It was suggested I join this group by another person on another Alzheimers Group I joined. I am so confused, I feel as though I no longer see the light at the end of the tunnel, I fear it's a train headed my way. My DH was diagnoised with Alzheimers last October, he is 54. For months before I felt something was different but I couldn't put my finger on it. He was unable to hold a job for more than 3-4 weeks and then for no unapparent resason, he was layed off. This is a man that has worked all his life, 30 years at one job if that tells you anything! We'd been living from my one paycheck to the next, trying to make the house payment and our regular bills. Finally last July I was able to save enough money to purchase Private Insurance for him. We went to a local MD who sent us to U.C. Davis, after many visits and intense testing I was told it was Alzheimers. I was just beside myself and have not been the same since. We don't have much, yes we have a home which we are still paying on as we just moved and purchased it about 5 1/2 years ago. We have a new car just purchased when we had to sell DH Truck, my car was old so we figured we better get a reliable means of transportation. We also have our regular household bills just like everyone else. I work full time, but having DH at home alone during the day is creating some problems. I've gone to see a lawyer concerned about what will happen when DH has to be cared by someone else. How can I work and care for him??? The lawyer told me, they would probably take his IRS (our retirement money) his small retirement from working 30 years at one establishment and his SSD. They would not take our home or car. So I face another delima. If I quit working to care for him, what income do I have? SSD says that money has to be used for DH, okey but what happens if he has to go into a care facility? What do I do to maintain our home? I am so confused and scared. Our local Alzheimers group never talks about us the people who care for our loved ones, it's always how to care for them. God, I could go on and on. I feel I have nowhere to turn. I need help. Thanks for listening. Rae Ann
So sorry you are having to deal with the disease Rae Ann. You will be thrilled the person sent you to this group of spouses who care for their AD spouses. there is alot of good handson advice on just about every subject. many knowledgable folks here who can help you during your journey. its horrible when this disease strikes so young like your dear husband in the prime of your lives. start reading the message boards there is a wealth of info here that will pertain to many of your questions. i am inhome caregiver to my AD husband now 9yrs'+ and running and he is 17yrs my senior.. its a hard journey but having somewhere to vent and get advice is a godsend. Divvi/Texas
Welcome Rae Ann. You have found the right spot. There are so many people who know about all sorts of things here. Don't despair. Any questions you have will be answered. Do you have children at home?
I think you will get a lot of help and support here. I know I have. My husband was "officially" diagnosed a year ago, but we have been having problems and signs for 3 years. He is 62, I am 50 and working full time. I know how you feel. This is some very scary new territory and there is no map. But there are lots of people who can help and offer information, advice and support. There are lots of people here that can help steer you towards different organizations, what paperwork you need to do, etc. I will leave that to them because I am so new to it too.
Here are some things that I did that helped me: 1. Lots of small steps, one at a time. 2.Call your local ALZ chapter and make an appt with the "Family Care Consultant", the one I met was so helpful. She gave me lots of information on what agencies, funding sources and stages of care. It was invaluable. It was also overwhelming. I couldn't look at the paperwork she gave me, until 2 weeks later. 3. Take extra special good care of yourself--SO IMPORTANT! 4. Don't try to do everything yourself.
Keep coming back here, you will receive overwhelming support. My heart goes out to you. Sending you strength!
I'm sure Jane will be along soon ... she is our resident guru on all things financial. In the meantime, she has written many posts on earlier threads that you may find helpful. I found several using "search":
Elder Attorney, started by Jean21 on 06/02/08
Need Opinion on wills,etc., started by Anita41 on 04/06/08
Divorcing your AD spouse - A way to keep assets?, started by Admin on 02/22/08 (Don't let the title of the thread scare you ...)
(Use the little "search" box in blue at the top of the message boards, and enter part or all of the name of the thread, using "topics", to locate these threads.)
Rae Ann, sorry you have to be here but you have found a wonderful support group. I am a recent member of this site and don't seem to have all the words of wisdom that others have, but I'm learning alot and It is such a relief to communicate with people who understand what you are going through. After visiting this site I feel as if I am being lifted up by loving hands, it's very comforting.
Go to the Alzheimer's Association, if that wasn't where you originally came from. (I came from a different support group, so I don't take it for granted that you already know about them.) Get their 24/7 800 hot line number and write it down. (That is how you find your local group in any case if you don't already know who they are.)
And call them. The first thing they will do is "talk you down." They are the most patient people I've ever come across, and if you need someone in the middle of the night they are there. They will also send you packets of information. And have the local chapter call you.
You can use their case worker, but frankly it wasn't the best choice for me. I would have done better with the case worker from the local aging agency. Check state and county government for that agency. Mine was county government, but I know at least one person who actually found services at the township level if your local area has township level.
Where I live the agency does seniors and also adults older than 18 and younger than whatever the age seniors start at in the same office.
You need emotional help and you need practical help. You will get some of both here, but you also need to make contact with your local agencies.
And welcome...I wish you didn't need to be here, but you have found a good place to be since you do need to be here.
I wrote a welcome note to you in another discussion, because I hadn't seen this, your first one. So, welcome to my website; take a deep breath and calm yourself. We're here to help.
First, go to the home page of this website - www.thealzheimerspouse.com- and read the "Welcome" note right under the bride and groom logo. It is a perfect place to start. Click the Blog links it gives you, and make sure you read the one on "Help for the Newly Diagnosed". That gives you lots of practical advice on where to start.
On the left side of the website, click on "previous blogs", and scroll through the topics - click on and read the ones that interest you - I can assure you, you will relate to many. Also on the left side, at the bottom, click "financial" - that link takes you right to all the financial information from the Alzheimer's Association.
When you get a chance, click on the left side topic - Alzheimer's Amazon Book Store - there are many basic books on caregiving that may help you.
Call the Alzheimer's Association -1-800-272-3900 - tell them that you are new to this - ask to speak to a social worker, and try to get into a Support Group.
Rae Ann, Welcome to this wonderful group. I am also a new member, however, I have found many helpful tips & great support. My husband is 57 years old with dementia, he has not been diagnosed with Alzheimer's. He has suffered from Absence Seizures for the last 8 years, so as of now the Neurologist thinks his dementia is from the seizures. Doesn't really matter though he still is at a 5-6 level on the Alzheimer's chart. Hugs, Kadee