Compassion key in coping with dementia

Hey there, time traveller!
This article was published 24/08/2021 (1817 days ago), so information in it may no longer be current.

Dear Miss Lonelyhearts: This is in response to “Fearing the End” who talked about her mother not remembering her name, and her sister (a nurse) telling her not to correct her. The sister is absolutely right. I’ve worked with the elderly and those with these disabilities. I’ve done courses designed to simulate the sensations in an Alzheimer’s or dementia patient’s mind and body.

The first thing we’re always taught is that you should never correct a person in this situation. They don’t remember who you are every day; one day you might be their sister, husband or best friend, even if you’re really their daughter or son. They don’t remember you have recently had a baby every day; so why do you have a child in your arms? None of this is because they don’t care. They always remember they care for you and that you are important, it’s just their perception of time means they can’t place you in their timeline. A son might be referred to as husband because in the time their mother is trapped in, their son is 14 but this man is in his 30s so that means he’s their husband, because their husband is in his 30s.

All you’re doing when you correct them is confusing them, blaming them, making them feel horrible for forgetting. You’re not helping them remember or helping them make sense of the world, you’re making their days difficult and painful (this extends to those who revert to their mother tongue because they start to forget a language that wasn’t their first). So just be whoever they need you to be, even if it hurts you, because isn’t it better to bring our loved ones comfort in their final years, rather than pain or stress? If you’re working with people who are struggling with Alzheimer’s or dementia, be aware of this too. If you have a certain accent or you look like someone from their past, you may trigger memories in them (for better or worse), and they may be difficult as a result, but just be kind because you don’t know where they are in time and space.

Many years ago, I worked with a man who was in his 90s. His most recent memory was when he was 14. He thought I was his mother because I looked a lot like her (from what his son told me). So I didn’t correct him when he called me Mom. I allowed him to do that because it brought him comfort. I adjusted my tone of voice to hold the firmness and kindness with which a mother speaks to their children (whilst still maintaining the professionalism necessary), and you know what? He was the most co-operative patient I’ve ever had. When the nurses struggled to get him to co-operate, I would be able to redirect him, because to him, we had a bond that brought him comfort. When he passed away, it was a sad affair but it was made better by talking to his son who let me know I had made his final days comfortable.

— L.G., Winnipeg

Dear L.G.: Thank you for your beautiful letter. One can only hope if our loved ones lose their memories or sense of time, they will experience educated and loving nurses and caregivers like you. Too often family members don’t understand Alzheimer’s/dementia, and are personally affronted when they are forgotten, or mistaken for someone else. Then they humiliate the person by explaining their big mistakes. Your way of “going along” with the patient is by far the kinder, more compassionate way.

Dear Miss Lonelyhearts: Something is really wrong. My wife says she doesn’t want to come home from the lake where we have an all-season cabin. She has proposed we visit back and forth like we have all summer on weekends, and she’ll continue working from there. I want my wife back! I didn’t mind this summer (and understood her desire to be there), but I had no idea it would come to this. I asked her hesitatingly if she’d like me to move out there with her — and there was a too-long silence. I’m tearing my hair out! Does she have someone else out there? I love her! Please help!

— In a Burning Panic, Winnipeg

Dear Panic: Get out there for more than a week, and try to find out the truth. Something’s up. Either she spent the summer contemplating being married to you, and/or there’s already an alternative person she hasn’t mentioned. It may be a lifestyle choice — she now loves lake life and you prefer the city. Unless there’s an all-out fight and breakup on the phone, talk to your boss and go for two weeks — and don’t spend much time working on your computer. You need time to reconnect and talk about every last thing with your wife, as your marriage seems to be in jeopardy.

Please send your questions and comments to lovecoach@hotmail.com or Miss Lonelyhearts c/o the Winnipeg Free Press, 1355 Mountain Ave., Winnipeg, MB, R2X 3B6.

Miss Lonelyhearts
Advice Columnist

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