Any advice at this stage please.

[Servena03]

John is now at the stage where he can't support any part of his body, I am struggling with transferring him from chair to wheelchair, but, my worse problem is with his bowel functions, his brain keeps telling him he needs the comode, but tthere's nothing happening , this is at least six times a day, now we know how long and what a struggle it takes to get him there and back, I do put his commode next to his chair, but I have to literally hold him up whilst pulling his clothes down, then to sit him down, I feel a accident is waiting to happen, John has been transferred to hospice care at home, they organised the O.T to come, we have a return which the carers use to get him up and put him to bed, it takes two of them, I care for him during the day. Is there anything out there small enough for me to manage on my own like a return? The psp specialist and hospice reckons he has only a couple of months, I don't agree, yes he can't move his own body, and his fingers and arm has started to stiffen, also his voice is very quiet and slow, but he is all there still John, eats very small amounts but well with a spoon if I cut it up for him. He also still has his wonderful sense of humour, although it takes a while to get it out, His chin is going toward his chest, I have to keep his neck cushioned, and he recently started to slump toward the the right. I still take him out for fresh air as often as I can in his great new wheelchair which reclines with a neck support, I am prepared to care for him for more than a couple of months, but of course I am terrified of the horrible end some of you have suffered, he is 82 and I, 76,we've been married for 56yrs, and I refuse any respite, I want to be with him to keep him calm. We feel blessed that we have a lovely family that care too,

We can't say those words Happy New Year, because we know it's not to be, but I will say keep strong and focused all for our loved ones, and thank you for being here, I read your notes every night, it helps so much, lol xxxxxJean

[Helen119]

Hi Jean, ask the hospice if they have a turner available that you can have that you can use on your own, it has a heavier base and a belt, but works similar to the one you have but can be used by one person. The hardest thing could be getting your husband to hold on to it and stand while you belt him on before you turn. The hospice O/Ts are usually very helpful, I would get them to come and see you as they maybe able to offer this or other things to help.

Love and hugs, I’ve been exactly where you are now.

Helen xxxx

[Servena03 in reply to Helen119]

Thank you for that , I will mention it tomorrow. See knowing you have been in the same situation is comforting for me keeps me calmer, again today four times on commode (used once) and ten minutes before tipped his cup of coffee over him another complete change, thankfully it's only half a cup with cold milk, although his leg was red not burnt. Will have to find a different cup, he has been using a Parkinson's cup with a straw for drinks, twice he's spilt it so new type of cup. Thanks again for the feed back lol xxx

[Helen119 in reply to Servena03]

We use cups with lid then a silicone straw, after so many spills, this was the best thing.

Hope you get on ok tomorrow.

Love and hugs xxx

[Servena03 in reply to Helen119]

Thank you that is the answere,lol xx

[JA10]

Hi Jean, my Mum has a hoist that can be used by 1 carer, I think they are called stand assist or something similar. She can weight bear still on her feet, but the big harness which is strapped round her waist stops falls. When she was poorly with an infection just before Christmas, she was sort of hanging in it from under her arm pits as she was not strong enough to weight bear, but still safe. We are UK and it is the hoist that her OT organised for her. My father is in a wheelchair himself due to MS, so the hoist is used by carers that SS have organised or my sister or I when we are looking after her. It is used for transfer from wheelchair to commode and back again, it can hold her safely up to enable cleaning/re dressing, and it is also used to transfer to bed, though they do have 2 carers then as she is tired and less able to self assist. Julie

[Servena03 in reply to JA10]

Again thanks for the advice, will discuss with OT, will let you know the outcome, bless you xxx

[mattnkatsmum1 in reply to Servena03]

My mum has one of these too and her symptoms are very similar to your husband’s. My 80 year old dad can manage her alone with a standing hoist so I would definitely ask about this.

[AJK2001]

Hi Jean

My Mum has just been assessed by OT and they have prescribed an Oxford Journey Electric Stand hoist (sounds like what Julie's Mum has), this is to allow safe transfers with just one person in attendance but I think they may need to be able to weight bear a little. There are different OTs out there (just to confuse us mere mortals), some are NHS based and some Social Services, plus I believe there are also palliative OTs, so if you are not getting the support you require from one, try the other. Our Care Agency got the SS OT in within 3 days last week (yes that's with a Bank Hol in the middle) but we've heard nothing from the referral that was made to the NHS mid Dec.

It sounds like your Hubby is similar stage to my Mum, quiet voice, eating very little, beginning to show signs of rigidity and developing a lean, but as with your husband Mum is still in there and still has her sense of humour. It's been a bit harder to get a smile out of her the last couple of weeks, but when she does she still has the most delightful smile and it melts your heart.

[Dadshelper]

Have you considered not using the commode and just going to adult diapers? I realize it's as not dignified but in my opinion safety is paramount. You run the risk of hurting him, yourself or both in a fall. When dad got where he could not longer support his own weight I used a hoyer lift for all moves and bowel movements were handled/cleaned in bed.

Ron

[Servena03 in reply to Dadshelper]

Yes, the hospice put John on pads now day time he has been on night pads for several months, but he finds it impossible to just use the pad for his bowels, you see he isn't incontinent just unable to use his body, and he pleads with me to get the commode to the extent he gets upset and angry, so I give in, although I have been told not to, but even still I need to transfer him to his wheelchair to take him and me out, thank you for your reply xxx

[Mtorres9235]

Hi. I have had similar problems and believe you are correct to be afraid of a fall. I take care of my husband alone and cannot manage the pull up and the transfer. I wait until I have help and in the meantime, I change him in bed with diapers so there will be no issue of wetness. I also think you are wise to know that he will last longer than the medical community understands. My husband is a fighter and wants to live and it has been 5 years since we were told that he would be dead within the year. The problem is getting your husband to trust that you will change him when he is wet and for you both coming to terms with this. This took awhile for both of us. But falling is the worst thing that can happen. Believe me, we have been there and done that numerous times. Get someone to show you how to roll him in bed and change him. It is not the easiest thing to do but at least he is not in danger of falling. My suggestion only, of course. Good luck and God bless

[Servena03 in reply to Mtorres9235]

Thanks for the tips, mtorres, John is still escorted to his reclining chair in the front room, in the mornings by the welfare and collected from there at 7pm for bed. We are still struggling to live a daily life, although we know things will progress, bless you xxx Ijean

[Mtorres9235]

I also have Help morning and night

[Servena03]

We are UK based, I will write the name down and see what they suggests. Sorry to hear about your mum, see I believe you have it harder trying to care for a parent, as we're married I'm by John's side 24/7, but it hurts to see our loved ones going through this. Good luck and thanks for your reply xxxJean

[Suebatt]

Hi jean

Sorry to hear of your dilemma that your having

By the sounds of it you need what is called a Sara steady and also a mobile hoist which will help you and him also ask for some slide sheets for bed which these all can come from o/t

By the sound of it you needs carers more than twice a day also if they come in 2s that’s the best idea for the other visits

I honestly hope you get the extra help as you sure need it as you it is hard with just yourself

Please take care

Sue x

[Tttp]

Hi Serbia reading your post sounds the same as my brother, what we did a few months back we had a pole put in right by his bed we can stand him up while he holds the pole and able to get him in the wheel chair or is wheel chair, my brother’s arm’s and his leg’s are soooo stiff, I or my sister en law can do it alone, but there are times when it takes us both, such a hard situation, I am with you no respite, my brother is on Comfort Care at home , and he also still has a sense of humor, many Blessing to you and your hubby. Take care Nettie

[FoggyBay]

R is in a similar stage to your John and I am surprised that you don't have much better equipment support, which you must have to keep you both safe. We use an Oxford Journey stand-aid for chair to wheelchair/commode chair transfers, which has worked very well. We have a gantry and sling to transfer him into and out of bed because he got to the stage that he could not maintain his posture to sit in free space when we moved him onto the bed. His ability to weight-bear is almost gone and he does now almost hang in the harness of the stand-aid, so we have just had installed in the lounge where he spends most of the day another gantry and sling, but he wants to keep using the stand-aid as long as he can. All of this equipment is supplied by the NHS and has changed over time as R's needs have changed. You really need this equipment and the OTs should be arranging it for you. You must remember that if something happens to you when you are struggling to move him, you may no longer be able to look after him. Your PSP specialist nurse should also be recognising your problems and helping you get the support you need and the care John needs. (Sorry, slipping into a rant!)

Specifically on the bowel movement front, is John taking something for constipation? R has a daily dose of Macrogol which keeps him quite regular with not-too-hard stools. We increase the dose a bit it if he has a day or two when he can't go and then we revert back to the normal dose once he is back to 'normal'. Nothing worse than feeling you have to go and then not being able to.

[Servena03 in reply to FoggyBay]

Thank you foggy bay, I have also written down your aid names, I am sure OT will give me something this afternoon, will write a note tonight what I've been offered. Yes John was offered laxido for his constipation but he couldn't drink all the amount of dosage, so they have now given him docusate capsules which softens the stools. Bless you xxx Jean

[LuisRodicioRodicio]

Hi Servena03!

A big hug.

During the 6.5 years in which we lived with PSP I have been collecting my own experiences and that of other members of the chat to offer this notes as a suggestion to patients and caregivers.

I can not improve the responses of my chat partners listed at this time as answers. Wishing the best for you and your family and if the document with our experiences and our solutions can be useful, do not hesitate to let me know to send it by private mail through this chat.

Courage and luck.

Luis

[DenB]

Hi Jean,

Ask the OT's to consider a ceiling hoist to be fitted for you. The OT's here, were quite quick in realising that I was close to the time in which I would need to have one, for transfers for my husband. They take time to arrange delivery and to be fitted. We had one fitted in the bedroom and one fitted in the living room, a while before I needed to use them and they have been a godsend ever since!

Take care

Denise x

[DenB]

Macrogol has been very effective in constipation relief for my husband.

D x