Sandi, I want to thank you again for all the help you have given to me and I am sure others on the site. I have another question and hope you will share your experience. I have worried a lot about the bedridden stage and just how to handle things when we get to that point. I hope and pray something happens before that time comes for us but yet I know it can. I want to try to be prepared. You have shared the day to day routine, would you share how the bath time goes and what you do or do not do to make it easy. I say easy and of course nothing you could be doing would be easy but I am sure you know what I am trying to say. You have said that your DH has no broken skin and such, do you use a hoyer lift at all with him or is he too advanced even for that? Do you have hospice service at all? Just some of the things I wonder and worry about.
Jane, I hope you never get to the bedridden point, too. All the research tells you that this stage doesn't last long...don't believe a word of it. My husband has been unable to move for over four years now. I do realize he is "young" and pretty healthy, and I guess that is why he is hanging on so long.
As far as a "big" bath goes, I have people who come in to do that for me. They get him up (no lift...too big for the room) put him in a wheelchair and take him to my bathroom (much bigger) and get him on a sliding bath chair and shower him. The rest of the time I just clean him up whenever he needs it and by watching professionals I learned to give a pretty good bed bath and have even changed his bed with him in it. Not so easy to do, but sometimes desperate times (and a BIG mess) call for desperate measures. On the other hand, taking care of him at this stage is so much better than when he was up, trying to walk and falling and breaking his nose. I don't have to worry about that plus I know where he is at all times and he can't fight and resist care...everything is a tradeoff, isn't it?
He was under hospice care for 18 months while he was at the facility, but he didn't qualify any more when he stopped declining. I plan to call them again when I see that he gets to a stage where I can see he is on a decline...losing weight, having difficulty swallowing or getting any skin breakdowns.
Doing this is not easy, and I wouldn't recommend it to everyone. You have to be physically able to do the rolling and shifting of the dead weight and mentally you must have arrived at the place where you have somewhat disconnected and have gone thru the stages of grief. But, that being said, I am one of those who think they can do anything and just "know" that my way is the best way...LOL....you know the type, right?
Jane, you are doing a great job, but please don't ever feel bad if you have to find a place for your DH.....sometimes our health and needs have to be placed first. The caregiver is an important part of the caring equation, and sometimes we overlook that. It took me a long time to realize that but now I have taken the time and effort to join Weight Watchers, go to water aerobics three times a week and have joined a fitness center to just take care of me. Taking care of your physical self certainly gives a boost to your mental self.....
Sandi, I am one of those who think they can do anything and just "know" that my way is the best way...LOL....you know the type, right? Those were your words but describe me exactly. We sound so much alike. My problem would be in the leaving him home alone, I still would not be able to do that. I guess each person has to do what they have to in order to survive this but I could not do that. How often do you have to have someone in to do a full bath? I have the sliding bath chair and could not do without it. I always thought you would have to have a walk in shower but quickly learned that it is getting them in the tub or shower that is the problem and I have a friend who has a multi million dollar home, showers and baths and her husband has this disase, well he will not get into the walk in shower so guess what, with all that she is having to sponge bath him as he walks around, a swat here and a swat there. How can anyone go on and on like that?
Jane, I have someone come in to do a full bath once a week...the rest of the time I change him so often that the messes are negligible. Plus I shave him every other day and give him sponge baths in between. I remember the days when I used to lock the bathroom door with my husband and I in there and I cleaned him with a squirt bottle and no rinse body wash...and all the time he is trying to swat at me and call me names...oh, those were the good old day...NOT!
I understand about not being able to leave, but what am I going to do....sit here and watch him sleep all day? I did pay sitters to come in when I first brought him home and they told me I was paying them to sit and watch TV....Now, if he was able to communicate and was awake and needed assistance, I would have someone come in. I am sure I check on him and change him more frequently than they would in a NH.
Jane, since you and I are so much alike I think you will do just fine.....hugs.....!
Sandi, Yes, he probably does get better care than in a Nursing Home, I agree with that. The problem I would worry about is the Social Service Department. When a person is incompetent it is against the law to leave them unattended. It would be my luck that just as sure as I did go out, I would have a wreck or something would happen and then my DH would be taken from me. I know that 99 out of 100 it would not happen but that is how my luck runs, it would happen to me.
The constant confinement is one of the worst parts of this disease processs. The process is so long in duration that to pay for help all the time would break up a multi millionaire. If this disease did not last so many years anyone could pay for in home help but not with this disease, you would be paying from now on.
I have done just fine so far. 7 years and counting. I hope I can care for him here all the way through. I shudder at the thought of him not being cleaned and not having the one on one that I give him. The not being able to communicate with the speech gone is one of the reasons that I protect him so much. It would be horrible to be trapped inside your own body not being able to make your needs known. At least I have an idea of what he likes and dislikes.
Sandi, your situation with the bath and squirt bottle made me feel like my problems at bath time are nothing to compare with that.