I can't seem to get unstuck from thinking too much about my spouses Huntington's Disease.

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Zyrayel? You ok?
Hi I just feel hopeless I cant seem to get unstuck from thinking too much about my spouses HD. He is only just beginning his journey with it. There is so much I have to do and to save for and no money to do it. I am completely alone. I have to find a way to move to kentucky so he can get into a home that has knowledge of HD needs later on. I dont know how Im going to get there. And if we stay here in houston not only am I without resources but I am also living in a house I cant afford to fix. I feel that with his illness that not only are my dreams of any future of growing old with someone are dead but my hopes of living the next 20 years with someone who is literally leaving me little by little because of his disease is going to leave me even more alone much much sooner. Huntington's is not just a little blip on the screen of life its a 10 to 20 year mutilation of life. I am 46 now And I feel like I am the one dying because I cant seem to live or love or have or do anything and when he passes I will be too old for anyone to even want. This may seem pretty self centered but its my pity party.
I just said this in a reply but want to put it out there for everyone. I am open to all responses thanks.
I wish I'd never heard of or read anything about HD. It would make it easier to say something upbeat and positive about it. But it's a vile disease, and I'm just so sorry that you and the husband you love are facing it.

I think you've every right to focus on your future. Sad thing is, that in time your husband won't have enough awareness for him to be worried - I suppose in a screwy sort of way that's something.

But. You are NOT on your own. Granted, HD is not one of the fashionable conditions that people are always have bake sales and running half marathons for; but that doesn't mean there won't be support groups for you, a community that understands because it's living with the same challenges.

So: where have you looked for help and resources? I'm surprised that a city the size of Houston hasn't specialist care to offer, but okay - how about asking the place in Kentucky if they can suggest organisations you might approach? Don't do this on your own. Big hugs to you x
I'm sorry to hear of your husband's diagnosis. Do you have family or friends in any particular place? I agree that I might try to locate a community where they will have the most in the way of care for your husband, medical, long term, etc. as well as support groups and other programs to help you. A support system is so vital. Online sites are great, but, I would think that an actual group that meets win person would also be so helpful.

I might also explore what types of things you and your husband need in the way of Durable Power of Attorney, Healthcare POA, etc. They may also suggest resources to help you as you and your husband.

I hope you are able to find others who have one through this and who can offer comfort and support. Take care of yourself.
Have you contacted Baylor College of Medicine or Baylor Clinic?
To everyone:
Yes I did look at baylor thats where my hubby was diagnosed. They only have one support group that is not only too far away but also seems to meet for social engagements, not therapeutic enough unfortunately.
That and the people who run it seem to galavant all over the place.
On the hdsa web site there are no care homes that specialize in hd care.
And Im afraid the battle to find someone willing to even come in and sit with him later will an exhaustive climb. The only thing near to me seems to be alz support. I've searched and failed.
I have an adult daughter but she works all the time. She may be married with a family of her own when this gets to be too much. If not I will want her to be out there catching a husband! She's going to be 27 in 2017. I'm starting to panic for grandchildren. Fortunately I had both of my children before I met my hubby 20 years ago so no chance of hd for them. My son lives in California and lives with drugs so no support there. I feel so horrible whining when there are others taking care of more than one ill person I cant even imagine that kind of mental and emotional burden.
I dont have a single friend to even talk to or have coffee with or do anything with. I go to the movies once in a great while alone. Same thing for thrift shopping. So to answer your questions I really dont have anyone.
I will have no choice but to start therapy but it will be with a councelor who knows nothing about this and probably wont even take the time to research hd even if I ask. I have to move to where resources are available its they aren't here. Im going to spend this coming year to pay off debt. 2018 will be the year I can hopefully start to save but with his driving record god only knows. In two years I'll work on my credit reports to be able to buy a small house in Kentucky when my hubby starts to have real difficulties. After that I'll keep saving to get this one fixed up to rent out and move. I dont know how it will work because Ive tried to save before but life keeps happening even now Ive got 67 dollars in the bank. I know many people are on the street and that I need to be grateful Im just scared that if I dont find help soon my own heart will fail. And the worst part he hasnt even started the noticeable movements yet but his cheating/lying and other behaviors are really stressing me out.
Sorry for the long rant again.
I think I'd see an Elder Law attorney who also has a Family Law attorney in house, so you can find out what your options are for future planning, responsibilities, rights and obligations.
Sorry I guess I missed a few questions. I have discussed the legal need with my hubby but because his parents didnt do that untill late midstage he thinks he has time to wait grrrs! There are doctors here but no other support specifically for hd except for what I already mentioned which is not enough.If there are any more questions that I missed please ask again. Right now my battery is dying.
Thanks Sunny
Zyrayel You mentioned lying and cheating. Has this always been his pattern of behavior through your marriage? Has he qualified for disability or is he still working? Are you working? How have you got in such a financial pickle? If hubby is legally disable you would be able to qualify for senior housing on the grounds of disability. Not the most popular solution I am sure but a rood over your head is better than nothing and you can sell the current house in an "as is" condition. Although Huntingtons is a vile disease it is no worse than things like ALS or MS and many places deal with those satisfactorily.
Concentrate on becoming self sufficient not looking for another man when this is over or even consider divorce now before his health further declines. If you don't have marketable skills start taking courses now working towards a degree if you don't have one.
You are obviously deeply depressed about this diagnosis so some medication is totally appropriate to see you through this rough phase. You may be able to find a therapist who is knowledgeable about your husbands conditioning if he/she is not interested in learning move on remember you are the one paying her so take your business elsewhere. Find someone who is knowledgeable about the challenges of living with someone who has a chronic terminal disease. Their needs blur into each other as time goes on so don't worry about specifics many caregivers face the same challenges that lie in your future.
If hubby won't put his affairs in order there is nothing to stop you consulting an attorney and making sure you are protected. It is possible and often financially advantageous to actually get divorced. You can still continue to stay and look after him but he will get much more financial aid if he only has his own income as he will likely be below the povery line if not working. But get legal advice before doing anything and make an appt with your PCG before things really get out of hand.

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