I really enjoy watching Jon Stewart's The Daily Show. Last night, there was a clip of Obama at a town hall meeting answering questions about the proposed healthcare reform bill. One person said they heard that once it passed, the government was going to send people to every Medicare recipient's home to ask about how they were planning to die. The question itself was demented. However, the asker had to be stupid to think the govt. could afford to send all those survey takers to our homes.

Good one!! I saw some out takes of his shows on one of the news shows...I should tivo it and watch it the next day.
Like my grammie always said: people never know just how stupid you are till you open your mouth...so be care of what you say.

MM -
Sorry to hear about your husband's decline in nutritional intake. As hospice probably told you, someone can live on very little food and drink for a long, long time.
Robin

mm- Keep hangin' in there. You are doing great. Aren't those hospice people wonderful? Oh how I wish I had it in me to do that. Just don't know if I could handle the sorrowful end of life with families. I admire them so much. Had them help me to the end with my mother in law. Could not thank them enough. These are true angels.
My prayer for Milton is that the end comes swiftly, peaceful and with as little suffering as possible.
Warm thoughts to both of you.

pop still won't eat but about 2 or 3 bites of food a day. He will drink Boost and he had been drinking 2 or 3 bottles of water a day. He got tired of the plain water and I've started buying the little packs of Kool-Aid to mix with the water and he is drinking it.
He put it in the advance directive that he didn't want a feeding tube but now he has changed his mind. He feels like it is such a hassle to have to eat. He says that his coffee is the only thing that has a taste. I try to cook things that he likes but it makes no difference if he has a full meal or half of a sandwich, he won't eat but a couple of bites.
He sees a new Neuro next week at the VA. What do you want to bet that I have him sitting with his mouth hanging open within 2 minutes after I start talking to him!!!
The VA is sending home health here 6 hours a day 2 days a week to help me. We are starting to get my house straightened up. It had really gotten bad.
I take his BP several times a day to make sure that it don't bottom out again. pop fused at me that we couldn't afford Boost because it cost so much but I told him that if it will keep him out of the hospital, we can afford it and he agreed.
A few minutes at the time here!
nanny

nanny,
Look into the store brands like Walgreens for the Boost type drinks, you can save a little money that way!
Good Luck with the visit with the new neuro!

Nanny,
My husband, Johnny, goes to the VA also. They provide diapers, chux, male guards, and Ensure for free. Please check into that. Our prescriptions have a co-pay, but not those things. Thanks to all who write. I'm following sporatically, but it's so good to know I'm not alone.


Judy

Judy --
What state are you in and who in the VA did you talk to to get those things -- the VA doctor, the medical social worker, somebody else? Did you ask for those things or did they offer? Thanks!

Judy -
is your husband on hospice?
Robin

We just received the meds, never was able to get the pullups or the chux or Ensure, we were told that each state has different guidelines and it depends on what they receive in order to give them out at the time we lived in FL.

We are in Texas, Dallas area. Johnny's pcp as well as the psychiatrist and the neurologist have ordered some of those things, all at the VA, since he has been diagnosed last Nov. Most of the things are been more available than has been communicated to me. I've found it out accidentally and then they've been very good about ordering them. He's getting B-12 shots sent to us also that a nurse friend has been administering. And no, hospice has not even been mentioned yet, though I 've thought about it a time or two. I'm one of the lucky ones, that though we do have hallucinations, scary ones to him, he's not violent. Mostly he's resistant to what I need him to do, change diapers, eat, etc. But he looks good, comparatively. Right now he's sitting at the kitchen table, just staring outside and talking some nonsense. We'll be OK till I try to get him to change and get in bed. He doesn't do anything, just sits and stares. Tried to get him to go outside and he was afraid. Just likes quiet. Company upsets him, especially the kids with the noise. We have no pets, except a fish which he named Crab a few weeks ago. So I don't do much, just read, no TV, no radio. The stimulation that I hear is good for them is bad for him, just agitates him. And the "No Ativan thing?" Works for him when he's agitated. Just a half mg though at a time.

Dear Judy --
I can really relate to that living in a vacuum thing. Same here -- sound, people, etc. un-nerve Jerome. He's legally blind so can't read or watch TV. If you are totally bored stiff, buy a pair of TV Ears (look online for best price). You plug unit into your TV or cable box, put on the headset, and only YOU hear the TV. Saves my sanity as the TV sound really bothers Jerome, and this way he does not hear it at all but I'm not restricted to solely reading for "entertainment." Sometimes life in this house feels like a sensory deprivation tank

All our married life Johnny has had "noise" on and I hated it. Turn it off!! So here I am with everything off and I'm not complaining. I really do like the quiet. I just hate that he can't enjoy our grandkids (13 of them) any more. He adored them and they thought he hung the moon. He played with the youngest to the oldest (0 to 19) and was the one they all wanted. Now he just looks past them when they try to hug him. He's just somewhere else.

Judy and Renata,
My husband too lives more in the realm of his hallucinations than with us. Today as he was trying to describe what he sees, I suddenly thought of having him draw. He has severe macular degeneration and can't see close up at all. Still he used the marking pen and make an effort to draw the animal, beast he calls it, that he sees pulling a wagon. It kept him busy for 30 minutes or more. Otherwise, he doesn't want to listen to his tapes -- he subscribed to the Recorded Books for the Blind for years and loved listening, but no more. Instead he can just sit and doze and look around and wait for me to tell him what to do, hoping it will be time for a meal. So we three women have to get out if we can (I chance it when he naps -- I take a walk), and use the ipod, the earphones, or whatever we can to keep ourselves alive.

My Mother has become obssessed with the weather channel- if she's up it has to be on- think if I hear storm stories one more time I'll be the one in a padded room. Sometimes she'll stare at it for long periods of time then she gets scared of tornados but insists on watching it. When she talks to relatives on the phone they get these wild stories of floods and 104 degress or snow in August from her.
-other "noise" she doesn't like, I don't think she can follow the story lines on other shows except for her British comedies on Sat night. Those she recounts in ways very different than the writers intend, actually her retelling is much funnier than the show.
I'll trade a day of weather channel for a day of anything else
Sharon