Voices of YOAD
All of the words that you’ll read on this page are directly from those who are personally fighting young-onset Alzheimer’s disease, or caring for someone who is. Please, read their stories, learn about their struggles, and feel the fear in their words.
Its 2:30 am and I just got off the phone with the alz assoc. help line.After thirty minutes of discussion she basickly told me she could not help me. My husband is used to me reminding him to do everything (what most poeple call nagging). Things arent getting done now. Important things. I try to get us help and I get things started but cant finish them and he gets sidetracked without me nagging him so then what? He cant take care of me and the kids and pay bills! Something has to give, but what?
I try to get help, and freinds help out for a while until their life gets in the way. I ask for help from alz assoc. and they cant help me. Your family and freinds need to do that hey say.
I cant cook unless Im supervised. I cant drive, I need someone to go with me to dr apts to explain from one dr to the next so they can all stay on the same page but I never have the same person to take me.
My husband is trying to make ends meet and I need to pay for help! Where am I supposed to turn. There is absolutely no one out there for us, the victims of early onset alz.
How do I get help when every time I ask Im told go somewhere else.We need a group to help us!!!!!
I am in the thick of this right now. Emotionally it is killing me, financially we are devestated probably going to lose our house, physically I have 3 buldging discs in my back. I am raising 2 teenagers who are losing so much and tend to take out they’re emotions on me and lastly the thing that confuses me most. Most of my friends left in one way or another. That’s why I’m asking for support.
“My husband was diagnosed at the age of 52 with Ahlzeimers [sic]…He is now 54 and is in the moderate/severe stage….he was diagnosed when he could not remember how to do the work he had done for 25 years…He lost his job and then went through 10 jobs in 8 months. We have a daughter 15 and a daughter 16…I have to work full time and we have no family to help. I have looked into support groups and they are all designed toward elderly and all tell me there is very little out there for people in my situation. We lost our house and have been through a horrible 2 years. There are services for those who have money but we live on my hisband’s [sic] disability and my income and there is no room for additional payments.”
“I was diagnosed at age 52 with Alz.; I have children aged 11 and 14. I too lost my job. Unfortunately, early diagnosed patients have few resources. I was working with my local Alz. Association and even the early onset group is comprised mostly of folks over 65. I feel lost sometimes.”
I am sitting here so overwhelmed that my mind is going in a dozen different directions at once. I have to start a dialogue with you somewhere, because I have been so frustrated over the 3 1/2 years I have been a caregiver with the lack of attention given to EOAD. My wife was diagnosed at age 59 with AD, I am essentially her sole caregiver, and every resource I’ve seen, including the Alzheimer’s Association, seems to only recognize AD as a disease of the elderly.
I am slowly losing my partner of 26 years, the mother of my children, my helpmate in household financial management, my partner in ensuring we have clean laundry and the cats’ litter boxes are changed.
And all the resources I find tell me how to handle 87-year old mothers or 92-year old fathers.
I’m literally too overwhelmed with the discovery of your foundation to go on anymore at this time. But you will hear from me again.
A drink of cold water in the desert? No, this is much more important than that.