My experience with Alzheimer's

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Wilmey
New Member


Date Joined Feb 2013
Total Posts : 18
   Posted 2/25/2013 6:09 PM (GMT -7)   

My mother had Alzheimer's, and died at 91. Two of my sisters, aged 75 and 79, also had it and died in 2011. Another sister died at 58 from Amyloidosis. I also have a Down Syndrome nephew. I took an emergency retirement when I was 55, to take care of my mother so she wouldn't have to go into the nursing home, which had been her greatest fear.

I mention the Amyloidosis, and the Down Syndrome, because I'd read a report online at the time my sister died and we'd realized Mom had Alzheimer's, that said a link between the Alzheimer's, Amyloidosis and Down Syndrome was being considered. I have no idea what ever came of that study.

I spent a little over four years with my mother, 24/7, with virtually no help at all. She broke her hip at the end of the fourth year, and I knew she'd have to remain in the nursing home, but I spent a lot of time each day with her during the first year of her stay there. In the years I spent with her, seeing the person I called "Mom" disappear in increments until all that was left was the shell that looked like my mother, was the most precious time in my life, and if I had to do it over again, I'd do it in a heartbeat. What I got from the experience can't be described, but it transformed me.

At the beginning of our time together, I didn't have a clue what lay before us. I tried to find books in the Library on the disease, in order to have some understanding of what I faced. There were only technical books on the medical side. I'd gone to meeting that were held in my hometown, but they only managed to scare me because they were mostly about the legal aspects. So I gritted my teeth, and stiffened my spine, and got ready to face whatever came, and to deal with it then.

I decided to keep a daily journal with the idea that I might be able to provide useful information for people who would find themselves in my position, and needed insight into what was to come. I managed to get the journal typed a couple of years after I'd done all I could for Mom, and knew I had to find someplace where I could take care of myself, and heal. I had several years of major flashbacks, and a lot of anger to deal with, none of the anger related to Mom.

I planned to retype the journal, removing the very personal, family-type things from it, but I had numerous things happen that has kept me from it, and now my vision does. There's without a doubt a lot more information out there now than there was in 1992, so I don't worry about it much any more.

 

 


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23549
   Posted 2/26/2013 5:56 AM (GMT -7)   
Watching the people we love suffer from AD can be very hard. Your mother was lucky to have you, not all AD sufferers have that support and love. I'm sorry about your losses.

There is a lot of literature out there about AD but I think the one that can really strike home is a book called "Still Alice". This is a book that is written from the view of the actual AD patient, I believe the later chapters were written by her daughter. It's been a few years since I've read it but it still sticks in my mind. I highly recommend it.
SHERRY
Moderator-Allergies/Asthma, Alzheimer's, IBS, Co-moderator-UC
Diagnosed Left sided UC '92 - meds: Colazal, Remicade (6mp discontinued due to neuropathy)*Unable to tolerate ALL mesalamines*, IBS, Diverticuliar Disease, Fibro, Sacroiilitis, Raynauds, OA, PA, Rosacea, Psoriasis, Dry Eye and allergies controlled by Zyrtec and Singular

Wilmey
New Member


Date Joined Feb 2013
Total Posts : 18
   Posted 2/26/2013 3:57 PM (GMT -7)   
Sorry about your dad Sarah Louise. I've been called several things for having given up everything I had to take care of my mother, but amazing wasn't one of them. I thank you for that, but I'm not amazing. Different, yes. Very thankful I was able to find the mother I could have had, if she'd been given half a chance in her life. And sad that my siblings never knew her as I came to, and didn't really want to.

Post Edited (Wilmey) : 2/26/2013 4:02:15 PM (GMT-7)


Wilmey
New Member


Date Joined Feb 2013
Total Posts : 18
   Posted 2/26/2013 4:18 PM (GMT -7)   
Thank you Sherry. I came to realize while caring for my mother, that AD is the most terrible disease there is. Not only for what it does to those suffering from it, but for what the family goes through.

Someone else recently mentioned "Still Alice" to me. I'm really pleased to know about it. Just as I'm pleased to know there's so many forums for people looking for answers. I'd put AD behind me in 2001, after Mom died, because six months later, I seemed to have gotten everything in the book. I told my doctor recently that I feel like the cosmic's petri dish, because I have so many "I don't know what it is" conditions, along with the diagnosed ones.

I need to keep my mind occupied though, and politics has gotten too far from reality anymore to be interesting, and I thought a forum such as this one might be a place for me to share some of what I learned while caring for my mother.

SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 2/27/2013 11:25 PM (GMT -7)   
Welcome to HealingWell

I am so sorry for your loss, I too, know the hardships of losing someone so close to our heart. Your idea of giving tips is wonderful. Even me, an old dog, can learn new tricks :) (no offense people) I consider this site as my family, well online family :) We go through thick and thin, and I dont personally have many in my family I can turn too. You hang in there :)
~Moderator - Allergies & Asthma , Alzheimer's~
"The Walking Medical Mystery"/~Medical Caregiver and Doctors Worse Nightmare~/ And Doctor's Worse Nightmare DX: Lactose Intolerance, Gluten Sensitive, ADD, Fibromyalgia, Carpel Tunnel, Arthritis, Clasterphobia, Anxiety, Diabetes Type II, Grave's Disease, Tachycardia, GERD, PCOS, Migraines, UARS, Anterior Scleritis, Orbital Tumor

Wilmey
New Member


Date Joined Feb 2013
Total Posts : 18
   Posted 3/3/2013 10:10 AM (GMT -7)   
When I was caring for my mother, there was an article in the AD Newsletter about placing a dark rug in front of the door to keep those suffering with the disease from getting out. I put one in front of our door. Mom stepped on it without even noticing, and was out the door.

To try to keep her from wandering in the night, I sprinkled some cat litter on the floor outside her bedroom door. The next morning she came out and told me, "Boy, I hard time going anywhere because of all the big rocks in the road."

SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 3/3/2013 4:32 PM (GMT -7)   
It is amazing at what they say sometimes. I had the same problem, I put door alarms on all doors except my room and bathroom. I also put ohh Red what is that name? The baby proof door knob thingy on the door knob (Someone will come up with the word I'm looking for I think)
~Moderator - Allergies & Asthma , Alzheimer's~
"The Walking Medical Mystery"/~Medical Caregiver and Doctors Worse Nightmare~/ And Doctor's Worse Nightmare DX: Lactose Intolerance, Gluten Sensitive, ADD, Fibromyalgia, Carpel Tunnel, Arthritis, Clasterphobia, Anxiety, Diabetes Type II, Grave's Disease, Tachycardia, GERD, PCOS, Migraines, UARS, Anterior Scleritis, Orbital Tumor

Wilmey
New Member


Date Joined Feb 2013
Total Posts : 18
   Posted 3/5/2013 12:41 PM (GMT -7)   
My mom laughed a lot. She had a beautiful laugh. She was able to see the humor in so much of what she was doing, and our laughing together about such things made the horror of it all somehow more bearable for me.

Our biggest laugh came one morning when she came out of her bedroom all dressed, but she obviously hadn't managed her sweater too well. Then I realized she'd put her legs in the sleeves, and not knowing what to do with the corners of the sweater she had in each hand, she was trying to pull them over her shoulders so hard the sleeves were barely showing below her dress.

It had taken me awhile to figure out why she always ended up with both stockings on her right foot. She had arthritis pretty bad in her left knee and it hurt lifting that foot high enough to put the sock on it.

HARRIET MITCHELL
New Member


Date Joined Mar 2013
Total Posts : 1
   Posted 3/9/2013 5:57 AM (GMT -7)   
I am sorry to hear about your mother and the way you saw her decline but it sounded like you took good care of her.

As a medical student I am interested to know what your experiences, as carers or patients have been of healthcare professionals in dealing with the diagnosis of dementia.

Have your consultations with consultants and GP's been good or bad and why?
ie- did they listen to your concerns and put you in touch with community support programmes?

What would you like to change about the way dementia is approached by society and healthcare professionals?

I want to try and correlate your feelings so that my colleagues and myself are able to improve the care that we can give sufferers and their carers.

I would really welcome your feedback.
Thank you.

Wilmey
New Member


Date Joined Feb 2013
Total Posts : 18
   Posted 3/9/2013 12:06 PM (GMT -7)   
Hi Harriet. I'm not sure exactly what you're asking for, but I'll offer what I can.

I've never looked back on those years with Mom with regret for anything, except the few times (and it was only a few) that I couldn't handle a situation, and was short with her. But I realized it wasn't her, it was an imbalance in me, and I quickly got it under control. We had fairly quickly switched roles, with her becoming the child, and I the mother. And as I would have fought to the death for my real children, I felt the same with her.

I was told by someone that I should go to this something Resources, and sign up for respite care, and I did. But when they told me my income, as well as Mom's would be used to pay for that respite care, I left. In my last year with her, a worker from this place came by to talk to me, and I told him about that, and he said that was wrong. So for the last eight months I had her with me, I had four hours a month when I could get out and think about just me.

I don't know if this has changed yet, but I was also told that if I was taking care of a stranger, I could be getting $1,000 a month, but since it was a relative, I wouldn't get anything.

Our doctor was quick to tell me what a great thing I was doing, but that I really needed to take care of me too. Yet at the end, when the hospital bed I'd gotten after Mom got up and ended up sitting on the cold floor for I don't know how long before I woke up at seven and found her, was going to be taken away unless the doctor wrote another prescription for it, the doctor's response was that maybe I should put a mattress on the floor for Mom. She couldn't get up off the floor, even with help. And in our last six months together, when I didn't dare leave Mom alone for a minute unless she was asleep or eating, I'd mentioned something to the doctor about the growing cost of caring for Mom, and the doctor's response was that if we needed money, maybe I should get a job.

The ladies that came to sit with Mom on those four hours of respite were great. She was always laughing when I got home, and would talk about them and how nice they were for quite awhile after they left.

In the nursing home, I saw the way those caring for the patients viewed them. There were the special ones I called Angels because they were so caring and careful always. But for the rest, I felt like they needed a reminder that one day they would find themselves at that same place on the road of life, and should consider how they'd feel if they were being treated as they were treating these elderly people who could no longer take care of themselves.

So I put together a collage of Mom's life, with a big picture of her at around the age most of them were, and surrounded it with smaller pictures of her at all ages. And I hung it over her bed. Beside it I put a brief summary of her life, which was pretty impressive. And I also put the poem I'd written as a reminder to myself when I'd begun the journey with Mom, of what she was going through, and how she'd want to be treated. It all made quite an impact on the whole staff. Everyone there must have gone in to check it all out.

I'd like to see a change in how so many people still view dementia even now as "crazy." I know people are becoming more aware because A.D. looms as a possibility in more and more people's lives every day.

There are the good commercials on television, such as the one of mother and daughter getting ready to go somewhere, and the mother appears like any other elderly mother, only somewhat confused. This commercial shows that people with dementia still look and act like grandma or grandpa.

Then there's the bad, like the bleach commercial that makes me want to scream, where the grandmother is dancing two raw chickens around on the coffee table while the grandchildren sit on the couch laughing, and the daughter walks through the door, and say's in a resigned voice, "Hello, Mother." And then the bleach is shown. I did write to the company about this and another commercial they've been airing that are so offensive, and one seems to have been pulled, but unfortunately this one is still on.

Hope all this helps a little.
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