Help! My husband has HD. He is now on disability and I am currently unemployed and care for him 24/7.

During this past summer he is always following me everywhere I go. He can no longer drive, so I have to do all the shopping. cleaning the house, bills, all yard work, inside cleaning.....EVERYTHING!! Problem is - he does not want me to do these things. They are absolutley necessary. Hello? Even when I cut the lawn (he stands there and watches every move I make) Ugh....when I make dinner - he breaths down my back and wants to help (understandable) and tells me what I should do.

He is driving me crazy. The only way I can get a few minutes to do what I need to do is to give him cigarettes. He loves to smoke.

Is there anybody out there that can give me some advise??????

I need to get him out of the house - but he is dangerous to drive with. I cannot use my wind shield wipers (he has a fettish about them and can't stand them) and he hates speed limits. So ---- I really can't drive him anywhere, but other people can.

Which brings me to this other problem - we used to have many friends and family members ---- all of the people are that we used to be in contact with are suddenly disappearing - POOF!!! They feel that they cannot see him having HD so they "stay away" and make excuses for not coming around.

I feel very bitter towards so many of these "so-called fair-weather freinds and family members". F _ _ _ You people!!!! When we need you the most, you scurry away like cockroaches.

OMG thorflower,,,,you are so funny! It's true that some phd's cling............it's all part of this disease. My son who lives with me says he always wants me to go out, yet when I do, he acts like he doesn't want to be alone and for me not to leave............what?..............very confusing. It you spend quality time with him certain times of everyday, it's possible he may leave you alone when you do your chores.........I hope that helps some. I also understand the disappearing so-called "friends" as well..........karma is a b......h!!!

A schedule helped me and my husband. He did best when he knew what was happening and there were no surprises. For example every Tuesday was grocery day, Saturday and Sunday's were go out for coffee days.

He did much better when his days became scheduled. Wake up, go to bed, eat meals etc at the same time each day. I also had to schedule time for me to be able to do things like 7:00 to 8:00 pm I clean or do laundry while he watches a show on tv. I would remind him I clean until 8:00 and then I will watch tv with you. And I stuck to this. If I didn't it would upset him and his behaviours would increase.

He lives in a pch now and has to have a clock in his room and keeps an eye on it. He still has a schedule and is unsettled if something throws off that schedule. Supper is served at 4:45pm. Today at 4:40 pm he said "5 minutes supper", at 4:45 he said "supper". And off he went for supper. Yesterday I took him out. It was close to supper time and we weren't back at his pch. He became unsettled and worried. Focused on the time. I knew right away that he was worried about missing supper.

I totally understand! You feel like you have zero time for yourself! They do often get upset when things are not focused on them. It's HD and they can't help it! I find also that my husband gets happy just as quick as he got angry with me, so I just don't take it personal and I have found a way to just not argue with him and do my thing! The schedule suggestion seems to work great and maybe you can just include a few hours a week for yourself. Just put it on the schedule that that is your alone time to mow, take a bath, go for a drive, visit with a friend etc. It is very hard for people to understand HD-hard enough for me as a spouse, much less people who aren't familiar with it. I do not give your (or his) family a pass for not helping you. I do understand friends being scared away to some extent. So I hope you will be forgiving of that. They may be scared that they may not be able to handle a melt down or medical emergency. Family on the other hand, should be available to you if even just to take care of your lawn. I agree friends should be willing to do that and drop off a meal or help with something that is a little less direct than driving him somewhere, but I know I am scared of a melt down and I have seen a few, so they may just feel unequipped to handle that part of YOUR journey...
Please take some time for yourself and get him used to the idea by putting it on paper, so he knows to expect this!
You may also try to find a support group in your area who may be able to provide you with some other resources.
Best of luck to you! ( Both)
Vicky

Thorflower, I'm so sorry about the disappearing "friends". That is something that seems to unfortunately be a common theme posted here. It's got to hurt. But I just love the wonderful support and great ideas everyone shares on this site.

I am the primary caregiver for my 34 year old son with HD. I often feel smothered by the extent of his needs. I do try to carve out some time for me to have a life but it is not easy. He is very dependent on me and also very possessive of me. I just try to take a breath and understand his perspective, he knows what is happening to him and he counts on me to take care of him. HD is a monster, no other way to put it.
Schedules are very important, it gives him some calmness if things go as usual. He is developing some OCD symptoms which tend to drive me a little nuts but I just try to go with it.
He used to hang around the kitchen while I was preparing food but I told him I could get this food cooked faster if you sat down!! Food and faster did the trick.
I have a wonderful small family group that includes my older son (also HD +) my sister and brother-in-law and my husband who help me with Tim, but his friends went away along with his wife several years back.
Hang in there.

Carla