Well, the inevitable happened! I crashed last week.
Was doing so well, trying to get things in place to get help. It was all coming together, but obviously not quick enough. I broke down and couldn't get out of it, so in end admitted defeat and called my daughter!
Thankfully my angel is very resourceful young woman, ex trained nurse, in management for a caring Charty, so could easily take control. I was packed off to my sister's for two nights. She looked after S, with the help of S's son and wife.
I know we all preach, take care of yourself, but NOT one of us actually does. We all think of our loved one first, their needs, their feelings and ignore our own. This is not right, it is not helpful. I knew I was tired, I knew I was struggling to cope. Lots of you told me to get a rest, but I didn't feel I could leave S. It wasn't fair, how could I run away, while he had to stay and put up with his illness.
WRONG, WRONG! WRONG!
It is their illness, not ours! We are the ones doing the looking after, so of course, it's US, that NEEDS the rest! I was only away for two nights. But it was enough to make me want to come home. Yes, I still feel tired, yes, I still feel overwhelmed by the whole situation and yes, I do feel very guilty for crashing. But it has made me realise that, these breaks are essential for S's well being. He was in a terrible state the evening of the crash. He couldn't do anything, say anything or even just hold me. It was very wrong of me to put him in this position. One thing I have come to realise, the thing PSP loves more than anything, is stress! The symptoms become 10 times worse, thus making everything more unbearable!
Somehow, I am going to have to accept that I have to go away every so often. People are going to have help me do this. I CANT look after S by myself, nobody can, not for the years we have to do this job. Thinking about it, S was diagnosed in 2013 had a stroke 2 years before that. I now know I was caring for him at least 2/3 years even before his stroke. That makes at least 6/7 years that I am now aware of, before that? Who knows! You will have similar stories. Your caring role, especially for whose spouses have PSP, will be a lot longer than you realise!
I implore you all, take a good look at yourself in the mirror, be honest, " do I need a break?" I bet most of the answers will be YES, then find a way to get one. Even if it's just for a night. To be out in the grown up world, for a few short hours is fabulous.
Please don't let yourselves get into my situation, where there is no choice but to take a time out. It causes far too many problems. Organise a break, get prepared, have something to look forward to, these things alone are good for you! Your loved one will survive. I think S has had a good time, everyone tripping over themselves to make him feel wanted, loved and cared for. Not some neurotic, screaming, crying wreck! Some choice!!!
I know from the posts, some of you are getting quite close to the place I found myself in. You know who you are. Please do something NOW! The world doesn't stop, just because you admit to having to get off the merry-go-round for a few nights!!!
Sending everyone lots of love and thanks for helping me through the last few weeks, I did try and take the advice you all gave me, but obviously not quick or soon enough. Lesson learnt!!!!!!!! (The hard way, as per normal!)
Lots of love
Heady
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Heady
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Heady glad you had a break you needed it, I think we all feel guilty for wanting a break, but as you said they are sick, and us as careers don't acknowledge, how tired and stressed we are.
Do you think we think we are letting people down? We have looked after our own children and partners for years, we should be able to ask for help, from others, not when they offer we say we are fine, I am fine, when you know deep down you are not.
We are going to cyprus we have booked for6 days, just George myself and our 3 children, my eldest daughter said her and my other daughter can look after day in the afternoon, because they would of both had a holiday, myself and Peter, (son) had not, I thought that was a lovely gesture.
Heady I am glad you are feeling better, was quite concerned about you.
Go and see a councillor will do you good.
Also still no word from Jill feeling a bit worried hope she is ok.
Stirring in my summer house with a cup of tea, breeze blowing feeling relaxed. love to you all
Hi. Yvonne. Really glad you have booked to go to Cyprus! Try and get some me time. When any of the children offer to look after George. GO! Take the others and have a good time. Feel the sun, feel the freedom, feel like a grown up again!
I'm sure you are right, we don't WANT to let our loved ones down, we look upon asking for help, as failing! How stupid is that. How can anyone that has looked after someone 24/7, for umpteen years, FAIL?????? A lot, as well, we don't want anybody to know how we are truly feeling! don't want to worry the kids. As if people can't see the bags ( no suitcases) under our eyes! As if our children really believe us, when we say we are fine. That must make the worry, for them, even worse!
There is no easy answer, there is no easy way. Which ever way you look at it,PSP sucks for everyone!!!
it sounds like a once a month for two to three nights may be a good thing. The first night is the getting there, the second night is the apex the staying there knowing nothing matters tomorrow..what time you get up; eat; use the bathroom! the third night is the getting back...the last moments of relaxed joy,,,,and reminding yourself that being home will be a good thing....and for the next 27 days you can handle it!
Heady, you are strong thus the writing, still thinking about others (that would be we carers). Congratulations finding the strength to ask for help; take the help; and give the help.
Oh, Heady. So sorry to hear you had it so bad. Hope you are feeling more yourself now. You are right, of course, but we don't see ourselves so clearly and when anyone gets stressed they lose sight of reality and feel the world will collapse without them. I know that but it doesn't mean I don't fall into the same trap. I am trying to arrange a break for me soon. Lets see!
So pleased the break made you feel much better. Don't wait until the next one before you do things for you though. Take every opportunity you can to enjoy yourself.
X
Heady I do hope you are now feeling better. Your post resonates greatly with me. - currently counting the days till my daughter moves in to help on 1st September. Take care of yourself.
This is all so true I looked after les for seven years without help until my health broke down he is now in care and I am facing open heart surgery don't let it happen to you
Dear Heady, so sorry to hear you crashed, but reading your post I can relate to it.
The GP, consultant, hospice and counsellor are all going on at me to get G into a hospice and for me to get away. G has finally "sort of" excepted this, having had a meeting at the hospice last Monday. I went to see 2 care homes last week, one of which I thought was ok. But as you say PSP loves stress, so G was unwell getting a UTI in the very early hours of Wednesday morning. So naturally (or irrationally) felt so guilty for causing the stress.
Next step is to have a visit to the care home with G, then have a trial run for a couple of days with a few of having 7-10 days in September.
Hi, don't forget G could be stressed, because he knows he is the cause of your stress! Vicious circle, I am afraid!
Keep up the good work, it can only be to G's benefit, to have you well and rested! We wouldn't let a doctor anyway near us, if they had been on duty for half as many hours as we put in!!!
Heady, so sorry you had 'the crash.' I had mine early in January and was a mess and didn't know where to turn, our GP was still on holiday, I don't have family to help out and having only just moved over here no real close friends either. I found there is a Regional PSP Care Adviser and made contact with Jane. She took everything out of my hands and called so many people to get in help for me I was reeling with everything! We got the necessary changes to the flat, all the monies we were entitled to claim and knew nothing about and I get a few hours respite a week. My GP keeps in touch regularly for updates and is currently insisting I need more respite time now. Our local hospice is just down the road and I am hoping that my husband will be accepted by their day centre which is run Mon-Weds. Whilst I love my Wednesday afternoons, I am mindful that my husband is still in these four walls and not getting anything for himself - makes me feel so guilty still. If the hospice will allow him to attend then I will get more time to myself and, best of all, he will get something too. As yet he is still able to walk, sometimes a bit shaky but physio are doing wonders there too. His main problem is his speech and getting himself so uptight when he can't get a word out that he stops talking totally for an hour or so. I know I should shout out for help more often but when there isn't anyone to help you just manage, don't you?
Jane - PSP Care Adviser has recently sent me a stack of info on PSP and the quarterly magazine and mentioned there is a family day planned near us in November which we will be invited to. A little nervous though - I really want and need to do this day but am a bit worried how hubby will feel when he sees others with the condition who are going to be further down the line than him, so mulling it all over.
Hi GillJan, it's a lonely, dark place down here, isn't it?
Where abouts are you? Jane is our PSPA co-ordinator has well. Although I know she covers a huge area. She certainly knows her job! You are right to try and get your husband into the local hospice. S goes once a week, loves it. Like you say, it's something for them. I try and take S out as much as I can, but there are only so many times you can go the Mall or the garden centre. The places he would like to go, I can't get him, because of his mobility! Last week he left home, like a Zombie, had not spoken a word, yet when I arrived to pick him up. He was in a conservation, discussing the Big Bang theory!
We go to our local PSP meetings. S doesn't seem to mind see the other fellow sufferers. I struggle occasionally. But the ability to talk to fellow carers, face to face, who know EXACTLY what you are going through, out weighs any discomfort. For S, I think, just seeing someone else, who has this evil disease, stops him feeling such a freak. I keep saying, do you want to go, he always replies, we have to support the group! Mostly, we just sit around chatting. Advice is shared, so you could pick up some valuable information, that would really help! S would have been horrified about going to the hospice, but because it was discussed at a meeting, he thought it was a good idea! What have you got to lose? If it makes you both feel too uncomfortable, don't go again! I see people with PSP in various states, equally, you see fellow carers COPING!!!! Good lesson!
Thanks Heady, GP has rung the hospice to set up the referral so waiting for them to call me now. Dog is in kennels as going to Leeds this weekend for an outdoor concert. Managed to get Malc into town to choose and buy his own clothes for a change. He didn't want to stay out for lunch so spoilt ourselves with some lovely M & S foods. Got disability help with everything at both the departure (Taunton) and arrival stations so that is a weight off my mind, not sure how am going to keep him sitting for 4 hours but hey its time away and new scenery and am catching up with my bro (after not seeing for 6 years),
Jane called earlier this week to tell me about a family day in Bristol in November so am going to that too. Best Gill x
Oh Heady, you give us all such good advice and yet it can still happen to you !
Glad you enjoyed your brief break, I am planning a week`s respite for P very soon but things are so bad here that I think I am going to have to `bite the bullet` and look for a care home permanently.
I think of this as defeat because I am the `coper`; I deal with everything and carry on because I always have, but like all of us, there comes a time when it is not possible any more.
I am dreading the day that he leaves home for the last time, knowing he will not be coming home again. We have lived in this house for 48 years so it is not the same when he isn`t here, however I know that day is coming soon.
I think of myself as a duck - calm on the surface but paddling madly underneath just to stay afloat !
Hi NanBabs, your duck on calm water is so right, except I am going around in circles!!!
I am so sorry, you feel that your husband now has to go into a care home. You definitely HAVE NOT FAILED!!!! Your love and care has kept him at home, much longer than if he lived alone! Probably by some years!!! There will come a time that we all will have to admit that we have reached the end of our ability to carry on. Think of all the extra help, equipment that is available in these homes.. How on earth do we think, we can match that! Looking after our loved ones is a 24/7 job. Think what the Health and Safety Police, would say, if our doctors or nurses did even half those hours. Yet it is OK, for us to do carry out care by ourselves.
I know you said that you were going to take a week's respite. If finding a good place for P, is going to take time.. Please take that break, you need to keep calm and have the strength to make the decision. That will not be possible if you are tired and stressed.
Thank you for your support. I am feeling better, still very tired. Slowly realising, that I can't do everything. Life is different now, I spend so much effort trying to keep it normal. I have to accept it is impossible, I have to find something else in my life. Don't know what, but something for me. Joining the local gym again this week. Not the answer, but it's a start!
Sending you lots of love and big hugs, you are going to need everyone you can get, over the next few weeks. Don't forget we are all here for you.
hi heady you make a lot of sense matey please take care wont you
peter njones queensland Australia psp person and after sunday nights episode of the milk jug and going through the plantation shutters ther blokes coming tomorrow to tell me how much to fix things up for me
normaly I would have done it myself but psp stops me doing them now
I feel I have lost my confidence and after being on stage doing what I was doing I cant even hold a proper conversation with anyone even my own family and I love them dearly but they all understand peter jones queensland Australia unfortunately a psp sufferer
Heady, so right we have to look after ourselves so we can care for our partners. I hope you can relax and get back on the "horse" and be better able to support your partner. Best wishes Tim
Hi heady , I think we all know where your coming from its very tough my mum was only diagnosed 10 months before she died it was very quick deteriation heart wrenching emotional journey it about killed me I was worn out , I nursed mum till she passed away in her own home and watched as she took her last breaths the same as she watched me take my first, miss mum so much and worry about my youngest brother as he struggles with life without her. Thinking about you all on the psp site even though its been just over a year ago we lost my mum I still read all the messages every day on here. Take care of yourselves and if you can get time out xx
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