If you could pass on one thing ... one thing you did wrong with HD, what would that be? It might be an action, a way of thinking, something that you would change if you could for for the next person's benefit.

Don't be mean and say "never marry someone with HD" or whatever. This is if you think your mistake, if avoided would have changed your HD path either for you, your family, or if a caregiver, the sufferer. Maybe all of them? We all have one thing at least one thing that if we could change it, we would have. Take a little time to explain why this one thing turned out to not be what was the best choice. Did it cause you to lose your house, feel guilt you wouldn't feel, lead to endless arguments? This is something even a novice can weigh in on. Lets let whatever someone answers ride... even if you think they are nuts. We are all nuts... I think if enough people answer this honestly... even though there may be 40 different answers... it will be a window into HD and needs and how one can mentor a person when they show up.

So what would you change that the next person could avoid?

I can't think of anything i would change. I don't have any negative actions to advize on, only positive. I would say, do as i've done. Google everything you can about hd. Research everything. Get to know what this disease is, and how you can fight it. Be bold and upfront about hd. Don't be scared to question your doctors, to be in charge of your hd. Don't let hd manage you, you manage it for as long as you can.



Edited 1 time(s). Last edit at 05/12/2010 02:29PM by Barb.

Very good question! I actually just the other day asked this sort of question to myself. I asked myself "if I look back years later at me and my Phd hubby's lives, what would I have done differently? I asked it of myself now so that I could change "now" what I feel I wasn't doing as well as I could be.

I decided that I had withdrawn "physically" from my Phd-hubby. I don't mean "sexually" (that has been gone for a while for us both due to his HD). I mean just "physically" withdrawn. I hadn't been sitting beside him anymore ( I was sitting in on a seperate couch when we watch tv), I was not hugging him and just holding his hand like I used to. I decided I was so stressed that I had withdrawn physical contact and just started being a caregiver. I decided that was something I could correct now and everyone needs a hand to hold and a hug and someone to touch. So, I decided I didn't want to regret us not having that physical contact years down the road.

Wow Lizzie, that was really thoughtful answer

I'll write more later when I have more time because I have a number of things that I would change. But, #1 thing for me is that I would have had the pre-natal testing. We knew my husband was at risk but we were in denial. He has 3 sisters, all with kids by the time we started having kids and no one tested... My husband wasn't even close to being ready to test for himself - I listened to my Mother-in-law telling me that "a cure is around the corner" without doing my own research. I am very hard on myself regarding this because I just feel like I made very bad decisions. My children are amazing - couldn't have asked for better but it rips me apart to think that my decisions may cause them suffering down the line, JHD, etc. I know it is a very personal decision - I would have had the testing if I had to do it over again...

I guess I just wish I'd had more patience & understanding with my Mom earlier. Although my Dad has had unending patience with my Mom, even for 10-15 years with no explanation, I didn't have the patience/understanding until I had the explanation/diagnosis.

oh, yeah...on a practical note: I would have gotten LTC insurance, but I didn't know about doing that before a diagnosis was given. We weren't informed of that before testing.

So, for all you who haven't tested yet.....Get your LTC insurance and Life insurance in order WELL BEFORE TESTING!!!!!

On the practical side, I wish we would have gotten more insurance (disability etc) before testing...never thought about it. And that goes along with not thoroughly researching things early. Someday I may regret not "coming out of the closet" so to speak. I applaud those who are involved in the HD community and don't live in fear. I feel like I want to maintain anonymity because I don't want to "harm" my son or take away chances from him. I may eventually change my mind because I think the public is not aware of this disease and part of that is my fault.
LizzieAnn broached an interesting topic about less intimacy/closeness. I feel this is going on with me too. Part of it is due to being married for awhile, also being a parent to a small child, but also part of it could be HD related...I often feel angry, frightened, watchful for symtoms. I need to work on not letting HD rule my feeling towards my husband or that is going to be another regret.
Another thing I am ashamed to admit that I thought about reading Hope2's comment is that when I'd hear of various diseases in families I felt judgmental towards the families like, "Why did they have kids if they knew there was a risk?" Now I have a different take on it and see that life is not so black and white.
Our family is relatively new to HD so I'm sure I'll have many other mistakes. It will help to read stories and thoughts here so hopefully I can change course if I see I'm headed towards problems.

Yes, the LTC insurance is another one. We had the papers, had a meeting but I never took care of it. It may have been partially (and irrationally) due to anger that I had to take care of EVERYTHING - he hadn't been diagnosed and was being percieved as just lame and not helpful... now we have a diagnosis, I have to take care of everything anyway... and we never go the insurance...

Sorry to post the same thing as you, LizzieAnn! Great minds think alike and you posted while I was typing.
Another thing that goes along with the decission of anonymity is someday the "shit will hit the fan" and our family will be hurt that we hadn't told them earlier. The reason is to protect our child and also I don't want anyone to be looked at differently since there are no obvious symptoms yet. It's against my nature to feel like I'm living a lie.

Leave it to Eric to ask the most thought provoking questions. Mine is ignorance born of fear. HD was little talked about even though fil was physically symptomatic when we met. Rarely a conversation around the potential future, planning, etc. Took at face value the mil's assertion that it was a "physical" disease, like having a perfectly healthy brain trapped in a failing body......yeah, I know, sounds really stupid now. When no amount of "marriage" counselling resolved the cycles of conflict, behaviours became increasingly irrational/demanding and no amount of giving in changed anything much.....I "secretly" started researching.....amazed what a google search for "behavioural symptoms of huntingtons" turned up. Why is this a regret, it is not really, because I believe I've done the best I possibly could do and on balance, approached the increasing frequency of acting out behaviours with patience and compassion. On balance, because it was more often than not, but sure as hell was every time. But I do wonder, if I had more information then, would I have been better able to apply patience and compassion earlier. Could we have had a different conversation when she approached the doctor about testing, then changed her mind when the COE called to set it up a few months later. Maybe more conversation about the implications of testing, support we could premptively put in place, so she had the confidence of knowing it was there, POA's, etc. etc. etc.

Would this have changed anything, no idea, but I will always wonder. Maybe it's selfish, I knew the risk and was confident I was prepared for the physical component, even did manage to get her started on supplements......I wasn't ready to lose the heart, mind and soul of the love of my life.

I felt soo badly about all Joe was losing that I tried to let him keep some things as long as possible. Since he was so good at finances, (and I wasn't) I let him keep doing the bills and checkbook. Until ONE day I came home and found 3 electric bill all overedue on the table.. I asked about them, and WHOOOOOOOOOOOa.. big mistake,, He had a tantrum, NONE OF MY BUSINESS.

SOOOOO I did my own Nancy Drew investigation.. bottom line, I called my parents,, asked for money, they had an insurance policy they had on me since I was a child and borrowed 3 thousand for me so I could get caught up on bills.. This is when the decision was made to sell the house. I went to bank to refinance.. Got turned DOWN during a quick 10 second phone call at end of day.. I raced to bank in my car, and BANGED on the door,, NOOOO NOOOOOOO NOOOOOOOOOO... lol... drama is my middle name.. Now they know me at this bank, this branch was small and all the tellers were elderly and one woman UNLOCKED the door(instead of calling the police) and gave me a card... knowing what happened I surmise.. and told me to call this woman at the other branch and she would help me. She did, I got the loan... we sold the house, we had already been divorced, so we all 4 went our separate ways..

If you want your Phd to hang on to some responsibilities... let it be gardening, or laundry, NOT bills! Pat

Unfair question if you aren't going to answer it yourself Eric.

I have a few things but I guess I would not have bought a big 100+ year old house that always needs love and care. It sure would be nice to not always have something to do hanging over your head. Or on the same lines I would have been way more savy with my finances and not had a mortgage to afford to pay for workers to do the work

I think I would have let more people help from the beginning. I tended to think I could do it all myself so when people offered assistance I declined,, be it family, friends etc. Now when there are those times that I need help the help is for the most part not there.

okay Eric so what would you change?

I get to go last... In fairness I have posted lots of mistakes though...

My answer is the same as franj.I thought that I was superman,I thought that I could do it all.Michael was my responsibility and it was up to me to do everything.In reality however I was not being fair on either of us,I was burnt out and he was not recieving the 'Quality' of care that he needed due to my pride.When he eventually went to a care facility both our lives improved dramatically,though the initial guilt was terrible,I felt like I had failed him.It is very difficult to see these things in their true light when you are on the inside looking out,looking back it is completely different.It was the right decision made a little too late,but the guilt disappeared.Take good care.Gordon

I wish that I was more sympathetic to my husband. Things went very quickly from husband and wife to patient and caregiver. I ended up withdrawing from him, emotionally and physically when he needed me the most. I was very scared and I guess it was my way of dealing. I have not had a lot of patience with him and have even become resentful. It was hard though having HD show up out of no where and not knowing what to expect.

I wish i had been more patient with my siblings, i wish i could have risen above my one brother's anger and ability to get to me....I know that there were many instances that i had to be a pit-bull, but i should have shown more compassion and patience, instead of being hotheaded and expecting that it should go the way i thought it should go. It definitely made things worse, me being that way.

Hugs,

Suzanne

There are so many things that I could have differently had we even known that HD was in our family. Knowledge, in and of itself, could have helped so much in helping my mom make some of her decisions while she was more or less able. Right now, I think the main thing that I regret not doing was trying to understand where she was coming from and getting very impatient with her. I just hated everything being a fight and I had to realize that she wasn't arguing just to be disagreeable but because she was trying to figuring everything out the best way she could.

I know I could have been kinder at times and I wish I had had more energy and gotten more things done but honestly, I did the absolute best I could at the time. There wasn't any more in me to give. I stuck it out as long as I possibly could. I took meds, I saw a counselor, but at the end I was getting seriously ill myself and I was afraid of what he might do.

I don't have any real regrets. I think I did the best I could and so did he.