Hello all. I got a voice message from the neurologist today (Sunday of all days) saying DH's MRI is evidence enough to call FTD without having to put him more tests and that he'll document what I need to file for disability. This is good because DH refuses to go to any more doctor and has a huge level of denial. He is 51 and we have a 6 year old daughter. I guess I can now file for disability and lie to him about how/where the money comes from, or should I tell him he has FTD? He is pretty happy for the most part, but is getting worse. Both our families live in Florida and we live in Montana. How does one work full time and take care of a DH whose getting worse with FTD so far from family to help out? I am in shock and don't know what to do...Thanks for your advice!
I'm sorry about the diagnosis. My husband has FTD but doesn't realize what it entails. I have no good advice for you as my husband has never fought me on doctors or filing for disability. Hopefully someone else here will have some help for you.
Marise I am so sorry to hear your terrible news. We have had other families as young as yours and I hope they come along for you. You do walk in the same shoes.
File for the Disability. Gloss over what's involved, with him. If Soc. Sec. wants any further medical veification beyond what's already provided (they pay for),tell him it's part of their paperwork crap. You need to do it. You can also tell him you're applying so you have income until he's better.<fiblet> Be sure they are informed of your daughter. There is provision for a check under his record for her support as well. Telling him he has FTD s up to you. If you do though, IMHO, be matter of fact and move on. I wouldn' get ino a discussion or details. Working fulltime and taking care of him and your daughter, etc. is going to burn you out unless you start taking steps right away. Find out about in-home help--availability, qualifications, costs. See about a special support for your daughter--"Big Sisters/Big Brothers", to give her an outlet especially for her, when Daddy and you can't do things you would normally do with her. I worked part-time from home for years, but it was a relief when the job was eliminated last year. I was struggling to keep going, and DH had deteriorated. Even though we are short on funds now, my stress lkevel is better.
Don't make major changes right now. Rather, get your Powers of Attorney--financial and medical in place, file for the disability, see what support services are available--when, how, cost, etc. Once you see what's possible, then you can put things in place.
My husband doesn't have FTD, but the whole brain radiation affected his frontal lobes, from what I have read about the dementia caused by it. If your husband is in a huge level of denial, I would expect him to become upset if you tell him. I got my husband to be screened for a brain tumor, because at the time that was all I could think of with his history of cancer. But once he was told by the radiologist that no tumor was evident, he was back in denial & wouldn't go to any more doctors. He too, thought he "was fine." I tried, but it just resulted in anger. Were it me, I'd skip telling him & move on to filing for disability for him. You have what you need to do this. Seems we have to become things we never thought possible, snoops (after financial disasters), liars (to avoid being yelled at.) You learn to do what you have to do.
I am so sorry this has to affect such a young child. There will probably come a point when you have to make a choice. Placing him to protect her. Others will advise you about working full time. I don't have the answer to that. Wishing you good luck on this tough journey.
I never told DH that he had AD, only that he had a memory problem and the doc was helping him with that. I don't think DH would have really understood what AD meant and I wasn't about to tell him the details & what was going to happen to him. Others feel they have to be honest and will insist that a loved one know what's wrong, that they have the right to know & then can make decisions about it, altho they can't make reasonable decisions anyway. Maybe it makes the teller feel better--being honest and all, but I don't think someone would say, "oh, now I understand, I feel so much better knowing that I have AD/FTD/VaD, whatever, and this is what will happen." Listen to Carosi & the others, good advice. If he's happy, I'd let that be. There are books for your little girl that explain things about AD & maybe FTD, I'd keep those away from him if you get one. I'm sorry about this, I hope others who have been thru the same thing will contact you. My children were already adults.
Normally I wouldn't give advice on something like this but since you are asking. And I assume you will weigh all the advice together with your own knowledge of your DH and your situation. I would err on the side of giving the person with the disease the truth about their situation. My husband may have FTD as opposed to AD and he was told from the beginning. He doesn't choose to talk about it a lot or even to research it like I do, so in a way he chooses denial when he wants and engages when he wants on the topic. As upsetting as it was to get the diagnosis it at least brought him major relief in having a diagnosis he could share if he chose to retire early and to embark upon a less stressful lifestyle. And as soon as it became obvious there was something MEDICALLY wrong he gave over most all his responsibilities regarding finances, etc. to me. I'm sure that was a major relief as he had probably been carrying an enormous burden of "covering up" for some time.
Marise, I am so sorry you have to join our group of FTD. My suggestion is that YOU read as much as you can on the subject. It is the most aggressive form of dementia. Filing for SSDI right away is important. Also look into your state social service and begin to learn as much as you can about future services that you will need. My husband was dx'd in Feb/Mar of 09 but has probably been showing symptoms since 1996. For now, I would suggest printing out info on FTD and leave the info where he can pick it up and read it when he wants. For your benefit, go to the top of the page and "search" FTD Stages. That will give you more into on where he in the progression of the disease. I had to stop working last January to take care of my husband. We are on Medicaid and receiving assistance from them for Home Health Aides. They assist in his care when needed and help with household cleaning etc. It gives me time to nap, run errands etc. Please feel free to email me. Just click on my name and you will see my email address. It's good that you finally have a dx. FTD moves fast, so you need to get your ducks in order, especially Power of Attorney, a will, etc. Your local Alz and Elder Service (even though he is only 51) can help you find an atty you can afford, along with a lot of other valuable assistance. Hope this helps, I am also away from our family, they are spread out over the country. We are in Maine. Take a deep breathe and hang on, it's a hell of a ride, but you are not alone. Feel my hugs, Susan
Marise, we are all in a state of tragedy when dementia of any form strikes our lives. but in your case, 51yrs old and a small child. well its just so overwhelming its surreal. carosi and others have given excellent advice and you should start the processing as soon as possible and line up all available help sources. i would chose not to tell my DH he has the disease. something letting them think its temporary and maybe they will 'get better' may be the way out. of course as the disease progresses they will likely forget all the fiblets we tell for their comfort and ours. i am hoping your daughter will be first and foremost with regards to how you chose to deal with his ability to live at home. in alot of instances the spouse will be placed earlier to ensure the safety of children at home. i would encourage you to prepare for this for the future if needed. you need to be strong and take the lead and try to get yourself organized and as informed as possible with all the legal issues. speak to an elder atty soon to get advice on how you will qualify for placement if it becomes necessary. its bad to know the diagnosis but good you have the support system worakable. divvi