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Old 04-27-2009, 05:26 PM   #1
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Help


I don't know if I am on the right site or not but if so, I have a question...My mother was recently diagnosed with Alzhemiers. She is 84 years old. I am an only child and I tried for 3 months to keep mom at home but it got to the point where I could not handle her alone. I had to put her in a nursing home and I live each day with unbeleiveable guilt. She had to be put in the hospital to adjust her medications. Today when I went to see her she told me I had to get her out of the hospital before she went crazy. She told me to bring her to my house first and when she was a little more stable, I was to bring her to her house and she would be fine...My question, would it be a good or bad idea to bring her to my house for a few days before she has to go back to the nursing home. I would love to be able to care for her by myself, I just can't do it...Someone please tell me what to do....Thanks

 
Old 04-27-2009, 05:46 PM   #2
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Re: Help

Hi and welcome, this is abolutely the right place.

It would be a bad, bad, very bad idea to take her home with you for a short while and then have to leave her somewhere else. Take her (even better, have someone else take her) 'home' to the NH where she was before her illness. Dementia patients are usually far more doclle and less angry and upset with strangers than with family. Visit her there a day or two later as if nothing had happened.

Every move however large or small is a shock to a dementia patient who has little or no memory of yesterday or last week, but some foggy notions about long long ago. When they want to go home it usually refers to the home they had when much younger, even their chldhood home. My Mom once said to me, "You can't be my daughter, you are much too old" thinking her daughter was a little child.

I had Mom with me for 5 long, hard years. Later she was in a good NH where she lived for 2.5 more years (quite happily) until she died at the age of 99.

I wish I had taken to a NH long before.

No guilt! You did the best you could, as we all did. Guilt is a useless emotion. Use your energy to think of up simple reasons to tell her why she is where she is now, and why she is moving. The simpler the better. This is your home now, see, here is your afghan, your pictures, etc.

This site saved my sanity when I was climbing walls taking care of my dear, sweet, but utterly confused Mom. I love her, and miss her, but it was impossible for me to live with her. She forgot how to keep herself clean and resisted my doing it for her. She wandered off and got lost. She burnt pots and threw out good food. She kept me awake all night and I had a job in the daytime ... it was a nightmare.

Welcome to the Board!

Love,

Martha

Last edited by Martha H; 04-28-2009 at 05:01 AM. Reason: error

 
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Old 04-27-2009, 06:38 PM   #3
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Re: Help

Welcome to the board SuzQ. You are absolutely in the right place. I hope you stay and type often. Like Martha, this place has saved my sanity.

As for guilt, that is not allowed in the world of ALZ. If Mom was capable of living at home then she would still be there. If you were able to keep Mom ad home then she would be with you. But you have already determined that neither of those can happen. Mom is where she will get the best care so there is nothing to be guilty about. I have been where you are. What the heck I am still there. We tried for a year to keep Mom and Dad at home after Mom's diagnosis and it was a disaster. We tried Assisted Living for 18 months and that was not much better. Now they are both in a locked ALZ unit. I was one guilty daughter until the sweet ladies here set me straight. Now I know that 3 shifts of fresh faces and a large ancillary staff can do more than I could every begin to do. Mom and Dad need more than I have to give so I am giving them what they need.

My Mom also says to me "that place is making me crazy". If I would just take her back home all would be fine. She wants to go back to a place where her head is not confused and we all know that is not possible. I remember the chaos of "home" and she is NOT going back!!!

As far as bringing her to your house.... NO NO NO. I agree with Martha!! We recently moved Mom and Dad to the locked ALZ unit and had to spend the night at my sister's with them to facilitate the move. It was a disaster. Mom had no idea where she was or what was going on. She had been to my sisters many times before but it was a strange place to her.

Martha is right about the moves. Mom took a sharp downward turn when she went to AL and again when she moved to the locked ALZ unit. Every time she had gone to one of the daughter's houses it has ended in a major melt down. They truly need the stability of familiar surroundings. If they have to be moved, they need to be moved and left there to adjust. Each is different and some adjust better than others. Dad is easy. Give him Mom, his picture, chair, and book and he's fine. Mom on the other hand wants that place that she calls home where her brain is functional.

SO know that what you are going through is normal behavior and the feelings you are having are normal. We want for them what they want for themselves... that place where her brain is functional. It is difficult to accept that this is one disease we can't fix.....

Hope to hear from you again soon

Love, deb

 
Old 04-27-2009, 07:21 PM   #4
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Re: Help


Thank you Martha and Deb for your quick response.. I have a feeling we are going to become best friends. Mom is in pretty good physical shape so I feel pretty safe in saying, she going to be with me for a while.. She is the absoulte love of my life. We are not just mother and daughter we are the very best of friends, we did everything together. I suppose this might be one of the reasons it hurts me so bad, it's like I am deserting her and when looks up at me and tells me she would never do this to me.....well, I just have to cry. I keep thinking one day I am going to visit her old self again..Is that just wishful dreaming???? Have you ever heard of anyone ever coming out of this? I am so very new to all this and I am sure I am making so many mistakes....I don't won't to do anything that would hurt mom in any way....
Thanks again for your time and concern...
Sue: dizzy:

Last edited by SuZQ29; 04-27-2009 at 07:22 PM.

 
Old 04-27-2009, 07:42 PM   #5
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Re: Help

I can only agree with what Deb and Martha told you. If not for this site I would still be sitting here crying asking why why why???? They all truly saved me and taught me.

My poor mom is in a wonderful living facility but so wants her house back. She so wants to go "home". When in fact what she wants is her husband back from the dead and her life the way it used to be when she was whole and happy when they danced and laughed together.

Did I feel bad when we moved her to her apartment under the watchful eyes of capable people? You bet! I felt like a dog especially when she asked us if she could please move into our spare room and we had to say no.

We didn't let her see her old house for months and when we did she had a major meltdown. It has only been recently that we have been able to even bring her to my home for a visit during family celebrations. If I brought her home to stay with me a few nights it would undue all the work we have done getting her situated.

Good luck and trust yourself. You know what is best for your mother and yourself. Let them take care of her and you enjoy her the best you can.

Love, Meg

 
Old 04-28-2009, 12:22 AM   #6
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Re: Help

I truly understand SuzQ!! I believe we have already become friends by virtue of our common ground. Mom has said the same things to me both in pleading and in anger. Even though she still "wants to go home" the extreme angst she went through seems to have abated somewhat. Now she just talks about it as if she is talking about going to supper. I so wish I could make it different for her but there is nothing I can do to change what is. So I have found the very best facility I could find and know she is well taken care of. She told me long ago that she never wanted to be separated from Dad until death do they part. Dad has vascular dementia and she was his care giver for years before her diagnosis with ALZ. This last move to was to fulfill that promise.... and to give them both the care they need. Do I wish it was different... absolutely!!!! Do I know I have done what was necessary... abolutely!!! So I will hang on to the knowledge that I have done what was best for them at this moment in their lives.

So far my grandmother, several of her siblings, Mom, several of her half siblings, and my Dad have all suffered from dementia. My best friend's mother in law and now her step dad have dementia. I wish there was a magic cure but we have no found one. If the doctor's have ruled out all other possible causes such as NPH, medication side effects, and other possible causes, and you have a definite diagnosis, there is little hope of a miracle..... short of a new medication being discovered to reverse this dreaded disease.

There were moments along the way when mom seemed almost her old self but if you looked close enough you could still see the effects of the disease. She had good days and not so good days but every day she became a little more confused with the ups being not so high and the lows being a little lower. It's hard to tell on a day to day basis but when you look back a few months you see it. Each progresses at their own rate. Dad's is vascular and he is in his 9th year. He is in such bad health sometimes I wonder how he is still here. He still recognizes me and maintains his ability to reason and speak with clarity. He has no short term memory but is easy going most of the time. Mom has been diagnosed for about 2.5 years. She is in perfect health. She still recognizes me but at this point thinks I am a teen ager... not 58. She has lost much of her ability to reason and I have noticed a definite decline in her language ability. Her short term memory is worse than Dad's and she is fighting this diesease with all that is in her. She is the one that wants to go HOME!

I gave up the tears a while ago. I finally realized that it is what it is. I could either grieve for what I couldn't have or I could make the best of what I do have. There are moments of joy with mom and dad even now. Dad's sense of humor is in tact and we do laugh together. Mom even has good moments from time to time. So I basically look past the disease and pamper them both. I forgive the bad moments and hang on to the good moments. It gets me through the days

Love, deb

 
Old 04-28-2009, 12:33 AM   #7
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Re: Help

Hi SuZQ,
Welcome to the board. I agree wholeheartedly with all that has been posted. Life on planet Alzhiemer's is not defined by what passes for normal in our world. You did the only thing you could. This illness defies all known coping methods. I had to care for my Mil with terminal cancer. Believe me in retrospect that was easier then helping to look after my mom. I don't know what's best. The rest of my family don't want mom in a NH. Because this has dragged on, I can feel all my unconditional love eroding. There's consequences whatever path you choose. So don't beat yourself up.
sandra xoxoxo

 
Old 04-28-2009, 06:22 AM   #8
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Re: Help

As I read the posts one thing is clear. there is always someone who wants the best care of the parent and that can be had in the nursing home and siblings who don't want it to happen.

It was the same between my sister and I -- what I had to do was not be there for my sister. It was hard and yet easy because I worked full-time have a very active social life I wasn't willing to give up. I am also a widow trying hard to keep sane everyday, every hour, every minute to define who I am now and what is it God wants me to be.

-- Not allowing Sister to 'dump' last minute, my mother's care on me or my kids so she could run out to the store --
-- making her plan her time out of the house so I could be there for her watching my mother when she ran to the bank or store,
-- approving or forcing the hiring of in-home nurse so that the 'watching' was done during the day and not when I got home from a full-day of work

It was when my kids and I couldn't be 'used' anymore that sister started to realize that maybe she needed to do put Mom in a home -- not for anything more but for her own health and sanity. Mom was starting to abuse her: pinching was the worst but she's slap her hands away, she'd kick her, she even bit her a few times.

Did I feel guilty about not going over each and every night and offering assistance? yes. But I did run over when the volume between the two of them got so bad, I could hear it and I'd do it to separate them and get Mom to stop doing whatever it was she was doing but sometimes I'd yell at Sis to say she was her own worse enemy. Not having anyone to talk to she'd tell my mother things like : On Sunday, we're going to Aunt Angie's for dinner. Well then sometime during the day Mother would sneak upstairs and start to undress and re-dress because they were going . . . Or mother would -- in her own non-verbal way, ask my sister 30 thousand times, 'are we going to Angies? or she would get her coat on and cling to the walls preventing sister from making her sit down because she wanted to go . . . It was aggravating . . . .

So, I know I di-gressed -- what I'm trying to say -- is when people say "no, Mom is fine where she is, etc. Then step back -- wayyyyy back and say "ok then, she's all yours". As hard as it is, you will find they shortly cave in.

There is nothing to feel guilty about. I wouldn't want someone feeling guilty about me when my time comes. My family needs to have a life, as long as they know I'm being well cared for, that's fine -- I probably won't be but they won't need to know it, and I hope not to be of this world to know the difference myself.

CaringSister54

 
Old 04-28-2009, 07:34 AM   #9
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Re: Help

I am still blown away about the support I am receiving from all of ya'll. It is so wonderful to know that there is so many people out there that is going through the same thing as I and is willing to help others.
Ya'll please bear with me, some of my question make so simple a rock could answer them but I need ya'll . Question,...do you think I should visit mom in the NH every day. I usually spend about 2 or 3 hours with her...Yes, I feel like a basket case when I leave but it's not about me....it all for her....Just don't know if it is the right thing to do...if not, how often do I visit her and for how long????
I so sorry, I know I am already driving you crazy.....
Sue

 
Old 04-28-2009, 08:21 AM   #10
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Re: Help

Suz,
You are not driving any of us mad. We're there already there. Don't fret. You should have read my post last week. Drama queen isn't a word i would use to describe me, but when i looked back on it, that is how i came across. I don't feel qualified to suggest how often you should visit. Maybe some of the other ladies could help.
sandra xoxoxo

 
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Old 04-28-2009, 10:09 AM   #11
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Re: Help

I feel bad about something I said in my first post....I said I was an only child. Not ture....I have a sister but she lives in Texas and she NEVERS comes to see mom....Now, she calls all the time but never offers any kind of help...I was just to embarrassed for ya'll to know that she don't won't to do anything but place a call....but she never fails to tell me, she can't believe I put mom in a NH...I think I have a lot of pent up hostility about her actions especially when mom asks all the time does my sister ever visits her or does she help me in any way....I just tell mom she live far away and her health isn't very good. Mom just looks at me and say's "don't sugar coat it, she can do what ever she wants"...So along with mom I have a few other issues....
Poor me....I think I am having a pity party

 
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Old 04-28-2009, 10:20 AM   #12
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Re: Help

HI,

How often you should visit? I don't know..how long has she been there...you may have said but I forgot...(EEKS !) If she has been there only a short time then maybe more in the beginning til she gets her footing and then gradually cut it back..it's what I did when mom first moved in. I was there daily for a bit of time so she didn't feel deserted.

She has been there for 15 months now and I see her Saturday and Sunday and I TRY TRY to limit myself to only one or two other days during the week for two reasons. First, to try to get her to not depend on me everyday and because it forces her to become a part of the community over there...and secondly, for my own space and sanity. I need to have time for myself to sit or shop or work or do errands. We need to take care of ourselves mentally and physically so we can be well to take care of them.

Also, I am only 10 minutes away so I can show up over there in a moment's notice. If mom was further away I probably wouldn't be over there as much.

And as for how much time you spend while there find what works best for you and your mother. You'll find this is all trial and error. Let the staff guide you..ask questions. They will be of great help. They have been doing this for a long time.

And please don't think you are being a bother to us in asking questions. It's what we all do. Converse, hold hands, complain and rant.

Love, Meg

 
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Old 04-28-2009, 10:32 AM   #13
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Re: Help

I just finished my last post to you when I saw your new one concerning your sister. The fact that she questions you about putting your mom in a NH makes me furious!! I can't relate to having a sibling like that but many others on his board can...and I am sure will! Hah!!

My brother lives on the other side of the country..he spends about a month or so a year here with us and mom and I are flying out to see him next week.

He calls her a lot (2 to 3 times a week) and mails her things because it makes her happy to get mail. At a moment's notice I can call him if I need support of any kind and he will call her and talk to her. It helps a lot. So if your sister wants to help tell her to stop questioning you and start calling mom on a regular basis.

Grrr....selfish, self serving siblings make me so angry!

Love, Meg

 
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Old 04-28-2009, 10:36 AM   #14
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Re: Help

I can't relate to having a sibling like that but many others on his board can...and I am sure will! Hah!!



I meant that others who can relate will comment ..I am sure!

Love, Meg (again)

 
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Old 04-28-2009, 11:28 AM   #15
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Re: Help

Suz and Meg

I couldn't do hands on care with my mother. My sister would take her into the bathroom and put hemorroid cream and other things. I would just go and make sure she wiped herself or I'd wipe her as best I could but creams and other things -- not me.

I just knew that my job wasn't Mom's hands-on, day-to-day care. My job was to support my sister so that she didn't get it from Mom and from anyone else. None of my mother's sisters ever made my sister feel like she wasn't doing right and both of them was telling my sister that she needed to be put into a nursing home.

So, I would be at meetings but only if sister asked. I never invited myself. If she asked, I'd always rearrange my life to accommodate her. I never wanted her to throw it in my face that I didn't care about her -- and she did.

She wanted me to come home from work, get changed, and immediately come next door, sitting with her and Mom. She wanted idle chatter or wanted us to watch TV. She offered to have me eat with them but I couldn't stand being around. She would get mad at Mom (easily done) especially the battles pertaining to eating. Mom couldn't talk and would take a sh*t fit on anyone talking with sister. If she was on the couch, she wanted my sister there on the couch. If we went to sit at the dining table, even though she would see us, she'd pitch a fit to either be allowed at the table with us or we couldn't sit there. I hated being there because even though sister would demand I talk with Mom, when and if I tried, sister would jump in and answer for her. It was aggravating and frustrating.

I wasn't Mommy's girl in my whole life and never had a true close relationship with my sister either and I couldn't change that.

But I also wouldn't let anyone crap all over sister. Social Workers, the As* at Hospice, and others . . . Even the nursing assessment worker who came over tried talking with me because talking to sister wasn't easy and I said "oh no, you speak with my sister. I'm here to support her and she is the one supporting my mother".

 
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