I have a two day conference to attend on Friday and Saturday, and I am utilizing the Hospice Hospital in order to have respite for me and my grandson. This will be my husband's first time alone all night away from home. I am taking his favorite things and his battery powered toothbrush that he holds most of the time, as well as a couple of other "toys" and his favorite book, in case he wants them to think he's reading (he's past that point). My worry is that when I pick him up on Sunday morning, that he will have lost more ground from being away from home and me.
This is also a test run, because I have a 5 day conference in California next month. He's been approved for that stay as well. I want to see if I'll feel okay leaving him there for that long.
I'll keep you all posted on how well he does and how well I do using this respite care service.
Mary thank goodness you have some respite available and know he will be in good hands. enjoy your conference and time away. i know you can use the sleep. :) he may lose some ground its to be expected hopefully he'll recoup at home again. enjoy and leave your worries at home! divvi
Mary, it may be that he will need several experiences before he feels comfortable there. I pray you are strong and do not read anything into his temperment the first few times. My husband would pout and be stand-offish..but they all get over it. quickly and more than likely will not remember being there.
Dear mary...I know it will be hard, but the time away will be good for you...you need it....good luck at the confeerence...let us know how he does....Rosalie
After I got home from work on Thursday evening, we ate dinner, then I got a change of clothes for my husband and his medicine, and Drew and I got him in the car and drove by TCBY and got him a chocolate malt, that he drank all the way over to the Hospice Hospital (20 minutes from our house). They were ready for us when we arrived, and showed us how to "buzz in" to the Hospice section and showed us to his room. I got him to sit in the chair while I talked to the nurse and showed her the typewritten sheet of what he can do, what he can't do, what time he is used to taking his medicine, that he needs his food cut up but can feed himself; that he can't understand what you say to him and will answer yes to everything, etc. We stayed about 15 minutes, and they got a chair with wheels that has a footrest, and a tray you can slip on (making it impossible for them to stand up while it is on) and we put him in that and they wheeled him down to the nurses station where the staff introduced themselves. When we said goodbye to him, it didn't even register with him. It was so hard to leave him!
Drew went on Friday at 10 a.m. and stayed until after my husband ate his lunch, then went back at 3 and stayed until he finished his supper, and said that other than he was having more jerks than usual he was doing okay. That he even got up and walked to the outer doors of the area (but not to the outside) and Drew then led him back to his room. The doors are locked so they can't go into the main area of the hospital. Saturday morning Drew said he was still doing well, but didn't acknowledge that he was even there.
Today when we went to pick him up, he was eating lunch and we waited until he finished, then I helped him dress and they brought a wheelchair so we could get him to the car, because his legs were too wobbly for him to walk. He WALKED in, but couldn't walk out.
The most unnerving thing was that the CNA shaved off his mustache this morning!!!! He's had it for 45 years!!!! I am upset, but not angry. It will grow back, but it was totally uncalled for. She shouldn't have touched it, much less tried to trim it. She messed up and had to take it off. When I go to California in three weeks, I'm putting a big sign on the door "DO NOT TOUCH HIS MUSTACHE!"
I really believe that there is a strong cord between us and our spouses. I had a very bad time that first night....withdrawal symptoms. They are used to their routines and homes. When we take away ourselves and their comfort zones, they lose some of the "holding their own" abilities, I believe. I have to believe that he would have gotten weaker even if I had been at home with him. He doesn't seem as alert, and he has slept most of the afternoon. Hopefully, he won't be awake most of the night.
I enjoyed my conference and learned from my continuing legal education courses, and saw friends I hadn't seen in two years. I'm glad I went, even with the emotional withdrawal I had to go through, especially the first 24 hours; and even with the loss of his mustache. I know I needed it, but not how badly until I got back home. I am really bad about watching his every move, trying to satisfy his every need, and make his life as pleasant for him as possible. I know that he was well cared for there (not as good as I would have, but still well cared for) and that I have to take these steps now for both of our sakes. IT IS SO HARD!!
I hope my sharing my experience will help some of you when your time comes to use Hospice Hospital care. Love you all,
Mary-my husband had a lovely beard most of our married life. While on a psych unit he shaved it off. Stupid me-I asked him why. His answer-I finally got a razor. Glad you got to your conference and you both made it. Good prep for the next time. No one can provide the same care you do-but we will lose them just the same. Welcome back.
"I have to take these steps now for both of our sakes."
Mary, it IS hard letting go, even a little, but it's a wise move and I'm glad you were able to do it. We all know the course of AD is one way, no matter how hard we try to fight it. It's good you are able to make yourself do something away, on your own. It will make things a little easier later.
Mary, So glad you enjoyed your conference. Sorry about the mustache. My husband has worn a mustache his entire adult life and if an aide at the nursing home would shave it off I just might have to go shave her head!
Take heart Mary ........ it was just your husband's mustache ..... my poor husband lost his whole head of hair !! - YES - I said his WHOLE HEAD OF HAIR :(
As some will remember from a previous posting ...... "My days as a direct, hands-on care giver, are all but over" ...... my husband was admitted to hospital and is still in hospital and has been since August 14th ..... anyway, I digress ...... last week I asked the Charge Nurse about getting a pass to take my husband out to get a haircut. She told me there is a lady who comes into the hospital (she would be there the following day) who washes, cuts, curls etc both mens and womens hair - men's haircuts are just $10.00. I said 'Great!' please put husband on list and I'd like her to trim it short as he'd got pretty shaggy. Anyway, to make a long story short - the next day I went up to the hospital to feed, shave, shower and entertain him and OMG !!!!! there he sat ....... HE HAD VIRTUALLY NO HAIR !! - she had given him a buzz cut!!! I about had a fit - initially I was a bit angry at such a dumb haircut for a 73 year old man who had the most beautiful white wavy hair then I just shook my head at the women's stupidity and decided it's probably the best 10 bucks I've spent in a long while as he won't need a hair cut for at least 6 more months !!!!!! ......... I'm still shaking my head ....... LoL !!!!!!
Since bringing my husband home, he has slept. In his recliner, except when we wake him up for meals; in bed Sunday night; Monday in the recliner, in bed that night; again this morning. He looks down, where before he looked me in the eyes. His hand shakes and he has trouble keeping the food on the fork, but keeps trying until he succeeds (he wants to feed himself, and it takes him an hour to do so - plus he falls asleep and I have to wake him up).
His decline had begun before I took him to Hospice Hospital, but in three days, he seems to have declined even more rapidly. Whether he will recover anything after being home for a few days, I don't know. It is SO HARD to see this decline. I tell myself not to feel guilty, and so far I'm convincing myself with the aid of my close friends.
I am keeping you all updated, so that should you use a Hospice Hospital, you will know what could occur upon coming home and what you can expect.
It is terribly hard, I know, Mary, but you shouldn't feel guilty (though I probably would as well)... Now is when you (I) have to start that distancing of yourself again. I think I've heard here more than once that as soon as someone got in the hospital (for whatever reason) they started going downhill quickly. THIS IS NOT A REASON TO NOT PUT THEM IN; the decline would happen anyway but I agree, maybe not quite so soon. I think that's probably why a lot of us stall so long. I do hope he'll rally round soon!
Since my husband's death I have lost several other friends to AZ. After watching their decline and the efforts of the spouse to keep them going, I have to wonder how much good we do in trying to hang on to them. In one case in particular, a dear friend whose husband was caring for her, as she declined and seemed to want less and less to be pushed to do anything and more and more to just be left in peace, to sleep, I couldn't help but feel that while his intentions were good and his heart was certainly in the right place, he just wasn't doing her any favors. It was such an effort for her to try to respond to him, and I frequently found myself thinking, please, just let her rest. I readily acknowledge it's a lot easier to hold this point of view when it's someone else's spouse.
Folly, about the time you were posting, I was writing this in an email to a dear friend.
I don’t understand why we feel badly when they get worse. We all talk about how we hate this long journey – how we long for its end. Yet, when our spice get worse we grieve for what they’ve lost – we find ourselves longing for the awful status of yesterday – which was indeed awful. I think we need lessons in letting go. Goodness knows the dementia diseases give us ample opportunity to say goodbye – I think we need to give ourselves permission to let go. We know our spice are in a battle they cannot win. I think we would not be wrong to celebrate (?? surely there is a better word -- probably "accept" is more of what I mean) each decline as a further step towards the peace we all want for them and they surely, inside, want for themselves.
Weejun, you have said it so well. Acceptance is so much a part of this whole journey. Accepting each small or large decline, accepting that they can only decline and not gain anything.
I think while we may have intellectual acceptance, the emotional letting go is so difficult because we know that whatever shape they're in, once they're gone, they're gone. I think having conflicting emotions is very normal.
To me there is not much difference between my DH who lays around all day and someone dying of any other incurable disease. We don't expect others to get up out of their deathbeds like we do people with dementia. I've known dying people who said they were “ready to go” and prayed for the Lord "to take them" and while they were very sad, their families were also very understanding. When my father was in the later stages of AD, we did not try to get him up. We simply kept him as comfortable as possible and let him get on with this difficult business of dying.
Weejun, I hear what you're saying (in the post "I don't understand . . .), I know you are right. I agree 100% in principle. BUT, NOT FOR ME, NOT YET. Of course my spouse is still very active and nowhere near the kind of decline that others on this thread have been talking about, he IS in a stage that I hope will last for a long time. Right now each bit of decline seems like a threat to a life that though not ideal is livable and that I would like to continue.
I have often thought that when things eventually progress as I know they will, I hope I will be wise and strong enough to welcome further decline and let go -- but I'm wondering if maybe the "not for me, not yet" will continue to apply. Maybe (judging from what I read here all the time) it will never seem like it's time?
Oh, JeanetteB, I think we are all saying, everyday by virtue of coming to this site: NOT FOR ME, NOT YET.
And, to further explain my thoughts you should know my DH does not experience joy, humor, sadness, frivolity, understanding, comprehension, anticipation, curiosity, unaided physical movement, the list could go on and on. His life now revolves around breathing, eating and eliminating.
Jeannette, that's exactly the right phrase. Not for me, not yet; not for HIM, not yet. I'm not ready to give up cooking dinner, sharing a glass of sherry, sitting reading the paper while he dozes.. not ready to give up the house, which is way too big for just me and my daughter.. not ready to give up having family gatherings here..
I feel the same way but as I read the comments above a question came to mind. Who are we really doing the things that we do for? Letting them go may be one of the kindest things that we can do for them - as difficult as it is for us to even accept that idea.
I went round and round in my head and emotions on whether to give him the flu shot this year or not. In the end, I chose to give it to him. With that choice did I add to his life expectancy in the stage that he is in - there is no quality of life and all I can offer him now is my love.
I am trusting that it won't matter that when it is his time, he will go. That was the best I answer I could come up with and it is enough but it is so sad.
Neurologist yesterday. I like him a lot. He asked my husband a few questions, (one amusing one - remember we are in RI, next to Massachusetts - was do you know anything about Ted Kennedy? And my husband struggled to answer and finally said, he SAILS a lot) and asked how I was doing. When I said my knee was hurting still he said I should consider having it done, putting husband in a facility while I was recuperating, to see how he did. That it was getting to be time.
I'm beginning to think he may be right; my husband moans and groans so much when he walks, and I know at least some of it is truly pain.. he WOULD be more comfortable being wheeled around,but we really can't manage much here in this house. The doctor asked what he liked to do and he said EAT. And so he asked, eat what, and my husband said "whatever this person here fixes." Awww. But he cannot identify who I am, by name or function, now, and this morning I asked him his name and he didn't know it.
Interesting: I asked the neuro about pain med, in particular the tramadol which both L. and I have been prescribed, and which does me a lot of good at night. He said be very careful, that it can increase confusion. So what pain med doesn't? And he said, basically none. Stick to the OTCs. Which do almost nothing.
Briegull, I hope that your husband is better. Have you scheduled your surgery yet? Keep us posted!
I am bringing this back to the top to let you know that after one week, the effects of my husband's three night stay at the Hospice Hospital have returned to normal levels. Of course the mustache is still gone. It is growing back, even though slowly. He slept for four straight days except when I woke him for meals; and stayed awake a lot on Saturday and by Sunday, was back to his normal routine of dozing and awake - off and on all day. He's still weaker than when he went in, but that was begining when he went in, and would have occurred had he been home.
I feel more comfortable putting him back there next week while I'm at my conference. However, Drew will be doing the shaving!!!!! <grin>
I'm so glad, Mary, I had been worrying about him and afraid to ask.
I have an appointment to see the surgeon in November and then will have to wait to get to the top of the list for surgery - but after that I can postpone it as long as I want. I don't see how I can possibly do it as long as L. is at home.
It would be heard to do the surgery with your husband at home. I am so thankful I had both of my knees replaced (one at a time - not at the same time), but that was when my husband was able to take care of me afterwards. The knees were pretty painful for about six weeks. I took a lot of pain medication and had ice on them most of the time. Also, I went to therapy three times a week for an hour at a time for three months after the surgery. It's a tough decision to make. I hope you are able to do it, but be sure (I know you will) to find out from the surgeon exactly what to expect and how much help you will need.
My husband had his knee replaced. It was an interesting experience. The hospital had a class on it shortly before he had the actual surgery. He was about the healthiest looking person in the class. He came through fine and was able to walk fairly quickly. He went to a rehab facility for a week and did lots of walking there. I dropped something off for him one morning and walked with him to his therapy. As I left, I reminded him that there were 13 stairs to the cellar where the laurndry was waiting for him.
He actually did very well, did not need the therapist to come to the house and was pronounced fit for driving 2 1/2 weeks after the surgery. I think he did as well as he did because he kept doing weights and exercising in spite of the pain (he always had an extremely high tolerance for pain) and was religious about doing what he was told to get his knee back in working shape. The last reason he did so well is that we got a 6 month old kitten 3 days after he got home (replacing the cat we lost just before his surgery) and Bismarck liked to hide so he was constantly going to check on the new kitten to make sure Bismarck was okay. Bismarck's hiding was one of the things that gave him a reason to get up and move. In less than 2 months, he was very carefully playing golf again so he was very happy with the results.
After seeing what my husband went through, I paid attention to what others were doing with the same operation. The ones that went to the rehab facility always seemed to do better, recover faster and do more. The lesson I got out of that was that the rehab facilities make a big difference in the recovery.
I had a neighbor who had to go to the rehab hospital because there was no one at home who could help her after surgery. As a result they got her on her feet, taught her a bunch of stuff that she would need to know to be independent at home once they were ready to let her go home, started her physical therapy and she got to have hours of professional help instead of maybe one hour and go home and maybe do it wrong there, etc. Recovered extremely rapidly.
That's one thing that worries me: I am terrible about doing exercises, partly because I hurt so much afterwards. I asked the PT guy who showed me what to do NOW how long it should hurt after I exercise and ice it, and he said maybe 45 minutes. But three days later I was still hurting. I can walk, and used to walk a couple of miles several times a week, but the other things just hurt so.. and so I don't know what will happen if I have the surgery.