Our Readers Write

 
Alberte Villeneuve-Sinclair's last article for True North Perspective, "I'm finally ready ... to talk about ALZHEIMER'S" elicited an outpouring of reader reactions. Following is a sample of those heartfelt letters.
 
Dear Alberte,

A few nights ago, we were watching Grey's Anatomy on T.V. and they had an Alzheimer's patient (a male) who had just been transferred to a Dementia ward where he fell in love with a female Dementia patient and they became inseparable. Unfortunately, the loving couple both had a real wife and husband whose hearts were broken as they had to sit back and witness each their partner being in love with who they mistakenly thought were their life long partners. Both normal partners had to endure not only the pain of Alzheimer's, but the double loss, of their partner to someone else. Very heart-wrenching!
 
It has taken me a few days to reply to your latest article concerning Alzheimer's.  I too have found the pain of losing Mother to Alzheimer's too raw to deal with or even think about for the past years. Your article has brought back many sad and happy memories as I have always felt that Alzheimer's is hardest to deal with on the people who are the caregivers because they are the ones who are dealing with the reality of this disease. 
 
I first detected minor problems with my mother on my regular Wednesday lunch get-together at her townhouse. There were yellow sticky notes all over the place with various information like: Don't forget to lock the car, turn off the stove, let the dog in... Her desserts were to die for, especially her lemon pie and banana cream pie. They soon were inedible as she often forgot to put all the ingredients in their proper proportions. I would bring the pie home but unfortunately have to throw it out. Then one afternoon, she made me a bacon and tomato sandwich with raw bacon and became very upset with me as she couldn't understand what the problem was. She also started having visual hallucinations and would accuse the family members of stealing things from her. She would call us 15, 20 times, day or night, and constantly repeat the same accusations. I would spend all my visiting time looking for objects hidden in the house that she claimed had been stolen.
 
Finally, Kathy and I needed help. We also joined the Alzheimer's Society of Ottawa's support group, had my mother tested and had to move her to the Bearbrook retirement home where she could get more supervision. Unfortunately, the staff were not very well trained in dealing with these types of diseases and things quickly deteriorated. Kathy and I certainly took the opportunity to educate ourselves about Alzheimer's and Dementia patients and soon became frustrated with a system that prints volumes about the proper methods of care but unfortunately due to financial restraints and other reasons cannot provide the care needed. A simple example of this was that Alzheimer's patients' lives should remain constant and yet they are constantly moved around and soon become totally disoriented in an environment where every room looks identical.
 
We finally had to transfer her to Résidence St. Louis where she was housed in a locked unit. This was the lowest I had ever felt as every visit seemed to rip my heart out. I will never forget my mother's look when I left her behind and she begged me to take her home at every single visit. I would spend my whole visit trying to locate her clothes, shoes, jewellery and testing her memory by constantly asking simple questions over and over. I would often leave and sit in my car for a while just to have a good cry. It wasn't until a social worker, Denise Cléroux, finally sat me down and convinced me that it was detrimental to my health to visit as often as I did, that I relented. She told me my mother would never come back to our normal world and what I needed to do was simply visit her in her world. I soon stopped trying to change my mother and just started enjoying my visits with her. Even when she couldn't speak anymore, she never forgot how to dance so I would put on her favourite Western music and we would dance together in her room. She could always hold a dance beat. I would just become whomever she decided I was for that visit.
 
Our hearts were put through the wringer one more time when she fell and broke her hip. They repaired the hip but she developed pneumonia while in the hospital.  The doctor told us that she would never recover as she would be unable to take physio to learn how to walk again. At this time the doctor explained that if we did nothing, pneumonia was a euphoric way to die and that this was a choice for us to make. We chose this route but became very frustrated with the nursing staff whose antiquated beliefs did not allow my mother to receive narcotic medications as they thought she would become addicted to the drug (this with less than 24 hours for her to live). We decided to hold a vigil and stay beside my mother for 24 hours each day, ensuring she received her medication as ordered by the doctor until she passed away. I have always felt that this was the best choice we could have made given the situation. 
 
So yes, we intend to live and enjoy each day as if it was our last! Thank you for reminding us! — Ron Boyer, Florida, U.S.A.

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Dear Alberte, you are wise to write about Alzheimer's! This article will benefit many people since almost everyone has been affected by Alzheimer's disease at one time. I started working on a book that deals with the disease about two years ago, having dealt with my mother's disease as well as other people's. It was a touchy subject then and I didn't want to embarrass my family. But now the time has come and I hope to complete the book this year. — Colette St-Denis, Ottawa, Ont.
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Alberte, I sympathize with your situation. It takes courage and strength to write about the present situation with your mother, especially since you went through a similar scenario with your father. With all the funds that have been accumulated for research, we can only hope researchers will find a miracle cure for this disease so that families no longer have to suffer because this is such a heavy burden on caregivers: spouses, children and caring friends. We all know that no one is exempt, from kings to commoners, Alzheimer spreads like wildfire as our population ages. Your consolation must be in the fact your mom lives in a specialized care facility which can cater to her needs. And you and your sister are there to check on her and visit her regularly. Thank you for sharing this reality with your readers! — Juliette Vinette, Ottawa, Ont.

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Dear Alberte, what an article! It made me cry! I have a friend who's father had Alzheimer's. He had been a lawyer in a big firm and after he was diagnosed and in a home, every morning he would get up, put on a suit, pick up his briefcase and walk the halls, thinking he was going to court. He did this until the day he died. SO SAD!! I hope and pray a cure is found! — Lorraine Boyer, Ottawa, Ont.

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Alberte, that is quite the article! Well written, it describes things as they really are in simple terms. The reader can easily visualize the Alzheimer sufferer, the caregivers and the family members as they navigate through not only one but two cases of the disease. There is so much to be said. Things will never be the same but the family must go on with as much love and respect as they can muster. I am living a similar situation with my mother and every time I come home, I must reconnect with my self because time spent with my mother drains me and causes my world to shrink. She says she doesn't want to be pitied but her attitude speaks a different language. She constantly sighs at her demise, so much that I hold back when I sigh now and focus on centering my energy once more. You have found a unique opportunity to reach people who need encouragement in their quest to make sense and cope with the disease. — Murielle Tremblay, Lac des Loups, Que.

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Reading your article brought tears to my eyes. My dad passed away in May of 2009. He couldn't even remember his daughter, Lise. No matter the disease, when it touches a family member, it affects the whole family. It's important to be strong and support one another and live for each new day, one day at a time. — Dianne Frigon, Carlsbad Springs, Ont.

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Loved your article on Alzheimer's! My wife's dad has had Alzheimer's for about six years now. He is still at home with "Mom" as she won't give in to having him placed in a home just yet. He will be 90 in May and if it wasn't for this crippling mind disease, he would be healthier than a 70 year-old. Sad, REALLY! — Jim & Nicole Mallamo, Ottawa, Ont.