My husband of 3 yrs. was diagnosed with Alzheimer's/frontotemperal dementia on Feb. 2013. Life is not easy. Anyone else like me out there?

Follow
Share

My husband is 53 years old. What I thought was cute and quirky about him, and his impulsiveness, was actually the onset of dementia. We were engaged to married and planning our wedding, when all of a sudden, I came home from work one day, and he was really disoriented. I called the Doctor and took him in. We then spent the next 6 months going to doctors to find out what was wrong. He was first diagnosed with Alzheimer's through a lumbar puncture. Then a few months later, a PET scan showed both Alzheimer's and Frontotemperal Dementia. He is declining faster than I had hoped. Showing more of the dementia signs, than the Alzheimer's. My son and I provide care for him. My husband chose not to drive as soon as he found out. He has recently started waking up angry everyday, having delusions of people throwing things at him. I am at home for now because I lost my job, and am struggling to find something closer to home. I have not been able to find anyone else similar to me and feel like there is no support available for wives of younger onset dementia. I am not able to find anyone who can relate to what I am going through. I have no support other than talking with his mom, who lives in another state. I don't know where to turn for support.

This question has been closed for answers. Ask a New Question.
Find Care & Housing
10

Answers

Show:
Kokopoofs, please check out the sites I referred to above for FTD. Thete is also a section there for related diseases like the CBD. See you there.
Helpful Answer (0)
Report

Hi I'm new to this site and also with the same problem my husband has dx of 1st alzheimers all tests came back positive then 2 neurologists feel he does not have the typical ALZ they feel he has FTD and in addition to FTD possibly a corticobasal ganglionic degeneration (CBGD). He was diagnosed in March of 2013 now he is 53yrs old out on full disability. 3 doctors told him to get his finances together and he was told not to drive by all of them. I was fortunate enough to land a city job with full benefits thank goodness because my husband lost his. I agree that there are not enough resources for younger onset. And the doctors don't warn me of what to expect...be careful this might happen or that. If they did it would lessen the shock when it does. I've been married for over 26 yrs with no children he is my life and I was his. I married the most gentle, easy going, kind man but he has changed in all ways. I can't remember the last time I saw him smile. Even though he is still with me I really really miss him.
Helpful Answer (1)
Report

Most people don't know about FTD and will tend to focus on the AD because it is more well known. AD caregivers are often befuddled when hearing about the FTD behaviors. The Alzheimers association covers other dementias, but if you call there you may end up with a volunteer who doesn't get the difference. Many of the techniques that are good for AD patients, like therapeutic lying and redirection are helpful for FTDers too. However, some of the AD medications should NOT be given to people with FTD. A support group for caregivers of AD patients is good, but the other people just won't understand the difference between the two dementias. My advice is concentrate on the FTD aspects because those quirky issues are going to cause a whole lot more problems now than the AD. Keep working yourself. Get the legal stuff in order, DPOA, will, living will. From your posts I can't tell what he is is doing now so can't offer specific advice there. While you are working, what is he doing now that he's been fired? Is he wandering, driving, shoplifting, drinking, behaving inappropriately in public, or apathetically spending his time in front of the tv watching some old program without the sound on? The best advice I have is to please, please go to the FTD sites I wrote about earlier. You will find lists of commonly reported symptoms at different stages, a really caring international group of people who will share their experiences. Someone has always been down this path before you and understands and can help. The forum site is excellent and even though I've just been there a short while it has helped me a lot. You'll find people who are having trouble getting the FTD diagnosed to those who have just lost their loved one. Going back to the AFTD organization, sign up for their email newsletter. You'll be asked if you want to be in touch with others in your area who want to communicate with someone about FTD. If you want to respond on this forum you will get support and helpful advice. But please go to the other forum where it is much more tailored to your exact needs, I promise.
Helpful Answer (1)
Report

Your husband is so young to have this diagnosis. Therefore darned discouraging. I can imagine that you would feel very alone. See if likely to Alzheimer's support group in your town. Give it a half-dozen meetings to ascertain if it speaks to you.
Helpful Answer (0)
Report

My sympathies for what you're going through. You should contact the AFTD, association for FTD and ftdsupportforumdotcom. There are FTD support groups around the country, the one in my area happens to meet at night. Has your husband had an MRI, PET scan, spinal tap, extensive neuropsychological testing? The MMSE isn't much good for FTD diagnosis. There are doctors who know zip, nada, zilch about FTD, like our own regular doctor. What type of FTD do you think he has? The behavioral variant seems to drive most spouses crazy early on. If you get a diagnosis of FTD apply immediately for Social Security Disability because they will fast track that diagnosis for approval.
You should read the book edited by Lisa Radin and her son , What If It's Not Alzheimers? Be sure to protect your finances from his quirkiness. That's a common problem. The sites mentioned earlier will help you immensely because of the way the FTD seems to dominate over the AD. You will get support and information from people who get it. See you there.
Helpful Answer (1)
Report

My husband is 60. My first hint of a problem was in April. In May he was let go from his job for mistakes (totally out of character) and now were to the point that he can't have a rational conversation. Dr believes it is FTD but tests have not been helpful. Also looking for a support group. Husband has always been quirky so many early signs were missed. I work so need support group at night.
Helpful Answer (2)
Report

I can't tell you how much compassion I have for you and your husband of three years. We think we're going to live happily ever after, perhaps a second time, and life hits us in the face with a pie. I am soooo sorry.

Your husband is so young to have this diagnosis. So darned discouraging. I can imagine that you'd feel very alone. See if there's an Alzheimer's support group in your area. Give it a half-dozen meetings to see if it speaks to you.

Prayers sent your way. God bless.
Helpful Answer (2)
Report

I hope you find a local support group that comes as close to your situation as possible. Ideally it would be for spouse caregivers of early-onset Frontotemperal Dementia. That is not likely, but find something as near that as you can.

I joined a support group for caregivers of persons with Lewy Body Dementia. I found it invaluable. I'd earlier tried an Alzheimer caregiver support group and found it far less helpful for may particular situation.

My heart goes out to you.
Helpful Answer (1)
Report

These are support groups in Mesa from alz.org

Red Mountain Active Adult Center
7550 E Adobe (Classroom 5)
1st & 3rd Friday, 2:00 pm
* Respite available, call 480.641.7644 in advance

St. Mattew United Methodist Church
2540 W. Baseline Road (Bldg. B, Room B-12)
1st & 3rd Thursday, 7:00 pm

Sunland Village East
2145 S Farnsworth Drive (Saguaro Room)
3rd Thursday, 1:00 pm

Hope that helps. alz.org is an excellent website.
Helpful Answer (0)
Report

This site is a great place to get support in my opinion. I came here when I was trying to get my cousin, who have POA for, get into Assisted Living. She suffers from significant dementia and it's believed to be Alzheimers. We're getting ready to start more tests soon.

This must be very difficult to handle. To be ready to start your life together and then be dealt this news. There are people who will help you find information and resources.

Is your husband able to discuss his concerns, wishes and desires for the future? Do you know what stage he is at?

I would think about the future now so you can make plans.

Do you and your husband have medical insurance? Long term care insurance?
Helpful Answer (0)
Report

This question has been closed for answers. Ask a New Question.
Related
Questions