and Sandy...your comments are very helpful!

We realize mom isn't really wanting to go home as much as wanting to feel safe again, to stop being confused all the time. According to her last series of tests mom is now at the moderate to severe stage of alzheimer's and although she has always made this statement it now seems she is a broken record about it and only to my sister and I. We thought it was bad before but now!!!!

I'm really relieved to know I'm not the only daughter going thru this. When the alzheimers org said her behavior was unusual that worried me. But then again mom always did follow her own path.

Mom is in a small place and gets individual attention. It's a very homey and warm environment. We've brought in photos and objects of hers so she has familiar things around her but she keeps throwing them out because they "are not mine". I'm now doing a family tree for her with pics of everyone. In my mind maybe it will help put some elements together - I doubt it but it makes me feel like I'm doing something. she doesn't read anymore and now has trouble focusing but maybe the faces will be familiar to her.

Mom is on quite a number of medication - alzheimers drugs, antidepressants, and stuff to calm her, so putting her on more medication is not an option. We've tryed taking her off some of the stuff but she reacted badly so her doctors put her back on.

I guess there is no magical answer we can give her. I tryed a different approach this past weekend. Everytime she said she wanted to go home I just hugged her and asked her to hug me back. It seemed a great way to avoid answering her and I got a hug and a small amount of time of distraction. There was an extra benefit - she would smile back, which she doesn't seem to do anymore. I had to do something to stop from yelling at her - its not her fault, and its so normal to get mad but we can't get mad at her or around her. Hugging seemed to calm me down and reassure her - win win situation. We'll see if this approach will continue to work.


Mom doesn't know who I am so when she sees me so I introduce myself. She knows my name and that the name is someone who can influence what happens to her.

It doesn't help that she tells her friends that her family just wants to get rid of her. The worst part is that her best friend doesn't think there is anything wrong with mom but a small memory problem. when we bring up other stuff her only comment is "well that's just her." Denial is universial I guess - it took over a year and many visits to different doctors to convince me. I just wanted to make sure.

thanks again.

 
Old 06-06-2006, 07:17 AM   #5
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Re: Is this normal??? Help please.

alzannod,

Just this week, I had a similar situation. Mom had been telling her best friend that I dumped her and never come back to visit. I just wanted rid of her. Though her friend never said it "outright," I could tell she was a little suspicious that some of it might be true. She would quiz me to see if I really had visited mom.

Previously, Mom lived in an adult park with many winter visitors. As they all begin to arrive for their summer visit, they have begun to visit mom, also. One of them visited this week and mom told her some awful stores about her "best fried." That she had promised to help her escape but never came back. Only saw her that once and never returned. Many other things.

This lady went straight back home and told the dear friend every thing mom had said about her. When she called me later, she had a whole new understanding of mom's situation and all the things mom had said about me.

Very very sad, for all concerned.

Sometimes I wonder if Mom doesn't know who I am, either. When she calls, it's the same mother-daughter relationship and she tells me all that she's telling other people. But, when I visit, she introduces me as her daughter but it seems more from habit. I don't think she has a concept of what daughter is any longer. And, it's like I have 2 relationships with her.

One, when I'm there she's friendly and kind and huggy, as though I'm just a visitor.
Two, when she calls, I'm her daughter and she curses and accuses me of not visiting her or taking care of her.

When I'm there in person, she never remembers that she's called me. And when she calls me, she never remembers that I've ever been to see her.

It's very strange. But, you're right. We just do what works at the time. Whatever helps them to adjust and causes the least amount of pain.

Take care
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Old 06-06-2006, 12:47 PM   #6
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Re: Is this normal??? Help please.

Geez!!! am I glad I came to this site today. Im currently at my desk at work and the NH where we have mom placed has called and asked me to try to settle her down. She has been pacing and insisting she was going to leave and go home for hours. I talked to her and told her I would be there when I get off at work at 4pm and she kept asking me on the phone was I coming to take her home so Im sure I will be in for the battle tonight. Im glad we are not alone in this although Im so sorry for anyone who has this terrible disease and children like me who feel so torn all the time.
Mom for the most part usually seems okay she like most is stuck in her past and constantly talks about going home to her Dad and brothers all of
whom are deceased long ago. She talks about our Dad as if he is gone out of town working and some days she just says he must not care about her b/c he
doesnt come and see her etc. (He died of cancer almost three years ago).
When we visit and I try to at least three times to four a week we sometimes laugh and have a good time and mostly we walk in the courtyard or through the halls etc. We watch tv and giggle and talk about her memories of old. I give her showers and lotion etc. Sometimes we do spa treatments and roll her hair and do our nails, my mom loves to fix up and she loves her jewelrey and cute clothes etc. but when she gets on that one subject of leaving and going home it never ends...... She has never begged us or cryed and made it terrible but just the constant persistance of conversation makes it awful. We try to distract her also with all sorts of things but nothing changes she cant stop saying it over and over agian. I am sure that she has drove them crazy when they finally break down to call me b/c they are so good with her, they give her jobs to do and let her help with things (mom is still very very physically active and fine. I agree that I think it may be when they have some free time alone etc. that it becomes so horrible. You dont know what to do, I tried not taking her out anywhere even though mom always loved to go with me places, that didnt seem to improve anything. I have tried everything also and nothing seems to help for to long. Somedays she will be okay and talk like she loves it there and its her house etc. other days it's like she knows she is lost and it's never ending. I dont think there are any easy answers for any of us..... It's just horrible horrible horrible!!!!! Mom has her private own room fairly large and very nice private bath, it's fixed up beautiful and she has alot of her own things there etc. STILL it doesnt matter I guess home will always be in their heads and in their hearts just like it is for all of us. Sometimes I see her hands shaking like she is so nervous and I just hold them in mine for a few minutes and try to calm her. I feel guilty for having placed her but yet I know after two years I could not do it any longer, at my house it was worse. She could get out, and she could get hurt, and she could not be any better satisfied for even after two years with us she was looking for home everyday and believe me it was hell. Here we know they are "safe" we know they are "clean" we know they have" proper nutrition" even when they say they havent had anything to eat "ALL" day. We know they have "some socialazation" more than they had at home alone. We know they are getting their "meds" and we have to know that we LOVE them more than words can express b/c WE would not put ourselves through all of this if we didnt. We are all on the same page trying to see to it that our loved one has the best care and are safe. We need to remind ourselves that this disease is slowly killing them and along with that they will lose their personal will and spirit. We cannot let it also kill and destroy our spirits their children, spouse etc. Our testimonial to them is that we can make it girls, the struggles make us stronger and the changes make us wise. I find myself taking more time to hug, more time to admire the beauty of creation around us. Yes I feel alone at times and I feel helpless in this situation that has unfortunatley landed in my personal backyard but as the song says "Life aint always Beautiful, Sometimes it's just plain hard, Life can knock you down and it can Break your heart, Life aint always Beautiful but it's a Beautiful RIDE. Life is what our parents gave us, and no it's not always beautiful but think for a moment about all of the great memories and great times in your life "outside" of this disease and of theirs , and Life is truley a blessing and a Beautiful Ride for the most part. That is what our moms and Dads would want us to see. My mom use to laugh and crawl on the floor with us and play games etc. she loved life and she saw to it that all our "needs" were met not always our "wants" b/c she could not always provide them or they were not what was best for us. We are making sure all their "needs" are met now not maybe their wants or even ours but we are doing what's "best" for them what we can provide , whatever that is to the best of our ability. Hats off to all of us
we are some pretty great girls I think, and our mothers would be proud of us.
jess

 
Old 06-06-2006, 01:43 PM   #7
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Re: Is this normal??? Help please.

Dear Jess,

yes, you are a great daughter and your Mom would be proud of you if she was able to understand it. Hang in there, you are doing a great job. As the disease progresses she will foget about going home. Mine did.

love and a big hug,

Martha

 
Old 06-06-2006, 02:11 PM   #8
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Re: Is this normal??? Help please.

Wise words Martha, very wise words.

Yes, if our charges could only step out of their ditsy state and see we are only doing these things because we love them so much they would be grateful and appreciate the assistance. They would also say "stop fussing, it's not me anymore" I am sure.

I always wished for a 'moment' of clarity so I could explain myself and my actions, of course, that could never ever happen ... sometimes an illusion of clarity would come, but that's all it was, an illusion, although a little bit of me never gave up hope that ONE DAY my ex-charge would say "thanks, but stop it now, move on, don't do this to yourself".

But ... as much as they get agitated, and as much as they put further stress on our lives (albeit, not as much stress as when living under the same room!!) they are ultimately SAFE, DRY, LOVED and FED ... you can't ask for anything more ... especially as they deteriorate and make those four steps difficult .....

We all deserve a group hug .. for those who have been in those shoes, for those in those shoes, and for those about to step into these shoes ....

Hugs !
Sally

 
Old 06-06-2006, 02:28 PM   #9
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Re: Is this normal??? Help please.

To all,

I'm so very glad that I put this out there. It doesn't make the pain go away but it makes me feel OK about what I'm feeling. It is comforting to know I'm not alone. I hate this disease! but I'm learning new things about myself I didn't know I was capable of. I just hope I can continue like you are doing.

A big thank you!

 
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