PSP Association

Guilt

Guilt is something we all sufffer! I remember a while ago, Heady, writing a post, that we shouldn’t, but it’s so dam hard not to feel pure and absolute guilt!

I feel so bloody guilty that my darling Dad is in a nursing home! I know 110% that, of course, no question, he’d rather be at home, so would Mum and I! But because of the complexity he can’t be 😥

The complexity includes sleepness nights, pad changes in between carer visits, feeding, medications, confusion (because it’s bloody hard to continually deal with), the list goes on and on!

The guilt consumes mum and I, day and night, you go to sleep, Dad last thing on our mind, I have awful dreams when I sleep and then when you wake up, how is Dad?

I keep hearing that song ‘dance with my father again’ by Luther Vandross, heartbreaking (and one of my Dads favourite songs) I heard it the other day whilst driving to work, tears running down my face!

Guilt consumes me, can’t help it, I wish my Dad was home with us, but it can’t/won’t happen x

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Amanda it is so hard to deal with the guilt, but you did a wonderful job, your dad knows that, it was just impossible for you to keep him at home, your mum was very poorly. We are going through the sleepless nights the agitation, the bad days. Please don't feel guilty, because Amanda what you did for your dad and still doing, there are a lot of children out there that could not do what you have done and you are still doing, you are a wonderful daughter, pat yourself on the back you are amazing. Big hugs Yvonne xxxxxx

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Aww bless your heart Yvonne thank you!! How are you coping? Truth!!! X

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Yes good days and lots of bad days, George's catheter was blocked on Saturday, DN came in and changed it, he was in so much pain, felt so bad for him. Truth is I am bloody tired, had a holiday a short time ago, can't remember it. Trying to keep strong, for George, he is coughing and choking, but still wants to eat, which is taking longer and longer. Big hug Yvonne xxxxx

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Hi

What is it with this coughing! The noise is incredible, i have tried everything , back to the docs i think.

Julie

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I’ve never heard coughing like it. Waiting for Botox treatment to stop the huge amount of saliva for John.

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Let me know what your doc says re coughing as did get no joy today when I called doc round. The noise is enough to tip you over the edge sometimes and we live in flats the entire building can hear it. Doc gave me the impression we had wasted his time for calling him out.

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Aww bless you both Yvonne, it’s so incredibly difficult isn’t it?! Huge hugs x

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I know the coughing and choking and they still want to eat and it's the last thing they have to enjoy. Hard!

Love and hugs,

Cuttercat

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Hi Amanda

I’m not going to ask how you are as I can see from your post

Get that head held high girl cause you are doing a fantastic job with your dad and mum and continue to do still to this day

We all have crap days thinking this and that but we all coming out fighting

I do hope that your feeling better soon and I’m sending you massive hugs and kisses to you all and take care

Sue 💕💕

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Thanks Sue! I know you understand x

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I understand, Amanda.

I must admit I have read recent posts on this with tears streaming. One of my big fears was that happening to Chris. Like everyone, he dreaded it.

Circumstances meant that I was able to care for him at home to the end and I feel so grateful. For the 9 weeks he was bed bound he slept through the night. The Twilight nurses would come and change him if needed. He was not agitated and had no pain, was co-operative with the wonderful carers we had. Otherwise I would not have been able to do it.

Please don't beat yourself up. You have been and are a wonderful daughter. I know your parents know that.

Big hug to you and your mum, from Jean xx

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Bless you jean, thank you! How are you doing? X

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Struggling !!!

x

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Not surprised jean, big hugs x

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Thinking of you every day.

Cuttercat

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How are things for you ?

Jean x

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We are again stable, whatever that means. Until the next onslaught. But will enjoy the holiday this week.

Hugs,

CT

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Make the most of any good moment !

hugs back, Jean x

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Oh, dear Amanda

I'm sure you write for many of us.

I suffer too.

Is it 'survivor guilt' we suffer?

To watch the one's we love suffer and not to be subjected to it too?

This is easy to say, but there is some truth in it. Unlike normal survivor guilt we have the opportunity to lessen their burden. Something most survivors do not have.

It's painful to watch and hard to bear, but we have that at least.

And yet I feel the guilt, the pain and the loss and, it is crippling sometimes.

My sweetheart needs me, I must not give up.

Such is our lot.

I feel for you both.

((((Hugs upon hugs to us all.))))

Kevin

xx

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Thanks K, been wondering how you and Liz are! Do share!!x

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I'm proud of you Kevin. We're here for you.

Cuttercat

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That means so much.

We have been through the mill here.

Liz get's dark angry spells now and makes accusations. The home copes with it really well. The previous home just got defensive and paranoid!

She has never been a nasty person in any way.

But most of the time seis just my lovely loving and huggable Liz.

She misses her home here so much... My heart bleeds quite a bit.

XX

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Just read your post and I believe every carer suffers from guilt and I say to myself and I am saying it to you too Amanda this PSP is not your fault. You are truly a caring wonderful daughter. Don’t let PSP beat you down too. Take care and thinking of you. Jxx

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Thanks Zeberdee, wise words! X

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Dear Amanda

It is so very hard and guilt has a way of consuming us. I was talking with Hospice nurse last week and said I felt guilty when my husband stayed with his brother recently and she suggested there was perhaps an element of anticipatory grief too. Grief in all of the things that PSP has taken from us and the knowledge that ultimately PSP will take them from us. This compounds all of our guilt feelings.

Please take care of yourself you are a wonderfully caring daughter

Love Tippy xxxx

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Thanks Tippy x

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Morning

We have been on this journey for a fair few years now, similiar to your dad re stage of illness. What will come to you and mum eventually is a level of acceptance, does'nt mean to say you won't still be sad,angry and worried but i have found it is a slightly better place where you can cope a little .

The only time i listen to music is in the car , unchained melody is my trigger, the times i have been sobbing pulling up at junctions!

Try really hard not to let this vile illness destroy whatever is left of your time together, i often think my daughter feels it more than me , i often find she has to go into another ròom for a minute, she has lost the dad she loves so much and her little boy has only known grandad ill and without speech or movement.

Julie x

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Wow Julie that last paragraph really hit home 😥 x

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Our boys haven't really let me see or know their true emotions as only get to speak on the phone or Skype, I think they find it too painful to talk about. Much better face to face but only see them every 10 weeks or so. Our two grandsons have only known their Grumps ill and now he can comunicate with them at all, so so sad for us all. I think the loss of being able to see and visit our sons families and share their lives. I can barely talk about it without great sadness and pity for us. Not a nice situation to be in at all!

Love kate xxx

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Your dad knows what a loving caring daughter you are. You and your mum have done the very best you could for him. We all feel helpless that we cannot do more but our loved ones know that we do all we can. Please don’t beat yourself up you (and none of us) deserve it. Xxx

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Thanks Vron, how are you and J? X

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Still sad about mum and dad I think you know they died within 3 weeks of each other. We had their joint funeral service last Tuesday. Wonderful for them but very hard for us. John has had a sharp dip. Balance pretty well gone and using a wheelchair and back to a catheter. Speech also gone and his cognitive ability is very slow. Neurologist told us last week that his confusion is Lewy Bodies. My father had that but I had no idea it was part of PSP although it is a parkinsonian illness. Dr has given him stuff to help him sleep and it mostly works! I'm very sad and frightened seeing the deterioration and I also feel guilty because I need breaks. At the moment I can't leave him so stuck in the flat. Social Services are being great. Applying for funded nursing care for him. Sorry longer reply than you expected! You take care. Vronxxx

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Bless you Vron, you are in a really dreadful situation! I can’t imagine a joint funeral for my parents, think that’d just about finish me off! I need to learn more about Lewy bodies and will now be reading up. Huge hugs and thinking of you at this terribly stressful time x

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Thank you xxx

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Dear Vron, I feel so much for you, what a terrible situation to that you all find yourselves in, unimaginable! Losing both parents and all the other things you are dealing with. Ben has also been very confused of late and we see a neurologist this weekend ( having to pay privately as so long to wait for NHS appointment) I'm can't make out if new meds or some form of dementia.

Love Kate xxx

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Perhaps Ben has Lewy bodies. John is much worse at night but a dose of a nitrepazemium (spelling) and a phenergan keeps him asleep. Without those he’s up and down all night. Good luck let’s us know how you get on with the consultant. Xxx

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Thanks for that pointer, will discuss with neurologist and hope they can sort him out. Xxx

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Hi Amanda, well you know what I am going to say!!!!!!!!!

Dearest Amanda, do tell us, what more could you have done? what more could you do now?

Guilt is a normal feeling, in our PSP world or out there beyond. It's our survival mechanism, to look after ourselves and not do harm to others. Unfortunately the brain only knows one level, so we judge all our feelings on the highest alert. What you are feeling is perfectly normal. I liked Kevin's reply about survival guilt. Never thought of it that way, but yes, he is right, there is a lot of that going on.

I really don't how to relieve you of the terrible feelings you are going through. You could try writing down in two columns, the reason you are guilty and why you shouldn't be. See which is the biggest. But even then, I suspect all of us would fill in the guilt column!

We are our worst enemies, you and everyone else on this site, do their very best for their loved ones, over and above. I am afraid the bottom line is, they are losing this war with PSP, on our watch and there is nothing we can do about it. The only thing that will help you is, acceptance. Accept you have and continue to do the very best for your Dad. Accept that there is nothing you can do to stop this evil disease. Accept the only thing you need to do now, is make him feel as loved as is humanly possible.

We are all going to die, if you go to meet your maker, knowing that you were well and truly loved, what more could anybody ask?????

You are doing that for your Dad, Amanda. So DITCH THE GUILT!!!!!!!!!!!!!

Sending big hug and much love

Lots of love

Anne

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Anne darling your so so so so wise and for that I love you dearly! Thank you for taking the time to really explain everything to me and I love the idea of a list!!

Sometimes in fact always, for me, it really does help to share my problems with all of you and then receive your wonderful replies! Where would we be without each other? I dread to think!!

Huge hugs x

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Thank you Amanda, nice to know I still have my uses!!! As for being wise, no my love, just been there, got the Tee-shirt and the bloody big scars to prove it. Where would I be without you all? Probably with Steve, or should I say, he would have joined me.

Lots of love

Anne

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I KNOW how you feel. I feel guilt every day and I'm still in the situation as Charles is still at home. It brings self-hatred and sadness.

Please know we all understand and hopefully all can help each other lessen this emotion that is a downer to our self-esteem.

Love,

Cuttercat

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Agree Cuttercat, we all need to let off steam more regularly lol x

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That pesky demon called Guilt has a lot to answer for, try not to feel guilty you have done your very very best and there is a limit to what one person can do. I find it hard to let Ben go into a home for a weeks respite so goodness knows how it feels to hand them over permanently. I hope that I can nurse Ben to the end but never say never as it may be that I won't be able to cope as time passes. Love and strength to you Amanda.

Love Kate xxx

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Bless you Kate! I’ll keep my fingers crossed for you! X

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Dear Amanda , ..... yes it’s awful this guilt .... when I’ve spent week with mum and then driving home to the midlands knowing I’m not going to see her for another week it’s horrendous ... I cry all the home and then try pull myself together for sake of my kids . As you say you first thought in morning and last thing at night is if tbem ... we love them so much. I worry so much about what is going to happen too ... I just don’t know ... mum is still on her own with carers , brothers and family helping . I hate this desease...

Your wonderful Dad is safe and you and mum are doing absolute best for him ... reading your posts you couldn’t do or love your parents anymore!

We will all take each day and make memories ...

lots of love and strength to you Amanda you doing a great job xx

Jude xxx

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Bless you Jude, I get you x

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Amanda, I know exactly how you feel. I sadly lost my wife last Thursday to this horrible disease and I have gone through all the guilt, anger, frustration and fatigue. Everyone tells you that it is only "human nature", but it doesn't feel like that, does it? In some ways we were fortunate that we were both determined that my dear Liz would stay at home for as long as possible. This we managed to do and she slipped away peacefully, at home, whilst asleep. I had an amazing group of carers coming in to assist, but they cannot be there 24/7. The hardest times were during the night, when you never really get proper sleep. You are always listening for any changes and then sometimes she just needed someone to cry with her. And we cried often. Try to stay strong Amanda, your Dad knows full well that you love him and you are doing an amazing job of looking after him. Sending lots of love and encouragement to you and don't forget, you are doing brilliantly.

George

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Bless you George, thank you for responding as you clearly have enough to deal with yourself at the moment! I’m pleased your wife passed peacefully and in her sleep, I think that’s the best way to go x

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