Okey, I'm completely overwhelmed right now. My DH was seen by our medical professionals last Friday. They have told me he can no longer be left at home alone. We don't qualify for the AD Day care, the cost per month is about 1800.00. Just about the amount of money I make working full time. If I quit to stay home with him, we won't be able to make the daily living expenses. Our case is some different as DH is young. Our home is not paid, nor the car. We basically need his SSD and my income to get by. If I have to stay home to care for him are there programs that will help me? I know I'm reaching for straws, but perhaps someone here has a similar situation.
Senior Services pays for my DH's adult daycare, thank goodness since I too have to work full time and don't qualify for Medicaid (DH is too young for Medicare). I just have to pay for the transportation to and from the facility. Do you have a Senior Services organization in your area? If not, check with the local chapter of the Alzheimer's Association. They may be able to give you information on how to get it paid for.
Hang on. I have to go out in a few minutes, but when I return, I'll do some research for you. In the meantime, hopefully, some others will give you more answers.
Someone else (I think at the Alz Assn site) recommended: www.NACA.com. "This is a wonderful organization that works to preserve home ownership. They help people keep their homes."
The Alzheimer's Association offers financial assistance. Contact your local chapter for information on their program, and for advice on other sources of financial support in your area.
You're in California, right? Check into the Paid Family Leave Program:
Also, check out the Family Caregiver Alliance National Center on Caregiving:
http://www.caregiver.org/caregiver/jsp/home.jsp
Under "What's New" (orange box right in the center of the page) click on "NEW! Family Care Navigator: State by State Guide" and then click on California. This has a whole pile of useful links.
If your husband is a veteran, you may be able to qualify for the Aid and Attendance benefit. This is a "pension benefit" and is not dependent upon service-related injuries for compensation. Most Veterans who are in need of assistance qualify for this pension: http://www.veteranaid.org/ http://www.vetassist.org/index.htm http://vabenefits.vba.va.gov/vonapp/main.asp
Rae Ann, you can call your pastor and ask if any retirees at the Church would be interested in staying with your husband. There are a lot of men who would be happy to take turns staying with him, maybe even going on walks with him, etc. Some will set up a roster and sign up for a morning or afternoon. Sometimes you can find ONE that he really gets along with who would be willing to earn some extra cash by doing it full time alone. Some people have been so fortunate to do so. I'm looking.
I am investigating this myself right now for my husband. Also, I also googled adult day care in my city and found one that I am going to go see tomorrow. The cost will be $945 a month.
Then there is a group that will send someone to the house to stay with him, and right now, I THINK I can get by with afternoons only, that would be $315 a week for afternoons only. That is why I'm trying to find someone at Church!
You can probably get an Alzheimer's grant for $500 in your state to help you with the first costs. Check with your local Alzheimer's Association.
If I find out anything more, I'll post it for you.
The California Department of Aging has "Area Agency on Aging Information and Assistance (I&A) providers" who assess the needs of the individual calling for assistance, links the caller to specific services, and then provides follow-up to ensure, when possible, that the needed services were received. The I&As give accurate and up-to-date information to seniors and adults with disabilities and their families about programs and services in their community.
I've never tried that out, but maybe they'd have info for you. Go to:
to find the phone number for your area. (Yes, I realize your husband is young, but I imagine they'll know resources suitable for someone in your position.)
The local aging agency here in the Lehigh Valley in Pennsylvania does services both for seniors and for people who are adults but not yet seniors. It is the same phone number and probably the same set of social workers. They offered me an in-home visit to set up a case file and that one was free. The visit from the Alzheimer's Association caseworker cost me $100. It isn't time for me to call the aging agency again, but when it is time I will take them up on their offer for services.
Although Area Agency on Aging is the general name for these agencies, the one in Pennsylvania is called something else and the "group" for not yet seniors is called still something else, but they are the same group. My understanding is that there is one of these in every State, generally at the County level, in every county.
Most states provide some sort of assistance to family members who provide long-term care. These assistance programs can include everything from help with finding and funding adult day care to providing counseling for the caregiver.
Programs, as well as eligibility requirements, vary greatly. For more information or to find a state office, contact the National Family Caregiver Support Program, a division of the U.S. Administration on Aging, at (202) 619-0724, or go to:
Kelly5000, if you husband is bad enough with the disease that he needs adult day care, you say he is to young for Medicare, You need to apply for Social Security disability for him.
Looks like things aren't going to go my way with this matter. I checked on the Vets, my husband missed qualifying by 7 months. In order to get A&A you have to have served 1 day during War Time, his would have been the Vietnam War which ended May 1975, he enlisted in December 1975.
Will check any suggestions or links any of you come up with. I did find out I can get 6 weeks of part pay from the State under California State Disability Insurance. I don't qualify for the 12 weeks of Paid Family Leave due to my empolyer having less than 50 employees. When it rains is pours.
Just as I thought - you didn't need me - lots of responses and good ideas.
The problems of EOAD patients are different because the patient is often too young to qualify for many benefits. (It's what Tony, Trish, and many others have been working to correct through political advocacy and publicity).
There is a woman in Oklahoma who is an Early Onset Coordinator. You can call her and e-mail her with your concerns and questions. Hopefully, she will be able to help you with information that not only pertains to your area, but general information related to services for EOAD patients. Her name is Joann Webster. Direct phone # is 918-481-7746. E-mail is joann.webster@alz.org. She is on family leave until July 25, but you can leave a phone message, and she is checking e-mails as she is able.
Thank you Joan, I'll slip off an email to her and wait and see. I'm finding out the hard way that "time" isn't what others are concerned about. Right now I'm having to stay at home with the possibility of losing my employment. Just what I needed another stress factor.
I am beside myself right now. I've gone everywhere today seeking help and all people ask is are you going to self pay or wait for Medical (which will take up to 5 months to qualify for). All I can do is cry and in between tears pray for something good to happen.
Your employer should offer family leave. Check into it. Wishing you the best. At least you know you have this site and all the resources it can offer.
Another thing: question: Do YOU think your husband could stay at home alone for a while until you get things sorted out? Doctors often say things in haste with no regard to the situation. I'm wondering if he/she thought ideally he should not be at home alone. What is YOUR take on it?
I'll bet that most of us were interesting children. We must have all been the in-charge type who handled everything. How else could we be trained so well for this job.
Mary, I think you must be right. I was the world's oldest 11 year old. I made all of my own meals and did all of my own laundry. I got penalized in gym because I didn't know how to starch my gym suit. Of course everyone else got their starch from their mothers.
I was the middle child and oldest girl from a ranch family. We lived way out in the mountains, so we were isolated for several winter months. We moved to town when I was 13. I meet DH at 15 and, at that point, was so grown up that I was ready to settle down. We married when I was 19, one year out of high school.
For a ranch life, it was pretty sheltered. Part was because of being raised in the traditional way, boys things and girls things. My two older brothers had a harder life on the ranch. I spent my time cleaning house and taking care of my youngest sister. I was expected to be "mom's helper." I would have rather been out chopping kindling.
So, when I meet DH and he treated me like "one of the guys," I just loved it. We have done everything together since.