Have you had experience with a family member or loved one with dementia? What was/is that experience like?
No, thank goodness I have not. But I do know people who have and I understand the experience is very difficult.
My mother-in-law died of Alzheimerās disease. The worst part was watching her change from an independent woman to basically an infant unable to do anything for herself. IN the family, she forgot her grandchildren first because they were growing and changing and she couldnāt keep up with that. Then she forgot her sonās (my husband and his brother). I donāt think she knew her husband anymore, but he was familiar because he visited her every day. When she died, our minister commented that my husband didnāt cry. Her replied, āI lost my mother years ago.ā
I have had a personal experience with my mother-in-law suffering from dementia and it was extremely challenging. Literally answering the same questions over and over in a short period of time. And phone calls in the middle of the night - her being confused and scared. It was difficult when we had to get up early to go to work after our sleep being disrupted multiple times in the night. It made me think long and hard about how important it is to keep your mind active and busy and stimulated. I recognize this may not always help, but itās important nevertheless.
My husbandās sister died last month. Her decline was similar to your description, Marcia. Initially, she could carry a phone conversation and then not. Initially, she was active and then not. On and on. We live about 700 miles away so didnāt see her often, but he did try to talk to her often. She, too, kept repeating the same questions. My husband always told her that he would answer her repeatedly with patience, kindness, and caring. He did. Iām proud of his acceptance and willlingness to always meet her wherever her mind was taking her at the moment.
Thanks to you folks for sharing such personal stories. I havenāt had much experience with any form of dementia, myself. My grandfather was in decline when I was in my teens, and one of the things I remember was that he forgot how to speak English (he was from Hungary originally). My husbandās father also had mild dementia before he passed, but the only real signs were that he kept telling the same stories over & over again (from WWII) and also lost his āfilterā and made very politically incorrect statements about the staff at his assisted living facility.
My mother had Alzheimerās for probably 15 years. She was able to live on her own for five years, thanks to help from us and paid care people. We then moved her into assisted living, where she was in the non-dementia unit for the first three years before moving into the secure area for seven years. I think she was able to do well for so long because she was in great physical health and she was a creature of habit. The one thing that never went away was her sunny manner and her kindness. She was one of the most loving people Iāve ever met. Eventually she had physical problems as well (that were in many ways more stressful for me). She passed away peacefully a few months before her 89th birthday.
This was a hard thing for me to read about. Iām 60 and my 63 yo husband is in a facility because of early-onset dementia. He doesnāt know me or our three children. I hate that he is like a child now, and he isnāt the man I married.
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Iām sorry to hear that, @Cheri_Mcelroy. I canāt imagine how difficult that has to be for you and your family.
Thank you. My children are all under thirty, and were very young when my husband was diagnosed. If nothing else, itās made us all closer and more compassionate.
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Sometimes unnerving because the timeline was not consistent. My mother would be discussing
an event āplantedā in timeā¦but relatives (dead for years at that time) would be included. We had
to āgo with the storyā as correction was too confusing and upsetting for her.
My heart goes out to you, Cheri. It appears your children give you strength now as you do for them.
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My father had it and it was heartbreaking watching him deteriorate. He had been an intelligent, family man who in the end, recognized my mother, but couldnāt name her. He used to keep score for his foursome in golf, but towards the end didnāt even know what to do with a golf club.
Dementia in all its forms is a horrible disease. The victims are robbed of life and those of us watching are so helpless as we experience the great losses. Any time I hear of any breakthrough or progress toward a cure, I feel extreme gratitude.
My grandfather had Alzheimerās and it was so tough. My dad is dealing with some memory issues now but there are some new drugs that are helping to slow it down. I had never heard of Lewy body before this book. It sounds heartbreaking.
My grandmother had dementia before she passed and it was awful. She got mean and belligerent. Very judgmental and often said inappropriate things to people I cared about. It was hard being around her. Plus she rarely knew who we were. She had moments of lucidity, but too often she just lashed out. Whenever she felt afraid or unsure, sheād resort to anger and would physically fight us. It was sad.
In a word - itās tough! They donāt call it the long goodbye for nothing. You never know āwhoā you will find on a given day. You never know if itās a good day or a bad day. They forget you, but you remember everything about them. A difficult disease for all involved. The main things is keeping them safe and comfortable and meet them where they happen to be on any given day.
Yes, my husbandās grandmother. It was so sad. I always said the worse part was when she was clear and realized what was happening and there was nothing anyone could do to stop the progression.
No but I have a friend who is dealing with the situation and it sounds so difficult.
Luckily I have only experienced a family member with dementia from afar. Not a close relative at all and was only there as support for his daughter.