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Experiences of living in a family with HD

United Kingdom
Life is to be lived
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Young adults Forum support

Hi Hannah,

Welcome to the HDYO forum. Thanks for sharing your situation. It is not unusual to have the feelings you have about your dad’s progression with HD. Being told about HD and actually seeing HD can be two very different things to deal with. I am wondering what things you feel you aren’t coping well with right now with your dad?

Take care,
Matt

United Kingdom
Life is to be lived
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Young adults Forum support

Hey Kirsten,

Just to let you know, you can message on here. Just click on the person's name and you should be able to send them a private message as long as they have ticked the box on their account to accept messages. :)

Take care,
Matt

Australia
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Teens

Hi Matt,
Thank you for taking the time to reply to me, it means a lot. I don't think I'm coping too well with not know when, or how bad his HD is going to be, and not knowing if my sister or myself have the disease. I'm slowly getting better with coping, I think it was just the fact that when he was at work I couldn't notice anything different, it was as if his HD wasn't there, but now he's at home it's hard realising that his HD is there and slowly creeping it's way into our lives more and more. Again thank's for replying Matt :)

Australia
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Young adults

Hey Everyone,

I thought I would share something I heard the other day that might be helpful for people living in a family impacted by HD; particularly people in the family who help out with caring for their HD diagnosed family member.

As a someone who lives in a family with HD it can be easy to put yourself and your own welbeing after your HD diagnosed family member. This is an extremely caring attribute to have to want to support and assist others before yourself. However, the following scenario might help to realise this isn't always the best thing...

Picture yourself on an aeroplane and think back to the safety information they provide on oxigan masks.

Who do you put the mast on first? Yourself or children in your care?

The answer will always be yourself first, then once you have your own oxygen secured you can assist others. This is because it is impossible to assist and care for others if you don't have oxygen yourself. Seems pretty common sense right?

We apply this idea in an aroplane so why not in a HD family? Care and look after yourself and your own needs first then your HD diagnosed family member; if you don't then how can you continue to assist them without (for lack of a better term) loosing it?

You and your family will both benefit; so don't feel guilt for putting yourself first; even if its only part of the time.

So use this as a reminder to take time out for yourself and ask for support from others whenever needed.

I hope someone finds this helpful, I hope my explanation has made sense.

Thanks Guys :)

Canada
Things happen for a reason
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Young adults Forum support

Hey Alexandra,

That is a great analogy. It can be difficult to follow, but a great way to explain taking care of your own well being.

Thank you for sharing. It was very insightful.

Cheers,
Chelsie

United Kingdom
Life is to be lived
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Young adults Forum support

You are welcome Hannah. I can certainly understand how having your dad at home can make it hard to watch the HD progress. But perhaps there is a positive to this too. Maybe you can use this as an opportunity to spend more time with your dad, now that he isn't working. Do you think that would be possible... or a good idea?

But I'm glad to hear that you feel you are slowly getting better with the coping. If you or your sister ever feel differently come to us and we will always be here to listen and help.

Take care,
Matt

Australia
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Parents

Hi,
I found it interesting to read others stories.
I like some of the others really enjoyed watching my mum sleep as it was the only time she didn't move, so peaceful. I also channeled this mentality when she passed and found peace in the fact that she wasn't suffering anymore.
I believe (and have heard many times from others living with disability, not just HD) this challenge we face daily makes us better people. Meaning more compassionate to those around us, more caring, more involved and aware of the welfare of other people. Qualities you may never have developed so young if it wasn't for the journey you're on. This also opens up connections (people/places) you may never had.
I have also always held on to the fact that we don't get dealt cards we can't handle. This helped me through many times, at home and through testing.
All the best,
Breie x

Zoe
United States of America
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Teens

Hey. I'm 16 years old only learned that my mom has HD about 4 months ago. In the years leading up to this, my relationship with her was very tense. I was always angry, feeling like she had "given up" on being a mom. I was also embarrassed about the way she conducted herself in public (and at home too), and was furious about her ability to cause an argument every single day. At one point, I told my dad that I thought she needed to see a shrink for her anger issues, and this was when he decided to tell me about my moms sickness. I felt very sad of course, but at the same time I felt relieved to have an explanation. I thought that knowing she had HD would make it easier for me to forgive her actions and to accept and understand why she behaves like she does, but it really hasn't. I feel an inner rage whenever she enters the room just because of her presence. She tries to speak to me and get to know me, but at this point it just feels superficial. I've really tried my hardest to take her syndrome into consideration, but every time I speak to her I become so frustrated. She asks the most impersonal questions that either have obvious answers or that she would have absolutely no interest in hearing the answer to. For example "do you have a test tomorrow?" "at what time are you taking the test?" "at what time are you waking up tomorrow?" "how was school?" "do you have any plans for the weekend?". I know these questions are typical motherly questions, but they are the only ones she ever asks. I reply as short as possible or I just make a sound, either way she answers "okay" and typically asks the same question again a few hours later which only proves she doesn't listen or care for my answers in the first place.
She also tries to compensate by asking if I want to travel somewhere or go to the spa with her, but I always say no because it would just be awkward. I really don't know her and she doesn't know me and (I know this sounds terrible) the last thing I want to do is be stuck with her for any more time than the absolute minimum. I would also feel like I'm using her for her money if I accept her offer, because I would definitely have rejected an offer to spend time together if it didn't include a trip or spa day.
On Christmas day, my dad said that my mom and I should walk ahead and then he would pick us up by car on the way. I started crying because I really couldn't imagine anything worse than being forced to spend one-on-one time with her. Whenever it's just my mom and I for dinner, we don't exchange a single word. We just sit in silence and I just build up with anger.
I know all this is a lot and it's very negative but it's my honest feelings and I don't feel comfortable going to a shrink so I thought maybe this could be a good place to vent. It seems like everyone here is okay with having HD in their family and I admire them for taking such good care of their sick parent/spouse/sibling etc. but I just can't stand my mom. It feels terrible to say and I know how incredibly wrong it is, but I just don't love her. We have absolutely no relationship and whenever I try to do something about it, it just feels forced. Also, she becomes overly excited and incredibly awkward when I try to make any contact with her which only makes me pull back again. She has on several occasions told me that I love my dad more than her, that I only use her as my private butler, that I only talk to her when I want something, as well as very awkward things such as that she wants more "physical contact". I just can't stand her anymore, I start crying in anger when she's present. Im sorry this is so long and brutally honest, but I hope there's someone else who has a similar experience.

Canada
Things happen for a reason
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Young adults Forum support

Welcome to HDYO Zoe!

It was very brave of you to share your story. Many of us have gone through similar experiences. Here is a great article that discusses what it is like living in a family with HD - http://en.hdyo.org/you/articles/62

Have you heard about the upcoming North American HDYO camp? http://en.hdyo.org/eve/events/524

The United States has a great HD organization that will keep you up to date with current information - http://hdsa.org/

Hope this helps!

Cheers,
Chelsie

United Kingdom
Life is to be lived
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Young adults Forum support

Hi Zoe,

Thank you for posting on the forum and for sharing your experience/feelings so bravely. Your post is interesting. As you said, not many young people seem to post that they really struggle to connect or be around their parent who has HD. However, I would guess that you're not alone with these feelings. I experienced similar myself with my dad for a few years during his progression, it's not unusual to feel embarrassed or angry about the way your parent's actions are making you feel. But that's an important point, HD impacts on a person's mind, mood and movements, people's personalities can change during the progression of HD, they can become aggressive or show odd behaviour. This is probably why your mom asks questions over and over again for example. HD is damaging your mom's brain unfortunately, making it very difficult for her to be the person she wants to be. You've only known that your mom has HD for 4 months so it is really understandable that you aren't 'accepting' of that news yet. It will take time to digest this news, to truly comprehend what it means beyond searching on google for answers. It takes everyone time to accept HD, it took me many years to be honest. Don't be too hard on yourself that you are struggling with your relationship with your mom, it's not your fault and your not the only one in a HD family going through the exact same issues. I would recommend applying for our camp in North America (https://en.hdyo.org/eve/events/524), it's a great chance to meet so many other young people impacted by HD.

Do you live with both parents? You made it sound like you had a good relationship with your dad and spent little time with your mom so I was just wondering what your usual home life is like. What other symptoms is your mom showing? How long has she had symptoms for do you know?

This is a great place to vent! :) Well done for doing so. You can reply to me on here or send me an email (matt@hdyo.org).

Matt