Why is no one asking any questions? Is eve... - PSP Association
Why is no one asking any questions? Is everybody stable?
Perhaps they are all having as much trouble getting to the site as I am. I couldn't get anything for ages and was then advised to download another internet provider. I tried several and they all failed to load but I eventually managed to install Google Chrome. This worked for 2 days but an hour ago I tried to log on and Google Gold hadn't loaded after 45 minutes. I thought I'd try to get here the old way and surprise surprise I've arrived. It's all very frustrating. Last Thursday I had 2 hours notice to take my husband to the Hospice to give me 4 nights respite. Two days ago I was told to pick him up tomorrow. I said I was supposed to collect him today (Monday) and that we had an appointment with our solicitor this afternoon. The response was. "Change it, he is staying until Tuesday. There are lots of us and we are finding it difficult, we don't know how you manage on your own".
We do manage somehow though don't we? It's been great sleeping all night, just thinking about me but I hope I don't find it even harder when he comes home tomorrow. I've missed him dreadfully and am constantly talking to him as I rarely got a response anyway, I sometimes forget he isn't there but it is so good starting a chore/job, TV program, shower etc, without having to stop and run to him several times. I've been to see him every day as the hospice is in our village, and have a little cry when I leave, but he is in a lovely room with doors opening onto the garden. One drawback, I've had so many meals out with friends, I think I've put on loads of weight.
Very best wishes to you.
Nanna B
Oh how I agree with having trouble with this new site. Everything used to be so easy. Now I find it hard to log in and to find what I'm looking for. Thought it was just me.
Well, you do what you have to do. I had my last radiation treatment today (following surgery for endometrial cancer) and thankfully I won't have to drive 150 miles again for that. Now I can just concentrate on care for my husband and paying bills - which never seem to end.
You seem to have kept a great sense of humor. I know that is really necessary to keep going. I do hope you have enjoyed your time off. But just like a vacation, it's hard to "go back to work." I envy you having hospice. We haven't been able to convince them that it's time. The US is very different from the UK.
Thanks for your great response!
HI CAROLINE
I HOPE U R CLEAR OF THE CANCE RNOW
THE US IS OF COURSE V DIFFERENT FROM THE UK
BUT IS THER ENOTHIGN EQUIVALEN T TO A HOSPICE FRO YOUR HUSBAND?
LOL jiLL
There is a great hospice here locally, but it is a Medicare benefit with 3 benefit periods. 90 days, 90 days, and unlimited. At the first assessment they were going to admit him and then reassess after 90 days. If he were not renewed, then there were just the 2 periods left. I think they are afraid of taking him too soon and having him last for years while they bear all the expense. I can appreciate that but I have a quote from a hospice doctor in New England, US that goes "a PSP patient can have a prognosis of six months left to live and will always out live his prognosis but always be appropriate for hospice care (meaning his prognosis will always be six months or less). It's very hard for us in the US to understand. I can't hope to get you to see what it's like!
I had the same thing happen to me when my husband went into hospital for a knee arthroscopy . I had a terrible job to persuade them to release him . They called me super woman .
Although its very difficult , I knew he was much better at home with me I knew how to handle him and they didn't . Even down to the sloppy floor in the hospital it was squeaky clean but he could get a grip and was even more nervous of falling . I keep his skin in first lass condition and although they were doing their very best it'd wasn't good enough for me .
Don't know how long I can keep up with it but what else would I be doing . I don't want to put weight on Lol lol only making light of it Nanna B .
I know what you mean about being better off at home. The nurses were very frustrated that he didn't ring for them when he wanted to go to the toilet. When he got home he had a pair of incontinence pants on and I found lots of pairs of wet pants in a carrier bag. He rarely has "accidents" at home. He said that was why he stopped ringing the bell because the nurses didn't come quickly enough and he wet himself. He said he never wet at all once he stopped ringing the bell. In the hospice most of the others were very poorly so I don't blame the nurses but I can see how upsetting it must have been for Colin to take away the only thing he really has control of.
Best wishes
Nanna B
Finally I can post and read postings again. Whatever they changed must be fixed because I waited and didn't have to load another browser, Thank God! Good to see you are all kicking, but not too high. We are fine, taking a day at a time, not worrying about what's ahead.
Jimbo
Hi Everyone,
How pleased I am to see people back on line. I've felt quite lonely whilst all the changes have been taking place with this site. It's also been quite a quiet time at home, apart from my husband becoming more and more immobile. He had an assessment for continuing health care a few weeks ago, we are still waiting to hear the outcome. In the meantime he is due to have a week in a local nursing home to give me a break. At the moment I'm feeling pretty tired and in need of a recharge. Speak to you all again soon. Peter3
Hi, Peter, thanks for being the Gate-Keeper and watching over all of us
I, too, had several days of frustration with site converting to Google Chrome only to endure more glitches. Finally seems to be working well.
Peter, of all people, you are the most advised of all the ups and downs, mainly downs trying to adapt to the C-PAP machine over the past month which has felt more like a year. I have not used it more than I've used it due to it not fitting right, leaking etc. I finally decided to let it go until my compliance check the 25th since I couldn't get the oxygen company to respond to me and was just getting myself more stressed out. I know I need this machine as I've been feeling more of the very unpleasant effects during sleep or upon awakening.
However, I FINALLY got a call from a woman named Jessica from a different office who was checking in on me. Explained the scenario as well as telling her I believe I received poor service for as severe as my apnea is. She didn't disagree, which was refreshing.
So on the 25th, I'm going to see her at a different office than the one I'd been working with and she assured me she would do whatever needed to be done to make this work for me, including the possibility of order of child's mask since my face has small features.
The only other thing that is concerning me is my cognitive abilities. They're sliding back to where they were ago a year ago when he was trying to diagnose me...memory lapses, unable to find the right word or name for the situation, nonsensical words coming out verbally that don't make sense to me, waking in the morning unsure if I'm waking in the bed of my childhood home, my former home, or a former home before that. He put me on 2 different meds over the course of the year that cleared 90 percent of that up. It's unsettling. I don't know if this is the natural progression of PSP or just a temporary blip. I see him on the 29th so I can ask him them.
Thanks again for keeping a watch on us all.
Fondly,
Judy
