Alzheimer's Disease Support Group
Alzheimer's disease (AD) is the most common cause of dementia and characterized by progressive cognitive deterioration with declining activities of daily living and neuropsychiatric symptoms or behavioral changes. An early symptom is memory loss (amnesia), usually manifesting as minor forgetfulness that becomes pronounced with illness progression, with relative...
Rollie's doctor just called me. She really understands my need for help and hospice. Unfortunately, she was very honest with me and it is about money.Not just the Va but everyone is trying to prolong our dementia loved ones from going into hospice. So that they don't have to pay for it. Keeping patients at home and us doing all the work is the answer to the money issue. Not fair, not nice but I agree with he that is going to be the answer. She said dementia it is almost epidemic and we as a country are not ready. All of this I already know.
She wants me to see if he will qualify for MediCal and try that route. She agreed with me when I said, that I need help now, not when he is completely bedridden. Now when he is still moving around and can fall, wander, not sleep, etc. is when it is most exhausting for us. So here is something that she said and I think I am going to try and do something.... I don't know what but something. She said we caregivers should start at a grass roots level and organize ourselves as a local movement. Form a coop of care where we work together to get what we need.
Lately, I have been feeling like something is calling me and I believe that my calling may be to work as an advocate for ALZ/dementia caregivers. Maybe this is my purpose. KInd of heavy, huh?
She wants me to see if he will qualify for MediCal and try that route. She agreed with me when I said, that I need help now, not when he is completely bedridden. Now when he is still moving around and can fall, wander, not sleep, etc. is when it is most exhausting for us. So here is something that she said and I think I am going to try and do something.... I don't know what but something. She said we caregivers should start at a grass roots level and organize ourselves as a local movement. Form a coop of care where we work together to get what we need.
Lately, I have been feeling like something is calling me and I believe that my calling may be to work as an advocate for ALZ/dementia caregivers. Maybe this is my purpose. KInd of heavy, huh?
I am with you on this..
I have been the disqualifying route and also told it is about the $....
I would work with you in a grass roots movement...I have thought about this for a long time and am determined to do something so, count me in I will do anything I can...I also think
about trying to do something about respite for us..no one is going to rescue us, maybe we can figure something out among ourselves and ll the Alz caregivers in the us.....
Ron & I aslo deal with Early Onset,,it is a particularly awful form of the disease...I just helped get our son off to college in Boston and I am holding my finger in the dike hoping he can finish up in two years.....it's awful trying to bring up children and then finish bringing up children with this....
I have angered Ron's doctors but I have asked them repeatedly to advocate for help for people like us through their contacts.....
This hospice thing seems to be a real farce! Wonder what would happen if you went with Palliative care and quit giving the meds?
Count me in for help in any way that I can.
love you guys...you are the reason I made it through to the end.
I wish peace for all of you.
Carolyn
As caregivers,I believe that we suffer as much from this disease as the patient.I think you should go for it......................Cheryl