AboutMary Gordon Expertise Several years direct experience as caregiver for family member who died of end stage AD. Did lots of research and dealt with a lot of health care professionals and caregivers over the 7 years from diagnosis to the end. Used various care options from community based resources to increasing levels of institutional. Mother of three, two born during our loved one's decline, so I know what it is to be the ham in the sandwich, taking care of the older generation and the younger at the same time and trying to balance everyone`s needs. Ask me, I`ve probably been there, done that. We made lost of mistakes and learned everything the hard way - but you don`t have to! If I can`t answer your question, I`ll steer you to a place or person who can.
Experience Currently a program manager for a large utility company. My Alzheimers experience comes from having the illness in our family. Out of necessity, we did a lot of research in order to understand the disease, plan for what might come next, and make the right decisions to help and support our loved one. Please note, I am a Canadian living in Toronto, and therefore am not the best person to ask about US regulations and insurance rules!
Question My mother is 98 in a nursing home and first diagnosed by a herpetologist with Alzhiemer's dementia about 5 years ago. several of her siblings were also diagnosed with Alzhiemer's.
My family was in denial until they were finally convinced after a fall, a stay in the hospital and the realization tha she could no longer live alone. Even after that they searched for assisted living until the Care Center told them that she would need 24 hour attention.
While she has only a grade school education, she is quite intellegent and worked very hard to maintain her physical and mental health by walking, reading, doing crossword puzzles, attending a day care center where she helped out and was very active in the apartment complex for the retired. She lived alone until she was about 92 and refused to live with anyone or have anyone in the apartment to provide nursing care.
The conflict continues with how my mother is treated. I refuse to tell my mother anything which acknowledges her dementia. An example is that I took her to lunch three days before her actual birthday and never mentioned the case. I avoid the question about her age with a humorous remark. I don't talk about the death of her family. Conversation is sparse and sometimes better then other times but very limited coming rom her.
When my family reports on a visit to Mom, it doesn't sound like they are talking about the same person.
Finally, my question, how should a person with severe Alzheimers treated? Should she treated with as I do which is to not remind her of her problems and the deaths in the family or as my siblings treat her with pity keeping informed about many of the unpleasant facts like " Mom, in just 2 years you will be 100." (It has been at least 8 years since my mother could remember her birth date or age.
Thanks for your response. It will help my wife and I to get through this difficult situation.
Answer Hi Matthew
Hi Matthew, sounds like your mother has been blessed with a long and relatively healthy life.
I would agree with you. What point is there to upset her at this point? She’s 98, and has dementia! She deserves to be surrounded by loving kindness.
Loved ones who visit should have as their only purpose to improve her life in any way possible – to make her comfort, serenity, and happiness their only thought. Nothing else matters. She should not be bombarded with negative thoughts or ideas at all.
Visitors should be thinking of ways to bring her up, not down. I’d be thinking – what can I do for her that’s nice, whether its to bring along a photo album of family, a book of lovely travel or animal pictures, her favorite food, a CD player with some favorite old songs, a soft teddy, a pot of daffodils – or bring in a pet for her to pat, a baby to kiss, a soft robe for her knees.
Family who know her best can use whatever abilities and awareness she has left. They should be wracking their brains for ways to bring joy. Her time is limited no matter what, so every visit should be a celebration of the fact that she’s still with you. Whatever she can still enjoy, including some humor, I say go for it.
I have limited patience with people who want the person with dementia to recognize and take to heart their own decline. I can’t imagine what is to be gained. She may not even remember the specifics of what was said that was sad or depressing – she may just retain the emotions. This is quite often true with people with dementia – their feelings can linger. If for example, they get angry about something, sometimes days later they can still be agitated even when they have no idea why. All the more reason to keep her at peace and content.
If negativity, grief and pity are what they are bringing in with them, better to stay home. When my mother in law was in later Alzheimer’s and could still talk, she would ask about her sisters and family. She had forgotten they had passed away – and we quickly learned, it was cruel to remind her. She would be like a little girl being told she’d been abandoned. We found it much better to reassure her and hug her - and tell her that her everyone was safe and together and that she would see them soon. Given that she had religious beliefs, this wasn’t even a white lie. How much kinder and more loving than confronting her with death and loss her poor injured brain could scarsely comprehend.
Heck, if they were going to visit a middle aged person with a serious illness, I’m sure it wouldn’t be appreciated if the relatives had nothing to report other than doom and gloom, and left the person sadder than when they came in.
Sorry for the rant. I'm with you. Treat her like a treasure, and leave the sad reality of her situation to others to deal with - not her.
