Daughter of early onset dementia patient... how to deal ?

donyellemoniquex3
donyellemoniquex3 Posts: 2,384 Member
edited January 1 in Motivation and Support
I learned late last year that my 52 year old mom has eod... which explained a LOT of what was going on. Even had to buy my own birthday and christmas presents.

but today she was on the couch (like she always is :grumble: ) and I told her "Hey mom, I'm going to Patco (local exxon-mobil handyshop) to get a monster and energy bar" which she said it was fine.

I come back from the trip (which is only about a 15-20 minute walk depending on how fast I walk, any distractions and traffic) to her SOBBING... "I went all over the house screaming your name and I didn't know where you went. I thought you left me. I kept yelling DONYELLE all over the house" I told her "well you knew I was going to Patco" and she was all "well I didn't remember until you walked through the door"

Replies

  • monkeefun
    monkeefun Posts: 271 Member
    I am so sorry your mother has dementia - it is awful seeing what it does to people, and the toll it takes on them and their families. Speaking as a nurse who takes care of quite a few people with dementia, it takes a LOT of patience. Don't be afraid to accept or ask for help - your family will definitely need it as the dementia progresses. I don't know what your situation is, or your family life, but I really hope you (and she!) have a good support system. I truly feel dementia is one of the hardest illnesses out there to deal with. I am sorry this is affecting your family, especially so young :-(
  • donyellemoniquex3
    donyellemoniquex3 Posts: 2,384 Member
    That's the biggest thing. I am so sorry your mother has dementia - it is awful seeing what it does to people, and the toll it takes on them and their families. Speaking as a nurse who takes care of quite a few people with dementia, it takes a LOT of patience. Don't be afraid to accept or ask for help - your family will definitely need it as the dementia progresses. I don't know what your situation is, or your family life, but I really hope you (and she!) have a good support system. I truly feel dementia is one of the hardest illnesses out there to deal with. I am sorry this is affecting your family, especially so young :-(

    If I ever do become a nurse, I'll be 4th generation. The first night I heard her say "mommy has dementia" I cried myself to sleep TERRIFIED that I'd one day have it too.
  • monkeefun
    monkeefun Posts: 271 Member
    Seeing it as frequently as I do, I have to believe it's worse on the family than it is on the patient. I can't blame you for being terrified in the least - it's so scary. People with dementia need so much more patience and caring and routine. I give so much credit to the families who care for their "sick" loved one, because it is so hard. I know my great grandmother had Alzheimer's - as far as I know she's the only one in my family who's had it - and it scares me to think it's anywhere in the family.
  • Susann1963
    Susann1963 Posts: 126 Member
    I just finished reading a wonderful book. I am a Speech Pathologist, have worked with one EOD patient. The book is an easy read and may help you understand some of what she is going through. It is written from the perspective of a 49 y/o Harvard prof who is diagnosed. Its called "Still Alice". Very emotional. Best of luck to you and your family!
  • laurenw1992
    laurenw1992 Posts: 62
    Completely agree with monkeefun, i'm a carer who works mostly with dementia patients and most of the time it's hardest on the family. There are loads of organisations that offer great advice, spend a bit of time searching for those.

    Something a lot of our residents find helpful is to write things down for them, so next time you go out to the shop just leave your mum a little note right in front of her so she won't panic. Little things like that do help i promise.

    My Grandfather has dementia when he passed away and it killed my mum because he was convinced she was his own mother. It is a truly horrible illness. Just try to have patience with your mum, and try to get in contact with those who specialise in dementia care.
  • pavshop
    pavshop Posts: 48 Member
    Still Alice is a great book. We are dealing with AD in my family as well. My Step Dad is currently in a nursing home. He has been showing signs of the disease for the last 10 years, although he was not diagnosed until 7 years ago. He was not as young as 52. This is very sad. I urge you to get educated. Hire help as needed. look into social services where available. DO what you can to help Mom maintain her dignity and you to maintain your sanity. Please remember, anything she says or does, is the disease talking. DOn't hold her personally responsible. Help to keep her safe.
This discussion has been closed.

Categories