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Listen To Your Instincts, Deal With Your Doubts, Take Care Of The Sick

This is a special testimonial from our French branch to raise awareness for Alzheimer's.

Five years ago, Elisabeth (@ztg4475) was the first person to notice that her mother was behaving unusually. Neither her family nor her mother wanted to believe that she had developed Alzheimer’s disease. Today, at 88 years old, Elizabeth’s mother still lives in her own home, thanks to the determination of her daughter.

How did you come to suspect that your mother had developed Alzheimer’s?

I began to notice small changes in her behaviour. First of all, there was an air of nervousness around small, daily tasks: my mother was constantly fidgeting with her keys or small pieces of paper. I also noticed that she began to lose track of time and would mix up dates as well as forgetting to attend appointments. She would ask me the same questions several times and became obsessed with tiny, inconsequential details that would go around in a loop. She forgot how to do everyday tasks, such as tidying the shower gel or tying her shoe laces. Finally, she was forgetting if she had eaten or what she had seen on the television the day before.

image of interviewee

Did your friends and family agree with you?
Apart from my daughter, who is very close to her grandmother, our family thought that I was exaggerating. My mother who was, and still is, capable to joke and to have a conversation that would seem normal to those that didn’t know her very well.

How did your mother react when you spoke to her about Alzheimer's?
She became very angry and blamed her behaviour on being tired. I really had to insist that she went to the doctor, I would shout and we would argue and finally she agreed to visit the Alzheimer’s unit of our local hospital.

How did the diagnosis of the disease happen?
The diagnosis was made by geriatrician in our hospital. We visited the geriatrician together and I filled out a questionnaire while my mother stayed alone with the doctor. My mother did some classic examinations (tension, etc.) as well as a test that lasted about one hour and thirty minutes with a psychologist.

Did you feel like the health care professionals really listened to you?
Yes, and truly that is very important!

How do you manage daily life with this disease? What are the main difficulties?
The main difficulty was  making her accept that her housekeeper needed to come more often (two half days instead of one) and that she would be helping her with things other than house work, such as shopping, checking the mail, helping her to put away her clothes…

I try to be patient, even though sometimes it is very difficult. On the other hand, she no longer gets angry with the situation. She understands now that I am doing these things for her well-being , to insure that she doesn’t go into a retirement home , and she thanks me often.

What advice do you have for someone who suspects that a loved one might be suffering from Alzheimer’s?
You really need to put pressure on them to go to the hospital to do tests.

What advice do you have for someone who is taking care of someone with Alzheimer’s?
When making the diagnosis, you have to listen to your own intuition and no one else. You need to find a hospital (or equivalent) that is highly trained to form a team with the patient and their relatives. At the onset of the illness, you need to find effective and practical ways to keep the patient at home for as long as possible, such as encouraging them to have a morning routine that they do every day. Don’t hesitate to be creative and resourceful!
Although it may seem a bit ridiculous at first, I write a lot of things to my mother on small pieces of paper: the dates of appointments but also the jobs of my children, deadlines like Christmas, etc.

Finally, you have to be strong for the patient and do everything in their interest, even if it is sometimes necessary to be tough...

When taking care of someone with Alzheimer's you have to find effective and practical ways to keep the patient at home for as long as possible, such as encouraging them to have a morning routine they do every day. 

Don't hesistate to be creative and resourceful!

avatar Louise-B

Author: Louise-B, Content & Community Manager

Community Manager of Carenity in France, Louise is also editor-in-chief of the Health Magazine to provide articles, videos and testimonials that focus on patients' experiences and making their voices heard. With a multidisciplinary background in journalism, she coordinates the writing of content for the Carenity platforms and facilitates the members' interaction on the site.

Comments - Page 2

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on 1/23/19

My mama has Sundowners.  It is heartbreaking and often time consuming. She will be 82 in April and is not in good health. The problem is, I am not in good health either. I have Fibromyalgia, severe Osteoarthritis, Interstitial Cystitis, Raynauds and I suffer from Depression.  I am so exhausted and my pain is often unbearable. My husband cleans some, does 90% of the laundry and gets her breakfast but she has potty accidents and he refuses to clean her up,,  I took care of his mom til she had a stroke and had to be put in a nursing home.....  That is not too far away I am afraid. She told me she would rather die than go to a nursing home.  I totally understand.  Home Health is my saving grace.  Thanks for allowing me to vent. 

Desi

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on 3/27/19

@Hidden username‍ how is your mother doing? I am glad you have your husband to help. I too am not in very good shape myself and worry about how I will be able to continue to care for my parents.

If you do not mind me asking how are you affording home health? IS this covered by Medicare?

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on 4/18/19

Alzheimers is such a life changing and heartbreaking condition. God bless all who are dealing with it and their caregivers.