DON IS STILL IN THE HOSPITAL AND THEY ARE STRONGLY RECOMMENDING PALATIVE CARE FROM HOSPICE. THEY JUST DON'T GET IT THAT HE NEEDS PT AND OT WHICH HOSPICE WILL NOT DO. MY OPTIONS AS OF NOW IS SEND HIM TO REHAB AND HE IS SO FROZEN THEY WILL NOT BE ABLE TO DO MUCH FOR HIM. HE NOW HAS SWALLOWING ISSUES AND IS IN CONGESTIVE HEART FAILURE OR IF I ASK SOMEONE ELSE HE HAS PULMINARY EDEMA. I AM AT MY WITS END. ONE WOMAN TODAY, THINK SHE IS ASSOCIATED WITH HOSPICE RECOMMENDED I TAKE HIM HOME. AGAIN I SAID HE NEEDS PT AND OT AND SHE SAID MAYBE THEY CAN TAKE HIM FOR IT. I STRONGLY DOUBT THAT. WAITING FOR THE PALITIVE DTR TO SEE HIM. I NEED HELP DESPERATELY AND DON'T KNOW WHO TO CALL NEXT. I AM SO COMPLETELY FRUSTRATED. BETWEEN HIS HEART, HIS LUNGS AND THE PSP HE IS NOT IN A GOOD PLACE. I AM OUT OF IT TODAY EXCEPT FOR CALLING EVERYONE I CAN THINK OF.
THEY JUST DON'T GET IT AT THE HOSPITAL - PSP Association
THEY JUST DON'T GET IT AT THE HOSPITAL
Oh, Audrey, I am so sorry you and Don are going through this ordeal. This crisis seems to have come on very suddenly. I wonder if palliative care from hospice might not help stabilize him so perhaps later he can be a candidate for PT? In any case, if he is too frozen for rehab right now, why go there?
I wish you strength and peace with whatever you do, and whatever you decide will be the right decision. No doubt. Love and peace, EC
All hospice will do is come to the house, a Dtr and a nurse and I don't need them. I need an aid to lift him out of bed in the morning for an hour and they can come back at night to put him back in bed. Called senior services and they will charge me $15 an hour. If the hospital does not arrange getting him home, senior services will. They do not give him his medicine at the right times either in the hospital or a rehab facility. Oh yes, the hospital is concerned about me since my speech sounded slurred to them and I called 6 times. I don't drink and I just want to make the right decision for him. With being home he will get his sinemet at the right time, every 4 hours along with his other meds. I just wish my head would not hurting and get myself together more. Today was not a good day for me.
You sound like you need a mediator or someone who can talk to the drs or rehab for you. Call Sr. Services to see if there is someone who could speak for you. You are very stressed right now and you need help trying to get these people to understand or at least hear what you have to say about your husbands needs, which in turn will meet some of your needs. Maybe you can get an appt. with his Dr. just to talk about stuff....Why doesn't palliative care work with ot and pt...its about quality of life!!!!Though I do agree with Audrey that maybe Don needs less stressful care right now.
Anyway, I am sending you a big hug and a prayer that things will work out but especially you will find strength and peace.
AVB
Spoke to senior services, they offered to take him home from the hospital, did not say how much if the hospital can't. Can hire aids for $15 an hour but the V said they would send them. Haven't a clue but do know hospice which is paliative services i think will not do ot or pt. only send a Dtr here and a nurse, thats about it. Trying to make a decision on what to do. Need more info about why I can't have the VA send aids along witn the other company that does pt and ot. Conflict of interest. I just don't know. Have hospice come here now and when he is stronger will I b able to get pt and ot from the other place. Get conflicting stories and haven't heard from the VA which is another issue.
Well I hope you are resting. It's late wherever you are I am sure;
So get some sleep. Don is fine for now.
AVB
The palliative care program we have through the VA is providing OT and PT and speech therapy at the house.
He will be on palliative care supposedly but they said no pt or ot
Try and calm and strong at this terrible time for you both.
Sending very large hug!
Lots of love
Heady
Audrey everything seems to be moving to fast sending you a big hug also, try and get some rest. Yvonne xxxxxx
Sending prayers to help you through this difficult time.
So sorry, Audrey.
It seems to me that you need to arrange for two things:
1. Contact Arthur Rank Hospice for palliative care
2. Arrange urgently an assessment for NHS Continuing Health Care
It seems to me that Don is easily qualifying for NHS Continuing Health Care and that is free of charge.
I also seems that you need a hospital bed at home which it makes it then much easier to assist Don. Also that comes free of charge. And Arthur Rank Hospice will arrange for all that and they will also send a OT to establish what other requirements you have
As far as stiffness of muscles is concerned, there is only ONE option: massage. But that will not be provided by the NHS, sadly the only ting they do is prescribing pain killers, which make the situation only worse.
Wish you strength, but don't give up and fight for your rights.
Sorry, I forgot to mention that contacting the PSPA might also be an idea. They might be able to assist you.
THEY HAVE SUGGESTED PALLIATIVE CARE AT HOME BUT WILL ONLY SEND A DTR AND A NURSE. THEY WON'T DO PT OR OT. WAITING TO HEAR FROM SOMEONE AT THE HOSPITAL AS TO WHEN TODAY HE WILL BE RELEASED. HAVE A HOSPITAL BED AT HOME, WHEEL CHAIR. NEED POTTY CHAIR, ETC. THANK YOU FOR YOUR SUGGESTIONS. LIVE IN THE US
Palliative care at home is the correct option. CHC is needed in order to get the necessary funding. Arthur Rank Hospice provides the palliative care for the NHS. If you contact them, they will expedite the arrangements. You should get a visit from the head nurse to establish your needs. The hospital is a waste of time. They arrange at best some support from the so called ReAblement Team from your local NHS social services. But that is for only two weeks max. So that does not help. You should get under the CHC facility for which you need to apply at your local NHS social services the help you need, fully funded. If you have not yet done this in the past, it is urgent you do this now.
As far as Arthur Rank Hospice is concerned, they arrange for an OT to visit you. And they are very prompt. I take it that you have registered Don with Arthur Rank Hospice for palliative care? If not, you need to do this asap.
As far as PT is concerned, the NHS does not want to know. And you have to fund this yourself, which is pretty expensive. A PT is actually possibly not the right approach. You need somebody that can give Don proper massage to activate his muscles. When they tighten up and because Don is no longer mobile, they need treatment once a week for at least two hours, on-going. Costs a lot of money though.
He will be getting palliative care when he leaves which is tomorrow. They said no pt or ot, just a Dtr and a nurse. Trying to also get home health care which will do that for him for 6 weeks and also have the va involved hopefully for an aid.
Auddonz . Where do you live , We live in S Wakes . I realise social services re different area to area .
When John went into hospital do a knee op . ( I understand Don is more advance that John was at that time but when I went in one evening . the male nurse called me Wonder Woman " !
asked me how on earth I managed him . another came over to me and said I take my hat off to you . I knew what they meant of course . as kind as the all were its was harder for them .
I had a dreadful time in getting them to release him . that is the PTs Ots etc . They wanted to keep him in . Send him for rehab . now I know if they had they probably would have got the ball rolling with social services quicker and started CHC road but his skin was in such a dreadful state I couldn't wait to care for him myself .
they eventually released him. . it took me three weeks to get his skin back to how it was before he went in .
I contacted SsS for OTs and told them to give me the tool and I would cope .
They eventually installed ceiling hoiSts and wheelie commodes . 8 am able to use them myself . Took a while to learn but I got there . he wouldn't still be home with me with these ceiling houses . . I do have cares in now as well . good luck and I do hope and pray Don will at least improve a little Hugs xx
I do hope you get the help you both so rightly deserve. Again why do you always have to fight for any help when what you need is a big helping hand. Wishing you the very best of luck that something gets sorted very soon. Xx
Rehab Facility - Is this the right decision?
confused 
Full on, crazy week!
