Hi all -

I have only been in the HD community for less than a year. I met a beautiful woman that had HD as part of the package. She is wonderful and sweet and sadly has HD. She is into her 11th year; I am her sole caregiver. I have had to learn a lot about HD and am absolutely terrified as I see it advancing in her seemingly so quickly.

We have had 2 near fatal choking episodes, but no aspiration so that is great. I fought to get her on tetrabenzine, I fought to get her a Modified Barium Swallow (which came back showing no aspiration during swallowing) but now, after the second major choking episode, I am terrified. I did notice today while eating chicken soup, she seemed to gag/choke a little, but I remained calm and it passed without another 911 or ER trip.

Her PCP has pretty much given up on her. She wants to change PCPs but we can't do that until next month, but her PCP looked at me yesterday and said that I looked terrible...(thanks doc!) She suggested that I look into Palliative Care at home; my SO was admitted to a Skilled Nursing facility(SNF) for dehydration and fatigue recently and since she came out, she has not been the same.

I on the other hand feel like I am unraveling and imploding as I struggle with the seemingly quick downward spiral. I can't remember who posted it, but she can dress herself, bathe, use a toothbrush and remote control very well. So she is not totally gone. She tells me she loves me all the time, hugs and kisses (we aren't married) yet....and I am afraid it is not going to happen now as she is seemingly declining in her stamina.

Her SNF came back with a diagnosis of IBS, they put her on Bydyl for that. Aside from that, I am so happy she is healthy, and the only real "behavioral" issue is a little bit of OCD, but all in all is manageable. She takes 1.5 12.5mg tetrabenzines twice a day and a full one late in the afternoon. And bedtime she takes Trazadone for sleep. I get jealous cuz she can be asleep in 10 minutes.

But I am asking for me.......I am burned out, no family to help and her in my large city there are few HD resources and help. I have tried the HDSA Social Worker (worthless)....have reached out to a few here but still not getting anywhere.

She is scheduled for a Barium Swallow Test next week, but in the meantime the only other pleasure, mastication of food is being denied and she is on a soft foods diet only. I have modified our mealtime to limit distractions. tonight however, I am doing sweet potato and spinach quesadillas (cut into small pieces) for her and have made some very soft guacamole.

I feel alone in this!!!!!!!!! The closest support group that we have that seems to be healthy is Austin, but that is not possible. The one where we are is always so negative focusing on the finality of HD.

Thanks for letting me vent and plead for help! I ramble....please help me! I want her to have the best quality and quantity of life, but is it at my total expense and sacrifice? I have created a safe environment for her and she is very happy saying she feels very carefree and safe.

Help!!!! I feel so alone!!!!!! I know of no other caretakers in a 200 mile radius of where I am, and I am less than 100 miles from Austin. LOL.

You are not alone, unfortunately. But having others in the same situation is not any help, is it?

excluding taking the swallowing tests, I could have written your post (and I am farther away from Austin!)

JFB in NC

Thanks JFB. I know that sounds crazy but appreciate the reply. It helps.

In for another long night. She does not want to sleep.

Lord help me.

my Wife will be up late tonight also (and I have someone showing up early to do some plumbing repairs)
she is all excited, extreme chorea and yelling while watching "big foot" programs on TV

You might want to join this Yahoo group
[groups.yahoo.com]



Edited 1 time(s). Last edit at 06/09/2015 08:18PM by JFB.

HI caring4hd,

My husband too has HD and has been living in a personal care home for the past 5 years. I would love him to be at home with me but that wasn't really an option. I was in my 20's when I became the sole supporter in our home when he went on disability due to hd. Due to his needs I was unable to leave him alone early on and due to my age I still needed to work to support him/us. Home Care wasn't able to handle his behaviours and pulled out so I had to look at other options. I still wish he was home but I know I made the right decision based on our circumstances.

It sounds like my husband is further in progression. He is no longer able to do anything on his own. He is transferred into and out of his wheelchair by mechanical lift, has been on a pureed diet and thickened fluids for a long time and is reliant on others for all of his needs. His swallowing is worsening and concerns me. He had a chocking incident last week that scared me, while eating pureed food. On top of holding a full time job that can be demanding I visit him daily for hours at a time. I understand the feeling of exhaustion and wishing too that I had more support. Loneliness is something I feel every day. I miss the man I love even when I'm right beside him.

I live in a different country than you and so can offer no help in knowing how to access or locate different services so I'm sorry I'm not more of a help to you.

Hi Lisa -

Thanks so much! Even though you are in another country, the boundaries of how HD affects those of us looking in strips the geographical boundaries away.

I can relate to what you are saying completely. My SO is still here, and alert and interactive, but everything else has slipped and the hardest thing is her realizing that the despite her own determination to be the master of her HD, the HD is winning and the problem that has become apparent is, in my conversation with her neurologist today, stereotyping is so typical. Because of this, this is what we do, when the "this" is not the issue. HD - as we know is different and while there are similarities - this is a Human Disease not just a Hidden Disease.

I feel what you are saying; the hardest part is the US National convention is coming up and I do not think it is going to be safe considering her incredible fatigue that she feels all the time unless there is a drastic change in the next 2 weeks.

It is difficult to watch the person slip away, despite them being right there beside you. I do have her at home now, and her moods are very consistent - for now, but as the frustration of the limitations starts to really set in, I do expect this to change and find that things will become more difficult.

IF I can help - even as a sounding board Lisa, you - we - are never alone, no matter the miles, these forums are here for us to take advantage of. Between you and JFB, I feel not quite as alone as I did yesterday, so thank you!

Hang in there, this is their journey and our journey and together we will get through this....



Edited 1 time(s). Last edit at 06/10/2015 01:56PM by caring4hd.

Hi caring4hd and Lisa,

I am so sorry for what you both are going thru. I know exactly how you feel but I live in Tennessee so I am no close either.
I also feel so alone in this but I have got my greatest support from this site and from the face book site that I am on.
Lisa, I know what it's like to miss and grieve for what was.
I have a post on here called "my story"
it is very long but maybe some of my experiences will help in some way.
Hugs to you both!!!!

Liz

WOW Liz....I started reading through the My Story.

What a great forum, all of the folks here reaching out, sharing and walking this road together.

Makes me feel terrible at the underlying thoughts that I have ...... I respect each and every one of you so much!!!!

In my case, her dad passed after 10 years (she has had it 11 - HD is not the same in all).....her dad had 4 siblings 3 of which had it and one that dodged the mutation. He got it from his mom and she got it from her mom. My SO has 2 children that have chosen not to be tested.

What has happened is my SO divorced her husband of 20 years and was living in an Independent Senior Retirement apartment when I met her. But the management there did not understand HD OR understood HD enough to know what to do to drive her crazy and into a state of constant anxiety and turmoil...in I come, the white knight, wisked her out of there and into a carefree, extremely low stress environment.

But in the process of the last 18 months, her decisions have alienated her from her mom, children and family. I am new to her life, but finding that her description and view of things are not the reality. So now, I just do not feel I can be there for the journey, for where it is going to lead.

I think I am so overwhelmed right now, I was just feeding the cats and hit my head on a light switch -it hurt! I broke down and sat on the floor and cried. My SO has so much apathy that all she can say is "I am sorry honey."

We are not married, but the idea of walking away seems cruel. I am sorry if that is upsetting, but we do not have many, many years and in the early stages of our relationship, it was rough, but I blamed the environment she lived in .... but after getting more insight and even seeing what she tells the few that have stayed in her life, it is nice to my face and cursed behind my back.

We go to church together, which is awesome but I am not sure that she fully understands the Christian walk, but that is not mine to judge, but when I started having the feelings that I wanted to run ..... I started praying, I met with our counseling pastor, and have talked to a few folks. Then over 2 weeks, God told me what he wanted me to know ..... His miracle for me was not the miracle I wanted for me. He has shown me that I need to bounce .... with that said, how do I do that, making sure that she is taken care of? I can't get anyone to call me back, I can't find the resources. She does not need hospice but definitely needs more care than I can provide all by myself.

Please don't judge me. I am just at the end of my rope. Forgive me for getting so deep.

HDSA and their care caregivers survey - you got your ears on???

No one will judge you here - just provide sympathy and a lot of knowledge. We're all in the same boat.

Best,

Will

normzach Wrote:
-------------------------------------------------------
> HDSA and their care caregivers survey - you got
> your ears on???


Being new to this forum, does HDSA ever look here? Do they ever chime in? My experience with HDSA has been far less than favorable (No Offense intended Mr. and Mrs. Ireland)

I read a story about someone on another forum that donated faithfully for years to HDSA (including making HDSA the beneficiary of at least 1 of the family member's estate) and when they reached out to HDSA for help, guidance, there was none to be given.

I tend to find more help from the HD Society of Canada! Which is sad. But I also know that I am not alone in that feeling. Is that why I see the reference to the "Ivory Tower" in the forum?

Wow right back at you caregiver. This is such a hard life to try to live.
I would never judge you. Read my story. In the beginning I wanted to leave too, but I have been married to the love of my life for 24 years. that makes a huge difference.
You have tried your best and that's all you can do.
I hope you are able to figure out something that is best for you both.

Liz

C4HD,
I am also very concern of who will take care of my wife if she out lives me (which is a good possibility).

Something I have been meaning to do for a long time is to call the County Clerk of Court and talk with her. I have attempted to talk with a Lawyer, but that did not result in increasing my knowledge nor a plan.
The Clerk of the Court would be the legal agency that would take over the care for someone that is not able to do so

I take care of my 32 year old daughter who is late stage JHD by myself. I have learned that there is very little support to be had. I have reached out to so many. With the exception of Dr. Rosas at MGH most "health care professionals" know little or nothing. I recently had one who told me that she thought my daughter's problem was early onset menopause. When I told her she was wrong she asked me "what is it then?" My simple answer: "HUNTINGTONS". Don't feel bad about being down on HDSA. Most people are. They have never helped me. For many years I gave them a yearly $1000 donation. Never even received a thank you. Last I knew, Steve and Marsha (Irelend) were no longer associated with HDSA and were not big fans either. Being an HD caretaker is no easy task. My daughter has been afflicted for about 15 years and my wife had been diagnosed for 11 years when she passed away. I don't post much here anymore. There is not much more to write. I have experienced it all. If you want to read some stories, click on my name and read my posts. Best wishes to you.

Hi, so sorry to hear about your situation. No one will judge you; you have already done so much, and everyone has a point at which they need help, so please don't be hard on yourself. Is she on Social Security disability? If this is her only income, she can qualify for Medicaid, which will pay for either in-home help depending on the state you are in or a facility. In Colorado, New Mexico and California, there is an organization called INNOVAGE and if she signs up with them, they provide much better care than Medicaid (it is sort of a managed care program for disabled and elderly patients). They can provide in home help and assisted living facility help as well as all other doctors.

My husband was in an assisted living facility for which we were paying out of pocket ( in order to spend down all of his assess so that he will qualify for Medicaid when he needs to go into a nursing home). However, we ran out of money and I had to bring him home. I was very concerned about the quality and quantity of choice provided by Medicaid ( which is accepted by very few places and many of them are substandard to say the least), so I was talking to the administrator at the assisted living facility where he had been and she told me that they accept INNOVAGE, but not Medicaid. So when I qualify him for Medicaid, I will sign up for INNOVAGE instead so that he can go to a decent facility. [www.myinnovage.org]

If you are not in those states listed above, check out PACE, (Program of All-Inclusive Care for Elderly) and disabled which is available to both Medicare and Medicaid patients. It helps someone who would qualify to go to a facility stay in their home instead. It is run by state and federal government.

Check out this site for more information: [www.medicare.gov]

Thank you so much for the replies to all. I feel a little better, but of course, the proof is when we start moving towards getting these things in place.

I am in TX and I am finding it very frustrating, the lack, as Howard said that the medical community even knows how to spell HD (just the initials) (ok I exaggerate a little on that)

Every time we have had to call EMS, I have to educate them on what HD is, why she does not respond like a normal person (is anyone ever NORMAL when calling for Emergency Medical Help???!!!)

I am going to chase down the resources....heck I am even concerned now that her neurologist is not that knowledgeable based on an exchange last last night I had with him. So we do the best we have with the info at hand and lean on each other to navigate this maze.

I am so relieved that I am not being judged or thought poorly of for my "cowardness"

what you have done is a great thing. No one should ever judge your decision if you decide to leave. Those of us who have been in your shoes completely understand. My kids dad has been in a nursing home for 6 years now. It came to a point where he either had to leave the home or the kids and I did. HD is a long tough journey. I did the best I could for as long as I could. I was working full time , raising 3 kids and trying to deal with him. I haven't posted here in a very long time. I had to take a break from it all, but feel free to look up my story. Wish I could help with resources, but we are in NY.

Caring4HD,

My husband has Hd. We've been together for 20 years. Just found out about HD recently when his mom was diagnosed. Had never heard of it before. We are getting wills and POAs done. You may have a hard time doing anything for her since you aren't married and I am assuming there is no POA with you listed. You feel God told you to leave her and you are just trying to find a place to take care of her before you do? Am I understanding correctly? If that is the truth, then God will take care of her. He's got a plan. Where are you in TX? I have family and friends out there. You might try going to a few HD activities like one of the HDSA walks. There was one in Austin in May, there is one coming up in San Antonio in September and one in Sugarland in October. Maybe you could meet other caregivers and get some ideas on what help is available in TX. Might be worth it even if it is a bit of a drive. Might also be good for your girlfriend. Maybe you could push her in a wheelchair if she is too tired to walk. My husband has a lot of pain associated with his HD as well as the fatigue, but is still working for now (thank God!). So, if we go somewhere with a lot of walking (zoo, theme park), we rent a wheel chair so he can sit whenever he wants and we can push him occasionally. I feel so bad for those with HD who have no one to take care of them and look out for them. My mil is in a very good nursing home - even though she just has medicaid. Never the less, I need to constantly watch what they are doing. She would be drugged up ,sitting in a corner, drooling if I wasn't paying attention and not allowing them to put her on every med they want at every dosage they want. You are very fortunate, as am I, that your girlfriend doesn't have the violence or meanness...or at least not yet. I love my husband so much. The thought of that part of HD scares us the most. My husband is such a kind, loving, generous man. I just can't and refuse to imagine the day he is mean. Best wishes to you and your girlfriend in your journeys.

Be Blessed,
Amber