Trying to stay home much as possible. Will not leave him alone anymore so I work less and even though it is a full-time job taking care of him, I want to be with Charles these last days. I'm just stumbling through life right now.
Help.
Cuttercat
Trying to stay home: Trying to stay home... - PSP Association
Trying to stay home
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Cuttercat
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Prayers
Dear Stumbling
Me too!...
....That was my first message to you because that's exactly how it feels . I am just waiting for Bruce to need me. That means I do nothing else....I might get out to the store once or twice a week....Actually he is more safe now that he does not walk.....well.....So I stumble and wait and go to the pharmacy....Listen to Red Hot Chili Peppers.....or Mozart.....and play cards.....I try to clean stuff out....and though that feels really good to decrap my life, I do not do it as much as I should! I try to set a goal for the day , but most of the time it slips from me waiting for tomorrow....
Sincerely,
Stumbling With You,
AVB
Yes I agree, just there for them, when they need anything, sometimes I feel really lonely, it is like you are waiting for something, but don't now what!!!!! Hugs Yvonne xxxxx
Thank you for saying this. It sounds just like my life! Sometimes I wonder if there is life outside my little home, but my husband is my life and I just want to be here for him. Thank you.
Could you leave him for a short while if he didn't need the toilet , or are you afraid he will get out of chair and fall .
I fear the fall. Yes.
Cuttercat
Does he get out or just for the toilet. ?
When John was like that he was very unsafe but once I got the convenes that wasa big help . I never let him for long and by then he had had so many falls he was afraid to get out
Sad to say he is chair or bed bound now and hoisted at all time very little movement
Yes, today they mentioned a hoist. Last night I couldn't lift him at all.
Very sad and I'm just in a whirlwind that doesn't stop.
Cuttercat
Don't be afraid of the hoists , . We have ceiling hoist portable ones not fixed to ceiling or walls .
I couldn't use the ones you push , too heavy for me . I am eighty next month . Have been used the ceiling ones though for last three years he is hoisted with slings at all times , on and off his chair from bed or chair to commode ,.
If I can so it anyone can do it , that's if they want to of course and have no other illness or problems . I do have cervical Dystonia . A very painful neck and shoulder . Made worse before we had hoists in . So be ware make life as easy for you .
Thanks for the vote of support. I think we need this. It's getting harder and harder all the time.
I'm in the same boat, I keep saying I not sure if I'm going to make it , meaning out live this and then that stress me more . It consume your every wakeing moment and that's a lot because sleep seams to be a distance memory as well. Hang in everyone.thanks for being here at a place where no one wants to be.
PSP sucks
Dee on BC
Dear Cutter cat
You describe our lives too. It is a constant stateof high alert day and night. I still work and risk leaving hubby for max if 2 hours at a time but on tender hooks all that time as he is still just about mobile. It feels an endless slog when I got home from work last night made a cup of tea which he then picked up and threw at me crossed my my mind why did I go home at all!!! Their frustration and our exhaustion what a life PSP brings.
Thank full for this forum where we can say it like it is! !
Xxxxx
Morning yep another stage, I think when this journey is over I will right a users guide to this s**t , although unpredictable reading the posts there is a path which we all follow with a common theme.
I specified in Rog'care package for the CHC I do the nursing but I have three hour blocks per day, to be honest that is the only thing keeping me physically and mentally able to cope. If you can get away each day even for a quick walk.
Much love
Julie
It what Told CH. I do the nursing caring the lot.
Dear Cuttercat, seems like there are many of us on this site in the same position and it's hard. I have so many jobs that need doing but I just put them off. As you say it seems that your whole being is focussed on your loved one and there is no place for other things to get in the way, it is all consuming. I sometimes feel desperate for a bit of me time and friends have offered to sit with Ben but I worry about his personal care and other needs that I am reluctant to hand him over to somebody else's care. Thank goodness for hospice care although haven't done that for three weeks now due to coughs colds etc..it's a vicious circle isn't it?
Love and hugs
Kate xxx
I don't leave John other than my six hours a week . I am sleeping in the chair at his bedside . Thise six hours are precious to me
Tough isn't it, I was sleeping on the sofa in the next room with the door open until 3 nights ago. I have now moved back upstairs and have a video monitor on so that I can see and hear him. He also has a bell by his bed that he can ring if he needs me, so far so good.
Love Kate xxxx
Yes it is . John has gone past that Kate .i have the video camera and he has a bell push on bed rail but he doesn't push that anymore . .
You sound like I have been Kate , you wonder how on earth you can keep going but we do find the strength from somewhere xx. do you get a break at all .
Is the video monitor easy to set up ? I'm ignorant of these things.
Love, Jean xx
It's pretty simple as is a baby monitor, once you get the connection right its simple and so far so good. xx
I leave and the entire time I'm gone I'm anxious and afraid.
More changes ahead and all encompassing.
Thank you, everyone, for your support.
Cuttercat (Loesje)
Perhaps you could try leaving him with a friend ? I do this every couple of weeks with friends who were very keen to help. One is a male friend and stays for a couple of hours and talks politics and sport. The other is a woman friend who takes him to the toilet and gives him lunch so I have a few hours and can meet a friend in London and feel normal.
It saves my feeling of identity.
Love from Jean xx
I know I have to let go a bit but Ben finds being looked after by friends a bit daunting if he needs to go to the loo for what he calls 'number two' it's so unpredictable and he can't manage at all, needs to be wiped a cleaned etc. Think it would have to be an outsider but I know I need to get something sorted for my own sanity.
Kate Xx
That's precisely it. He can't talk and people just can't handle him, he is still so tall and big.
Cuttercat
I'm lucky in that Chris is entirely uninhibited about personal care and my friend is equally realistic.
Jean x
Maybe Ben will eventually become less proud, hopefully. xxx
Does Ben go to respite ? I think being seen to by professionals helped him to accept it. xxx
Haven't had respite yet but it has been talked about, something I need to sort early 2017 but the guilt of putting him 'out to grass' is something I need to get over. A lot of learning to be done this year. xx
I didn't have too much of a struggle because I recognised that I would not survive indefinitely without one !
I talked to the counsellor I was seeing and we agreed that Chris has always looked out for me. So I asked him if he was willing to go in the hospice to give me a break. He agreed immediately. He can't do much for me now but he can do that.
I organise visitors and he enjoys it there. The food is good, which is important to him.
Good luck, Kate .
love, Jean x
Hi Kate, of course having to go to the loo, with a friend, would be awful. But a Carer from a company, or if you could find a respite place for him, will be fine. I bet he had no problem, all those weeks in hospital. It's the uniform. Going into respite isn't, being out of to grass!!! It's giving you a much needed break, so you can carry on looking after him at home. Remember my olde catch phrase, "Better part time, than full time!" I started out every three months, got down to every six weeks, was about to change that to every four weeks. It was hard at first, but would not have changed a thing now.
Lots of love
Heady
Hi Cuttercat, I cannot point you to a helping hand as the UK system differs from USA so I will leave that to AVB, EC, Ketchupman and the CurePSP group.
You are at or even beyond the stage when you need some time out for yourself. You can only do 24/7 care and the constant alert state for so long before you start to break down which will not be a help to Charles.
I had all the home care that NHS could provide for M but I had to admit the constant alert was killing me so had to move M to a nursing home for her last 9 months. It allowed me to recover while still helping with her care. I admit it was not an easy decision.
Anyway best wishes and virtual hugs from this side of the pond. Tim
I am afraid, it is just a case of stumbling along. I use to sit for hours, while Steve was asleep, frightened of moving, in case I woke him, or worse, have him wake, whilst I was out of the room.
Full time job yes, but with an extra 16 hours of unpaid overtime per day. Nobody can survive that without some breaks. Of course you can't leave Charles on his own any more, you MUST find a way of getting some help in, so you can have a rest. This is essential for Charles's well being. Without it, you will crash, then who cares for him????? It's not selfish, running away or any of the other stupid thoughts, that go through our heads. It's all part and parcel of his care.
Lots of love
Heady
Thank you Heady for the advice and understanding.
It's gratifying to hear that I'm not alone with all of this at this stage.
We go over to the funeral home next week to go over planning. It may be several months I don't know but want to be ready, if we can ever be ready.
Love,
Cuttercat
We are not there yet but I recognise the " on alert " and how draining it is. I have loads to do but cannot energise myself.
Its a very lonely place and I think it must be for Chris too.
It all wears you out and yet I can't bear the thought of the end.
With you in thoughts, cuttercat.
love from Jean x
You could use some respite... is there any help available for you?
Dear daddyt,
Nothing else but Hospice. They are good but unfortunately it all takes money.
Cuttercat
Hello, dear: I can read fear, anxiety, and so many more emotions in your post. What can I do to help you? Can I come and sit with Charles to give you a break? I know we planned to talk when things settled down after the holidays, and my kids have returned to China, so call me at any time. I will message you my phone number in case you don't have it. In the meantime, I am praying for you.
Cuttercut I know that feeling well. I thought I would have a breakdown. Even now he is in a Care Home and I worry all the time. Not without cause. They are not a Nursing Home and very understaffed. I worry so much that he will choke as he is left alone to feed himself! Plus there is the guilt!
Meanwhile today we had a letter from the Neurologist who saw him 12 months ago saying he probably has MSA! Last year it was PSP with some signs of MSA. We are going to another Neurologist on Monday so maybe someone will tell us what is going on? Feel like screaming!
Cuttercut please take care of yourself and escape when you can. You are doing your best as we all are?
Love and hugs to you.
Marie x
Dear Cuttercat, is there anyone who could sit with Charles just to give you a much needed break, even for half an hour to go for a walk/coffee. You have to look after yourself in order to look after Charles. Thinking of you and sending my love, Nanny857xx
We got a dog in October 2016, I thought it would comfort Geoff. It has.
He came from a UK charity called The Cinnamon Trust and has been our angel with smelly parps !!!
The only time I get out is to walk him twice a day, once in the morning before I get G up and showered and then in the afternoon leaving Geoff toileted and watching TV.
When the weather improves I will wheel Geoff with us for the afternoon walks but without our beautiful beagle I too, would never get out of our home.
Having the energy to do the daily tasks is a constant.
Keep going and remember to tell yourself just how amazing you are
We are debating whether to get a little dog but there seem to me to be too many cons over pros. We both love dogs and had one foe 15 years when the boys were small. It's a great temptation but worry that I will regret it as it will all be down to me. xx
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