Hi Just need to have a vent before i say something i regret does anybody else whos partner has HD have no support from his side of the family what so ever its like they walk round with there eyes shut and never come to see there son/brother incase they might be asked for a bit of support or asked to do something, I no its hard for them aas they have lost there wife/mother to HD but that doesn.t mean that its not happening again, i feel like saying so much but i no it want really help the situation and they will have a excuse not to come at all then, I don't no sometimes if I do to much for my parnter who is suffering with being a sleep all time at the moment,and his walking and movments are getting worse sometimes with it being a slow process you don't notice many chages then all of a sudden you can see a big change. i do do everything round the house that needs doing and i still work full time which sometimes is a good thing i for me. I just feel so cross that his dad/brother leave everything to me its like they hide away from the whole thing and want hardly talk to me I suppose its incase i do say something maybe there guilt, I just needed to vent can feel my blood boiling it want be fair to take it out on my parnter not his fault i suppose but he never seems to stick up for me either, which before hd he would of gone mad but we all no it does change the person you love and care for. Tks for listen can feel myself calming now as i have typed this try not to moan but sometimes we all need to Betty.

Hi Betty-
I think it's just human nature that some people bury their head in the sand and pretend that situations just don't exist. After all, it's hard to tend to someone with HD and there is no real reward if you are a person lacking empathy. I don't think it is unique to just the"HD side " of the family. In my case, not one member of my family has as much sent a card to my daughter (never mind visit her) in MANY years. They claim to be embarrassed by her. Like you it has pained me greatly but over the years I have learned to "put it aside in my thoughts." The loss is theirs. So cheer up, you are not the only one dealing with this!

Hey Betty -
I know you are not alone - so many people post with that same frustration. My husband's symptoms aren't so bad now but I can already hear when some members of his family ask how he is doing they only want to hear "fine" and move on. It is so frustrating because a bit of support for you would go a long way I am sure...

I hope you have some time for yourself - don't burn out. If you can think of anything they can do to help you maybe you can ask - you never know - maybe they want to help but don't know how...

Betty, you know i think it's so true, that you can't pick your family, but you can pick your friends, and you can vent to us any time, hang in there

Marsha wrote a great article about different people's different reactions/helpfulness; will see if I can find it....

But yes, most caregivers at least need breaks, and/or periods of venting and/or time for themselves.

I'm not sure if you've directly asked any of these people for help, but I think that was part of the message of Marsha's article, that some people don't know what to do, or are afraid of being asked to do certain things, but may be willing to help if given a direct request for a specific and limited task.

Edit: Found it, under the "Caregiving" tab, first page, 3rd or 4th article down.
[www.hdlf.org]



Edited 1 time(s). Last edit at 06/24/2011 10:37AM by smiling sara.

Betty, what about putting your partner into an adult daycare programme at a local nursing home, where he maybe goes one or two days a week, and gives you a break?

Betty,
I could have written your post myself. I do 100% of everything that needs to be done and my husbands family doesn't even so much as respond to emails. His sibblings came to visit him a few weeks ago, the first time in 8 years. It was a good visit, my phd was in a good mood and had taken his medication. He didn't get angry or lash out at anyone. While they were here they played the game well. "Whatever you need, call us". Pfft. I sent an email asking a simple question and they couldn't even be bothered to reply.

They blame his 'symptoms' on the Dr.'s overmedicating him. I told them straight out, without the medications he would have to be in a facility with supervision. I have numerous police reports, Dr.'s letter and so on...they don't care. Out of sight out of mind. Blame the wife.

My parents are in their 80's and they have been a huge support. His mother is in her late 60's and we haven't heard from her since he was diagnosed 3 years ago. His sibblings all live out of state, and I do understand that but only one has showed enough compassion to call and inquire how things are going. We have 2 young daughters who didn't even know they exsisted and can't understand why they never visit, especially this 'grandma' they don't know.

I guess in the end I'll blame the family disfunction on hd. All his sibblings are at risk and too afraid to test. Sorry to say but the way they behave leads me to believe they are all in the early stages. My husband became very indiferent in the early stages too always saying "thats not my problem'. His mother is not at risk so I have no excuse for her.

It's frustrating, especially when they make me the scape goat when in reality I'm busting my butt to run this house, raise/shield our children, help my own elderly parents AND keep my Phd out of a nursing home (or jail) for as long as possible. The police know the situation and have been more then helpful. But they've warned me that if he gets out of control again they will have to arrest him and he will probably end up in a Psych unit. I walk on eggshells trying to prevent such a thing.

More then once, when things got really bad, I've considered throwing in the towel but then I realize without me his mother would probably let him rot in a homeless shelter or a Psych hospital. So they can call me a b!@#$ all they want, I know in my heart I'm doing the right thing and so far I'm the only family who HASN'T given up on him.

My wife's sister was in a nursing home for 7 years before she died. Her 1/2 sister, the baby of the family, on the 1/2 without the gene, was her guardian.

My wife's mom lived 6.3 miles from that NH. In the entire time her daughter was there, she did not visit. Not one time.

When it came up that my wife's sister may die by the youngest, and that her decision was to let the older sister pass, the mother spoke up.

She said "why are you going to kill her? OMG see what happens when you became involved!!"

and that was all that was ever said.

After the oldest died, she didn't attend what little funeral there was.

Nothing surprises me anymore.

Hi Betty,

Unfortunately, what you are experiencing is very common. I struggled a lot on my own. Occasionally someone would step in to help, but not very often. I don't understand how people can think it's ok to abandon a member of their family in need.

Fred,

That is so sad! I can't even imagine doing something like that.

One reason some family members do not visit or help is because it hurts to see their loved one change and not be the same person they
were before.

Also, some family members do not visit because it reminds them of what could happen to them in the future.

I don't think it is entirely because they do not want to be there or not care but because of one of the above 2 reasons.

Tks everybody for those words of wisdom I have woke up today feeling not so wound up. I can see the point that they don't like looking at my partner as they have been through it




once with there wife/mother and she was in a home very early as they could not cope as a family and the boys then were very young and wasn't the help and support and awarness of HD like there is now. I think sometimes I just get sad as well for my parnter as my family are complete different and there no matter what and when situations arise that are not very nice, But like you say we are all different and cope in different ways but has been a great help to no I'm not alone and some of your situations are the same and worse. Nice to no we can have a vent to people that do understand because sometimes freinds, familys can't understand all the time and don't like to moan to them Tks Everybody.