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Understanding Early Onset Alzheimer's
Dear Chelle, I want to extend a very warm welcome to you. I am so very sorry for what is happening and can understand the concern and stress this must be causing, it must feel as though the very earth has shifted under your feet; he is so very young.
I am really glad you have found this wonderful place; we are all here in support of one another and that now includes you too! When first facing this, there can be much emotion and grief to deal with, but there are also some important practical matters that need early attention.
There are some basics that you may have already taken care of, but just in case, I will mention some of them anyway.
1. The most important thing is to build a good care team around yourselves. Having an excellent dementia specialist as part of that team is very important as you move through the future. Having support from family, friends, etc. can lend much to your journey.
2. Get legal advice from a Certified Elder Law Attorney as soon as possible. This specialty is important as there are so many specific dynamics related to such a diagnosis and the Elder Law Attorneys are best suited to know and address them so you can get positioned well for the future.
3. Sometimes it is helpful to have a counselor you can speak with so as to have a place where you can openly discuss your feelings and help with perspective. This can be very good support.
4. The Alzheimer's Assn. has a Helpline that can be reached at (800) 272-3900. If you call, ask to be transferred to a Care Consultant. There are no fees for this service. Consultants are highly educated Social Workers who specialize in dementia and family dynamics. They are great listeners if you need someone to talk to, they are very supportive, have much information and can often help us with our problem solving.
5. As JJAz has mentioned, if you have not yet applied for disability with the Social Securty Office, it is good to get that going as soon as possible. With Young Onset Dementia, they have a compassionate component for rapid processing and it really is much faster.
It is important to remember that every person with the diagnosis of dementia is different from the next. Not everyone has the same experience, the same symptoms or the same problems.
There is much support to be found here; it is a safe place where you will be completely understood as we are all or have walked similar journeys. There is also a lot of helpful practical information to be shared and those who are farther along with their caregiving often have excellent helpful information to share.
It sounds as though you and your husband really enjoy your grandchildren. Hang on to that and create those moments of joy in as many ways as you can and do not forget to give yourself some breaks too; it is important not to forget to take care of ourselves.
With warmest of thoughts being sent your way,
Forgot to mention some of the better books one can either buy or check out from the library. Remeber that not all persons with dementia will have the same set of symptoms or behaviors; but it is good to have as much knowledge as possible. There are many, but the ones most often recommended are the following:
"Alzheimer's Action Plan," by Doraiswamey and Gwyther of Duke University. Lots of basics and listing of helpful entities one may wish to look into.
"The 36 Hour Day," by Mace and Rabins. This is one is a bit more advanced and addresses many issues.
"Learing To Speak Alzheimer's," by; Joanne Coste. Lots of practical information.
One of the best readings which really discusses behavioral symptoms which may or may NOT occur with your Dear Husband, (DH), is found online and is free of charge and can be downloaded and printed if you wish - it is:
"Understadning the Dementia Experience," by Jennifer Ghent-Fuller (Dementia specialist)
There are a host of good books written for children of varying ages that explains Alzheimer's Disease; if you use Google, you can survey them for the ages and content for your beloved five grandchildren.
We have done that. Thank you
Their behaviors can vary so wildly. Its impossible to predict what yours may or may not do, in what order. My DH also lost driving very early. He had no idea where he was, nor where he wanted to go, or why.
The grandkids, about same ages as yours, were fine. Children, I think, just accept it as more weird grown-up behavior. “Grown-ups act funny anyway,” with big sigh. The older ones were just told aomething like “Grandpa’s mind gets confused sometimes. We have to help him a little.” We did not use Alzheimer’s word with them, nor go into detail. If they asked, or wanted specifics, we told them but tried to keep it general, not tell more than they wanted to know.
Another book I found very helpful, and easy to read, is called “My Two Elaines,” by a man about his wife’s journey through Alzheimer’s. It’s not “just” their story, there’s lots of practical tips and advice that could help anyone. But he has lived it and become a major spokesman.
I thought “Understanding the Dementia Experience” online that Jo cited is great, invaluable. I copied and gave to kids, but they thought it was hard to read. I still thought it was great!
Some of our kids compare caring for DH to looking after a larger toddler. You learn to think ahead, and stave off potential problems. Like, my DH lost important mail and documents. I have to hide them now. Watch your finances and money. Many quickly lose the ability to make money decisions, spend like crazy or fall for scams..
You may want to copy his DL and important wallet papers, many constantly lose wallets and other items. They will “put it up” in some weird place and forget it.
But they are all different, and do different things.