To all sons & daughters of PSP sufferers

As you will know from my Dad, Georgepa's post we have had an exceptionally horrible couple of weeks as my wonderful Mum V enters what appears to be the final stages of PSP.

As Dad described - what a rollercoaster ride it has been, truly awful for my poor Mum and equally awful for my lovely Dad. As their daughter, it has been 2 weeks of adrenalin, anxiety, huge sadness and this horrible feeling of limbo.

Obviously when Mum went back into the Hospice, my husband and I went down to Devon a 4 hour hour car journey, not knowing what to expect and whether we'd even make it in time. Mum came home and we spent several days sitting around her, with her, some days she was "present" other days she really wasnt.

Thankfully Dad and I have been honest with each other from the start of this horrible illness and we decided that Guy & I should come home, what could we actually do? Yes, make endless cups of tea, cook food no-one really wants to eat, be company and support for each other but ultimately it felt like we were sitting around waiting for her to die and that wasn't how we wanted it.

So as a daughter, you then come home filled with guilt (unnecessary guilt I hasten to add) you jump every time the phone rings, you get up in the middle of the night to check all your phones incase for some inexplicable reason they decide to stop working. You simultaneously cheer every time you call home and get to hear your Mums voice but then come off the phone & sob because it might be the last time you ever hear it. You don't make any plans in case your needed at the drop of a hat. Then you wonder if you should be putting your life on hold?

Do you let people know what's going on? Do you wait until you know "this is it?" How do you answer the questions "how's your Mum doing?"

As a self employed Life Coach, I've re-scheduled my clients - how can I be inspirational, motivational and generally upbeat when you're listening out for the phone and when their problems seem like minor irritations compared to what you're going through? Do I book work back in only to cancel it to race down to Devon?

All these questions go through your head constantly as a daughter living too far away right now. All I really want to do is be with my Dad, to hug him, to tell my Mum I love her as much as I can but there have been so many people at home, all doing wonderful jobs of caring for my Mum that it just feels too crowded, the wrong thing to do, she'd hate it. The truth is Mum and Dad need some time together and I really want them to have that but what is best? What is right? Where's the sodding hand book that tells you how to deal with this?

I don't know any of the answers, Guy and I will be going back to Devon in the next couple of days unless we're needed sooner. I'll hug Dad, tell Mum I love her and take one day at a time because that is all I can do, all any of us can do.

So to all sons & daughters out there, I feel your pain, your helplessness, your huge sadness at losing a parent. If you're a long way away, don't beat yourself up, do what you can, you can only do what you can manage and I'm sure you're doing your best!

21 Replies

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  • A very heart felt post Kate. You are right, you can't be there all the time and there should be no guilt around that. Yes, your Mum and Dad need you, but again, you are right, they need time together on their own, even more.

    All you can do, is what you are doing. We all know that never seems enough, but what else is there to do???? Let the tears flow Kate.

    Sending big hug and much love

    Lots of love

    Anne

  • I agreeanne

    lol jill

    zxxxxxxx

  • I'm thinking of you all Kate, it's such a horrible situation you find yourself in and my heart goes out to you. I'm sure you're doing your absolute best for your Mum and Dad and they will know that, as for the feelings of guilt they're perfectly normal and I think we beat ourselves up with feeling guilty and thinking "Maybe I should have done this or that and if only I could have done more?" I know I still have those feelings but please Kate you're already doing a lot more than most would.

    I wish I could say something to make you feel better but the truth is I can't, it's an awful, cruel disease that robs the sufferer and their family of everything!

    Stay strong Kate, sending you a great big hug....

    Love Pat xx

  • Thank you Pat xx

  • This post really hit home Kate as we had our son and his family down at the weekend and had a lovely time with the grandchildren, it wore Ben out and he's been sleeping for most of the time since they left. My son broke down for the first time in front of me and says he feels helpless as he needs to work to keep his young family going, he can't just take time off willy nilly and take the long drive to us at the drop of a hat. I know he will be there when we really need him but until that time visits every 2 to 3 months have to do. I know your mum is further down the road and that must change everything. I send you and your dad my love and support at a very difficult time.

    Kate xxx

  • Thank you Kate, it's a tough juggling act, I feel for your son and totally understand his dilemma - we are all doing what we can to cope with this terrible illness xx

  • Hi Kate, as we knew when my darling was nearing the end because he was having no food or water, my sons all came for varying lengths of time and it was good for me having them around. Our middle son had stayed for three nights and said he had to go home for a short while. He only lives just over an hour away. I told him to go and he kissed his dad goodbye. As soon as he left, I sat down with C and, after 3 nights of no sleep, dropped off immediately. I awoke 75 minutes later to find C had gone. I phoned my son as he was entering his house. I think somehow C waited until all was quiet and I was asleep so after 11 days of being constantly watched, day and night, he slipped away quietly with me asleep by his side, my hand on his arm.

    Every time you leave your mum and dad, you say goodbye and know you may not see your mum again but you can't put your life on hold, even if you would like to. My 3 sons all wanted to be there when their dad left them but they have work, wives and families. C knew he was loved, as your mum does, and I think that is more important than being with them all the time. I think C wanted to spare us all and almost chose to go during that quiet time.

    Nothing anyone says can take away what you are feeling now.

    Sending you all a great big hug.

    XxxX

  • NannaB, you are so right....I'm convinced that Mum will wait for me NOT to be there - she's always done everything her way and she will do that now and I love her for that. Thank you for the hug xxx

  • Kate your post was so sad, we have lost so many people lately. I agree with what everyone is saying, live your life, I am sure your sweet mum would want you to do that. Just can't find the words to say. Sending you a big hug . Yvonne xxx

  • Thank you Yvonne - everyone on here has been so kind. My Mum definitely wouldn't want me to put life on hold but at the same time, this time is precious so I will try and have as much time as I can with her xxx

  • Kate you sound like the perfect daughter, I bet your mum was so proud of you and still is, I know your dad is, big hugs Kate stay strong xxxxx

  • Everything you say resonates with me. I have recently been on the long distance watch, too, although not with psp. I think your responses to the situation are wise and sensitive. Your parents raised a lovely daughter. Hang on. Love, ec

  • Thank you for your lovely words - I have been exceptionally lucky as a daughter and continue to be so which is why this time is so important to me x

  • Kate, I am looking after my dad, recently diagnosed with PSP. I can relate to a lot of your post, I feel the guilt just having the days off that I do, I know I couldn't cope without a bit of space but then I feel selfish as he's still stuck in the same situation whilst I'm having a life. Guilt is a waste energy but it's often unavoidable. I'm new to all this but I know its not going to be easy.

    Thankyou for such an honest post

    Sue x

  • Sue, this is a horrible journey for both the sufferer of PSP and those who love and care for them, there is no getting away from that however, everyone on this site (amazing people that they are) will tell you that you have to take care of yourself when you can - it's vital. You're not being selfish, you have to keep going so do whatever you can to make that happen. Thinking of you too xx

  • Oh my what a post. That really struck at the heart strings. There is no right or wrong way, we all can only do out best with what our situation is. We care so much so I think that leads to feeling guilty as we want to do more.

    As someone else wrote on another post we are only human and our loved ones know we love them deeply. Your words show how much you care as you are thinking of your parents as well as yourself in what's best.

    Hugsx

  • Thank you for the hugs - I'm very lucky to have the Mum and the Dad that I have, that's why I want and need to be there for them x

  • Guilt is corrosive, try not to go there. I look after my husband who has PSP and , as anyone who is in the same position knows , the situation is riddled with guilt. I also have a 95 year old mother, who lives alone , 40 minutes drive away. As I have been having blackouts, I haven't driven there since last year, but rely on my daughter and her husband making a detour to pick her up when they visit from the south. Like you, when the phone rings, I fear the worst. Someone said here that you can only do your best. You have the added stress of work. I think you are a marvellous daughter, who shows such compassion and love. Look at the good things you do. Push that unnecessary guilt into a cupboard in your mind and lock the door on it. It has no place in your life, you have enough to deal with without that too.

    Big hug. X

  • Thank you, what lovely words! I just want to do what I can for two of the most important people in my life....guilt is going in that cupboard (love that image) and the door will be locked xx

  • Good for you.( And don't forget to throw away the key!) X

  • I was in exactly your situation with my parents. They were in Yorkshire. I was in London. When to go - no one knows. If only we had hind sight.

    The truth is that both your parents know how much you love them. We never feel we have told them enough, do we ?

    Ditch the guilt.You can only do what seems the best decision at the time.

    Your dad will need you later. Your mum sounds like a wonderful person to have inspired such love.

    Big hug, Kate , from Jean xx

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