Huntington Disease Lighthouse Families

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How do you tell your 10 year old that her mom has Huntington's

Posted by Jimmgjersey 
How do you tell your 10 year old that her mom has Huntington's
June 02, 2016 05:02PM
My wife has Huntington's Disease, My oldest 18 and middle daughters 15 know about the disease, my 10 year old does not. The others were older when they found out. How do you tell a 10 year old. My wife has the movements and some depression and has some short term memory loss but overall is still engaged. She doesn't like to talk about it but as it progressed more I want to tell my 10 year old, how would you tell her with the help of my older daughters
Re: How do you tell your 10 year old that her mom has Huntington's
July 28, 2016 03:58PM
I'm hoping someone with experience will answer this to help guide you. Maybe there's some guidance on earlier posts if you look in the "search" option.
Re: How do you tell your 10 year old that her mom has Huntington's
August 11, 2016 04:43PM

I have just found your question as to how you can tell your 10-year-old daughter that her mother has Huntington's Disease.

My son, now 32 and a pHD, started noticing changes in his Dad when he was in the third grade. He couldn't understand
why his Dad was having trouble driving his car and other unusual movements of his arms and legs while watching t.v.

Don wasn't as patient as he'd been before and although he never yelled at Alex, our son could tell something was different. He
started to feel that his Dad was mad at him or that things were just not the same when he spent time with him.

Of course, I already knew that Don was "at risk". I'd just never discussed it with our little boy.

I spoke with my mother and she felt it was time to tell Alex about the HD. It seemed that although our son was very smart for
a child going on 9, that it would be too much to tell him about his Dad's illness, so I decided to tell my boy that his Dad was ill,
but that the doctors were trying to figure out what it was. He was relieved. Not that his Dad was ill, but that it wasn't just his
perception that something was wrong.

We decided to go to family therapy as a means to help Alex deal with the news, but also to prepare for when we did tell him
what was going on with his Dad. Occasionally Don came with us. He was still working, but tried to fit the appointments
into his schedule.

When Alex was almost 11, we were watching an interview with actor Carroll O'Connor, who'd recently lost his son Hugh. He told
the interviewer that everybody assumed he had "all the money in the world", but if he did, he'd use it to have a study done on
why young people raised by loving parents, and with everything they could ever want, would still be in enough pain to turn to

Alex turned to me and said, "Mom, if I had all the money in the world, I'd give it to the doctors who are trying to find out what's
wrong with Dad." He searched my face and then asked, "Mom, do they already know? Do you?". I asked if he'd like to call his
Dad whose home was still in California, though our son and I were in Arizona, and talk with him. He brought me the phone and I
dialed Don's number. When he answered, I told him that Alex had a very important question to ask him, the most important, and
Alex got on the phone to ask, "Dad, have the doctors figured out why you're sick, and if they have, what is it?". Don replied and
answered Alex's questions. Again , he felt relieved. Not that his Dad had this disease, but that there was a name for it, this reason
that his Dad wasn't the same anymore.

Over the next few years, Don would come and spend holidays with us. Every time he came, there had been a new progression. Each
time he left to return to his home, I'd tell him that he could always come live with us. After going to board the plane, I'd tell the flight
attendant that Don wasn't on drugs or drunk, that he had a neurological disease that caused involuntary movements of his head,
shoulders, arms and legs, then ask if someone could see that he got off the plane o.k. at his destination. They were always so kind.

Alex and I continued with a new family therapist who was a terrific help to Alex understanding his Dad's illness.

Long story short, when Alex was going on 16, his Dad came for his last Christmas visit and passed away in Hospice, from aspiration
pneumonia caused by Huntington's.

Our son was tested for the gene his senior year in high school and the result was a "positive". He is now in the later stages.

Hope I helped you to tell your daughter. Do whatever makes you feel most comfortable. It's a good idea to have her older sisters
present as they've experienced your wife's journey, as have you and she.

Wishing you well.
Re: How do you tell your 10 year old that her mom has Huntington's
August 12, 2016 07:28AM
Thank you so much for sharing, it is a help and I know we all struggle with questions similar to this. I did tell my 10 year old and like a 10 year old she just moved on. I think I have to revisit her again. Carol, my wife does not have anger issues or anything like that, some movement and speech issues that are still relatively minor but I do need to revisit with her to make sure she truly understands that mom is sick.
As it happened with my other girls, so that she can explain it to her friends when they ask why mom moves the way she does.

Thanks again and good luck to you.
Re: How do you tell your 10 year old that her mom has Huntington's
August 13, 2016 03:01AM

I'm so glad that you told your 10-year-old daughter about her mother having Huntington's. It's no longer
something that you and the older girls have to avoid discussing around her.

Wishing you, your wife and the girls all the best. Thank you for your kindness in your response.
Re: How do you tell your 10 year old that her mom has Huntington's
September 18, 2016 07:29PM
My daughter was in kindergarten when dad was diagnosed. We went simple and added each year. Dad's brain doesn't work right that is why he does this or that, we did not name it and we did not dwell on it. As she grew, we added things,d has a disease and he can't work, because he can't think right and on and on. In sixtth or seventh grade she knew enough and smart enough that when we told her she was at risk she had pretty much already figured that out. I had a son a year after diagnosis and he is now ten, he has lived all his life knowing that dad was sick and his brain did not work right, he asked directly the other night if he was going to get the disease.

Hope this helps.
Re: How do you tell your 10 year old that her mom has Huntington's
September 21, 2016 01:21AM
I told my son and daughter from kindergarten as far as I can remember as well. Little bits here and there. I explained about their father being sick and asking them if they wanted to visit (he lived in another state). I didn't want to make it something to be afraid of, or something that they would overhear and stress about because ultimately they were also at risk. Everything was in the open and any time they wanted to discuss it we would stop and talk.

One day they were both in the same health class and the teacher planned to show a video on HD. My daughter went to the teacher and asked if she and her brother could be excused because they were both at risk. It bothered her to see the chorea and she was afraid that the kids would make fun of it on screen (but they didn't). Needless to say, she got 100% on her paper (her brother not so much.. he didn't like doing homework). They researched and knew all about the disease before they were adults. I can't really ever remember them crying about it either. I think talking about it so much when they were younger really prepared my daughter for her diagnoses so early (23).

Re: How do you tell your 10 year old that her mom has Huntington's
March 11, 2017 08:04PM
I am glad you told your daughter. There is no good alternative as I can see it. We told my son and daughter that their dad has HD when they were about 7 & 9 - not long after he was diagnosed. We tried to paint a rosy picture in terms of research and possible treatments. My daughter is now 14 and son is 12. She knows she is at risk because she learned about it in school... I am not sure if my son understands his at-risk status. Unfortunately for all of us their dad is also an alcoholic - alcoholism and HD is an awful combination. His behavior has been very bad and the kids won't see him. They won't talk about it at all either which is very upsetting. They are both doing very well in school, socially, physically... but they won't go there... telling you this because I believe it is work to keep the conversation going - and I think that work pays off in droves. The open communication is something that has to start early so it is just normal and the way things are. You can't wait for a certain more advanced age to come and expect it to be comfortable to be open about it.
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