Well Valerie has been on a plateau for the last few months but has just fallen off the cliff !!
First her left leg collapsed and now the right - she can no longer bear any weight and moving her is horrendous , just a dead weight. It's been a panic to get a hoist in place and to try to organise extra help during the day to toilet her. It's not in place yet and I'm struggling on my own. Hopefully next week I'll get the extra calls
Added to that her jaw clenching has got worse and she is eating very little - I'm watching the weight drop off her daily. And what about the inability to clear the build up of mucus in the throat ??
But it's not all bad - we had a good Mothers day with the family and even got a couple of smiles.
We'll have to get used to the " new normal " and hope we have another plateau for a while - every day is a challenge isn't it ?
Bryan
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bryval
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Thanks Amanda. Yes the hospice is involved and have helped sort out the hoist. We now have a manual one and a ceiling hoist is on order.
Our social worker re-assessed Valerie yesterday and has proposed double up carers in the morning plus three more calls. She hopes to get it approved this week.
The tip on supplement drinks is useful - the GP will be visiting this week and I'll ask her about them.
Thanks for your concern - it's good to know I'm not alone.
Your sadly not alone Bryan and we all totally understand, I’m pleased help is hopefully being planned!
Again this really concerns me as to why the gp or hospice hasn’t mentioned supplement drinks before, they are loaded with calories and some even contain the right nutrition! I hope the gp can help with this ASAP!
Bryan I am so sorry to hear this. You shouldn't have to move Valerie alone. It will end up with you hurting yourself badly. Ring your GP and tell him/her that you can't cope without help. Be very firm!
As for the hoist why the delay? Your OT should be able to get one straight away. They can be purchased if they have none in stock! You need to get on that phone and make it sound even worse than it is. It actually sounds very bad to me to be honest.
Has a doctor checked her out? I am asking because this happened to G and it turned out he had pneumonia! Remember the TV shots of Hilary Clinton's legs giving way very suddenly? She might have it but be unable to tell you how she feels?
I guess this is an example of having things in place before you need them Bryan? The OT needs to get their backside into gear and sort out what you need asap...like tomorrow. If you get no joy ask the Hospice can Valerie go in for a week's respite while they sort out your equipment! Tell them how bad things are and don't be nice!
By the way you need a suction machine for the saliva.
Bryan, you're so right - those "stage changes" are so scary. We don't realize how comfortable we get with a particular plateau,( because we think it's all awful)...until the next stage drops and alarms us! Then it's like "Oh no! is this really happening??" (...even though we read this site all the time and know what to expect!!...) You are most definitely not alone.
Oh my goodness that sounds horrendous Bryan it sends you into a panic when you can't move them. Im waiting for that to happen with Ben, he can just about weight bare using the rollating standing board but it's getting more difficult for him now. I have a hoist in place as no room for moveable one in his room., he's had to use it a couple of times when he not been too well. We've had two carers at a time since he got CHC funding but only have them in morning and evening. He wears a convene so I don't have to deal with wet pads although he does wear a pad as he is having problems controlling his bowels.(could probably have put that more discreetly but never mind!) I hate having more calls than that but know that sometime soon it's going to be necessary. It's only through the information I've gathered from this site that I have been able to stay one step ahead, it doesn't always fill you with hope and joy knowing what's to come but it's good to be prepared for every eventuality, or as much as is humanly possible. Hoping you get sorted very quickly, Amanda's suggestion for emergency respite sounds a good idea to me it will allow you time to get your head round the new situation and ensure you have all of the equipment and care in place.
So sorry to hear that things have worsened. Just when you feel you are coping with one stage, PSP throws something else at you.
Get all the help you will need, if necessary be loud and persistent until the OT, GP etc get things moving quickly. Do you have a Parkinson’s nurse ? The big problem I had when P was still at home was getting carers , all the local agencies were unable to supply enough help, so I had to manage with one male helper in the mornings.
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Chris off to work !
Time to log off.
A newcomer - Mum with PSP
