Never any good news is there? I don't even know what to say...

You just have days until you go to VEGAS :) ...enjoy your brief respite for all its worth...you deserve it...you need it and he would want you to go too.

VIVA LAS VEGAS!!!!!!!!!!!!!!!!!

Don't you hate it when doctors say something like that? As if we don't experience enough guilt.
Do try and enjoy your little bit of freedom.
It will be wonderful to be with people who truly understand.

I didn't take offense to what she said, I think she meant it a way that was helpful, you know like I should just be ready, emotionally.

Deborah, I just don't understand why Rollie isn't in Hospice care.
Our Dr. called hospice signed all the necessary papers to get
Ron in.
Good Grief.. if his weight loss and other huge decline isn't enough..what is.
Just ticks me.. that the help is there and you are not getting it.

I am so with Judy on this one. It is an absolute disgrace that he is not on Hospice. That much weight loss in such a short time is failure to thrive. Mumbling is not speaking.

I kind of took offense with the doctors comment as well but you know her best and if it didn't offend you it shouldn't offend me. We think about our loved ones every minute of the day before we think about ourselves. If anyone questions our devotion to our loved one my claws come out. Doesn't the doctor think those changes in his weight and speech warrant hospice care?

Just for once, I am going to think of what I need for a change. I need this trip; you need this trip; Sharon and Carolyn need this trip. Probably everyone in this support group could use a little time away. I am going to savor every minute of it.

She is 100% on my side, the problem is that he still walks and it is very clear on the documented guidelines that the VA won't admit dementia patients who can walk. She showed it to me. She is as pissed as we are, the thing is she just got her ass chewed earlier this year for admitting a patient who didn't meet guidelines. Her hands are tied.

The people I am pissed at are my local Hospice- they said they would take him as a charity case and then turned right around called the VA for payment! Of course the VA said no. I told them they would right up front! They are the ones who I feel screwed me. The VA was always upfront about everything, the local Hospice got my hopes up and then pulled the rug from under me. That's how I feel. I also, feel like, F them, I am not going to contact my local Hospice again. Also, not a single email, call, etc from any of them apologizing or checking on me or anything. They could have at least apologized and maybe call me once in awhile to see how he has progressed. F them.

I read your posts and want to cry. Life can be so difficult. For those questioning hospice care, we have to remember they get paid by Medicare and have to meet specific requirements, some of which have changed in 2011. I'm in no way condoning the fact that as a country we don't take of people. I'm guessing with the financial problem in the US we will see more rules and cuts that will decrease the care and help we will get.

If it helps to understand, below is a link to Hospice Foundation and a very good article in which are listed the requirement for qualification.
http://www.americanhospice.org/articles-mainmenu-8/about-hospice-mainmenu-7/17-alzheimers-disease-and-other-brain-diseases-and-hospice-care

Deb is right, not being able to walk is a requirement. When you see the requirements and understand that the person has to be proven and documented by specific medical issues to be within 6 months of death, you can see what the issues with Alz disease could be.

If you go to the Fisher Foundation for Alz Research and their description of the stages, you quickly see like I did that I will probably never get any help from hospice. If the medical records don't show the required conditions, then Medicare won't pay the hospice organization. Too many times it is all about money. No money, no help.

http://www.alzinfo.org/clinical-stages-of-alzheimers

My father qualified for hospice because he was in the nursing home, could no longer swallow, was having seizures, several strokes, could not walk, could not talk, just laid there. He died two weeks after hospice started caring for him. So you sit around waiting for that day to get help. It is so frustrating and sad. I'd be F'ing them too Deb.

Enjoy your trip!!! Have some fun. We do what we need to.

I am also VERY tired of the Hospice process, and the lack of care and kindness UNLESS you are a current Medicare-paying client.

But here's a question" What does walking mean?

The most useful thing I learned in graduate school was in a Social Welfare Policy class..."the person who gets to define the situation gets to control the situation" so, if it takes two people to walk a person (my husband, currently) is that walking, is that walking according to whose definition of walking......

if a person stand on their feet and falls numerous times a day is that walking?

how many steps standing up and going forward does Hospice need to define in THEIR definition...' walking'.....?

and why are some people in hospice when they are 'walking' and others are not?

Does he have any other serious conditions? Daddy couldn't be admitted into Hospice because of the alzheimers, but he could be admitted for congestive heart failure. Hospice worked it so that he received care because of that.

And yes, he will probably decline faster after you have been gone. They don't take well to change. I look back and I can't help but feel guilty, but it was a relief when daddy was finally in the hospital bed and could no longer get into things. And once he was no longer mobile, he declined even more rapidly. At that point you will definitely need someone with you at all times. It took two of us to roll him over and change him, change his sheets, and reposition him. It was easier on my mind, but harder on my back!

I know you don't want him to go, as I didn't with my daddy, but I will pray that things happen fairly rapidly for you from here on out. I always prayed daddy would go peacefully and rather quickly. I knew he would not want to linger for a long time in this sort of state.

I'm sure the doctor was just trying to prepare you, not trying to make you feel guilty. And you shouldn't feel guilty. You have done an excellent job and need time to find yourself again. You need to be able to relax for a while. When you come back you will be a much better you and will be able to take care of him even better then you are now. Go! Have fun!!

Thanks, Gina, Right now the tought is running through my mind, what of he dies while I am in Las Vegas. I am telling myself that it could ahppen anytime, anywhere and I may not always be there.

I knew you would be thinking that Deborah and you are so right, it can happen anytime and no guarantee that you will be there when it does.
there were very few times when I wasn't with him those last 5 wks and when he did die, it was about 10 min after I lelft the room to go talk to the nurse. So you never know. what I do know is that you are and have been there for him during this whole time except for a few days when you need to rejuvenate yourself. You will be much better able to cope with him when you return from your badly needed trip. I agree, I think the Dr. was only trying to prepare you and we all know that change seems to make the deterioration quicker. thinking about it, I have known several people who were on hospice and they were all bed-ridden at the time. Chances are he will get to that point before he passes. I'm so sorry any of us have to go through this but none of us really have a choice. We do what we have to do.
Hugs, Carolyn

Deborah, have you considered that maybe he might want to pass when your gone? As to allow you to have an enjoyable time away with dear friends not having to worry about doing for him, that it will allow him to let go so you dont have to deal with it in that moment?

I know that sounds absurd because how could He (they) ever think outside the box like that. But it does happen...and I know of people that hold on until the very last person in the family has been able to say goodbye. It works both ways, and Ive seen it happen both ways. As a nurse I saw the last family member come in and 20-30 mins later the patient passes. Ive also see patients who had family with them 24/7 and as soon as they walked out of the room to eat or go to the bathroom the patients takes their last breath.

I think in our own subconscious minds we know how we will handle it and on taking our last breaths we can still Understand how that will affect our loved ones. I think you will be suprised or shocked either way. Just go have a good time, and try to regroup and relax. Enjoy yourself you deserve it, and you both know that. Hubby is going to think of you....believe me, in his world or ours....he already knows how it will be.

Hope none of this offends anyone especially you. Not meant that way at all. As far as your doc stated...I think it was to prepare you because things will be different when you return. He is used to your routine...and expects the same loving care but he is just at a point where Im sure he will change daily. Keep your chin up....Love and HUGS and prayers

Janel

I wish I could delete my previous post.
I re read it and feel I probably didnt put it as well as How I was thinking it. I think my MS has made my writen words not express my thoughts because I struggle to find appropriate words and it doesnt come out right.

It sounds so uncaring... and I didnt mean it that way at all.
It sounds cruel and well just ugly I think....for that I apologize.

I just meant (let me see if this helps)
I think even in his world, he is still capable of thoughts and feelings even if he cant express or show them. I think that maybe he might (as some people do) feel like while you are away, not worrying about him or having to care for him but enjoying yourself....might be his oportunity to let go. I believe he knows how difficult that would be for you as his loving wife, to be in the same room at the time he takes his last breath. Does that help explain my previous post? Or does it sound just as bad??? I guess I should just leave it alone.

NO matter what happens or doesnt while you are away Deborah, you need to enjoy yourself for yourself and for him...I KNOW he would want that for you.

Closing here before I make it sound any worse.
Hugs
Janel

Janel, I did not take offense in anyway, don't worry. I think that there is a spiritual level that Rollie is entering and I understand what you are saying. Rollie was a VERY protective husband, he always made sure I was taken care of, even if he did with out.

I do wonder about his family though and if he is waiting to see them. When he was first admitted to Hospice (before he was kicked out) I sent them all a note, not one has asked to see him and not one has inquired about him since then. I really don't want them to come, but what if he is waiting for them?

Yeh, Deborah, I ask myself the same question.
What if Ken passes? How will I feel if I am not there. I don't know. I think Rollie is still a little closer than Ken, but Ken is not far behind.