PSP Association
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Need to vent

Need to vent

My husband has had PSP for probably around 5 years now. I am 60 and he is 74. He recently had a Foley catheter put in as his bladder wouldn't empty completely. He can no longer walk, he can't talk, I have to bathe him, feed him, even turn the pages on his newspaper for him. He has no muscle control in his body. He is like a rag doll. However, I am able to manage to move him about with his hoyer and also his wheelchair. He is not able to help me with anything. But he does like to get out of the house at least once every two weeks and go to the grocery store. So I do that for him.

This is where I get ticked...his urologist said they would have home health come and change his catheter once a they called and said they would make an appointment to come to my house and do it. Well, the day we were going to go to the store, they called and said they were going to come up that day?????WHAT???? Is that called calling in advance to make an appointment??

Told them we were just getting ready to go into town....that they had not called in advance...they called later and told me that I would have to have him as an out- patient and bring him to them since he was able to still get out of the house as they did not consider him to be housebound as he was still able to leave the house to go to the doctors appointments and grocery shopping!!!!!. I told her that even if I was taking care of a dead person they would not be house bound as I had all the equipment to move them around!!!!

I probably wouldn't have minded as much if that was the arrangement that had been made in the first place.

I didn't remember her saying anything when I said that....I finally just said " never mind, I just get a little overwhelmed at times"

I do work 3 days a week and my 81 year old mother will come down here and keep an eye on him.

There have been a couple of times I didn't tell her that I was going to play hookie and take a day for myself when I should have been working....and have a co- worker fill in for me and just use my vacation pay.

I can't see having her work an extra day just so I can have some time to won't be the last time tho. :)

Sorry to ramble on...I just needed to get this off my chest!

28 Replies

Dead Yoyo53

I understand perfectly where you're coming from and it really is good to talk.

Here in the UK we have district nurses who I imagine are the same as your home health workers. They seem to be a law unto themselves, they just arrive at the house and expect instant access even if no appointment has been made.

Take care and look after yourself.

Dorothy t


Our district nurse called on mum when she was in sheltered housing

I had tried to get an appointment so I would be there as mum needed incontinence pads. But she called after 3 weeks of me chasing it up and when I was not there. She fleetingly said over her shoulder to the home warden to keep a diary. I kept a comprehensive diary with the carers for 3 months

Then mum had to go into care. They then got told to keep another one which the district nurse collected 3 months later. After another month my sister contacted PALs at the hospital who discovered the nurse had not passed on the of many let downs by many people.


Hi Daughterno1

I can relate to this, I find that some of the district nurses are totally inadequate. I was told to keep a diary for my husband and that was ignored, I was told that as he knew when he wanted the toilet, under the criteria, my husband was not strictly incontinent. When I pointed out to them that he had to be assisted to the toilet, day and night because of his condition, if really did not register with them. They eventually relented but even then we were given a choice of either pads or bed protection, we could not have both. I settled for the bed protection and my husband uses conveens which we are able to get on prescription.

By the way, my husband saw the psychogeriatrician and we have the suction machine, more on both later.

Dorothy t


How are you getting on with the suction machine , can you manage it yourself . My husband has trouble but seems to be more settled at the moment .

As far as the district nurses pads and convenes are concerned , we line in S Wales and at the moment have access to continent nurses also . They have generally

been very helpful .

Had been using the conve for my husband for a long time now like your husband he isn't incontinent as such but unable to cope mobility wise .

We have recently started to use pads now at night and if I go out and leave him for a while .

Although we were grateful for the Conveen and bags because he is so retracted it kept slipping off and becoming a bigger problem , hence the pads . I was concerned about him get

ting wet and causing him skin reaction but have been surprised how dry he keeps .

We don't have to pay for any pads although they do ration them to a certain number or the convene end.

At the moment I am waiting for them to hopefully install a ceiling hoist for us . I manage everything except the transfer on and off his bed , they are planning to put one over his armchair also .

if I am able to use it myself it might even mean that I will not bpneed to have carers in at all . They only come really to get him in and out of bed . I have been managing to transfer him so far from wheelchair onto a commode chair with the use of a mobile hoist when it is stationary , I am unable to move it with him on it . c


Hope you are able to get some you time Dorothy however short a time . My daughter gets me out for two hours on two mornings a week , we just go for a coffee , and maybe the bank etc . I do my man shopping on line these days , it does help keep me a little more independent and not have to bother her all the time . I really don't want to more than I can help .


Hi cabbagecottage - hope the ceiling hoist works for you.

Would you really give up having carers in? What if you damage your back? Would it be a problem to set up again for them to come in?

I found it useful to have another pair of eyes (as well as another pair of hands!) as sometimes the carers noticed little things I missed, or were able to make suggestions for easier ways of doing things they had come across with other people.

And of course just having another friendly, cheerful face seemed to help Tony, locked as he was in his own little world.

Look after yourself.



I don't know how others have fared with having carers in . We have been having them for about 5 months they come morning and night . In that short time we have seen 48 different ones .

Their timings have got much better it was dreadful in the first place it was any times with in 2 hrs.

Because we don't have very regular carers I don't feel comfortable with all of them .

Having said that I probably wouldn't stop them in case I became poorly myself .

I am hoping that using a ceiling hoist I won't have to push and pull him myself like I do now. .


Excellent thoughts Mo!


Used to have the smae problem with retraction...saw a "gee whiz" catheter described on tv...dr gave a prescription for it...stayed on alot better than the regular he has the permanent foley and havent had any problems now wet pants, slip offs, no getting up at night to try and make it to the restroom, . It has been great! We all need as much extra help as possible ...and extra rest..


I have just googled the Gee whizz it is interesting . he is extremely retracted , retracts as I put the sheath on , very often I have to start all over again I have looked at the instructions and will try the ones we now have using the same instruction .

Where do you live , which country .


I live in Oregon, USA


Hi Yoyo53

It's good to be able to vent and rant to others who know exactly what you are talking about. It doesn't help practically but can make you feel a bit better for a while. Take as much time to yourself as you can. I now have sitters in 3 times a week for a couple of hours at a time and I make the most of the time, seeing friends or just drinking coffee in the local garden centre; anything to get out of the house alone.

Best wishes.

Nanna B


Dear All

I have as not used the suction machine as I am waiting for instructions on how to uses it. I was told to contact the district nurse who ordered it but will not do so as she had previously rang me to ask what sort of suction machine I wanted as she had no knowledge of them! Although to be fair the district nurse was instructed to order it by the speech therapist who will contact me soon.

As far as hoists and sling are concerned, we have a standing one which will help my husband stand. Again I have not as yet used it because we are still managing to get my husband up from bed to chair etc as most days he still has strength in his legs to assist us. I accept that, in time, we will have to use it perhaps. We cannot have any hoists hind from the ceiling, but it my husband will not be able to stand, what else is there

It would also seem that I have a great deal of care compare to some of you, I in fact receive 4 hours daily, some paid by us and some through the Direct Payment scheme. I may have said before, if is essentially a sitting service for me so that I have some "me" time but our particular carer is wonderful and she does so much for my husband, she says she looks on him as her grandad and will take care of him as such.

Take care

Dorothy t


It sounds like to are very lucky to have found such a good carer . We always have two at a time . Maybe using a ceiling might even manage with one . I have been considering trying direct payment . I am not sure how it works or how to go about finding my own carer. I would much prefer it . Even if it meant having more than one .

Unfortunately my husband cannot take any weight on his legs


Dear Cabbagecottage

You know the old saying, if you want a thing doing properly etc etc, well it has never been proved more true for me than during the last 3 and bit years of my husband's stage of PSP.

By this I mean, we got our own carers, through recommendation. I badgered the social services and everyone else in the medical services constantly until I was allocated not, one but two social,workers (one for me one for my husband). My social worker has been excellent and was instrumental in getting me more care hours. I told her that I wanted to stay with the care company which I was using and did not want to stay with the company normally allocated by Social Services. This is where Direct Payments is much better way of providing services, because you can choose who you want to employ in effect but I do not even have to get involved with anything to do with tax or insurance, this all done by the council on my behalf, all I have to do is to sign the carers time sheet each day to verify her hours.

Most local authorities will have this scheme I am sure.

Take care

Dorothy T



Vent away, Yoyo53 !

I didn't discover this site until after we lost Tony but I would have found it useful at times.

Hope you manage to keep on working - all carers need a life as well.

Best wishes.



Dear yoyo, I think you are remarkable to manage the level of care you describe AND go to work!!

When I was experiencing similar frustrations to you I was at least retired. I also received wonderful help from lowly paid social services carers but would have happily throttled many of the well paid medically qualified individuals involved. Maintaining a sense of humour, although difficult when tired, seemed to me essential for survival, as on the occasion when I had to explain to two ambulance persons (one of each gender) that Margaret hadn't yet mastered the art of levitation. They couldn't work out how to get her from her chair to the stretcher as they weren't permitted to lift anyone and hadn't been trained to use a hoist. This fiasco was to get Margaret to an 'orthoptics' appointment that I had tried to cancel because she could no longer open her eyes!!!!! or sit unaided. I was told that the appointment wouldn't have been made had it not been necessary, hence the ambulance. Needless to say it was a waste of time and resources and had subjected Margaret to an unnecessarily stressful afternoon.

I hope you satisfactorily resolve the house visits issue, I reckon "getting a little overwhelmed at times" may prove the understatement of the year! My kindest regards and best wishes to you both, Jerry

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We have had the same experience with the carers. One of the first things they told me was . Of course they are not allowed to lift !!!'!!!!

I couldn't believe my ears , I know all about health and safety and I am the last person who would want to hurt anyone of them . He generally has one male carer sometimes even two . He is not a big man help himself a little . it did settle down and they got use to handling him usually with me guiding them . I had been doing it for five years on my own ,

They have to work such dreadful hours for very low money and are often tired by the time they come to our house .

The last time we had to go for a hospital appointment was quite an experience , they carried him out in a small chair and plonked him onto the smallest seat . I could hAve cried luckily we haven't far to go . I dread the next time . it was the first time we have needed to go by ambulance .

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Thank you everyone for your quick replys...I already feel better!


Hi yoyo

I am sure that you need a proper break ,,'!!!!

I know as I have PSP & by partner will not leave me ,4 a night or two

I Can still be left alone , he is worried that I Can't cope on my own

In fact he went it stay with his daughter & had a good time free of me & this.0 PSP

I wa/so ok -and had Company both evenings

A neighbour is

Superb and made sure i was ok




I can relate. I've asked Hospice to call before coming and even had them put a note on my wife's file. They still manage to just show up occasionally. Frustrating! I also told them to not come between 2pm and 4 pm, wife's nap time. They are getting better. Don't worry about taking time for yourself, you deserve it. We caregivers all do. I'm sort of the reverse of you, I'm 79 and healthy, thank God, wife is 67 with PSP. Hang in there you are doing your best. Jimbo


How do you get him to and into the car? Jimbo


Used to push him up into our pickup truck till he fell thru the running boards twice...had to have the fire dept. come help me get him up and unstuck....he pretty much lost the ability, Or I should say muscle to help me hoist him... We bought an old 1984 van with a wheelchair lift. I put him and the wheelchair on it and wheel him into the back of the van and then strap him down...the door opening isn't tall enough so i have to pretty much lay him all the way down in his chair and then back him in till we have enough space to sit him up...we got back home one night after a Dr. Visit an hour away and when we got home he was bent over at the waist and couldn't get himself up...I didn't even know it...thank God I had

him seat belted in.


Thanks. Good that someone is watching over us when we aren't aware of things. LOL Jimbo


Sometimes when friends and family ask me how I manage / cope , I tell them I wouldn't know where to start to explain how it is . Unless they are in the same boat they couldn't possibly understand how it is could they . Hey Ho ! , lol


That's true...I have a good friend who is my sons age and she married an older man too..he is a roofer and has fallen off a few times and landed in the hospital.....she says I inspire her. And she is so proud of me as she knows (I am not the nurturing type...not Florence Nightingale...more of a nurse Ratchet...)when it comes to caregiving...and that I am taking such good care of him....

Ya, ya, ya, You have no idea only know the half of it .....and i I hope she never has to do care taking... It's not for woosies :)




Dear yoyo53

My Wife also workes, The Handicap Folk who arrange Finance Blue badge ect have also said I should have HOME HELP WASHING AND DRESSING ect,so do not feel bad playing hooky if it means you get a little time for you

Alan PSP France


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