Hi All

I have not been on the board for a while. My husband is getting up and falling several times a day. He will not wait for me to help him to and from the bathroom (which he visits frequently). When asked he says he does not remember to wait. As most of you know he is late stage. Does anyone know a solution for this? I asked him if I could slip a bathrobe tie around him to help him remember and he refused. He has been refusing a lot of things lately and I think maybe he has given up. Who could blame him? Any advice will be appreciated!

I don't have any ideas but my thoughts and prayers are with you.

You know what Diane? I don't have any answers for you either but I can sure sympathize. I've been going through the same thing with my husband lately. I have to go through the ritual of verbal clues (or nagging) every time he has to move around the house. I think he's taken a fall every day this week and it's a miracle there haven't been more. All I can say is my thoughts and prayers are with you too.



Edited 1 time(s). Last edit at 05/15/2007 07:50PM by marg.

Thanks for your thoughts.

Have you considered that it may be time to look at nursing facilities? There is a point where someone needs more assistance for their own health and safety than one person can provide. What seems like kind and loving thing to do by keeping a person at home, turns out to be not the best thing for either person. Are you at that point yet?

It might change his habits for a while. Tell him you are gonna give him some new "therapy" for a while. Take him there and get him into that routine.

He would open up to the new setting and adapt. Then when and if you decided to get him back home he would be "reset".

Keeping him in the same sheltered environment will enable him to refuse IMHO.

Eric or anyone else - -

How do you decide when that point is reached? I know I've asked the doctors and they say "oh, you will know". I don't know if I can deal with the guilt when it comes. Yes, there is the fact that it would be best for him at that "real" point. I just don't want to make it too soon just because I am going round the bend for the umteenth and what I think at the time is the final time. Somehow you always have one more time left in you. All my husband does is eat and the only words he says to me are: I need cereal, I need ice cream, I need---always something to eat. Did you get the cereal, ice cream or whatever. I have considered just having a grocery clerk drop by every several days and take his grocery list. (I'm straying from the point of my question.) I appreciate your help and knowledge. Thank you.

I think if a persons health is being affected that should be a consideration . Either the health of the pHD or the cargiver . If the caregiver is unable to give the best care for the pHD , because it is beyond their capabilities , then , it might be wise to consider outside help . And , what if the caregivers health is being affected , that is something to consider , as a reason for , outside help . db

I think the point comes when you having health problems because of it. When you have trouble meeting their needs as well as your own that's when you need to consider if you are actually doing the right thing.

Nursing homes can offer their patients a wide variety of activities, food, friends, and help them. It's impersonal sometimes, but nothing is perfect.

If the caregiver falls everybody loses.

The best way to tell is to do a trail at a NH. It's usually pretty simple to get a home to take a patient short term. Ask the doctor for a respite. Tell them to schedule some occupational or other physical therapy at a local nursing home. Get the patient in the hospital and then transfer him/her from there to the home.

Get a couple of weeks. They get care and you get a rest. Nothing is permanent, and everybody gets a break.

"Oh you will know." is usually the not the case. We get so used to care giving and gradual decline we don't see what is happening to the sufferer or to us. Yes when one or the other keels over we know. But really there is a point before that when the decision should made. If you are home 24/7 but only get 4hrs of sleep... that is a clue. If things happen while you sleep...while your back is turned...when you go out... then it is time. Ten falls a day or even one might mean that the caregiver is falling behind the care needed. Honestly there is just a time to accept help whether it is in-home help or a nursing home. Asking a relative from the outside if it is time is a good way if you are honest about what is happening inside the home. They can see when things have gotten unmanageable usually.

Eric-
I always like to see your take on things because you are honest and
have excellent, workable ideas. Thanks for being here.

Eric-
I always like to see your take on things because you are honest and
have excellent, workable ideas. Thanks for being here.

Eric does tend to have quite practical solutions.

I appreciate that, as well.

Before Ray moved in with us I talked to my Dr alot about Huntingtons and what to expect and he made me promise that there would be no deals with Ray,no promises because he said that in the end I would be the one left holding the guilt and he also told me when he says enough is enough then I have to agree.Not only for Ray's well being,but also for my own.

Sue

I think that making the 'decision' for a care facility is probably the toughest choice that we make as caregivers.In my case I thought,and vowed,to watch and care for my son at home until the very end.In reality this was not possible,I was worn out,run down and physically ill.I was not letting Michael down by placing him in a care facility,I was letting him down by trying to do it all myself.There comes a point when we have to realise that we are only human,it is because we love these people that we are forced to make some horrid decisions that are 'for the best',but they are for the best.
I felt very guilty at first placing Michael in a care facility,now I know that it was good for us all.I wasn't exhausted,he wasn't angry,the time that we spent together was quality time,I could also have some quality time with my daughter.
It is a very tough choice to make but there are benefits for everyone and we are only human.
Take good care.
Gordon

It's quite true that the benefit of EVERYONE involved must be taken into consideration.

I am always so impressed by the responses given to a topic like this. There is so much caring in the HD community. God Bless all of you.

edited...posted in the wrong thread.



Edited 1 time(s). Last edit at 05/17/2007 02:06PM by Eric.

My mom was the one who finally made the decision to go into a facility. She had been living on her own and we tried to get her into somewhere but she would have none of it. She was falling alot. We had meals on wheels come and giver her food, had someone clean for her. She had a friend that died from a brain injury when he was alone and that was when she decided it was time. Once she decided there was no stopping her and it could not happen fast enough.

She was very happy where we placed her. The staff bent over backwards to make sure she had everything she needed.

My mom was in a position to help with that decision. I realize I was luck because most caregivers usually have to make that decision on their own. It was tough with my moms help. I cant imagine what the decision must be like otherwise.

Stacy-NJ

I have gotten such a lot from reading other peoples posts these last few weeks, as well as from certain people. I thank them. This really is a great place to come to.

I can hardly believe that i found this subject going on right now, It has answered what I was thinking about last night.
I hated to have to admit to my self that caring for Rikki right now is just a bit too hard & for the first time, last night, I decided that maybe I need some help from a nursing home.

I always thought that I would care for her at home no matter what.

This morning, I felt guilty for considering outside help & have spent most of today with conflicting thoughts going round & round.

Eric, yes,I think I am at' that point'.Very few hours of sleep is a 'big
clue'.

Fred, I like your idea of a trial. I would like if she could have some time in NH & some at home, at least at first until we get used to it.

Gordon, making that decision really is tough. I 'vowed' & I am worn out, but thanks to all of you I will feel better about my guilt & when that day comes I will remember that I am 'only human' & that getting help with her care is for 'the best'.

Thanks to all of you for being here.

Wishing you all well.
Myrna