Hi,

I'm looking for a place where people can understand, and share what has worked for them.

My situation. I am a single (Gay) mother of two children, aged 6 & 7. Close to two years ago I met someone, "K", she walked into my life and we fell in love, fast. She told me on our first date (during which we talked all night) about HD, and that two years prior she had been tested and was positive. She talked about caring for her dad, about trying to come to terms with the future and find positive in enjoying everything life has to offer now. At the start I just felt so lucky to have found this amazing, beautiful, resilient, kind human and we tried to live in the moment as much as possible. A few months after she moved in my mother went into the hospital for some major surgery, we thought we would lose her and I had a glimpse of how much stress affected me and what a life might look like in my future... except I wouldn't have my strong, thoughtful partner beside me holding my hand. I would have to go home to my empty bed. I would have to not just deal with her death but the long process of loss.

About a month ago, I succeeded in pushing her away. We had started talking about marriage and I was TERRIFIED. To be financially tied. To be depended on for better or worse. To not even begin to know how to process these feelings/what to do.

I would love your help. I need to hear how you cope. I need to hear if you've found joy or peace in the experience. I need to hear how you deal with your feelings of anxiety or inadequacy, of grief and loss. It would help to hear from the partners, how you stay in the present without letting the future take anything more than it needs to. I've been seeing a therapist weekly now since she left but they don't seem to know where to start either in this process as it isn't something you come across often. The reading on mindfulness, and anxiety has been helpful but... nothing out there that I can find on this particular disease.

Thank you.



Edited 1 time(s). Last edit at 04/08/2014 08:07PM by Janine1234.

You really cannot know how you will react in the future. I can say that not all of us DO cope, I did not cope well at all. Everytime I looked at my husband I saw our 2 boys being sick. That along with demands he made on me and no one else, I could not cope and we ended up divorced. He is not end stage in a nh. So far our boys seem okay. Meds can help, I recommend it, and go easy on yourself, we are all human and have our own limitations.

Thank you for your response. As a mother you must have constant worries for your children. How do you manage those? That would certainly add a whole other element of anger/fear to the mix and I understand why you needed distance, we are above all else, mothers first.

Hi Mrspatwolf
Im glad to hear you are seeking counseling,and your right hard to find support out there strictly for HD.
I see a counsler for other reason ,depression,anxiety,stress,and an addiction i dont care to really share.
For me i never once found HD grounds for seperation or divorce but his behavour prior to diagnosis heck yah.
As soon as i started to educate myself about HD,it was alot easier to see it was not him.
But there was no words or books out there that prepared me for just how much HD really takes.
Everyones journey is different.the only thing that is the same is that HD is in it to the end with you.
Hugs.

Hi Janine.

Your question is a difficult one to answer. There is a degree of resiliance needed to assume a caregiver role. I would bet that many of the caregivers on here have gone through varying degrees of the struggle you are experiencing right now. Caregiving is not for anyone. It requires an ability to put others' needs ahead of your own while balancing enough of your own needs to stay afloat. If you take this on, you will go through periods of time when you feel "sandwiched in" by 2 generations of family who feel the world revolves around them (I experience this with my spouse and my children, now 10 and 11.) You will have frustration that no one is putting your needs first. You will have days when you need to just lie on the couch and take a "me" day. Mine are usually accompanied with a marathon of my favorite movie or show, the dog at my feet and a closed door, with orders not to be disturbed. As caregivers, we need to allow ourselves that time to replenish our own soul, lest we fall apart under the pressure. Caregiving has been a good fit for me overall, but it definitely makes you re-establish your priorities. I gain happiness through the gratitude from my family, not from monetary or material things. I have simplified my finances and hobbies to fit within that. I am trying to teach my children these same values , in the event that HD follows them into adulthood.

I don't know how much time I have left with my husband, but I do know that I am giving him the best life possible while facing this sentence. It will not be a life sentence for me, though. I can put my own needs on hold for now.

I do find great support from other families and caregivers with HD in their family. Find a support network nearby, or come here to find some people to help. We don't go through this alone, couldn't actually.

As for my children's future, I turn to the Serenity prayer...grant me the serenity to accept the things I cannot change, to change what I can, and the wisdom to know the difference. I hope for success in finding a cure for this disease before my children might have to face that sentence. Naturally, I do wonder every time I see their grades drop or see them stumble. I just cannot allow myself to be consumed with that worry. If it is coming it is coming, worry is not going to change that.

Good luck in forging a future as a caregiver if that is what you and your partner decide to do.

Patty

What I can tell you is hd is not for the faint of heart. It takes a person who is emotionally stable themselves, and does not romanticise life. Caregiving requires the caregiver to be to the stable person. Do you see any emotional stability in yourself at this point in time? And you're not even into the thro's of hd yet. You have to be the stable person, with the ability to give, set boundaries, and be the calming person in the relationship. I'm not even a caregiver, I have hd, yet even I can see this. I think you need to take some time to try and ground yourself emotionally, and be a strong enough person yourself to be able to draw strength from yourself, rather than from others. This is good advice for anyone entering any kind of relationship, nevertheless a relationship involving hd.



Edited 1 time(s). Last edit at 04/07/2014 12:47PM by Barb.

I have wanted to reply, but what I would write could not begin to express the depth of the excellent knowledge and experance that has been presented.

Thank you for your honest and thoughtful replies.

My son was diagnosed with Autism when he was two, so I did go through acceptance of the caregiving role there, left my career to work a full time program with him (with a speech path, OT, Physical Therapist and behavioural psych), but for whatever reason the acceptance with that was a lot different than this process now, likely because as a mother, you don't have a choice and it would never take his life. There was also measurable positive progress instead of an expected continual decline. My two are entering school this year so my caregiving role there (they were never in childcare) is just ending/transitioning.

Barb, I agree. I wasn't and am currently not in a place to be that rock that is required, I will be the first to admit that. That is why I'm here to learn, to see what those who are making it through have found works for them. I am reading everything I can get my hands on, am seeing a therapist, will be at the next Canadian conference in October.

Patty. Are you the full time caregiver for your husband? I'm not sure how to word the question, but I'm wondering how your kids are dealing with this happening to their father? Are they able to find balance/live normal lives while this is happening at home?



Edited 1 time(s). Last edit at 04/08/2014 08:08PM by Janine1234.

What is a "normal" life, really? For our kids, a normal life is being raised in a loving family with two parents who love each other, care for each other and make ends meet as best as we can despite very difficult financial situation brought with it all. They do have memories of his agitated and angry time. They lived with me alone while he was committed to a state hospital for a year after a domestic dispute. Even though I was the victim, I fought to have him committed rather than face prizon. Having him in a safe place to stabilize was good in the long run. Once out, he was at a stage where he accepted his need to be on medication and aware of his limitations. I do not know how we might have survived that transition if he were with us. I do believe that stage of emergence of the illness is when many families fall apart.

The kids have never really known anything different. I am the caregiver in the family and they are learning to be caregivers too. I taught my son (soon to be 12) the other day how Dad's drinks need to be thickened so that he doesn't aspirate and get pneumonia.My kids are realizing that it is a little more complicated to be spontaneous, or have friends over but we still do it. They just explain to their frineds that dad is in a wheelchair and sometimes needs help because of Huntington's disease. To another kid, he might look strung out or drunk, nd they don't need that stigma. I have always been open and honest with them about HD, and they both seem to feel comfortable with being open and honest with their friends. Their closest friends even know about their genetic risk being 50/50, but we always discuss that together with that being why we are so active to find a cure, before they become affected.

I asked my daughter (soon to be 11)your question. She very matter of factly said this is normal to her. Sure, she voices resentment over what other friends might be able to do, or what they might have, but what pre-teen girl doesn't? Grass is always greener with girls.

As for me. I lost my job last May and chose not to look for work outside the home after that. I had been stressing a lot, and burning too many candles. I am sure this had something to do with my being let go, but it happened at a good time. I am training to take up medical transcription from home to try to bring in some income besides his SSDI. We have had some family support and cashed in a few retirement accounts in the meantime. I come from a healthcare background (OT), so it does come naturally to take the role of caregiver. I have my ups and downs, but we manage to make it through. I enjoy our humor together. He is always thankful for the things I help him with and seems to enjoy the things we do. He is a very much loved member of my family, but he is not my partner, so to speak. On a good day, we are still able to hold a good conversation, but you need to develop the nuances for that as well. The conversation can be very one-sided at this point. Even so, we are happy together. This May will be 13 years married. The last 6 have been with him symptomatic.

Patty,

Thank you for sharing. You are teaching your beautiful young humans compassion, empathy and responsibility. I've met a few adults "K" included who grew up in an HD home, in her case there was also alcoholism, poverty (they had no place to live for awhile), and violence, and they turned into some of the most resilient, kind, empathetic, driven humans I've had the privilege to know. I'm sure your little ones will be no different (and yes the grass is ALWAYS greener for kiddos!).

I really appreciate your time today, I know there are a number of others calling for it! That job training sounds like a really good fit, I hope you are proud at your ability to roll with what life gives you. Thanks again.

Hello.
So very nice to meet you.
I am 33 year old mother of a 7 year old son. My partner and I have been together going on 14 years. When we first met I was upfront and honest with her about the possibility of me having HD (still have not tested) and not much thought was given at that time. WE were young and carefree and just lived in the moment. Today we care for my father in our home where we are the sole caregivers to him and boy has it been an eye opener for the both of us. This is such a tough tough tough road to travel down and it really takes someone special and dedicated to commit themselves 100% to the good and the bad. My poor father is in the end stages and depends on us for 100% of his care and to see how it consumes the BOTH of us daily I can only imagine if I were to be in the same shoes 10 years from now and her having to do the same for me. We really dont talk about it much. She always just reassures me that she is the love of my life--She will roll with the tide of the waves. It saddens me to think about my son and how he is at risk as well so one day she may have to be his caretaker as well.
HD sucks. Its so mentally, physically draining. I hope you and her can work through things and if nothing else just be an extra support system because something i have noticed along the MANY years of doing this alone is that everyone who says "if you need anything, let me know" completly vanishes. I am only child with no siblings so everything really does soley fall on me. I feel your pain and if you would like to talk to my partner please let me know. She doesnt really have anyone who is walking down her path so I am always looking for support for her. This damn disease affects not just one person but EVERYONE.
Good luck!!

NYTdreamer80,

Thank you for taking the time to write.

That really is the thing that I struggled to wrap my head around... that intergenerational piece, how there could be something out there that takes the healthy years of your life to care for your parents, aunts/uncles/grandparents, and then... when that has ended.. too often it starts up with the next generation. I'm sorry you are having to go through this right now, but it sounds like you both have found a wonderful human to journey beside. "She will roll with the waves of the tide". Beautiful. I understand fearing for her to have to possibly endure that twice more, but it sounds like she has her eyes wide open and is choosing to be there with a lot of shared memories to move forward with.

I would be happy to speak to your partner if she wants an e-mail buddy (where are you from?). I also hope at the very least, we can get back to that friendship and I can be another person who loves her and can be one of the hands on deck in the coming years, as well as I really do enjoy, love and respect who she is, she is a gift to those around her. When it is a shared future with her family and others in her life (and not just mine as a partner alone) it isn't nearly as scary, I can see it as just another way of loving someone, of showing up just to be present when the financial and care requirements are being handled jointly. "K" said the same thing you mentioned, where is everyone now, her father had so many friends before he started showing symptoms... and for years no one at all has visited him in his nh other than immediate family. Unless there is that love and commitment regardless of the form (partner, family, long time friend) people do just seem to move on with their lives... Human nature.

Have you two ever gone to any of the conferences? Is there a chapter in your city that is offering help/support/a place your kiddo can get involved?

Thanks again, and take care...