“What is it really like to deal with the reality of Alzheimer’s?” reads the Quora question.
The short answer is: terrifying, demoralizing, exhausting, draining, all-consuming and thankless. It can also be uplifting, joyful, rewarding, magical, inspirational and enlightening. It’s a living roller coaster ride like none other. It pays to look at it from a glass half full perspective for the benefit of all concerned.
The 36 answers to the Quora question recount variations on the same tragic theme: the painful reality for many primary caregivers is a daily grind of repetition, frustration, helplessness and hopelessness which some willingly endure for love and others undertake because they have no choice.
I share this account by nurse Bianca N. Diesel because of the similarities to my own experience (no doubt the story will resonate with many others as well); Ms Diesel writes:
My mom just got off of 72 hour suicide hold because she decided that it was better to just end her life than to continue taking care of her mother with Alzheimer’s. She has 2 brothers that haven’t helped take care of my grandmother at all so mom has dealt with grandma full time for the last 5 years.
Five whole years of grandma getting worse and worse. We all almost stopped going around because just being around grandma for a short time makes US crazy. An hour at mom’s felt like ten.
“Would it be a hassle for you to take me to Middletown, Brianna?”
“Grandma, you’re IN Middletown.”
Five minutes later.
“I need to go home to my house in Middletown.”
“Grandma, you live here and this IS Middletown.”
Looking puzzled, “I OWN my own home. I need to go there.”
“Grandma, you live here with mom. You sold your house years ago.”
Then mean, “If I sold my house then what did YOU do with the money?”
Repeat that 50 times. And then she’d tell me I have a nice ass. Also, Brianna is my cousin. That was just the hour that I was there. Mom dealt with that 24/7. No one wants to spend time there anymore. No one wants to call mom anymore because you can hear grandma in the background, constantly interrupting with the incessant questions.
So, mom had a meltdown four days ago. She couldn’t face putting grandma in a nursing home and her brothers were being selfish with their lives. She couldn’t even sleep at night without grandma coming into her room multiple times a night and asking for a ride home. One night she woke up to find grandma in the kitchen with a big knife trying to cut an apple.
Another, grandma was out on the back porch with a few bags of clothes packed up, ready to leave. Grandma had begun to urinate in garbage cans in her bedroom and had defecated in the floor in her bedroom more than once. Mom had had enough. Grandma is in the hospital right now. Guess she’ll be going to the nursing home this week. This is the reality of my grandmother having Alzheimer’s and how my mother attempted to take care of her without sending her to a nursing home. My mother has rheumatoid arthritis and is in pain most of the time. Also, she is a retired ER nurse.
*My grandmother died on November 14th, four months after I wrote this. She died in the nursing home.
Like Bianca Diesel’s grandmother, my mother also died in a nursing home. That fact too, broke my heart.
If you are a caregiver, find support. Look for these support groups on Facebook:
- Forget Me Not
- Alzheimer’s and Dementia Caregivers Support Group
- Dementia Aware
- Dementia Caregivers Support Group
- USAgainst Alzheimers
Additional sites, blogs and resources here.
Image copyright: sifotography / 123RF Stock Photo
8 thoughts on “the heartbreaking reality of caring for someone with alzheimer”
Another great site on Facebook is Dementia Aware and purpleangel-global.com are making great strides across the world to raise awareness of exactly the above problems. This article reflects the stories of many many carers, including myself, who despite our best efforts are finding it difficult to cope. Together we will beat this and find that cure.
Thanks for sharing this information Jane, and yes, it is EXTRAORDINARILY difficult to cope. I think people who haven’t done it don’t really get it as I allude to in this post: an open letter to everyone who knows what I should do before I ask their opinion
What a letter! Thanks for putting it all on to paper – No-one knows until they are with their mum every day and go through all together. But despite this there is so much joy in knowing my Mother’s dementia. It will always by a foe but I am thankful at times to be so close to someone I love with all my heart.
Yes, it is a tragedy and a blessing at the same time ❤
Am reading and breathless. Do I send this to my mother’s husband, his primary caregiver or not? I don’t want him afraid of what is coming, but I also want him to know. They are moving into a retirement community with a memory wing at the end of this month in anticipation of her future needs in mind.
Good they are moving into a community. Hopefully there will be support there. This story is one of caregiving at home. Caregiving at home is soul-crushingly difficult….
Whatever decision you make will be the right one… ❤
I just found this while googling myself, embarrassingly enough.
Thanks for sharing the story.
LOL Bianca! I’m glad you found Mom and me and your shared story. Thanks for telling us how 😉