HD Australia

Hi everyone,

Today is a public holiday in Victoria which means that hubby is not likely to have a carer come to take him out. I went to see him on Saturday and took a photo album and spent an hour and a half going through the album so we had something to talk about. Otherwise he sits with his head down and dribbling and not much conversation at all. This upsets me so by the time I am driving out I am in tears again.

I've had a call from his facility saying he wanted to speak with me, I knew what that meant. I called them back and they said he wanted me to visit, they put him on the phone and he could hardly speak of course and I told him I couldn't make it in. He sounded like I have let him down but it is so hard to go in and watch him dozing off in the chair and not able to answer anything I ask him. I've just been through a really bad crying period and the Dr thinks it could be hormonal but obviously circumstances in my life haven't helped at all.

I just feel bad because it's only housework, shopping and going to get some dvds that I have to do - if he came home I would have to entertain him which is difficult these days when you can't hold a conversation. I do get his carer to call in often so he does come home more and I have the carer to talk to while Anthony plays with the dog.

I guess I will carry this guilt around all day, knowing he is just sitting at the facility listening to the radio all day. I'm just scared that by going there it will cause me more upset which I don't need at the moment because once I start I can't stop. At least if he moves to Arthur Preston he will be busy every day and won't notice the days I don't get in because there is always something happening there for the HD patients of which I think there are 30.

Thanks for listening.

Debbie

Hi Debbie,

Don't beat yourself up about not visiting today. You've always done so much for Anthony and your two boys - it will be better when Anthony moves to Arthur Preston where they will keep him occupied hopefully - so that your visits aren't the only thing he will have to dwell on.

I'm not sure if I've posted on the forum that my uncle (66) with HD has been deteriorating for some years but still living at home until a recent psychotic episode with paranoia. He got himself admitted to the acute mental health unit at the local public hospital - most people are only there for a couple of days before they are moved to a psych ward. He's been there 7 WEEKS - I think they don't know what to do with him or where to put him (he has been assessed last week as needing 24 hour care - his wife works full-time - so I think the social workers are going to take him to look at places with hostel care).

I've visited him - it's in a common room with 29 other patients and their visitors, and the TV blaring - so apart from the usual difficulty of having a conversation and understanding what he says in a very quiet voice - the noise level makes it practically impossible. He has a lot of trouble speaking, and sometimes involuntarily spits out his food and drink. He also has started making things up - but I just roll with anything he says. His chorea is really bad - so it's painful to watch him try to walk, or make a cup of tea - takes about 20 minutes.

This is my first close-up of anyone in my family suffering severe symptoms of HD - so it has made it all too real and uncomfortably close for me.

So - hang in there, Debbie - try to make it easier on yourself by thinking about all the positive things you have done for, and with, Anthony, instead of focussing on not visiting him today. I think the carer bringing him home for a visit is the best option, as you say.

Thinking of you,

sonnie xx

Hi Debbie,
Don’t stress yourself out for being guilty. As a carer myself I always feel guilty when things doesn’t seem right but you have to deal with it. I think it’s part of our life cycle as people affected by this disease. As a functioning person our conscience is always burden as by so many things. Sometimes we give-in to things we don’t want to do but sometimes we just force ourselves to do this thing because it was the right thing to do.
For myself the task of just feeding, dressing up and putting my wife to take a bath seems to be a big battle of my day to day life. Every day I need to push this and push that and force her to follow me (like a military general). I feel like everything should happened on my terms.  
But the best guilt for myself was watching my 3 kids growing up and asking me why is mum like that? And, having to lie for an answer.
My kids are always asking. Why they cannot invite their friends to our house? Why can we go fishing? Why can I have a big birthday party?  I guessed, it’s a big burdened for me to keep this secret away from some family friends.
And every day passes without seeing any cure development is always putting another lines on my wrinkles.

regards, jim

Hey Debbie...sorry for the late reply. I hope you managed to not let guilt take over your whole day. Its good you were able to say no and take care of yourself. Its hard though i know. I know when i recently went away for a few weeks i felt really guilty! But a good friend said to me that i may as well sit in another country and feel guilty, cause im gonna feel guilty here anyway....lol...so i thought yeah its true...we cant let guilt stop us from doing the things we need to do to take care of ourselves. So good on you for having the knowledge in that situation about what you needed to do for you.

Simple Jim...i really appreciated the honesty in your post about what this is like for you and your kids.
Im currently working on a youth webpage, which will be up and running soon. It may help to answer some of your kids questions, when you guys are ready to talk about it all. Its really hard growing up with a parent with HD...it sounds like you do a huge task in juggling everyone needs....and trying to answer things the best you can. Thanks for sharing.

Michelle

Thank you everyone for your answers, they all made perfect sense even though I felt (and to some degree still do) guilty. I just had come out of a very low stage and knew going back to see him would bring me straight down again and I'm tired of crying, I'm even counting how many days since I last cried and at the moment I'm doing well.

I went to the movies 2 nights in a row, had 2 ladies drop in for a cuppa who I've known since 1994 and am waiting for another trip to the movies. Anthony gets to go out every day, I don't. I am happy to be at home but do get bored but nervous about taking on something in case I go through another low period.

Jim, you are doing a fantastic job with bringing up your children and now assisting your wife (I refuse to call you a carer). Do you find she is like a child at times and refuses to do what you ask her? I find that, I ask hubby to go to the toilet & he'll refuse, I ask him to leave the dog to just sit beside him and not pull her around and make her bark at the facility and he ignores me. Then he's upset when I don't take her - I don't tell him why in case he feels he's done wrong and I don't want him to think the disease is causing all these problems. I make excuses instead.

I hope you are getting some help with your wife, sounds like you are every girl's dream husband. There till the end, it's very difficult and I commend you for what you are doing.


Debbie

Hi Deb,


Don't be too hard on yourself.
My dad was in Arthur Preston untill he died.

Im sure that he will understand, you need some you time aswell.
You need to look afteryourself and you shouldnt feel bad.
Im sure he ubderstands.

Luv
mandy