Stupid stupid question to dn's

Dn's just came in for night change, I asked them in their opinion with palative care patients (in private of course) how long this can go on for? Response = up to God, I ended up in floods of tears of tears (cringe) received cuddles, and one of em told me how much she loves me, bless her!! Sorry for ranting, just so fed up of dad having to put up with this shit, soooooo unfair, breaks my heart, that my dad, that was once the strong, man of the house, is now falling apart before my eyes, talking a lot of nonsense, and not the dad I knew, difficult to explain cos he is still MY dad, just not MY dad as I've always known! This is killing me, rant over and apologies yet another moaaaaaan!! X

30 Replies

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  • Satt I now how you are feeling, your dad is still there, just can't get out, and say what he is thinking, I get it from my children all the time, our son does not visit very often, I think it is because of the way his dad was before, at the start of the illness (the change in George) he was very aggressive, I have 3 children, he was aggressive to two of them, and I think our son remembers that, which is very sad, he has always been a good dad, but not very hands on, I suppose he was too busy working. Our middle daughter is different. He phones and asks how dad is. Also I think this illness takes away all the empathy from them, and they can't show how they feel. Sending you a big hug. Yvonne xxxx

  • Thx u Yvonne, luckily my dad has never been aggressive and has always been the best dad you could wish for! He has worked all his life, made a lovely home, provided for all his family above and beyond! My brother rarely visits due to being scared I think of Psp, it's very hard to understand unless you live with it 24/7 and all I want is for my dad to be free of this evil disease because slowly but surely it's taking him away from us all! I don't think anyone can ever imagine something so cruel happening to their loved ones? I certainly never did!! Because g hugs to you my darling x ❤️

  • No apologies, darlin! You have every right to your feelings....and you are right ....we all feel that about our loved one...we all do!! you just keep holding on to him and telling him you love him and do the same for your mom....She may not feel the man she married is the same one laying in that bed. I don't why PSP cannot be a little quicker , but it is what it is....I look at my husband and feel guilty and feel angry but most of all I feel helpless.....but it is all wrapped in so much love that I / we make it through another day....and you can too. You can make it You are strong and you have been though so much and at the end of the day , you are going to be yet a more wonderful person....another facet on your diamond ....

    Get some rest if you'r e not already ....

    Love you ((HUGS))

    AVB

  • Thx u AVB

    It does make you feel helpless (totally) and why Psp isn't quicker I don't know?!

    Sending you much love x

  • Everything you have said is so true, I think this is one of the hardest things to deal with. Our loved ones are a shadow of their former selves. We see glimpses of our loved ones if we are lucky and that's what we need to cherish. Hold onto these and the memories you have to get through this. I don't know if you're religious, but if you are poor your heart out in prayer. I pray that Allah makes it easy for my mother and all those that are suffering. If your not religious then make sure you speak to someone to let it out. Hang in there, that's all we can do. Take care.

  • Thx you x

  • Massive hugs. It is just so damn evil these conditions. Life is so precious but also so cruel to have people suffer through uncurable conditions and have to just wait for the peace to come from being set free of their suffering. Then us carers have to endure more pain of them leaving us after watching them suffer. Where is the humanity in that?!

  • No humanity at all spiral sparkle! Your reply is spot on!! And made me cry too!! X

  • Oh no didn't want to set you off crying. Big hugs

  • Bless you

    Not your fault!! I'm just in meltdown mode, it will stop at some point, the tears can't last forever x

  • So sorry to hear you are feeling this way, it's heart breaking - after a while, I went into "dad" mode with my own dad, I would tease him (he would keep repeating "get lost" and I would say, I am calling your big sister and telling on you and he would laugh out) or just hug and kiss him a lot (which is TOTALLY uncharacteristic of me and my dad's relationship, he was very a hands-off, i-am-your-father kind of dad - there will be times when, if you are believing, you will call out to God, other times you will feel a strong atheist - it's a hard struggle....

  • Thx sammy x

  • Sweet, Sammy. Beautifully done.

  • thank you easternCedar :)) - best wishes

  • one more thing, I would recommend discussing with the DN's on when it is time to stop intervention or treatment - this is a very difficult thing to discuss but I would suggest this discussion happens as soon as you and your family can manage

  • Oh satt2015, I know exactly how you are feeling !! I feel exactly like this with my mum . It is breaking me .. My mum is fighting it all the way ... Fortunately she has shown no signs of aggression . But all the other things that go along with this horrendous PSP are evident . It's just so difficult to see happen isn't it ... This once amazing kind human being destroyed by this illness and nothing to stop it!

    As I was told on this sight though ... She is still here ...it could be worse so I try and remember that and take each day . Make sure you get some rest .

    Love and peace to you 💕

  • Thx Mary n yes it does break us, slowly but surely. My mum just keeps telling me it won't go on forever and I have to keep that thought in my mind!! I HATE Psp with a vengeance!!!!!! X

  • I remember the shock I felt and how hard it was to see my strong father as a frail old man before he died. It is even harder when they live with PSP.

    You are making a relationship with the man he is now and making the best of how he is. You are supporting your mother too.

    The memories of how he was and the relationship you had are all still there. In time they will balance the present.

    Believe me it is true that old memories become more vivid as we get older.

    I hope your dad can be kept comfortable.

    Love and a Big hug, from Jean xxx

  • Thx you jean, another reply that has made me cry because what your saying is so true! I honestly don't know where I'd be without all of you!!!!! So massive thanks x

  • Hi sorry your having such a time right now, what I understand about palative care is they will continue to care until things get bad then it would be hospice, this is the way it goes in the US. I know seems like everything is such a ordeal, can drive you crazy for sure this PSP is terrible, my brother used to walk on his hands more than is feet, LOL, now we can hardly get him out of his chair into the transfer chair, he took a pretty bad fall yesterday morning. Hang in there that's all we can do anymore. Nettie

  • Ouch nettie!! How's your brother now?? X

  • He's ok really scratched up this time just breaks my heart when he falls as he can not get up with out help.

  • Oh, Satt... I've been busy elsewhere... just seen this...

    Hugs!

    FWIW Professionally I had to assess dementia cases from time to time. My specialism was not elders so it was unusual and strange territory. At first I was shaken by the question of Who is this before me when the person who was is no longer there?

    Are we just our minds and when that goes who are we?

    Over time and being informed by loved ones I came up with this... This is so just my thoughts and they are really FWIW.

    They are the person who brought us into the world and cared for us... They are the person who achieved many things and gave and took love.

    They are our forebear, husband, or wife with whom we shared so much.

    When the mind is gone there is still the vessel and its spirit. (and for the religious soul too).

    We owe them dignity and care and we can celebrate what they shared with us through doing just that. Through doing that care we also celebrate ourselves and our value.

    I hold to this it is my purpose through these hard times.

    And it is hard.

    Hugs

    Kevin

  • Beautiful thx K x

  • The true definition of palative is caring for someone who has an illness or desease that has no known cure wich will end in death.

    So looking at it logically everyone who has got psp or cbd or motor neuron are all palative but most of us use the term life limited.

    So perhaps it would be better for you to go back to thinking of your dad as life limited instead of palative.

    Janexx

  • Thx Jane another good answer and I'm gonna try this thought!! X

  • Peace be with you Saat2015. I truly believe he is listening--tell him you love him. You are in my prayers.

  • Thx you ❤️

  • I know, we are looking at Palliative care as well.

  • 😓

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