Giving up

Oh god I'm tired and apologise now in advance!!

When, if ever do you say enough is enough?

I mean the awful question of a care home possibility?

What happens when you can no longer lift? Assist with getting up and out of the chair?

Up and out of bed?

On and off the toilet?

Crikey and I think this is only the beginning..........?!

I literally am wondering how we are gonna cope?

I feel sick to the stomach asking this but I need some advise pleeeeeeease!


28 Replies

  • I suppose, if you are still able to ask the question, you are still capable!!! I am positive, when you get to the situation of not being able to cope anymore, you WILL know and the decision will be easy! Of course, there is the grey area, when you DONT WANT to cope anymore. That's when things get hard, guilt kicks in etc! Only you can answer that one. There is no rule about how long you look after your loved one, no rule that's says you HAVE to do it until the end! I have already come to terms with the fact, S will have to go into a home at some stage, because I know I won't be able to cope, come the end. When that day comes? who knows, I just hope I will recognise it, when it arrives.

    The practical side, what help are you getting? Where are you in the world, what services does your government provide? If in the UK, are you in touch with Social Services? Get all the help you can, it might just make the difference, of you been able to carry on for another few months!

    What ever decision you make, the most important person, is the one in the mirror! If you can get that approval, for which ever way you want to go, that's the person you need to listen to! Your loved one will be fine, either way!!!

    Sending you lots of love and a huge hug!

    Lots of love


  • Thank Heady

    Yes in the uk

    Will contact social services

    Totally get what your saying, so thx u!!!!!! ❤️

  • Hi, I've just been going over your posts and boy are you having it rough. I really feel for you. Heady's post is spot on, the only thing I would add is contact your Specialist Care Advisor as they might be able to assist you.

    I have worked with families who have had their loved ones admitted to a care home because they know they can no longer continue to care for them 24/7, their own health is being affected but it still doesn't stop them feeling guilty. If it does comes to this you know you have done your best and you can't do more than that. Sending you my biggest hug, take care. xx

  • Thx u nanny

    I think sometimes everything just builds up til you feel like your going mad!

    As always all advice much appreciated


  • I know that feeling too as I'm sure most on this site do, but we can't scream here and no one will object. Take care, Nanny xx.

  • I am so sorry I do not know what the end looks like either and I almost think even if it was staring me in the face with a sign on it saying THE END I am sure I would go around it and not let aunt bev go. It is hard I know with out a dought that Aunt Bev would be in a home and then she would see the end. If you have family just hope that someone is strong enough to help even though I lack patience I am bull headed and when I set my my mind up I go for it. I would start searching around for a place that is alive, not one with people sitting in the halls alone , a place where you have someone watching over and checking on you not where you are left alone with only your thoughts When my aunt had to go to a rehab place like a retirement home I made my mind up right then and there if ever I was unable to take care of her I would not let her go in a place like that go to them check it out see what they do with their patience see how they treat them make sure they are treated as if they your own parents and how you would want to to be cared for some places are just a paycheck in and out with out really caring about the person laying helpless in front of them. I wish I could snap my fingers and change PSP I only hope you have someone that cares for you and loves you with all their heart, there is no right answer for your questions, just know if they dont come up with a cure is a progressive desease and is very mean,and ugly. Try to plan ahead and know what is coming read peoples post all of them so you know what the end might look like my heart goes out to you and everyone else

    hugs kryste

  • Thx u kryste

    Huge thanks for your very sensible reply which I will take on board


  • HoiSts don't keep doing it and injuring yourself like me . Since I have had the hoists installed it has made it so much easier and after for both of us .

    Have you see the OT

  • Thx u

    Occ health keep saying we don't need a hoist yet! Of course they aren't here 24/7 as I am!

    I will try again to badger them for one as life is becoming far far to hard for dad

    Thx u x

  • We have all gone through the different stages , . Is it your father you are caring for . Do you live with him .

  • Yes and yes x

  • Is you dad able to stand at all or walk , .

    They won't give if he can weight bare , at least not the ceiling hoist , can he make it to th toilet .

    It was not unil we failed to do that even that we got them installed and even then it was op the one I had to push around and thy are too heavy for me .

    We now have too ceiling hoist my John is either in bed or his chair and cannot stand or move very much . Not done so for about two years .

    How old is your mum and dad .

  • Stands with a lot of difficulty and a lot of help!

    Walks very little, freezes, wobbles and falls!

    Mid 70's

    I need to look at these ceiling hoists

    It's all so much to think about, arrange etc does my head in somewhat


  • Very pertinent question for me at the moment - I have had to put P in a care home and although I knew it was inevitable, it did not and does not make me feel any better about it. I have cried more tears over the past 2 months than I have in the past 50 years !

    When the care company told me they had to withdraw care because of safety issues for them and P (they have been coming in for a year, getting P up, showered and dressed every morning), then I knew that I had to listen to what everyone had been telling me for months.

    I knew I had to make the decision and it was not easy (a bit of an understatement !) but although it has been tough for us both - especially when he says "take me home now" or "don`t go and leave me here" - it is truly heartbreaking.

    No words can comfort me even though I know I have the right thing for P. I feel failure, guilt, sorrow and even though I see him daily, I feel bereaved of our life together.

    My heart goes out to you but it is a decision you will make when you have to, the day will come and you will know you have to do it.


  • Sending you lots of love and big hugs!!!!

    Lots of love


  • Thanks Heady. I know he is safer and well cared for but it has been really tough.


  • Hi Nanbabs, at the end of the day, that's all any of us want or need, is to be safe and well cared for! You have achieved that, you might not be doing the full time caring anymore, but you have made sure your husband, is in the best hands possible for his needs. WELL DONE,!!!! Feel proud of yourself!

    Lots of love


  • My heart goes out to you!!

    You've said everything I've been thinking!!

    Words fail me really Psp is **** and I can only send you lots of love and thank you for sharing this hugely delicate and horrific subject, thank you x

  • Thank you. Although it has been hard, I know lots of other folks will be facing the same decision at some point.

    You`re right PSP is ***** !


  • I am so sorry for you NanBabs. I don't think I realized all this until now. Try to take comfort knowing that P is in a safer place. Worrying eats away life. Guilt also ages one faster than their years. Assure P that you will be back , that it is time for his special care. And when you must leave him reassure yourself you are providing him comfort and safety....two things that we, as caregivers, must give the ones we are caring for, even if outside of the home.

    I say all these things knowing I would/will feel exactly like you do when it's that time.


  • Thank you for your words of support, they are much appreciated. I know, deep down that it is right, but it has been SO hard !


  • NanBabs

    I know honey, I know....I will send you a hug...



  • Have you approached your local Council or Social Services for an assessment and help? Once professional carers are involved all the necessary equipment will become available as if by magic. One of the more useful aspects of health and safety legislation and an employers duty of care is that whilst you, as a private individual, can struggle and risk personal injury, as an employee there are laws against it. With the right equipment moving your father will be so much easier for you both. Be sure to let the assessors know about the progressive nature of the disease; the PSPA have a great deal of information available, in booklet form, for health professionals, many of whom have never heard of PSP.

    Regrettably sometimes you have to persevere to get the help you need but be assured you cannot manage this disease alone and without equipment.

    Very best wishes and please keep in touch with this site, someone may be able to help, and there will always be moral support and an occasional laugh.

    Kind regards,


  • Thx you Jerry

    All taken on board

    Big hugs


  • We have an OT who has Besn so supportive . Arranged everything we needed.

    they are inclined in the first place to try and keep th person as motivated an independent as possible . He isn't independent while leaning on yourself so much .

    wHen she came I told her give me the tools and I will dope ,

    It is so much easier now . I don't lift or hold / support anymore . I am 78 but they showed me what to do , how to use the hoists even change trousers while suspended .in th hoist .


    Though we have carers .they are note here when I need them so I do all the opgoisting then , whether into commode chair or bed.. Th hospital bed has a hoist over so has his chair .

    Don't know how he manages toileting but if that's a problem ask about the sheath and bag . There are numerous AIDS ..

    My husband isn't incontinent but not being able to get out of chair and stand . Became so helpful at night or if I went out . .

    Hope this has helped . John is much worse now but having these items in place make mine and his life easier .

  • You can google mobile ceiling hoists , they are not attached to walls or ceiling . They are intrusive and I have had to get rid of some furniture , better than getting rid of John though .

  • My friends are always saying things like, "You know it's only going to get worse," or "what in the world are you going to do." And, what if this, or what if that...worrying so much about what might (or might not) happen can really sap your strength and make you depressed and crazy. There is so much to do and take care of right now, let's concentrate on what you can do. With one half -closed eye on the future, we take one day at a time. It's getting harder, but that "one day at a time"thing has worked to keep us terror free for five years, and we've managed to have a lot of fun amid the ruins!

  • God bless you that's exactly the own preacher told me I should put B in the nursing home.......I was so mad ..... Sometimes that's what you HAVE to do.......I don't know, i guess I was hoping for more support,,,,It's hard to be the outside one looking in and give the wise support the caregiver needs. I really like what you said I wold like you to put that post somewhere else so everyone can read it...Maybe at the party....Hey did we already have that party??????

You may also like...