A necdotes, is a platform to share our experiences. It provides a positive environment for support, for ideas, and for camaraderie. We are a community who exchange stories and suggestions on caring for our loved ones with Dementia or Alzheimer’s.
Carry on … Life can continue with joy!
To share your stories, please send them to firstname.lastname@example.org. Include a photo if you wish (jpeg). Everything you send us will be read and many of your stories will be posted right here.
Definition of Anecdote: A short narrative of an interesting, amusing, or biographical incident.
Thank you for sharing your experiences with us…
Sarah McCracken I’ll Always Be Your Baby Girl – My Dad was diagnosed with young-onset Dementia some years ago, with a confirmed diagnosis of Lewy Body Dementia more recently. He is currently 60 and I in my late 20’s.
His decline has been fast and steady, both physically and mentally. I struggle making sense of all the wonderful times I had with my Dad growing up, him being active and healthy – always on the go, to the state he is in now. Sometimes it is too painful to reminisce; the comparison of how different things are is too much to bear.
There is so much darkness associated with this process that sometimes it can feel as if there is no good, no relief, no light. But all it takes is one single moment to realize that love is so much more powerful than any negative thing Dementia can throw at you.
I am reminded of this when I think back to earlier this year on a particular day when I got my Dad settled into bed at his care home and asked him if he needed anything else before he rested. He went quiet and looked away from me. I decided to sit on the bed next to him and after a few moments he quietly responded with “… Maybe a new life?” My eyes became faucets and I immediately wrapped my arms around him. Dementia can be such a monster.
Through my snot and tears, I blurted out a bunch of things about how much I love him and wished that was enough to take this all away. Then, he looked at me in the eyes, lifted up his hand and cupped my face and said “You’re my baby girl. You know that?”
When it feels like our hearts are falling apart, how is it that my Dad somehow manages to remind me that he is still there to hold mine together? I feel so thankful to know his love and give him mine in return.
These times look so different now, but he still takes care of me. He takes care of my heart. What a gift.
Ali Poole My grandmother had Alzheimer’s disease and passed away in a nursing home when I was 10 years old. After seeing first-handedly what Alzheimer’s does to the mind and body, I knew it was a scary, unfair disease. I knew I wanted to make a difference, even if i was only 10. Starting young by volunteering at nursing homes and finally completing my high school senior project based on Alzheimer’s disease, I have always known that it’s my calling to work with and care for the elderly.
I have the privilege of being on the team of caregivers for a very special lady, Margie. I have learned so much from Margie. Although she is in the end stages of the disease, she still has moments of clarity and a twinkle in her eye. She still laughs and smiles and clearly is still in love with her devoted husband of 62 years, John. Thanks to the love and support of John, their children and extended family, Margie is able to remain in the home she so loves. I believe the care she receives there is the reason she is still going so strong.
I’ve recently found my creative passion in painting, and I have established an Etsy page to sell my works. I have committed to donating a portion of the proceeds to the Walk to End Alzheimer’s. You can find me at ArtofAliStore or follow me on Instagram at ali_poole16 to learn more and follow my journey.
I will NEVER forget the day that I realized that my mother’s memory loss was not simply part of ‘getting older’. I will NEVER forget the feeling of fear and uncertainty and disbelief that ran through my body. It is very frightening finding out that a loved one has Dementia or Alzheimers or any other host of those two combinations. To be able to have a place to gather information and ask questions and vent is so very important. I wish I had access to something like this 10 years ago when it started happening to me and my family. This site will help make navigating your new reality a LOT easier.
She declined rapidly after he died and I had to arrange for personal support workers to be in her home 24 hours a day. It would have been nice to have had someone to reach out to for these and other tough changes in all of our lives. One day I took my mom and my daughter to see the musical Carousel in Stratford. She enjoyed being with us, eating at her favorite Tim Horton’s restaurant but really didn’t understand where we were. She slept through much of the production but awoke with a start when she heard them singing the song “June is Bustin’ Out all Over”. She leaned over and said to me “They are singing that song just for me!”.
Everyone Needs Someone
My best friend for over 45 years lives in British Columbia and has for the last 40 years, but we have remained very close. Over the years she has told me about her eccentric aunt who is only 11 years older than her and lives in Toronto. About a year ago things really went bad for her Aunt. She lived in her own apartment, had been retired for about 10 years and was handling her finances, etc., herself. She has been receiving Meals on Wheels and the volunteer from there advised someone that her Aunt was living in a very bad situation. Her Aunt would not listen to anyone, was belligerent, would not let anyone in to clean her or her apartment and was not taking care of herself or her financial situation.
My friend was told about this and was also told that if her Aunt did not let caregivers into her apartment that her doctor was going to get an ambulance and admit her to the hospital. This in fact did happen about 9 months ago. I told my friend (who is her Aunt’s only living relative) that I would visit her in the hospital, no one in this world should be alone. I did this weekly for about 6 months, got her new clothing, took her clothing home to wash, brought her chocolates and cookies and would inquire about her health, etc., from the nurses and social worker for my friend. It took over 6 months but they finally found a nursing home for her. My friend came from BC for a week, saw her Aunt daily and tried to tie up all of the outstanding issues for her. She is still working on this from BC. Her Aunt has many problems, early stages of Alzheimer’s being one. I continue to see her, I bring my puppy with me, he jumps on her bed, and licks her face and she laughs. She knows my puppy’s name and the staff know his name as well as she talks about him, but after all this time, I do not think she knows mine but that is ok. I am glad that I could help her, make her smile and not feel that she was all alone. My friend is very grateful but I am the lucky one because I have the time and the means to help her Aunt.
I have attached a poem that I wrote for the elderly who are in situations similar to her Aunt.
When you are elderly you have lived many years
Someone who has shared love, laughter and many tears
Someone who may be wise and sweet
But a very dear and precious person to meet
The world should welcome him/her with open arms
Most definitely the world will be wiled by their many charms
Their days are filled with anxiety, laughter and many times fear
Maybe someone could help them with this throughout the year
It does not have to be a loved one, daughter or son
It can be anyone
Sometimes they like to give advice, direction and restriction
Take it with grace and do not consider it a conviction
The most important thing is you will feel fulfillment and will be rewarded
By helping and taking care of others so they can move forward
Everyone needs to know they have someone who cares about their life
This eliminates a lot of sadness and strife
Someone who cares, not a relative
A Whiskey Sour for Mum! Chloë Arnould
Cocktail parties were common gatherings and well attended when Mum and her pals were in their prime. She’d dress up, squirt perfume in selective places and head to the party.
She continued to enjoy the cocktail hour always, and to this day is still up for a party.
Mum is now 88 and in a nursing home. I’m sometimes there during morning or afternoon snack when a staff member with a trolley pops by. When asked what she would like, Mum’s response is always some cocktail combo…whiskey sour, martini…very dry, rum and coke, surprise me with a delicious alcoholic beverage…you get the idea. She’s actually only being offered tea, coffee or juice, but she makes the staff smile.
Mum doesn’t respond well to alcohol any more. It’s not a matter of quantity. Even the tiniest bit affects her. All the colour drains from her face, much to my alarm, and it makes her want to lie down almost immediately. It’s become a real party stopper.
Mum associates drinking with having a good time with friends and family and I didn’t want to take that away from her, so I tried to create the same effect but without the alcohol.
For as long as I can remember our family has had picnics, so these days, we often have picnics in Mum’s room. Just before she asks if I brought wine, I whip out the de-alcoholized bottle and pop the cork. Mum’s happy, and it actually tastes great!
When we go out for a meal to one of her local restaurants, Mum always orders a drink. I, then, quietly go up to the bartender and ask them to make it a virgin, and to make it really tasty or she’ll send it back…which she has on occasion, stating that it’s bland with not nearly enough alcohol in it!
They really rise to the moment! They whip the egg whites for her whiskey sours, add a sweet green syrup for colour and taste, add one or 2 other beverages to fill the glass and even top it off with a little umbrella from time to time. Whatever Mum happens to order, they make it interesting and flavourful enough to disguise the fact that it is alcohol-free. She loves whatever they make her, and usually orders a second.
There are a few restaurants in Mum’s neighbourhood where we’ve been to several times, so the staff know her well. At her favourite pub, as soon as the bartender sees her now, he calls from across the room, “A Whiskey Sour for Mum! The special one. Coming right up!”
Dancing In The Aisles! Karen Harrington
Surprisingly, in the earlier years the happiest memories happened when we were travelling. Some people may want to shy away from travelling with someone with Alzheimer’s but I believe if you go prepared and don’t wear yourselves out, the experience will definitely be worth it.
I never attempted to travel on my own with Grant after his diagnosis, and so having family or friends to help out with everyday stuff is very important.
One of our earlier trips was a cruise that we took with Grant’s sister and brother-in-law. Cruises allow you to travel with a lot more luxury and not having to move your luggage from hotel to hotel saves a lot of hassle and is better for the person with Alzheimer’s as they don’t do well with a lot of change.
I made sure that we took lots of pictures and I often look back at these and am so glad that I have these happy memories of Grant smiling in the sunshine and enjoying himself with loved ones. I started compiling our trip photos into ‘Photo Books’ which you can make with various computer programs. The pages allow you to write in the location and what you were doing and these were an easy way for Grant to look over our photos after we got home.
One of my fondest memories is the time we went to watch a line-dancing demonstration on our cruise ship. It was after dinner and we went up to the pool deck on a warm summer evening while our ship was cruising the Mediterranean.
We settled down on a couple of the lounge chairs to watch the dancers and before we knew it Grant had decided to go up and join the ladies on stage. He was having such a great time and of course had no idea how to line dance.
He proceeded to weave his way between the rows of ladies with his arms waving and smiling like a naughty boy. The women were laughing along as this handsome and well-dressed man joined in the fun.
Meanwhile, Grant’s sister, brother-in-law and myself were laughing so hard we almost fell off our chairs. Grant always loved to joke around but there was a certain release of inhibitions that happened that night which he never would have done before.
We all had a great time and when I think back on what I’ve learned caregiving for my husband I try to focus on these happier times and how thankful I am that we did travel and have these wonderful memories to recall.