Carers and Respite - very important!!

Dear All

As many of you know we have crashed as my mum was taken into hospital on Tuesday (out of the blue) had emergency major surgery and is obviously now very unwell with a long road to recovery

I'm now in the heartbreaking process of placing my dad into a nursing home

Listen up!!

Don't make the mistakes we made!

Don't think you can do everything and don't try!

Get help in now! Organise it! Don't delay!

Do whatever you have to do to get that help!

Get your Psp patient into the hospice initially for respite for a minimum of one week if you can or find a nursing home for respite

Explain to your patients that respite is needed to avoid what's happened to us!

Don't take no for an answer as we did with dad when we could have got him into the hospice a year ago, my dad refused!

I don't wish what's happened to us on any of you!!

There is no doubt whatsoever in my mind this has happened to my mum because of Psp!! I don't want it to happen to me either!!

So I'm literally begging each and everyone of you that hasn't had respite to do it now! Don't delay! If we had if done it and I'd listened properly to the likes of Heady we wouldn't be in this really awful situation!! The worst situation I have found myself in since my dad became ill is now and I can tell you it's literally killing me inside!

I love my dad dearly and my mum well she's my friend, so you get me now? Do you? If you do, and this helps at least one of you to do this I will feel that at least I've saved one of you!!

Much love

Amanda x

24 Replies

  • I know how you feel I have looked after DC.on my own for 8 years and haven't had any respite care. I have finally accepted carers coming in so this week has been pretty strange, I'm not used to having people coming into my home all the time. But the carers have all been lovely. The next step I guess will be some respite care.

    Stay strong you can only do what you can do! You sound as though you like me have done everything possible. Time for us to accept help. Just love your mum and dad as you do. I miss mine so very much.

    Love to you

    Tillyhugs 💕🤗

  • Bless you Tilly hugs

    I'm pleased you have the carers but remember this

    We have carers x2 four times a day plus night nurses to do a pad change plus 8 hours respite at home weekly n it still wasn't enough!! Get the respite for a week minimum if you can x

  • Oh Amanda, so sorry that you are having to make such heart breaking decisions. Your parents know how much you love them and are trying to do what's best for them in such a difficult situation.

    When my husband was diagnosed with PSP in August last year, we were referred to the Ellenor's for palliative care. We are so grateful for all the crevices that have become available to us. He attends the day centre one day a week and I have that time to myself to recharge my batteries.

    We have been offered support and advice and help when we need it. It is difficult to know what to expect from this horrible disease and you have not one parent to cope with but both parents.

    You have done and is still doing a wonderful job with your parents. My heart goes out to you and pray that God will give you the strength to cope. You are a blessing and ever loving daughter to your parents.

    We all appreciate your advice thank you very much. I am sending big hugs and much love to you. God Bless you for being such a caring and loving daughter. Estherxxx

  • Thank you Esther

    Please ensure you get loads of help! X

  • I'm so sorry this has happened to your mum Amanda and I agree with you that all carers need a break and as much help in the home as possible but sadly, respite doesn't work for everyone, it didn't for me or my darling who dipped drastically on the 3 occasions he was away from me, even though he saw me during the respite which was forced on me due to circumstances. It was obviously upsetting him to be away from me and he told me so and I found it very upsetting knowing how distressed he was. What I told him was that I needed a break and time to myself if he wanted me to survive and look after him. I then made sure I got it, getting away from the house to meet friends when I had a sitter twice a week and when he went to the Hospice day centre. I joined a water colour class, played/play darts at a local pub, learnt to play the ukulele and invited the group to practice in our home as I couldn't get to the practises, playing in a pub once a month in the evenings. I would pay for someone to sit with C 2 evenings a month so I could get out to play the uke and attend a wine appreciation group.

    For me, it was more important to have space every week rather than a week away. It was important to talk about other things than PSP. Now the friends I made when C was ill are keeping me going now he is no longer here. I rarely have a day at home alone, have already been to Budapest and am going to Ireland, Wales and Paris, all with people I didn't know before PSP started to change our lives so drastically. Most of my activities were through joining the U3A (UK) but this week I went to a knitting group I saw advertised. There is stuff to out there if you look for it.

    Amanda is so right in saying we need respite but don't beat yourself up if you don't want to leave your loved one, just try hard to get out there every week, do new things now, make new friends, invite old friends to your home so you don't lose touch. It made it so much easier for me to go home and cope with the horrors of PSP after having a good laugh with folk. The transition I had to make when my darling left me has been so much easier than for some others I know as I continued the activities I started when he became I'll. I didn't have to learn how to socialise again. The folk I met since PSP have now become close friends.

    We all have to find our own way. What is good for one person, doesn't work for another but I know that getting away, with time to do fun things is important for every carer. For me it was very regular short bursts of freedom, for others it will be a week away now and again.

    Love to you all.


  • NannaB you are simply amazing and an inspiration to us all x

  • Nanna B is so right.

    As with all things in life, listen to others advice but tune in to what will suit you best.

    Personally , I manage breaks by Chris going out twice a week to the hospice. I pay for a sitter another day. At present I manage alone but need a respite break every few months. Chris is fine with this, wanting to give me a break.

    I intend researching local Homes for the future if he needs somewhere and cannot get into hospice.

    There is no way you could have foreseen what happened to you.

    love from Jean xx

  • Thx Jean

    True we can't see into the future

    Reckon if we could we'd all jump ship! X

  • True.

    Can't change past, either !!!

    I'm a good swimmer - - -

  • Amanda such a good post, we don't realise until something like this happens, we think we are superwoman our superman, but you are absolutely right we all need a break, Anne told me a few times to look after myself, I took her advice, but feel I need to do it more often, some days I feel totally drained, headache after headache.

    Amanda so happy you have made your decision for your dad, it is hard, but you can visit him and your lovely mum, best of both worlds. You look after yourself as well.

    Sending you a big hug, thank you for your post, everyone listen to Amanda and have regular breaks, to be able to look after our loved ones. Big hugs to you all Yvonne xxxxx

  • Thx Yvonne I felt it my duty to you all to post this! X

  • Hi Amanda, I agree with everything you have said, bar one thing. What has happened to your Mum, probably would have happened anyway. The problem PSP added is, I suspect she ignored her symptoms for far too long. Felt the little niggles of pain, were trivial compared to your Dads illness.

    Us spouses have to remember that we are knocking on a bit as well and every one of us knows old age doesn't come alone! Stress and over tiredness can and does cause a lot of problems, as does not eating properly, lack of exercise and general lack of care.

    We all think we are Superperson, nobody can look after our loved like we do. I beg to differ, I had no training, didn't have a clue what to do or how to do it. When my children were born, we weren't allowed home, until I could change a nappy properly. A midwife came to the house daily for the first couple of week. A district nurse then took over, make regular visits to make sure I was coping and baby cared for. I was expected to attend visits to the baby clinic, for check ups. A doctor was always available to look at my child.

    Did any of this happen with Steve?????

    The carers that came into our house, all had excellent training, cared and loved Steve, they knew how to move him, without injuring themselves, could do all sorts of intimate tasks, in a professional manner. In the nursing home, there was always had to be two people to move him. So why did I think I was somehow above all that, better than them, knew more, just because I was his wife. He hated me doing personal things for him as much as I didn't want to. If it had been me, I think I would far rather have a professional Carer changing my pad, than Steve.

    So yes, I totally agree none of us take/took enough care of the most important person in our loved one's life, OUR SELVES!!!

    Get as much help as humanly possible. Get out, live life, so when the PSP journey comes to the end, there is still something in your life. Not a huge empty hole and no clue how to feel it, like me now.

    For now Amanda, I suggest once everything is in place, you go to bed and stay there for as long as it takes to get you back into a good place. You need sleep and lots of it!

    Sending big hug and much love


  • Heady you are absolutely adorable and your reply borders on perfection! Thx you x ❤

  • Who takes care of the caregivers... when the caregivers don't take care of themselves. Those of us with PSP need them to bring their "A" game each and every time. That fact was impressed upon my wife by the social worker very early on. I understood it then and I understand it now. As much as I always like to have my wife around , I know that she needs to have some respite... we all do. I know that it's difficult and sometimes seems nearly impossible, but if the patients are included in a respite conversation from the beginning and made to understand how important a break is, then it may not be so difficult when (not if) the need for respite arises. I know that this is more difficult than it sounds and there's no one size fits all answer. There is so much support and advice in this community to draw from, try to make it work for you. xx

  • Thx u darling x

  • I hope one of the nursing homes you are seeing will be suitable. I'm hoping the hospice will give me some respite care for john. Good luck today. Xx

  • Aww thank you Vron!! I'm hoping I get something sorted today and will be visiting Wray Comman so thx you darling, I'll let you know what happens! I'm sooooo tired!! Let me know how you get on with hospice

    Much love to you both x

  • I'm going there at 12,30 today Vron. They have space, take chc, and know all about Psp! 🙏 X

  • Very much agree, my weeks are booked for the year! It is hard but feel soooo much better when I get back. I also have my care in three hourly blocks per day, and I always go out, even if just for a nice long walk

    Things will get on an even keel I promise,

    Julie x

  • Aww thx Julie I do hope your right!!!!!! X

  • Amanda,

    I can only echo the other replies - you have done your very best for your Mum & Dad and that is all any of us can do. Now look after yourself.

    Hugs. xx

  • Thx you x

  • How are things today Amanda? Thinking of you.

    Sending big hug and much love

    Lots of love


  • Amanda I am rereading your posts....been sort of in a horrid situation myself ....darling being prepared cannot be understated can it.....Thank you. I hope someone listens who can still still create a good quality of life for themselves as well as their loved one.....



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