So glad I found this site and reading other people's stories as been a big help.
My dad was diagnosed with CBD around 6 years ago where he had problems with his right arm. Now 6 years on the past 12 months have been awful watching him suffer.
It is braking mine and the family's heart.
Over the past 12 months the right leg is also now effected so his mobility as gone from not to bad to now us having an electric wheelchair made for him.
His speech is effected to the point we can't really understand what he's saying so I just agree :/ and I have noticed he can't drink his drinks as well he has to sip or gets an awful cough.
Now this is my worry dad lives on his own with a care package and of course a family of support. My dad body is braking down but his mind is all there (this is the awful thing) as he still thinks he's able to walk and get up and this has caused some bad falls including him slitting his eyebrow open last week and braking his nose.
His face is a right mess at the moment but he won't give up.
Im worried when he gets his electric wheelchair that he's still gonna try and walk and next time the fall will be a lot worse.
His care package is really good we have a carer there all day with him but I'm thinking he should have 24 hour care? But how do you say this to a man who is all there and he's made it clear to us he not going into a home.
Some advice would be great. I hope my text makes sense im just so down with it all at the moment.
Just to mention he's staying with me and my sister at the moment as the fall last week knocked him for 6 but he has got a lot better this week.
Mandy xxxx
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Rologirl79
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Hi Mandy, welcome to this site, but I'm sorry you had need to join it. It is very difficult seeing a body gradually deteriorate when the person involved has almost full mental capacity. I say almost as one symptom appears to be the unacceptance that they can't do normal things they used to, hence the frequent accidents. My husband definitely needs 24 hour care just to keep him safe. It's really good you have full time day care; my husband managed to have lots of accidents at night, even with me sleeping next to him. Does he live in a house with stairs he could fall down? When he gets his chair, is he likely to go out alone? I don't know how you can persuade him he needs 24 hour care. You have to abide by his wishes as he has the mental capacity to make decisions and I can well understand his reluctance to enter a care home, most of us would feel the same even though we know it may be inevitable. I don't know if you are in the UK, self funding or with CHC. With CHC we have a night carer 5 nights a week and before she came to us, she was a live in carer for someone so perhaps that could be considered. Not knowing your dad's situation I can't be much help and probably wouldn't be if I did know.
My husband was not permitted to have an electric wheelchair provided on the NHS as he wouldn't be able to control it so I bought one controlled by me. If you find he can't control his safely, you can have the controls adapted so you or the carers can take him out.
I do hope you get the help you want and your dad needs.
I was very interested to read of the electric wheelchair operated by carer, how does this work ? My husband has no coordination to operate a mobility scooter or wheelchair, even riser recline chair gives him problems as does the remote to the bath chair.
I read your blogs frequently , I don't know how you cope .
Hi there, I have my moments of despair as well, times when I think I can't do this anymore. Usually at 3, 4, 5 am but things have progressed here and my husband can no longer walk so I don't have to worry about him trying to change light bulbs, mow the lawn etc. If he uses the controls of his rise recliner or tries to get out of bed, he only gets as far as the floor, usually flat on his back!
The joystick control on the chair is fixed behind the chair to one side. I can walk behind and with one finger can move him. On a wide path, I can walk beside him. Pushing a nearly 6 ft, 15 stone man around was killing 5ft 4inch me. It was very expensive but worth every penny. We are National Trust members and the chair is so easy on gravel and bark paths. I have managed to get him stuck in mud a couple of times but there are always nice young strong men around to help get him out.
Wow, it sounds wonderful, I don't think my husband is quite at the stage for wheelchair just yet but from my point of view it would be easier , but he can do nothing on his own , can't get out of chair, car or. Bed, but the chair and bath remote chair and grab rails help but I know wheelchair time is just round the corner. I didn't know one could be operated by myself. He has a 4 wheeled walker but even that he can't steer or move on his own or even stand for a few mins. I shall start looking at the wheelchair I knew it would be pricey, but what a Godsend.
wish some of us on this site could meet up, it's lonely sometimes and same for the sufferers too, they must feel isolated. My husband still does not accept diagnosis, says "they" don't know what they are talking about. I can't sleep at night thinking ahead, we are having to sell up and look for one level accommodation. OT says he would not be able to do a stair lift eventually, he has bed in our one lounge at present and we haul him upstairs for bath . Nightmare. Look forward to your inspirational blogs, bye for now x
I'm so sorry you have to move. It's bad enough coping with the illness without the extra worry. I hope you have people to help you sort things like this out.
If you contact the PSPA, they will be able to put you in contact with your local support group, if one exists. I have met Doglinton and her husband at the one in the South East. We meet every other month. Local means a half hour drive, 6 minutes of it on the M25, but it's worth a few minutes stress. If you go to your page on this site you can see if anyone lives near you.
Thanks I did not know about my page, no one near me , 49miles the nearest , was one at 16 miles ,but passed away recently., but I'll keep checking.
Yes I'm not relishing a move and also hope we can find suitable place to move to where we can adapt the bathroom and he can have a bedroom all on same level. I panic every now and again at the thought. A crystal ball would be handy.
Well have a good week and thanks for your online company
Yes I do when I can. Have you been? I usually take my husband but he stayed with a sitter from Crossroads last week. If you haven't been, it's a very relaxed,informal get together in one of the restaurants. The group is growing and is now much bigger than the first one I attended.
Perhaps we will meet at the next meeting, if we haven't already!
I have been meaning to get to one of the meetings since my daughter found out about the PSP group, maybe 18 months to 2 years ago! I have just joined the PSPA and spoken to.....can't remember her name now.........sounded lovely.
If I ever get to a meeting, which I will probably go to with Roy, I will search you out and it certainly would be lovely to meet you.
hello Nanna . social service have visited us at last , This time she has given me her e mail address so can keep in touch more easily .
she has passed Johns case on to the team for referral for CHC assessment .
I am not holding my breath with that though .
john hasn't PSP although with Patkinsons a lot similar . His gaze is down not up .
he also hasn't dementia although very close on as much as seeing things and people . He is very fluctuating . But generally at his best when ever anyone of the professional come to talk to him . . they are not with him for long . They need to move in for a week .
he can go from. Not being able to be understood one day or two days cannot coordinate anything and the next day ok for short whiles.
nor being able to move then the other evening I went i
Back into the room and he had taken his top reach to get ready for bed .
medication has never really helped . never helped with planning skills
cannot feed himself at all now and I often get difficulty with trying to feed because of rigid and dropped jaw . L
although no exactly in continent . hasn't managed in that area personall for a bout five years . now he is slower and move to poor . although he wears pads I manage to keep him dry buy hoisting he know when he needs unless he is in a switched off mode .
I should really leave him but I need to get out for a short time never longer than two hours anytime but makes a big difference to me . they have told me they don't give sits but I can pay £16 an hour privately .
do you think any of these symptoms would warrant CHC . another thing I keep on top of sorting out any sore bottom issues . I am vigilant . I actually shoot myself in the foot .
Hi CabbageCottage, shorter post as this is the third time of trying. If you google " Decision Support a tool for NHS continuing healthcare" or go to gov.uk and type it in the search space it will give you the form and instructions the professionals will use. It will give you an idea of what they are looking for. If you tell them all the things you do, including vigilance with cleaning to avoid sores, they should take notice. I hope they don't take too long to get the process started and also hope you are successful.
thank you Very much for that Nanna , It's most helpful . I don't know what if any difference living in Wales and lots going on at the moment after the election .
I have had an e mail from the social worker on our case and she has asked to start with a nurse assessment , it is my vigilance that keeps John safe all round including skin continence feeding drinking along with all the emotions .
he has been particularly good this week , I mean by that more stable , of course it will eventually all change , comes back to bite me on the bum .
I do feel a little nervous about the process it can make me feel as if I am making it all up on times because he does generally cope better when a nurse or GP visits . Seems to pull all the guns out .
I know what you mean. It's horrible saying how it really is when things appear to be OK. Say how it would be if you weren't there 24 hours a day to look after him. At least it looks as if things are moving. All the best. X
I sympathise with you , it's awful isn't it, my husband has psp and is in similar stage to your dad with his left side being affected, he thinks he can walk the 2 miles into town or mow the lawn !!!!! We have rows galore about it . I don't have any bright ideas to help you , just sharing my thoughts , we can't tie them in the chair can we. !
Welcome. My husband is same way. Stubborn and has most of his cognitive abilities. His executive functioning skills are breaking down He cannot plan, initiate, change course, and get back on course therefore He may continue to wash the glass while the towel on the stove sets on fire. This lack of function is not lack of cognitive function just lack of "what do I do about it". Perhaps If you sit down and tell him that if he goes to the hospital too many times AND on his own, DHS or social services will become the deciders in his situation. For him to be independent, he must know what to give up. It's good that he has day care, what's wrong with overnight care? My husband usually has most of his falls getting up in the midnight for his many potty breaks. Even with me assisting I can't save him every time! Nor can you. But you can help him solve this problem with a little bit of perspective. Goodluck
Sadley it got a whole lot worse for my dad looking back on the top post he was still pretty normal compared to how the last 2 years turned out.
Well he peacefully passed away Thursday morning at 7am in his sleep. I'm truly devastated and gutted and miss him like crazy but on the other hand he not having to suffer this dreadful CBD illness anymore. He's not sleeping with God and this keeps me sane.
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