It's too Hard

I don't think I will manage another respite break - don't get me wrong I enjoyed every moment I spent with my daughter Kate but its the coming back I can't cope with .I have been a emotional wreck since I got home and am finding it just too hard . I returned to find this fragile looking woman slumped in her chair drooling out of the corner of her mouth, incoherent ,doubly incontinent, unable to swallow properly , staring vacantly into space with a white catheter tap peeping out of the bottom of her trousers. This is my wife of nearly 50 years whom I have known since I was 16 .I was confronted by the awfulness of the situation full on . Somehow when I deal with it on a daily basis I can cope with it . Yes of course I notice changes but as each one creeps up on you you learn to deal with it but by stepping back and then coming back in and looking at it with fresh eyes it is like being run over by an express train .

It came home to me even more vividly when our hospice palliative nurse phoned up to see how I had got on and how V had managed with carers 24 hours a day . She said it must have been good for me to realise there was a normal life out there and to take part in it . My first thought was to say "yes" but actually I felt the opposite . I thought my normal life isn't that one , my normal life is getting up at 6.45 emptying V's night catheter bag , rolling her onto her sling and hoisting her into her chair , making her a cup of thickened coffee and feeding her a teaspoonful at a time and praying she won't either sneeze or choke as I do it . My normal life is getting her , her crushed mandarins for breakfast , watching breakfast TV and trying to explain to her what is going on in the world , choosing what to dress her in and getting it ready for the carers arrival at 9 . My normal life is trying desperately to think what on earth I can give her for lunch and supper and have I got enough jaffa cakes in the cupboard as that is all she will eat sometimes. My normal life is seeing if today if she has enough strength to suck on a straw or will I be feeding her jelly so she gets enough fluid in her . My normal life is an all in wrestling match to try to get her puffa jacket on so we can go out in her wheel chair rather than sitting in all day with me trying to think how I can converse with someone who ha s more or less lost the ability to talk . I don't have to go on because your normal lives are much like mine . So people out there , don't tell me what" normal "is , I know what it is because that's my life for the last three years .

I also know what I can cope with and what I can't cope with so despite all the urgings from social workers ,my well meaning sister , hospice nurses , district nurses , friends -I shall be staying put because that's what I want to do . Of course there will be hard days and difficult days , and sometimes despairing days but for me those are more or less manageable . But coming back to face reality full on is something I can't manage . Perhaps I am a coward but I don't care if it means I can get by and look after V , after all its her who is in the worst position , not me .

40 Replies

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  • Oh George I feel like that when I come back, and now my week away seems like I never had it, George cried for me when I went away, wouldn't we love to take our loved ones with us? To live the life that we had mapped out while we were growing old together? To me that is the sad thing about PSP it just takes everything away, in such an unfair way.

    George just try it once more, it does get easier, you can laugh and feel free for a while, and come home recharged and ready to fight the good fight.

    I am going away with my sister in law in May, I am really looking forward to going, my lovely brother is going to stay with George, I am so lucky he does this for me.

    George you must do what you feel is best only you can make that choice. Yvonne xxxx

  • Oh Georgepa, I think I know exactly how you feel and that is the reason I declined all further offers of respite despite numerous professionals, family members, friends, telling me I needed it. It was me doing the caring and I knew what I needed and definitely didn't need. Colin took a dive on the 3 occasions he went away and on the 3rd occasion, even though I took him out of the home near our son's every day and took him back at night, he was so much more hard work when I got him home, or rather, I had difficulty dealing with what I had to. I knew if he went away again, I wouldn't be able to cope getting him back. It was hard getting back to my normality and I knew I wouldn't want to if I had my freedom for a week or two. I never had a real break either as the first respite was at an hours notice and I went and saw him every day, the 2nd was because I hurt my back and the 3rd was a place just to sleep near our son's. I know V stayed at home but you still got out of that routine and saw what life should be like.

    I did, however, make sure I had several hours a week to myself with the help of Crossroads and the Hospice and paid a sitter so I could go out twice a month in the evening. OK I was clockwatching all the time but all the while I could stick to the routine I could cope...just about. For some folks respite away works well, for me it definitely didn't.

    Please try and get enough free hours during the week. We all need time to ourselves to do things we like doing and there are ways of doing them but we have to find them, not wait for others to supply the answers...it would be a long wait.

    You are in my thoughts Georgepa. What you are both going through now won't be forever. The thought of losing a loved one is so hard but nothing and no one lasts forever. One day you will have a new routine or maybe like me, no routine, so I pray you can hang on in there, loving and caring for your dear V so when the time comes you can once again live knowing you have done everything you possibly could for your darling.

    Sending you a big hug Georgepa.

    XxxX

  • Definitely NOT a coward, George! You are a FIGHTER like all on this site!

    Our problem is what to do with ourselves when we get "let out". Our comfort zone is dealing with what we have to do daily and the " outside world" becomes foreign. Must be what a combatant feels when he has to leave the battle zone, and take a break in a peaceful world!

    Try to find 1 thing you can do at home while carers are there. Maybe only in garden! I had no idea weeding could be so therapeutic! And you are outside too! Try!

    Hugs

    Jen xxx

  • Bless you George you are an absolute saint but you do need an occasional hour or two to yourself, please do it to keep your sanity!

    Hugs....Pat xx

  • Oh my, I admire all of you! You have stood by your vows you made many years ago with love and compassion! This world needs more people like all of you! God bless you all! I pray daily for the strength I need to be all my husband will need! What awaits me scares me. But if you have found the strength then maybe I can too! Love to you all for what you do each day!

    Wanda

  • Oh George it is a horrible illness and we all cope in our own way. Don't let anyone tell you what to do. If you are like me when you are away from your loved one you worry even more.

    Stay strong sending you love and hugs.

    Tillyhugs

  • This world of care giving is our normal...to plunge a person into doing our job for a week and then yanking them back into their minimal care giving routine would be cruel to them...how do others believe that the same is not true for us. My hospice nurse kept telling me to get respite. I kept telling her I was not ready to "drop him off" she assured me I could staywith B as long as I like...I would be more exhausted hanging around in a hospice than doing hopice work at home....and to think of my young husband there watching people die or grieve or just be old and alone.....I could not do that to him....all that is a mute point as now he eeks closer to death's door.

    I have read the other posts and though people all share your same sentiment, they also understand the value of a respite. Perhaps taking shorter respites , if you can, may be more in line to what both you and V need. I do like NannaB's philosophy of maintaining some outside connection to the world on ones own than to wait for others to offer or even mandate a break..

    good luck GP

    AVB

  • George you have voiced my thoughts exactly... I knew Brian would fret for me and I have seen how it affects a lot of people.

    If you live with something on a daily basis you get so used to the situation that you don't realise how things really are.

    I thought Brian looked OK but the last time I took him to the bowling club someone said to me that he looked very frail now.... as I looked across at him and saw him through her eyes and he did look very frail....

    Just make sure you get enough rest and a bit of time for yourself and you will adapt and plod on.

    I got so used to the routine and being needed that I started to flounder here on my own.... so I went out and got a puppy.... back to dealing with wee and poo and routine. He is such a baby that we have only been allowed out for walks for a week.

    Lots of love to you both Jane xx

  • Sending you massive hugs and I can empathise with what you are feeling as even though I have not had a respite break of a long duration my thoughts have always been I don't think I could deal with the after affects. We are all different and must do what is best for us and not what everyone tries to advise. No one can really know the shoes you are in unless they are going through or have gone through it.

    Like others have said get a few hours a week to yourself in to try to relax and have time to yourself.

    Xx

  • Hi George's

    I know how you feel, it won't take long for you to get back into the swing of things, and then you will have positive thoughts only on your trip away.

    I went away just overnight a month ago, to meet with my sisters in London, I didn't stop crying for 2 days when I came back to this crappy illness, but I soon accepted it again, now trying to plan another overnighter with them in a couple of months and looking forward to it, helping to keep me going.

    Lots of love and hugs

    H xx

  • I know were your coming from I didnt take respite cause I couldnt leave him, when did get away for a while I spent the time fretting about him. Hes in a nursing home now always being told to take more time off but thats easier said than done. Dont know what to do with myself when I do after 62 years its like a part of me is missing.xxx

  • Hi George

    So eloquently put this life we are all leading. I understand your rationale, but you must keep yourself well, I have short frequent respite which may work for you, but when away I always think Rog would love this.

    Strength to you

    Julie x

  • Holding you both in my heart, you do what is right for you xxxx

  • Oh dear George my heart bleeds for you after reading this post. I haven't had a respite break and am desperate to get to Bristol to be with my grandchildren for a few days but it isn't possible for Ben to go because the house layout. People say to stay in a hotel but what use is that as we could only meet with the family in some place with disabled amenities but what about the rest of the time and all of the caring that needs to be done. I want to be with the children,, playing in their home, putting them to bed and then sitting down around the dinner table enjoying adult time over a glass of wine. It feels such a dilemma as I know Ben also wants to be with them but it just seems an impossible situation. Lots of people keep urging me to take a break but being an over thinker I am imagining all of the things you have so eloquently put in writing might happen upon my return and not sure I could deal with it but I think I will have to give it a try. It seems such a personal experience and people seem to cope in different ways, bless you for writing this and being so honest about your feelings.

    Love and a big hug

    Kate xx

  • Hi Kate, you do get CHC funding don't you?

    If so, try asking for them to put Ben up in a nursing home near your family for a week. I did with Steve. We went to Paignton, where my daughter lives. There was no way we could get Steve anywhere near her home, very steep hills! So he went into a nursing home, very close by. We were able to take him out loads, as Karen was there to help. Even got him to the theatre. It was brilliant. Felt like I got my husband back for a week. I got the good bits for a change, because the home was doing all the caring. He thoroughly enjoyed it, as the staff appreciated what was going on and made a huge fuss of him, getting him ready for a date with his wife. When we got home, there was very little of what George was describing, as we both felt we had been away together.

    I know it's the wrong side of Bristol for you, but the home in Portishead, that Steve regularly went, you can actually book respite weeks, which helps with planning.

    Ask, I know NannaB has done this as well, so it's not uncommon.

    Lots of love

    Anne

  • Thanks for the info Anne, Ben doesn't get funding yet, just starting the process. His walking and eye problems have taken a real dip over the last few weeks so getting harder to manage now. I will look into the idea of a nursing home, I'll look at the geography of the one you mentioned as wouldn't like to leave him somewhere I don't trust. I am now looking into more suitable vehicle for electric wheelchair as pushing up and down hills is playing havoc with my back and as you know Bristol is pretty hilly too so need that sorted before I can book anywhere. Our drive has just been made wheelchair friendly, looks lovely and not that look that often shouts 'disabled person lives here' things are moving at a fast rate at the moment, just wish it would slow down so that I have time to sort things out. Thanks again Anne, it's so good to get the support from the lovely people on this site, maybe if I get down to Bristol soon we. An meet up for a coffee somewhere.

    Love Kate xxx

  • That would be lovely.

    Lots of love

    Anne

  • What a wonderful idea!

  • George you are wonderful and I understand caring becomes normal. My husband is going into respite this week. Feel so guilty but I know I need it more than him. All my family say to me why not go away on a holiday, they dont understand who do I go with its so hard. Next week I will do nothing but think about him the whole week, but I am having friends up one night and I can stroll around the shops and not be on call all the time. This disease takes so much away from everyone involved with PSP. Good luck and take care. x

  • Darling George what you feel is "normal"! To go away for a few days and see everyone else getting on with their "normal" lives and then returning must have smacked you right in the face and for that I'm very sorry! I therefore completely understand that you have decided to stay put and care for V, your darling wife! Anyone who has been married as long as you would feel the same! I know 110% mum and I couldn't leave Dad and go away, the worry would be way too much! And then the guilt upon our return would be monsterous! How do I know this, because on respite days, we do often pop out for between 1 to 3 hours and the whole time we are worrying! My mum and dad have been married 50 years this year and their love for each other is simply incredible! I totally agree with you that our dear Psp patients have it a million trillion times harder than us! And I feel, personally, its mine and Mums duty to look after my Dad and you know I moan (regularly) but that's my Dad I'm talking about and he deserves all our care and love, after all he has ALWAYS looked after us! So George, darling, what I'm saying is, I get you! And you will cope, because you are made of strong stuff my friend! Hugs x

  • 💗 sending love and best wishes to you both George xx a beautifully written, sad and accurate description of life with PSP xx

  • Well put, George. I really identify with all you have said. It all sounds so tragic, seeing it written down.

    I have thought how I now find it impossible to feel free when with friends who I happily socialised with pre-PSP.

    I found it hard coming back after respite.

    I hope you find a way of having some time for yourself although it seems vital that you are able to have precious time with V whilst you can.

    big hug from Jean x

  • I came to the same conclusion and found having Margaret’s friends round so that I could get out for a couple of hours/pints worked far better for me. We all have to find some way to manage this almost intolerable situation and remain functional. For me it was several short spells of normality, knowing Margaret was with long-term friends whose company she clearly enjoyed. For others a longer break is necessary to deal with the mounting pressures and cope with the nightmare that is PSP. Whatever works has to be good.

    You rightly point out how much worse it is for one’s loved one, their enforced ‘normal’ has no respite, and such choices they can make gradually diminish.

    If there is an ‘upside’ to this awful disease it is the friendship and support you each offer one another on this site, without it I would never have known the courageous humour of Peter Jones, the down to earth common sense of NannaB or your word pictures, to name but a few.

    Kind regards Georgepa and to all you ‘carers’ and ‘cared for’.

  • Hi George, I remember that feeling only too well. All I can say is, it did get better. I was able to prepare myself for the dreadful week after my respite. There are two factors at play here. The mental one and the physical side. Nothing can help the mental anguish we all have/had every minute of every day. But respite can and does help the physical exhaustion.

    Sending you very large hug and much love

    Lots of love

    Anne

  • Thanks Anne,there was no problem with going away , I was totally confident V was in good hands and I certainly wasn't fretting or anything like that -its the "stop -start" which is beyond me and the awful facng up to reality on return .I shall just plod on taking each day as it comes and taking the odd bit of time out here and there as it is available .But thanks everyone for the lovely posts.I may be a bit down but I am not out ! :-)

  • Don't think there is any happy endings where PSP is concerned. George you are doing so brilliantly, I never got to be in your shoes, don't know how I feel about that, good that F didn't get to that stage or Sad he's not here, and sorry for myself that as he went suddenly I've have so much to deal with, as I said no happy endings for any of us

    Debbie x

  • No Debbie you are right -no happy endings just endings which each of us will have to deal with in our own way .I hope you will evetually find some peace .

  • So perfectly worded. It is easier for me to be immersed in caregiver "normal" than try to live in both worlds. Sending a warm hug.

  • I agree g.pa

    but my partner (of 10 years only) will not consider any rrepitte des pits his physical and emotional needs!

    so we plod on...

    i m SITLL UP ALL DAY ADN ENJOYING LIFE AS MUCH AS POSS BUT ITS IDFFUCICLT BEUINGSO DEPENDANT ON OTHER S FOR EVEYRTHING!!

    LOL JILL

    CXXXXXX

  • Jill it must be so hard for you.Being dependent on someone else for everything must be enormously frustrating .But good on you girl for keeping on going and enjoying life .I am full of admiration for you.As for your partner let him find his own path and don't worry .

    Love Georgepa

  • My heart goes out to you Georgepa. Do it your way, but please take a little time out, even if it is just sitting in your lovely garden with a cuppa and taking in the scent or the view. Sending you a big hug. Nanny857 xx

  • Don't worry I will .With our CHC funding I get eight hours a week and I am going to try to convert the 4 weeks respite care they set aside into days for me at odd times when I feel the need although that will depend on carer availability .I did phone the CHC nurse last week but surprise surprise she was not in the office but I was promised a return call - stil wiaiting !

  • I think thats a good compromise. I organise the same, although we don't have CHC.

    Its worth it.

    Jean x

  • Really loved your thoughts. Totally agree with you.

  • This is the first time I'm writing a comment, moved to tears as I was by reading George 's post. I can imagine so well how you must have felt when coming back to the same 'normal' situation . But still I think you should go, even only a for a few hours per week,you need to breathe, and I am sure your wife would agree. I would, and I am a PSP sufferer as well , I wish I could push my husband to do something for himself , like meeting old friends for lunch .but he says he 's afraid that I would fall, which i do anyway, even when he is around...

    I am not bedbound yet, I can still move around, but always with my husband, who is such a dear, but I have sometimes the feeling that he wants to control my life too much. Still I should consider myself lucky. I wish you and your wife all the best, and hope for some peace for both of you.

    Je vous embrasse tres fort, ( I live In france)

    Anne

  • How lovely to have a French hug Je vous embrasse aussi . Is that right ? I hope so my French is a bit rusty but now I can practice on you . Yes I will be getting some time out but not in blocks . I am sure your husband means well and I remember infuriating my wife when she was falling by hovering around her in anticipation . It is very difficult for both of you- I understand where you are coming from but I can also see how he feels .

    All the best Georgepa

    By the way where in France are you ? We used to travel a lot in France in a past life and I have always loved it as a country .

  • We live just outside paris,near Versailles and st.germain en laye, if that means anything to you, we live in the countryside, right next to the woods,and we have regular deer visitors and the occasional boar ! You wouldn't believe that we are only 35 km away from the centres of Paris this is the one reason why we haven't moved yet to an apartment or a bungalow, we would never find similar surroundings, eventhough I keep on falling in our garden,because we live on a hill, and nowhere there seems to anything flat in our garden.. so we 'll see how long we can maintain the status quo.

    Anyway, don't forget to take care of yourself as well , je vous embrasse tous les deux ( your french is perfectly correct, by the way!)

    anne

  • I sounds a lovely place to live - I have yet to get to Versailles - one day perhaps . I shouldn't worry too much about finding somewhere flat - I am afraid it won't make a lot of difference with regard to your falls , flat or not - just take care . Keep an eye on this site -it is full of useful information and you will get a lot of support . Dormez bien

    Georgepa

  • Thank you, you've made my day, by saying it doesn't make much difference whether you live on a flat surface or on a hill. That means I don't have to move yet. I 'll tell my children that! And besides , it s true, I fall so many times in my house,in the kitchen or wherever and I can assure you that those floors aren't tilted in any way...

    Thanks again, Georgepa

    Anne

  • We live in a house - when V could no longer use the stairs we converted our sitting room into a bed sitting room and managed to set up a wet room downstairs too . We have a portable ramp for the front door and a small motor which is attached to the rear of the wheel chair so we can sail up hill and down dale - well within reason .I take V out every day weather permitting and usually twice a day .I have to admit it is getting more difficult now but still possible . So if you love your house and where you live stick with it and look at the possibilities . My only advice would be to plan more than one step ahead as things take time to organise and sometimes PSP doesn't stick to time schedules .

    Georgepere ?

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