On February 26 of this year I took my DH to UMMC for a neurological evaluation. Seven weeks later, they have given us a DX of FTD. It is a weird feeling..I was expecting it...but not expecting....praying that it was something "fixable." It has taken me a few days to come to get my head wrapped around this..doubt it will ever be 100%. Bad news. Good news that now I have something to work with. In a strange way I have a sense of calm and peace knowing what to expect. Now I can research, do my homework & try to plan for the future. Does that make sense? I am already more "forgiving" of my DH's behavior...more understanding, more compassionate. I am sure I will have my moments but there will be less of them. It is also is a feeling of relief to know that this "thing" that has completely changed our life, has a name..FTD. Thank you all for your never ending support..........I'll be back with updates.
Yes. Dx is a big help, in just the way you describe. Do we ever "get our heads wrapped around it?" Don't know. For me the answer is probably "not quite." More like I was eventually just able to behave and carry on according to what I "knew" to be true, even though my foothold in reality was probably shaken to the point that I won't ever, for the rest of my life, quite feel thoroughly secure again.
But I will say that, as terrible a condition as my husband is now in (stage 7, and living in an ALF,) I have begun discovering life again, and having fun. There's never no hope. Just a different kind.
Ferggie, the emotions you felt when you finally got a diagnosis echo how I felt when my husband was diagnosed with AD back in September. After the summer from h**l, I finally knew what was causing his bizarre behaviors, and I could start researching his disease and what to expect. And where to find help. I also felt some remorse for some of my behavior as well - getting angry at him, when he did things that made me mad. I know now that what he was doing was just part of the disease, so I too have become more compassionate and don't "lose it" , at least not in front of him. I've begun to treat him more like one of my children - that helps me get my head around things.
I agree that a dx, no matter how bad, is a help. Once you have the FTD dx you now have some idea of what to expect and how to prepare. Emotionally you know that it isn't his fault (though if you can ever fully accept that is another question) and you start accepting that you can't fix it. There is still the ambiguity of his body being here while his mind disappears and your own ambiguous emotions.
Knowing a DX is helpful though distressing at the same time. Your attitude is good thus far. When all of us finally found out what was really wrong with our LO I think most of us had a view like yours... The thing to really get to understand, and you will learn a great deal on these threads from everyone, though each has had a different journey with many similarities, this disease will eventually wear on one no matter how good the intentions are.
To try to avoid some of the stress, which is unavoidable, join a local Alzheimer's Support group if you haven't already as they are a great source of information. Make sure you take care of YOUR health. Stress is cumulative and you must deal with that or you too will fall ill. You have to take care of yourself too.
If you have not seen an Eldercare Attorney, please do so NOW and make sure your trust or whatever you do have is in order, make changes now as necessary while your DH can still put in his wishes too and be sure your assets are protected. In addition to that, a good Eldercare Attorney will know a great deal about medicaid and VA issues that other lawyers may not be as aware.
Start early to view assisted living facilities or NHs so you know what is out there should you need it.
FTD is a difficult illness to have to contend with and there are others in this family whose LO does have that so they can be especially helpful. There are some differences with each kind of dementia though they all have some things in common.
So hang in there, you have come to a great place for support, advice, humor, etc.
And welcome to our club though we all wish you didn't have to have a membership...
Ferggie, yes having a dx is helpful and does allow you to research the illness and try to prepare yourself, your spouse and family about the future and what to expect. As mimi says, if you've have not already consulted an eldercare attorney do so immediately-get all the required paperwork drawn up and signed while your husband can still understand and make these decisions. Yes, look into facilities and/or home health care so that you are well educated and know which places/firms will meet your needs and budget.
Also make sure your DH no longer has unsupervised access to anything financial-credit cards, checkbooks, investment/retirement accounts. My hsband spent thousands of dollars without my knowledge and ruined our credit because he wouldn't pay the bills (always his job). FTD is a very difficult disease and often has difficult behaviors associated with it. My husband became physically abusive and I had to call 911 to save my life, which I would never do again because it resulted in a 4 month involuntary stay in 2 psych hospitals.
I am not trying to scare you or paint a terrible picture, I am just trying to alert you to things you need to do and prepare for before there is a crisis situation. There are many of us on this website who have spouses with and FTD dx who can and will offer helpful advice and support. We are truly here for you.
ps sometimes the advice we will give will be something you do NOT want to hear and you will feel unsuupported and perhaps betrayed. No one will deliberately offend you but please know sometimes we have to share an experience or advice we've been though to help you. Ask lulliebird, I'm sure I've pi**ed her off many times in my efforts to help her with her journey.
You sound so much more mature and accepting than I was when my husband received first a dx of mci but that was rapidly changed to FTD based on CRT, MRI and PET.
When I first saw the disks I wanted to scream. Thankfully I did not. At least not so anyone could see. I do see that LFL among others have posted here. They are invaluable for knowledge and advice.
We are here for you. It is hard to know how much someone wants, or is prepared to know. You have the option of checking the archives. Otherwise please let us know what your concerns are and (speaking for others) we will help as much as we can.