TexasCookie
04-03-2005, 07:21 PM
How does one go about making siblings understnad that there really IS something wrong with mom???
My mom was diagnosed with AD about 6 months ago. I live with my mom and take TRY to take care of her. I do all the housework, (she does dishes but I usually have to redo them), take care of the laundry and work two part time jobs from my home office. I ALSO pay her rent AND buy all the groceries.
I have one brother in IL who thinks there is nothing worng and I should be kicked out of the house. I have a sister 20 miles away who hardly ever comes around unless she wants something. AND I have a brother who lives a few blocks away who says its just old age and he hardly ever comes around.
Mom is on Aricept but I really don't think its doing any good. She's also on Prozac and Xanax which I don't think are doing any good, but getting this woman to go to the doctor is like pulling teeth. I have to end up screaming and cussing to get to her to go.
I recently started on Zoloft just to help me cope with all this and I'm at the end of my rope. She's too healthy to put in a home and too sick to stay alone and I'm just kind of stuck :( My daughter who lives 300 miles away wants to get a bigger house and have me move in with her because she's worried I'm ruining my own health but I don't know what to do about my mom if I did that.
Not sure I'm looking for an answer or if I just needed to b*tch a bit.
My mom was diagnosed with AD about 6 months ago. I live with my mom and take TRY to take care of her. I do all the housework, (she does dishes but I usually have to redo them), take care of the laundry and work two part time jobs from my home office. I ALSO pay her rent AND buy all the groceries.
I have one brother in IL who thinks there is nothing worng and I should be kicked out of the house. I have a sister 20 miles away who hardly ever comes around unless she wants something. AND I have a brother who lives a few blocks away who says its just old age and he hardly ever comes around.
Mom is on Aricept but I really don't think its doing any good. She's also on Prozac and Xanax which I don't think are doing any good, but getting this woman to go to the doctor is like pulling teeth. I have to end up screaming and cussing to get to her to go.
I recently started on Zoloft just to help me cope with all this and I'm at the end of my rope. She's too healthy to put in a home and too sick to stay alone and I'm just kind of stuck :( My daughter who lives 300 miles away wants to get a bigger house and have me move in with her because she's worried I'm ruining my own health but I don't know what to do about my mom if I did that.
Not sure I'm looking for an answer or if I just needed to b*tch a bit.
Sponsor
Martha H
04-03-2005, 08:17 PM
Dear Texas
I could have written this letter just a few months ago. In fact my sister still denies much is wrong with Mom.
Luckily my brother soon realized it was not just old age.
There is a list of the 7 stages of Alzheimers on this Board. Maybe you could copy it and highlight all the symptoms your Mom shows, and send it to each of your siblings. That might help.
It seems a common phenomenon that the caretaker is misunderstood, yes, even accused of exaggerating. I guess it's because the truth is almost too horrible to comtemplate. But YOU know your Mom best since you live with her.
Get your family to see the truth by repeating it, again and again, inviting THEM to come and care for her for awhile, etc. You need some relief. This Board is a good place to vent, and you will also get a few concrete ideas. Not wanting a doctor is also typical of this disease, as is personal decline in hygiene, (I have rewashed Mom's dishes for years now!) and the belief that you are really OK, other people around you forget things, make bizarre mistakes, and wrongly criticize you. As the chief care giver you will also be the brunt of family fears, disguised as blame.
I wish you luck. Sorry you have to go through this. How old is your Mom? Mine is 96 and when this began about a year ago I thought 'she wil not live long enough for it to become REALLY bad, I can handle it." Well, I can't. I needed and am getting relief (in 10 weeks she will go to live with my brother, although my preference would be a good nursing home regardless of cost.)
Love and prayers,( come back here, you will find moral support and more)
Martha
I could have written this letter just a few months ago. In fact my sister still denies much is wrong with Mom.
Luckily my brother soon realized it was not just old age.
There is a list of the 7 stages of Alzheimers on this Board. Maybe you could copy it and highlight all the symptoms your Mom shows, and send it to each of your siblings. That might help.
It seems a common phenomenon that the caretaker is misunderstood, yes, even accused of exaggerating. I guess it's because the truth is almost too horrible to comtemplate. But YOU know your Mom best since you live with her.
Get your family to see the truth by repeating it, again and again, inviting THEM to come and care for her for awhile, etc. You need some relief. This Board is a good place to vent, and you will also get a few concrete ideas. Not wanting a doctor is also typical of this disease, as is personal decline in hygiene, (I have rewashed Mom's dishes for years now!) and the belief that you are really OK, other people around you forget things, make bizarre mistakes, and wrongly criticize you. As the chief care giver you will also be the brunt of family fears, disguised as blame.
I wish you luck. Sorry you have to go through this. How old is your Mom? Mine is 96 and when this began about a year ago I thought 'she wil not live long enough for it to become REALLY bad, I can handle it." Well, I can't. I needed and am getting relief (in 10 weeks she will go to live with my brother, although my preference would be a good nursing home regardless of cost.)
Love and prayers,( come back here, you will find moral support and more)
Martha
TexasCookie
04-04-2005, 06:26 PM
Thanks for your response I appreciate it. There are times I just want to run away form home and not come back LOL.
Do bowel problems go hand in hand with AD? My mom has had diahrrea for a few months on and off and most of the time doens't make it to the bathroom in time. And again I can't get her to the doctor.
Mary Lou
Do bowel problems go hand in hand with AD? My mom has had diahrrea for a few months on and off and most of the time doens't make it to the bathroom in time. And again I can't get her to the doctor.
Mary Lou
angel_bear
04-04-2005, 06:44 PM
Hi Texas, and sorry for my delay in replying to you .. it's rapidly becoming 'one of those weeks' around here .........
Texas, I don't think family will ever TRULY understand unless they actually step in and do something and live with it. You can tell them, until you turn blue, but they will proverbially put the blinkers on ... and even when confronted with the bizarre behaviour, those blinkers will get thicker and bizarre behaviour will be justified.
You might get the odd person with the right kind of empathy and support, but, unfortunately, in my humble opinion, unless they live with it, they will judge it and SOMEBODY has to be the scapegoat, and that will inevitably end up being you .. the carer.
It's a hard, lonely road we carers tread ... I am seriously considering asking the doctor to put me on antidepressants at the moment, but just holding back .. I am getting sick looking after two high dependancy people, and I know what needs to be done, but I just can't SAY it. Their son (my BIL) justifies his mother's behaviour every single time, even though she attacked his girlfriend one day ... he retreats into his safe zone of believing his mother isn't as bad as everybody else makes her out to be. It makes me wonder if I am looking into things harder than they are .. but then again, when my kids say they are scared, it can't be ME can it??
Texas, welcome to our little island of sanity .....we'll all go nuts caring together .. LOL
Hugs
Sally
Texas, I don't think family will ever TRULY understand unless they actually step in and do something and live with it. You can tell them, until you turn blue, but they will proverbially put the blinkers on ... and even when confronted with the bizarre behaviour, those blinkers will get thicker and bizarre behaviour will be justified.
You might get the odd person with the right kind of empathy and support, but, unfortunately, in my humble opinion, unless they live with it, they will judge it and SOMEBODY has to be the scapegoat, and that will inevitably end up being you .. the carer.
It's a hard, lonely road we carers tread ... I am seriously considering asking the doctor to put me on antidepressants at the moment, but just holding back .. I am getting sick looking after two high dependancy people, and I know what needs to be done, but I just can't SAY it. Their son (my BIL) justifies his mother's behaviour every single time, even though she attacked his girlfriend one day ... he retreats into his safe zone of believing his mother isn't as bad as everybody else makes her out to be. It makes me wonder if I am looking into things harder than they are .. but then again, when my kids say they are scared, it can't be ME can it??
Texas, welcome to our little island of sanity .....we'll all go nuts caring together .. LOL
Hugs
Sally
glamourgal
04-04-2005, 06:45 PM
Hey Texas,
My grandma, whom I help take care of (not full-time though--mostly on weekends and some through the week if needed), was taking Aricept for alzheimers. She also started having diarrhea. That is one of the side effects of this drug. We took her to the doctor and they switched her to Reminol. She has now stopped having diarrhea. Although I am not sure if the Reminol is really helping or not--but it is doing about the same as Aricept without the side effects.
I sure hope things get better for you and that you get more help from your family. My GM was doing a lot better after she recently had a pace maker put in (more oxygen to the brain now---her heart had been stopping for short periods of time), but now she is in the process of going back downhill. It is so sad to see and to deal with.
Anyway, take care of yourself and let us know how everything goes.
My grandma, whom I help take care of (not full-time though--mostly on weekends and some through the week if needed), was taking Aricept for alzheimers. She also started having diarrhea. That is one of the side effects of this drug. We took her to the doctor and they switched her to Reminol. She has now stopped having diarrhea. Although I am not sure if the Reminol is really helping or not--but it is doing about the same as Aricept without the side effects.
I sure hope things get better for you and that you get more help from your family. My GM was doing a lot better after she recently had a pace maker put in (more oxygen to the brain now---her heart had been stopping for short periods of time), but now she is in the process of going back downhill. It is so sad to see and to deal with.
Anyway, take care of yourself and let us know how everything goes.
Martha H
04-04-2005, 07:25 PM
Mom's doctor tried her on Aricept just before Thanksgivng. She had non stop diarrhea for 5 days, and soiled her clothes several times a day, it was uncontrollable WE took her off it. There had not been any perceptible change in her thinking anyhow, and to this day no doctor has said 'she has Alzhiemer's,' In fact after the side effects finally wore off, everyone was happier.
Then on another doctor's visit (this time she got his partner, his son, thus a generation younger) an MRI was ordered, and Namenda. She was just about to go to Ohio and we didn't want to jeopardize that at all, so we said 'wait with the MRI until she's back, and wait with the new drug too.' IF we had started her on it, we might have attributed her 'glowing intelligence' at Elsie's house to Namenda. But she never started. After this trip the family is so divided and conflicted again, that I plan to do nothing, schedule nothing, and leave it all up to the people who take over when I am in Indiana - Bill and Anna.
They both talked to Mom and she expressed fear of the MRI so they said OK, we won't do it. Elsie of course believes there is nothing wrong so no drugs, no MRI. I am neutral. On one hand I'd like to see concrete evidence that something IS going on in her head. But the MRI may not show anything, and even if it did, there is no cure for her behavior. Her extreme old age and her heart failure problems rule out any surgery, if there should be a tumor ... and the doctor told me - when I suggested the full sized aspirin evey day might be contributing to bleeding in the brain, and asked if we could cut down to one 80mg aspirin - NO, her heart cannot work unless the blood is kept this thin, in spite of side effects like bruising. (and brain bleeding?)
So .. the free sample of Namenda stays in the closet, and the MRI isnt being scheduled. And I can't make decisions. Bill has POA over all medical and other affairs, and I am really really happy I do not have it; I am not able to make such decisions - I worry and agonize too long about everything. I have to be pushed really hard before I can decide to do something radical... so you see how pushed I felt when I finally agreed to leave NYC and go to Indiana in June .. pushed almost beyond my patience.
Hang in there, Tex. Do what you have to do ... put your youngsters and yourself first. They NEED you and a healthy family life!
Love,
Martha
Then on another doctor's visit (this time she got his partner, his son, thus a generation younger) an MRI was ordered, and Namenda. She was just about to go to Ohio and we didn't want to jeopardize that at all, so we said 'wait with the MRI until she's back, and wait with the new drug too.' IF we had started her on it, we might have attributed her 'glowing intelligence' at Elsie's house to Namenda. But she never started. After this trip the family is so divided and conflicted again, that I plan to do nothing, schedule nothing, and leave it all up to the people who take over when I am in Indiana - Bill and Anna.
They both talked to Mom and she expressed fear of the MRI so they said OK, we won't do it. Elsie of course believes there is nothing wrong so no drugs, no MRI. I am neutral. On one hand I'd like to see concrete evidence that something IS going on in her head. But the MRI may not show anything, and even if it did, there is no cure for her behavior. Her extreme old age and her heart failure problems rule out any surgery, if there should be a tumor ... and the doctor told me - when I suggested the full sized aspirin evey day might be contributing to bleeding in the brain, and asked if we could cut down to one 80mg aspirin - NO, her heart cannot work unless the blood is kept this thin, in spite of side effects like bruising. (and brain bleeding?)
So .. the free sample of Namenda stays in the closet, and the MRI isnt being scheduled. And I can't make decisions. Bill has POA over all medical and other affairs, and I am really really happy I do not have it; I am not able to make such decisions - I worry and agonize too long about everything. I have to be pushed really hard before I can decide to do something radical... so you see how pushed I felt when I finally agreed to leave NYC and go to Indiana in June .. pushed almost beyond my patience.
Hang in there, Tex. Do what you have to do ... put your youngsters and yourself first. They NEED you and a healthy family life!
Love,
Martha
SiestaDrew
04-04-2005, 10:34 PM
Hey Texas, I too am late in responding, cuz I too had one of those crazy weeks. My hubby has FTD, is only 56, and does not as my brother says "let me out of his sight" so sometimes I have to go awhile without responding.
My hubby has no relatives, but I do and they have been wonderful, however they do not live near me so it is sometime visits.
However dealing with other problems previously, my mother and grandmother, I can tell you that I truly do believe that your family does know, however to acknowledge there is a problem means they have to acknowledge they are part of the solution and therein lies the big big difference. They know they can rely on you, so as Mustang Sally said, the blinders come on.
I have no solution for you, except to say, maybe you just need to tell them I am out of here--and see what happens. I can tell you, as a caretaker, yes your health will suffer. Mayo Clinic told me being a caretaker can take as much as 5 years off your life due to stress and such.
But, these boards do help to vent and rage and such, which helps, even if we do not answer right away, know that we are thinking of you.
Hugs, Linda
My hubby has no relatives, but I do and they have been wonderful, however they do not live near me so it is sometime visits.
However dealing with other problems previously, my mother and grandmother, I can tell you that I truly do believe that your family does know, however to acknowledge there is a problem means they have to acknowledge they are part of the solution and therein lies the big big difference. They know they can rely on you, so as Mustang Sally said, the blinders come on.
I have no solution for you, except to say, maybe you just need to tell them I am out of here--and see what happens. I can tell you, as a caretaker, yes your health will suffer. Mayo Clinic told me being a caretaker can take as much as 5 years off your life due to stress and such.
But, these boards do help to vent and rage and such, which helps, even if we do not answer right away, know that we are thinking of you.
Hugs, Linda
LuvMyLilDoggie
04-05-2005, 12:30 AM
Hi everyone! I was reading through this post and suddenly realized that I've been on both sides of the fence. I never thought much about this since my grandma died in 1984 and grandpa died in 1990. They both had alzheimers. Grandma lived in Tennessee with my aunt until about 6 months before she passed. I knew she had alzheimers but I just had to deal with it while I was there those two weeks out of the year. And my grandpa lived in Wisconsin. He and grandma lived by themselves but my uncle and his wife took care of them. My uncle's wife did everything for them. The only thing she asked of my uncle's brothers and sisters is if they would please take turns coming up on weekends and visit gram and gramps and maybe do some cleaning and cooking for them so she could have the weekend off. My aunt worked a full time job, took care of her house and grandpa's, did their grocery shopping and laundry, took them to the doctor and hospital and anything else that needed to be done. One of my dad's brothers refused to go there because gram didn't like his wife. So I jumped in and took my uncle's spot. I drove 300 miles each way once every five weeks to give my aunt a break and visit with my gram and gramps. I knew what my aunt went through but I'll tell you I never understood it until now. You can be around it often and see it and KNOW things aren't right. But unless you live it day in and day out, week by week, month by month, year by year, no matter how much you know, you cannot POSSIBLY understand. That's why I think even those relatives who see the alzheimers person often don't understand. And that's what makes them so difficult to deal with sometimes. They THINK they know...like Sally's BIL and Martha's E and my sister and brother....
Just my thoughts anyway....
Love, Barb
Just my thoughts anyway....
Love, Barb