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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
Zyrayel, 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.
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.
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.
Ok... wow, Veronica. First I want to address the issue of looking for a man. I said what I said out of lonliness and lost dreams and the lack of love I feel now not because Im hunting or will hunt later. As for his lying and cheating its called inappropriate sexual behavior and denial via losing his judgement and yes its due to hd. My financial issues not that I should have to explain them to anyone are due to a broken down house. As for work I clearly stated that he is only just starting his journey with hd and that his movements are not yet noticeable ( to others they are to me). I honestly thought that his ability to still work would be obvious sorry I wasnt clear on that. As for me though I feel like I am having to justify my life right now, rediculously. I'm not working because I stayed home after college to raise my kids like many don't. So you are correct in insinuating that I am uneducated and codependent. However there is much I will not tell you that are more factors for that issue than you could understand. The college for medical assisting I did attend had been blackballed because of its teaching methods and low standard professers. By the time I found that out I had already graduated with a mountain of debt and a do not hire stamp on my forehead because of the college's bad rep. So no matter where I looked In Dallas I wasn't even given a chance. Now I am 46 and living in Houston My husband has already told me he will not help me in anyway to go back to school because of the last one. So I am stuck without a viable education. Now can you imagine what its like to put in applications online for jobs without any work history or education. Just a blank app with nothing but a name a number and an address. Who would hire you? And even if I did start college again now how long do you really think I'd be able to work for? I'll tell you at the rate of my husbands present mental decline maybe at max two years after a four year degree! Then on top of his illness I would have yet again another mountain of debt from school plus medical bills plus trying to keep this damn roof over my head. How does that make any sense? I have looked for jobs by pounding pavement before and you know what they hire at minimum wage? Fricking 20 year olds. Sorry for the language but this is more aggrivating and a hell of a lot harder than I think you realise. I also know that all of these nuerological diseases are equally awefull and I said nothing to the contrary. I only stated my own feelings of fear and worry. I hate living in anticipatory grief! I hate that I am so sensitive to other people right now that the slightest thing can set me off or send me into a weeping fit. I do very much appreciated your advice for divorce but I wont run just because this is hard and it hurts. Im not built that way. Yes I am depressed but I know me better than anyone and I know all I need is some friends some support and some time. I dont need drugs they would only exasperate my problems and add new ones but if they work for you thats great. As for law issues I will take your advice and Sunny's. I will only find a therapist when I am able to move to an area where more of the hd community dwells. There aren't any therapists here who know anything about hd and as I already said I doubt they'd even research it to help me. Now I am sorry if I offended you in anyway I was not meaning to.
Z, looking up the Huntingdons Disease Society of America:
http://hdsa.org/
there is a centre of excellence at the University of Texas, as follows:
HDSA Center of Excellence at University of Texas Health Science Center 6410 Fannin, suite 1010 Houston, TX 77030
Director: Erin Furr Stimming, MD
Phone for appts: 832-325-7080
Clinic Coordinator: Alicia Lerma Phone: 832-325-7081 or 832-325-7080 Email: Alicia.A.Lerma@uth.tmc.edu
Now, scanning through their pages it looks as if this particular department is more about therapy interventions and research in the later stages. But that doesn't mean that these people won't know people who know people...
You and your husband are going into a world of poo, and it's just dreadful. Worse, it's in the nature of the disease that the person who has it - him - is going to be of zero help and getting worse. You need to be in touch with others who are in the same boat - get networking!
Zyrayel, You did not offend me in any way. I am very difficult to offend. Just as I don't know you, you also don't know me and the setbacks I have experienced in 77 years of life and 53 years of marriage so lets not go there.
Pain is pain whatever the cause and yours is way above a ten right now. My questions were not to intrude on your private affairs but you came to this site looking for help and the more detail you feel able to share helps us help you. There is of course no obligation to do that and if you feel closer to some of the other posters you are free to private message them and they can do the same. You will find certain people have expertise in specific areas as well as being caregivers and a few are also your age although the majority are caring for elders not a younger spouse. You have successfully completed a four year training to become a medical assistant so you are far from uneducated even though your degree is not acceptable. If you are still interested in the medical field there are ways to complete a medical education without impoverishing yourself and have something to fall back on later. Many hospitals and other medical facilities will offer on the job training at no cost as long as you are prepared to agree to work for them once trained. You may have to begin as a CNA then proceed to LPN and finally RN. CNAs earn very little I know but they are much in demand and you will be working while you are training so will earn a regular income. The VA in my area recently advertised for CNA students with the promise of a permanent job after successful training. I think they were offering $12 an hour. and the students did not need any kind of military affiliation. Another person I know is completing an LPN to RN course while working in a local hospital at full salary and time off to attend her classes with pay Right now I think you are reeling from your husband's diagnosis and very angry at the world and people around you. You do have friends here and all will do everything they can to be helpful and supportive. sometimes you will get a sharp reply but that is because that particular person is going through a rough patch themselves. What you are feeling right now is part of the grieving process which has stages that everyone has to go through although some get stuck and are not able to move on. There is a very difficult path ahead of you but you already have a plan but if a door opens be sure to walk through it. There is no shame in being a stay at home mom. If more people were able to do that our children would benefit greatly so be proud. I do not regret any of the time I spent raising my children.
Hi again Veronica and Sunny: You are correct I am very sensitive. And I have spent years defending being a mom at home. Because everyone has either given me a look about it or treated me like I was beneath them becase of it. Your long years of marriage are quite an accomplishment congratulations on them. Marriage by itself is hard and your grieving must far outway mine in time spent with the same person. The reason I said that you were right about being uneducated and codependent is because the school I went to was only a two year technical college. Before that I had a 10th grade education with a GED. I wasnt being sarcastic. Afterward the credits were not even transferable to a legitimate college. Soon after I graduated the tech college was shut down and sued. I didnt find out about the suit till many years after I left there. I will look into the CNA again even if I dont get hired at least I'll have a good refresher course because a CMA and CNA are the same thing except medical assisting has office included. The only problem will be getting my foot in the door. Sunny I have contacted Baylor the therapies they have are more to do with physical and speech needs. I will look into it again with texas health, I really hope its worth the effort lols. Last time I only spoke with baylor and their last support group person was Katie Plunket.Thank you both.
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
I agree that:
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I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information").
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I just said this in a reply but want to put it out there for everyone. I am open to all responses thanks.
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.
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.
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.
I honestly thought that his ability to still work would be obvious sorry I wasnt clear on that. As for me though I feel like I am having to justify my life right now, rediculously. I'm not working because I stayed home after college to raise my kids like many don't. So you are correct in insinuating that I am uneducated and codependent. However there is much I will not tell you that are more factors for that issue than you could understand. The college for medical assisting I did attend had been blackballed because of its teaching methods and low standard professers. By the time I found that out I had already graduated with a mountain of debt and a do not hire stamp on my forehead because of the college's bad rep. So no matter where I looked In Dallas I wasn't even given a chance. Now I am 46 and living in Houston My husband has already told me he will not help me in anyway to go back to school because of the last one. So I am stuck without a viable education. Now can you imagine what its like to put in applications online for jobs without any work history or education. Just a blank app with nothing but a name a number and an address. Who would hire you? And even if I did start college again now how long do you really think I'd be able to work for? I'll tell you at the rate of my husbands present mental decline maybe at max two years after a four year degree! Then on top of his illness I would have yet again another mountain of debt from school plus medical bills plus trying to keep this damn roof over my head. How does that make any sense? I have looked for jobs by pounding pavement before and you know what they hire at minimum wage? Fricking 20 year olds. Sorry for the language but this is more aggrivating and a hell of a lot harder than I think you realise. I also know that all of these nuerological diseases are equally awefull and I said nothing to the contrary. I only stated my own feelings of fear and worry. I hate living in anticipatory grief! I hate that I am so sensitive to other people right now that the slightest thing can set me off or send me into a weeping fit. I do very much appreciated your advice for divorce but I wont run just because this is hard and it hurts. Im not built that way. Yes I am depressed but I know me better than anyone and I know all I need is some friends some support and some time. I dont need drugs they would only exasperate my problems and add new ones but if they work for you thats great. As for law issues I will take your advice and Sunny's. I will only find a therapist when I am able to move to an area where more of the hd community dwells. There aren't any therapists here who know anything about hd and as I already said I doubt they'd even research it to help me. Now I am sorry if I offended you in anyway I was not meaning to.
http://hdsa.org/
there is a centre of excellence at the University of Texas, as follows:
HDSA Center of Excellence at University of Texas Health Science Center
6410 Fannin, suite 1010
Houston, TX 77030
Director: Erin Furr Stimming, MD
Phone for appts: 832-325-7080
Clinic Coordinator: Alicia Lerma
Phone: 832-325-7081 or 832-325-7080
Email: Alicia.A.Lerma@uth.tmc.edu
Now, scanning through their pages it looks as if this particular department is more about therapy interventions and research in the later stages. But that doesn't mean that these people won't know people who know people...
You and your husband are going into a world of poo, and it's just dreadful. Worse, it's in the nature of the disease that the person who has it - him - is going to be of zero help and getting worse. You need to be in touch with others who are in the same boat - get networking!
You did not offend me in any way. I am very difficult to offend. Just as I don't know you, you also don't know me and the setbacks I have experienced in 77 years of life and 53 years of marriage so lets not go there.
Pain is pain whatever the cause and yours is way above a ten right now. My questions were not to intrude on your private affairs but you came to this site looking for help and the more detail you feel able to share helps us help you. There is of course no obligation to do that and if you feel closer to some of the other posters you are free to private message them and they can do the same. You will find certain people have expertise in specific areas as well as being caregivers and a few are also your age although the majority are caring for elders not a younger spouse.
You have successfully completed a four year training to become a medical assistant so you are far from uneducated even though your degree is not acceptable. If you are still interested in the medical field there are ways to complete a medical education without impoverishing yourself and have something to fall back on later. Many hospitals and other medical facilities will offer on the job training at no cost as long as you are prepared to agree to work for them once trained. You may have to begin as a CNA then proceed to LPN and finally RN. CNAs earn very little I know but they are much in demand and you will be working while you are training so will earn a regular income. The VA in my area recently advertised for CNA students with the promise of a permanent job after successful training. I think they were offering $12 an hour. and the students did not need any kind of military affiliation. Another person I know is completing an LPN to RN course while working in a local hospital at full salary and time off to attend her classes with pay
Right now I think you are reeling from your husband's diagnosis and very angry at the world and people around you. You do have friends here and all will do everything they can to be helpful and supportive. sometimes you will get a sharp reply but that is because that particular person is going through a rough patch themselves.
What you are feeling right now is part of the grieving process which has stages that everyone has to go through although some get stuck and are not able to move on.
There is a very difficult path ahead of you but you already have a plan but if a door opens be sure to walk through it. There is no shame in being a stay at home mom. If more people were able to do that our children would benefit greatly so be proud. I do not regret any of the time I spent raising my children.
You are correct I am very sensitive. And I have spent years defending being a mom at home. Because everyone has either given me a look about it or treated me like I was beneath them becase of it. Your long years of marriage are quite an accomplishment congratulations on them. Marriage by itself is hard and your grieving must far outway mine in time spent with the same person. The reason I said that you were right about being uneducated and codependent is because the school I went to was only a two year technical college. Before that I had a 10th grade education with a GED. I wasnt being sarcastic. Afterward the credits were not even transferable to a legitimate college. Soon after I graduated the tech college was shut down and sued. I didnt find out about the suit till many years after I left there. I will look into the CNA again even if I dont get hired at least I'll have a good refresher course because a CMA and CNA are the same thing except medical assisting has office included. The only problem will be getting my foot in the door.
Sunny I have contacted Baylor the therapies they have are more to do with physical and speech needs. I will look into it again with texas health, I really hope its worth the effort lols. Last time I only spoke with baylor and their last support group person was Katie Plunket.Thank you both.