PSP Association
5,165 members7,170 posts

Hi Everyone,

I cannot believe the crap we've been dealt and where it has got us. In February, we were promised a room in a care facility for

my husband. The day before the pre-admission meeting they called and said they coould not take all, ever. He was more "work" than their staff were able to handle. Then we were told the continuing care facility at the hospital would take him, but they have no room right now. To get him on a list for there, we would have to accept care where we could within a 60km radius of our town. We accepted, and they found a place 35km away. They would provide a Doctor from that community while he is there. He was there 3 weeks when I got word he would be able to move here to our facility in 2 weeks. We were quite excited, I brought some of his personal items home with me Sunday, after all we were moving him on Wednesday. Monday morning I received a call saying we couldn't move him. Wow! I was just numb, couldn't believe it happened again.

Meanwhile, in the 5 weeks Bob has been in care, he has lost 11kg, 15lbs! that is way too much, it took a year to get his weight up to 55kg from 43kg. The caregivers won't act on anything I say, they don't tell their superiors, the doctor has no clue about PSP, or the meds. My poor husband has severe stomach pain, and cannot take in food orally or through the peg tube without more pain. I've asked for an x-ray to see if the tube is displaced, or if there is a fecal impaction, which has happened before. They just don't seem to care. I try to do the right thing by placing him in care, and they undo everything I've done. We are almost back to where he was a year ago when the feeding tube was placed, I am so angry, I can't change the disease, but we should be able to keep the poor guy comfortable and at a healthy weight. These healthcare people talk to me like I don't have a clue, who the hell do they think has been doing the caregiving up to this point? We've talked to people within the facility, people above them, and pretty well anyone who may be able to help us out. Hopefully someone will be able to help us, soon, because he cannot afford to loose anymore weight.

Trying to cope with the disease is difficult enough, he doesn't need this too.


12 Replies

Dear Joan,

What is possible - next ??? STAY STRONG>>

Is there anyone you can assist with prompting the X-ray along for your husband?

Maybe worth consideration?

I've some weird success when I acted as a "Semi-advocate" for my father-in-law many years ago (B4 my husband with PSP) when his weight dropped to that of a small child like your husband (Don had early onset Parkinson's).

Basically I made after hours calls to politicians who in turn door knocked on members of the hierarchy within the housing and hospital system. There was loads of passing the buck that went on and it was all a crazy amount to handle at the time (I was fortunate to work for a company who gave me plenty of lee-way or I don't think I could not have done it). Anyway, probably my sheer luck or they were tired of my tenacity something came through, A bed came through at a hospital for emergency medical reasons that basically implied that family didn't exist to support him at all (which was distressing to hear). But in hindsight - it enabled him to become a person again and then move into a nursing home that was suitable.

N.B. Why I say semi advocate because I was purely winging it and when I phoned people - I asked them to put themselves in Don's place and asked them what helped they should deserve.... It was all mind games, and I had to really distance myself from being emotional or human when I made the calls.... (and not let on he was a relative..)

Best of luck ...

Regards, Alana

1 like

I am SO sorry. You just have to keep fighting, which is not easy but is the only way. In the end you will find SOMEBODY who will listen. We are not very good at joined up thinking, people do not communicate with each other. My thoughts are with you and I send you my very best wishes x


dear Joan

This is terrible for all of you, where do you live?

Dorothy thompson


Hi Laroux

I see you live in Canada, I only asked before because here in the UK we have something called PALS or Patient Liaison Service. I have no direct knowledge of it but as I understand it they would be the first people to contact in disputes about healthcare.

Have you anything like this in Canada? Or what about social workers, could they not help?

It is all madness and so very upsetting, what do they think you are supposed to do, and why on earth a care facility say your husband would be too much "work" is beyond me, they are supposed to be the professionals after all. How do they all think you cope, with smoking mirrors!!

Incidentally I have been researching respite care for my husband for just one week. I have seen a couple of homes with nursing but both have said that they never know if a room will be a available until the week before it is needed. I can understand it up to a point, after all even hospitals struggle to have beds available when they are needed, but it makes planning ahead difficult for me. Our social services said that they have a system whereby they maintain a bed in a care home and book it like a hotel room on demand. This did not seem very satisfactory to me either so I am probably going to use the carers we have now as they offer a Live-in service.

I hope you get it all resolved, take care

Dorothy T

1 like

Hi Dorothy, the day care nurse at our local hospice said I could have respite so I could see my son's new house. He owns a restaurant so I found all the dates he'd be available as requested by the hospice, and awaited news of a bed for my husband. Instead I had a phone call to say they " Couldn't meet his needs". It's a hospice for goodness sake! I got off the phone and cried, I was so angry. Within 5 minutes I had googled respite care in my son's town and found a home near him. I looked at their report, which was good, and booked a room for 3 weeks later. I was prepared to pay the £850. I phoned continuing care to cancel the night nurse for that week. She implied that this wasn't the done thing to do and I told her about the hospice. She said she knew about that as the hospice had phoned her to get a night nurse just for Colin but it had been refused. She asked me where he was going and I gave details. A week later she phoned to say she had been In touch with the home and had agreed to pay all the fees. What a crazy system we have. We took Colin out of the home at 10 am and returned him at 5pm so he was able to see the new house and our grandson. Unfortunately he didn't like being there as they didn't get to him in time so he was incontinent and he cried every evening when I took him back but it was the only way to do it. We probably won't do it again.

Nanna B


Nanna B, you are a brave person to handle that trip and lodging for Colin. Stay strong!



I don't think brave Jimbo; I think a better word is "mad".


Bonjour Joan! What a to-do! Sometimes I just can't believe the mental agony one can go through at the hands of professionals whose job (daren't use the word vocation) it is to look after patients who's carers can no longer cope. And in Canada of all places that I thought was high on the humanities list.

I can feel your frustration mounting as I read thru' your posting. Incredible. It's obvious the people whom you spoke to don't know the very first thing about the disease ,nor how to manage it.

PSP isn't contagious after all.

I personally think a PSP patient will give a lot less trouble to a nursing staff than patients with other disorders. Even with a PEG. I'd be tempted to ask how many AIDS patients they turn away.

Whatever, Joan, just keep plugging at it looking for that one Doctor or medic that will take the trouble to listen to you. Sharon is correct...sometimes you have to be your knowledge of PSP stand up to them,

keep asking 'why?' to everything you are told. That little word puts you in charge...keep asking it...soon they'll run out of reasons.

And lastly your Hubby's stomach pains are not normal. It should be dealt with quickly.

We know there's no cure yet for PSP so all we can do is at least to make sure he's comfortable.

With you all in mind, best brian


Well, for the second time in a week, my long response vanished. I can't retype it, but I will say that Assisted Living facilities, in Virginia, USA, cannot take PEG tubes because they require "skilled care" - except, of course, when the family is expected to do the job with an hour's training. Look into Hospice!


WOW! It just came back! Read on.


Dear Joan,

When I needed to go to my son because he had that flesh-eating virus, everyone said that Assisted Living places would take him and there are many in our area (Virginia, US). They were eager to sign him up until they found out he had a JPEG tube. They didn't say they didn't have the staff, they told me that state regulations would not allow it. Sure enough, that was true. I did find a nursing home that could take him for 3 days. Unfortunately, they would not listen to me regarding the care of his feeding tube and before he had been there 24 hrs. they had to transport him to the hospital to have the tube unclogged.

We now have hospice which provides respite care - either in a hospital, nursing home or the in-patient hospice unit. Whichever is available and best suited to his needs. We haven't needed it again, but I can see how frustrating it is. When you are in the hospital, a JPEG requires "skilled care." And yet, we family members are expected to take care of them with an hour or so of training. Go figure!

I hope your issues have been resolved by now, but if not, don't give up being a strong advocate.



Caroline, Glad you are now on Hospice. We have found them to be very helpful with equipment, nursing visits, and even some medications, all free from Medicare. Never thought that a feeding tube would keep a patient out of a care facility. Interesting.



hi i a gree iwht all of the above

lol Jill our locla hospice bas been grea toffeirng me a weeklyh visit for relaxation masssage and crafts

Lol jill



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