My husband is a youth pastor. Recently, we had a young man join our youth group whose mother is suffering from Huntingon's Disease. We are trying to gain some perspective on what this young man is dealing with. What would his struggles be? Does he see constant suffering? What is the best way for us to comfort and encourage him? Is there any kind of support we should be offering? His mom is young…mid 40's. We don't want to prod him for information so we've decided to learn as much as we can about the disease. If you had one thing you wanted to tell me about this disease what would it be? Also, FYI, this young man's father is in his 40's also and has cystic fibrosis so he's already outlived his expected lifespan.



Edited 1 time(s). Last edit at 05/06/2014 01:46PM by mrsamy6395.

I've read your post, understand the situation, but I am at a loss of words to begin the needed explaination.
I would first want to know the stage in which the Mother is now at. given that, the care given status within the family needs to be known.

I can assure you, any and all assistance will be needed

wish I could provide you more, but typing is best means to convey

JFB

I'm touched that he would want to help. Two people who might give you some perspective are her doctor and/or a social worker (if she has one.) If she is being treated at a Huntington's Center of Excellence, social workers are a great resource.

Of course you would want the son's permission before you contact them.

Will

He may be dealing with violent outbursts, which may make him isolated from friends his age. Most kids in his boat probably don't want to bring any friends to his house, if she is like that. He most likely has all the house hold responsibilities if his Dad is ill. So he could be doing all the laundry, cooking, cleaning. lawn, trash... She may have balance issues and uncontrolled movements which make big messes-spilling drinks etc. He may need groceries or toiletries. If he is able to get out, maybe a gift certificate to a movie, gas station or a clothing store in your area. Depending on his dads abilities to help, he made need legal help, he will eventually probably need to become her guardian or make other legal decisions. He also has a 50 % chance of inheriting this dreadful disease. So he really needs people who understand how to help him just vent and people he trusts. There is so much on the internet and even videos on you tube that can help you understand the type of things that would be helpful. There should be a social worker who is aware of his situation too and can help him find the proper agencies he might need to have handy in case there is an emergency. Find out as much as you can and don't be afraid to ask him about things, he will let you know if it goes somewhere he is uncomfortable with sharing.
To answer your question, yes he probably sees constant suffering in both his Mom and Dad's health issues. Hers could be more mental before it is physical and probably opposite with his dad. Let him know he is safe with you, and give him as many opportunities to just be a kid and part of the crowd.

Bless you all for wanting to help him. If he has other family, try to reach out to them and be sure they know what is going on with him, he may be more apt to share with you than he is with them.

Vicky

That young man has a huge weight on his shoulders. If he has read anything about HD he will know he too is at risk.

If you need a way to break the ice, I would suggest getting some printed information about HD. Let him know you hope he didn't mind you looked into it since you weren't familiar and if you could be of help you would know a little about the disease. Then maybe you could ask him some simple questions from the information and perhaps he would then open up to you or you may find he doesn't have much knowledge about the disease. This would then give all of you some opportunities.

Good Luck,

Mike

I cannot thank you all enough for your help. I have spent almost 2 solid day reading everything I could find about this disease. There are two children involved here, a 15 year old boy and an 11 year old. From what I can tell, Mom is about two years into her journey with this disease, but unfortunately, the family (including the boys) is very familiar with it because Grandpa passed away from it about 5 years ago.

I do have one more question. I was trying to figure out how to best reach out and be a blessing. I thought I would take a meal to the house, but from what I've read, choking is a MAJOR issue. Are there dietary restrictions that would make it a bad idea to take them food?

Things that slide easily are best, if she is having chocking problems, you could take some baked potatoes, puddings, really soft meats with gravies, apple sauce, pastas. My husband was given a liquid "thickener" to add to juices and things, so they like seem to do better with a little texture-not too watery. My husband has trouble with chicken in particular or dry meats. you could take a mixture of both types of food, as the kids might like a change of pace. Like maybe pizza and pasta, perhaps and then they can choose what she might be able to eat. She may not have a chocking issue at this stage and might just join them in a slice or two.
If you see that the meals are a need for them, you may get several families in the church to rotate a meal or a couple meals a week. If this is a need now, that will not change for them for a VERY long time and they will continue to need help in that area. I am thankful God leads people as yourself in the service of others.

Vicky

Mike had a good point about the children probably knowing they're at risk. Some kids are better than others at dealing with this. Maybe you could figure out some regular activities to take them out of the house and get their minds off diseases for a while. There's also a group called the National Youth Alliance, a part of the Huntington's Disease Society of America (HDSA). It's a way for youth in the HD community to connect with each other. They're a great group.

[www.hdsa.org]

Will

My kids were teenagers when their dad was diagnosed with HD, but he had experienced symptoms for several years prior to diagnosis; mostly behavioral and poor financial decisions. One of our biggest challenges early on was how to react to his anger issues and erratic behavior. I did a lot of research and talked openly with the kids about what our future was going to be like with their father, as well as the fact that they were also at risk. We had a few very difficult years while we worked to stabilize his mental state. His behavior has improved with meds, but his cognitive and physical symptoms are slowly getting worse.
I believe that it's important that you build a relationship with these kids so as their home life gets more difficult, they have a place they can go to where they can feel comfortable and safe. Cooking meals for the family is a good thing, but there are also other things you can do to help the family, especially if dad is also in poor health. Arrange to come to the house once or twice a month to help with the "big stuff", i.e. scrubbing bathrooms, floors, dusting, vacuming, laundry, etc... Help with the yard work or any home maintenance needed. Help with school projects or homework. Attend any sporting events or school activities they happened to be involved in to show your support. Help them through the grieving process because it will be a long one, as they watch their mother slowly deteriorate mentally and physically over the course of several years. Encourage the kids to join HDSA Youth Alliance so they can reach out to other kids going through the same struggles. And most of all, keep reminding them that this is not a journey they have to take alone, our Father in heaven is by their side the whole way.
djc

The biggest thing I hope for when my kids join extracurricular activities is that people will treat them like normal kids. It would always be nice to offer a "How are your parents?" and "Is there anything you need. " If the kids do not open up, step back and let them enjoy an HD (and CF) free evening with other kids their age.

Though there is a need for outside assistance with my family, most of the time we are just skating along with their Dad's illness. I like to get the kids involved with outside activities to get their minds OFF the HD.

Thank you for your care and concern with this family.
Patty

I think what Patty said is true too, perhaps the parents want the kids to have a "normal" activity outside of the home. If the mother is only 2 years into the disease, I think it would be good to meet the parents and involve them. Nobody likes to feel that someone is offering their kids help, but bypassing the parents. I would make a phone call to the parents, tell them you understand they are dealing with hd, and that you and your husband would love to come by for a visit, get to know them, and see if there is anything you as a church can offer, like the house cleaning idea, or yard work. Talk to the parents, find out what area of their household they are having trouble keeping up with. Also, visiting the parents will answer all your questions as to what things are like at home for the kids. The mother and father themselves may be going through a lot of grief and depression over her diagnosis. Maybe she would like to get out of the house once a month, and come to a ladies craft night or something. Swallowing problems and having pureed foods usually only happens in very late hd. She could be having a lot of trouble with organizational skills right now, that could be effecting the housework, the kids homework, etc,

Also, I know of a very very good resource, a young man in britian has made a world youth organization, online, that is excellent. It also has sections for parents and adults, on how to talk to children about hd. Does anyone remember Matty's website?????

But most important, don't bypass the parents, or that could really cause hurt feelings. You and your husband are doing fantastic looking into all of this, thank you

Barb asked about Matt Ellison. He is a great person. www.HDYO.org That stands for HD Youth Organization.

Will