Alzheimer's Support

PHarmGirl · Post by **PHarmGirl** » December 9, 2006 1:01 pm

Anyone out there struggling with parents, relatives, or friends with Alzheimer's?

My Mom was "diagnosed" with Alzheimer's in 1998. The disease did not progress rapidly until about a year ago. She just recently moved from an assisted living home into a nursing home, because of the progression of the disease.

I am the child who lives closest to her and sees her the most. It has been a mental struggle, but I am so very thankful that she is relatively healthy, and that she is always happy and not in any physical pain.

It is still a very cruel and awful disease ....

ragtopW · Post by **ragtopW** » December 9, 2006 1:18 pm

No but when I had Roommates two fo them
worked at assisted living centers..
and worked with these victims..

Phin power for you and the family

and phin power for all the fine folks that work with these
affected..

conched · Post by **conched** » December 9, 2006 2:08 pm

^^^^POWER for the PHarms! (((Lori)))

Big Phan · Post by **Big Phan** » December 9, 2006 3:16 pm

(((Lori)))

Yes, experience with two grandparents. Alzheimer's is a cruel disease - to the victim AND to the caregiver.

Lots of love and patience to you during this most difficult time.

I just ordered a "Hope" bracelet from the Alzheimer's Association to give as a Christmas gift. Definitely money to a worthwhile organization.

txaggirl91 · Post by **txaggirl91** » December 9, 2006 3:24 pm

my grandmother passed away from complications from Alzheimers... it was horrible. her brothers also had some form of it as well.

my family has all donated blood to the genetic reserach to look for markers of the disease. when she passed, we donated her brain to this research group... to hopefully help find a cure. it was a hard decision for my dad and his sisters but in the end, we knew we had to do something to help the cause...

my dad is starting to show some early signs - we beg him to go through the tests and get on the medication that will slow the progress of it but in his opinion, he doesnt want to prolong what will happen regardless...

i've got you and your family in my prayers

phjrsaunt · Post by **phjrsaunt** » December 9, 2006 4:22 pm

Txagrl-HOORAY for your family's decision. What a wonderful gift. What a horrible situation.

Hubby's grandmother had it. She was about an hour away from us so we didn't see her frequently for the last couple of years of her life. Because of the time between visits, the progression was VERY noticeable. Some of it was kind of funny to those of us who didn't have to be responsible for her 24/7. Hubby's mom (primary care giver) about wore herself out with just guilt and worry. Grandmother SWORE Mike's mom was stealing money from her and wouldn't sign check to pay her own utility bills. SWORE one time that there were crocodiles outside her living room window. Wanna see a grown man cry? Have his grandmother (who basically raised him) call him by someone else's name because she got confused about who he was.

Laurie, my heart goes out to you.

PHarmGirl · Post by **PHarmGirl** » December 9, 2006 8:14 pm

Thank you all!

Really, I would like to be here for others on BN who are struggling. We have been dealing with this for six years so I feel I have an inside track and can sympathize and offer support and advice to others here. Just to listen if nothing else. A co-worker had a Mom who became violent and turned against her (common with Alzheimer's) and I tried to be there for her. I am thankful my Mom is still calm and loving.

You are right, Auntie, I see Mom often so it is not so much of a shock. My brother and sister have a harder time when they do visit. Thanksgiving was hard for them since she had gotten so much worse.

Sometimes I think she actually knows who we are, but just has a hard time with the "name labels" - for instance, most of the time she says I am her granddaughter, or sister, or aunt. So she realizes I am a female relative but just can't pin the right label on the relationship.

TXA - Please send me or post more information about what your family has done re: genetic research, etc. I would like to talk to my family about this!

Post by **SMLCHNG** » December 9, 2006 8:35 pm

Big Phan wrote:
Yes, experience with two grandparents. Alzheimer's is a cruel disease - to the victim AND to the caregiver. Lots of love and patience to you during this most difficult time.

Lisa speaks the truth.. I watched my grandmother suffer with it. I watched my grandfather tire from taking care of her, but loved her till his end.

((((Lori)))) Bless you for your heart.

phjrsaunt · Post by **phjrsaunt** » December 9, 2006 9:53 pm

I don't know enough about nutrition to really speak on the subject, but I've always felt that there MUST be a link between nutrtion (or at the very least, HYDRATION) and declining mental health. I started thinking that when I realized that I had never seen Mike's g'ma drink just a glass of water, even when she was still in relatively good health.

Anyone care to add their thoughts on the connection (or lack of) between nutrition/hydration and geriatric mental health?

PHarmGirl · Post by **PHarmGirl** » December 9, 2006 11:00 pm

phjrsaunt wrote:I don't know enough about nutrition to really speak on the subject, but I've always felt that there MUST be a link between nutrtion (or at the very least, HYDRATION) and declining mental health. I started thinking that when I realized that I had never seen Mike's g'ma drink just a glass of water, even when she was still in relatively good health.

Anyone care to add their thoughts on the connection (or lack of) between nutrition/hydration and geriatric mental health?

I do not believe there is a link between diet and the disease. If there is , my Mom totally blows the theory. She always lived on a farm. Almost everything in her diet for her whole life was fresh, no preservatives. We always had a garden with fresh produce, and she canned (glass jars) and froze things to eat in the off season. We ate lots of fruits and vegetables and very seldom ate anything from an aluminum can. Mom and Dad never drank anything alcoholic. They weren't against it, just never liked it (or maybe were too frugal to spend the $$ on it). Soft drinks were a luxury. We didn't drink them on a daily basis like I do now. We drank lots of water, milk, and iced tea growing up.

I think there is more of a genetic link ....

nutmeg · Post by **nutmeg** » December 10, 2006 9:40 pm

No personal family experience so far. However my best friend's dad died of it. It was very hard on her mom who ended up having to sleep across the door of the apartment because he would wander out at night with nothing but his pj's (winter in Michigan can be deadly in that sort of case)

She fought having him in a nursing home, but it got to the point where she could no longer keep up with him.....

It was very sad...I broke my ankle the day he died and was in the hospital. I was telling my friend how sorry I was not to be able to attend the funeral. She told me that to her, he had been gone since he quit remembering who any of them were and that they had already mourned him...

Much phin power to all the famillies suffering with this disease...

carolinagirl · Post by **carolinagirl** » December 10, 2006 10:08 pm

Thanks for this thread and everybody's comments...Thanks for your post, PharmGirl. I would appreciate advice and a sounding board from time to time!

I am going through it with my mother who lives with me.

Only in the past month have I been able to truly accept it and pushed her doctor for a diagnosis. She said "Alzheimers" last month. I pushed back in Aug/Sept for a referral to a neurologist, and he ordered CT scan and doppler study of carotid arteries. Both were "normal," his office reported. I have a follow-up appointment this Thursday to get more specifics.

Short-term memory is about five weeks back, so we are in the early stages. Long-term memory is good: she remembers all her children and most of her 15 grandchildren, even the Turkish teenagers adopted two years ago.

She came to live with me five years ago after Dad died, because she wouldn't eat much, and was not driving very well. One of my brothers says she's lived these extra five years, because she was here with me. I try to give her LOTS of activities, and make her eat and drink Ensure and Boost.

Here's the most important thing: Back in August, I started her on Exelon, which is supposed to help them be more cooperative and help them stay themselves longer and out of a nursing home. It has made a world of difference. I would advise anyone to try the medication, and if one doesn't work, try another. Earlier, we tried Aricept, and it was a disaster -- she was very sleepy and in a stupor all the time. They can have opposite reactions for other people.

carolinagirl · Post by **carolinagirl** » December 10, 2006 10:16 pm

Here's the website for a book I'm reading: http://www.elderrage.com/

Elder Rage, or Take my Father, PLEASE! by Jacqueline Marcell.

She came here recently to give a program. It was very informative.
She cared for both her parents while they declined into Alzheimers.

I'm giving the book to all my brothers' for Christmas:

magnus & Mr Moon · Post by **magnus & Mr Moon** » December 10, 2006 11:49 pm

((((((((((((((((((((((((((PHIN POWER)))))))))))))))))))))))))))))))))))))))

I am watching (remotely) my favorite and namesake Aunt progress with this disease. Not sure which is harder - my Aunt's progression in the disease or the struggle of those closer to her (aka her kids (my cousins)and my mom - the older sister) - it IS a cruel disease. Lori - wish I had could make it better. All I can say is what I tell my mom - she is NOT the person you remember so - focus on the good memories and appreciate those rare days when things are better. DO find comfort that she is not in pain and happy.

SIGH.

captenuta · Post by **captenuta** » December 11, 2006 11:38 am

My wife is a nurse in a nursing home and cares for Alzheimers patiences. She's a wonderful nurse who cares for her patience very much. No one in our family has had this disease but we know how it effects people and their families. I can't say enough about my wife and the work she does but she loves her job and the families love her for it. People send her thank you cards or even call to say how much they appretiate her caring for their loved ones. I'm very proud of her.

PHarmGirl · Post by **PHarmGirl** » December 11, 2006 10:44 pm

carolinagirl wrote:Thanks for this thread and everybody's comments...Thanks for your post, PharmGirl. I would appreciate advice and a sounding board from time to time!

I am going through it with my mother who lives with me.

Only in the past month have I been able to truly accept it and pushed her doctor for a diagnosis. She said "Alzheimers" last month. I pushed back in Aug/Sept for a referral to a neurologist, and he ordered CT scan and doppler study of carotid arteries. Both were "normal," his office reported. I have a follow-up appointment this Thursday to get more specifics.

Short-term memory is about five weeks back, so we are in the early stages. Long-term memory is good: she remembers all her children and most of her 15 grandchildren, even the Turkish teenagers adopted two years ago.

She came to live with me five years ago after Dad died, because she wouldn't eat much, and was not driving very well. One of my brothers says she's lived these extra five years, because she was here with me. I try to give her LOTS of activities, and make her eat and drink Ensure and Boost.

Here's the most important thing: Back in August, I started her on Exelon, which is supposed to help them be more cooperative and help them stay themselves longer and out of a nursing home. It has made a world of difference. I would advise anyone to try the medication, and if one doesn't work, try another. Earlier, we tried Aricept, and it was a disaster -- she was very sleepy and in a stupor all the time. They can have opposite reactions for other people.

Yes, we will have to stay in touch and compare notes.

Mom has been on Aricept since 1998, with no complications. There may have been some stomach irritation for the first few days but after that, nothing. I really believe that it slowed the progression of the disease. She basically stayed the same for about seven years. Short term memory loss, but could recall most everything from way back.

What activities do you try with her? It is getting harder and harder to find something to stimulate her. We play straight dominoes alot. It is a good game for Alzheimer's because she doesn't have to remember a trump or what the opponent is holding. I try to get her to read the paper aloud, or at least some of the headlines.

It is good she can live with you. Bless you in your efforts to keep her mind alive!!!

ragtopW · Post by **ragtopW** » December 11, 2006 10:49 pm

captenuta wrote:My wife is a nurse in a nursing home and cares for Alzheimers patiences. She's a wonderful nurse who cares for her patience very much. No one in our family has had this disease but we know how it effects people and their families. I can't say enough about my wife and the work she does but she loves her job and the families love her for it. People send her thank you cards or even call to say how much they appretiate her caring for their loved ones. I'm very proud of her.

as well you should be.. Phin power for your wife..
I would not have the strength to work where she does..

PHarmGirl · Post by **PHarmGirl** » December 11, 2006 10:53 pm

Thanks for the kind words and encouragement! I will have to get the book Elder Rage.

Yes, captenuta, your wife has to be a very special person to work with the elderly and especially with Alzheimer's patients. Mom has had several that are absolutely priceless! They had tons of patience - always listened to Mom's stories like it was the first time she told it.

My hats off to all who work with the elderly!!