Life after

[Khalissi]

Dear All

I wrote a post a few weeks ago regarding my dad who I lost in November 2023 to PSP. For the past 2 months I have been non stop researching and reflecting back and I cannot stop with the guilt. My dad passed away due to Sepsis and Pneumonia. The night before dad was complaining of abdominal pain and asked to go hospital but I didn’t realise the pain he was feeling and what comes with Sepsis. I know beating myself up about this is not going to achieve anything but I cannot stop the guilt, I feel dreadful and feel like I deserve nothing but pain myself for not noticing the signs and saving my dear dad. Everyone tells me it is not my fault and dad is now free from any pain and other things but I cannot free myself from guilt.

It’s been two months and still I cannot feel peace and live my life without my dad. I feel like such a failure and no one understands. I cannot see any of the positives things I did and only look back on the night before and I recall the signs that dad wasn’t well and I didn’t do enough.

Dad was and is my heartbeat 💓, I would do anything to have him back. What do you all do to move on?

[Millidog]

Khalissi, I'm not in your position yet but couldn't ignore your call for help and wanted to let you know people are here for you. Please, please dont beat yourself up, you didn't do anything wrong. Sadly your dad succumbed to sepis because his immune system was weakened; this and pneumonia are so common a cause of death in psp. With sepsis it can mirror other issues and can come on suddenly so no matter what you did or didn't do the outcome would likely have been the same or something else would have come his way. I havent walked in your shoes to a psp ending yet but did lose my dad so know how you feel about that and I think many on here will be experiencing anticipatory grief in the osp journey with loved ones Remember you are grieving, it's hard, horrid and all the rest plus you will be physically and mentally exhausted so be kind you yourself. Maybe seek a counsellor I did it I find it so helpful. Remember you did your very best and more (your dad knew that) and when you're ready start to do things even little things that would make your dad proud sending hugs Millidog 🫂

[Khalissi in reply to Millidog]

Thank you. Only this group truly get it and can understand. I have a counsellor but I am finding it hard to connect, I walk away feeling ok but the negative thoughts come back and I can’t stop researching more and more which doesn’t help. It brings me so much pain knowing my dad passed away in pain when I thought he went peacefully in his sleep.

[Millidog in reply to Khalissi]

Hello again, if you can't connect with your counsellor do think about changing to someone new. Sometimes unfortunately you know its not working so put yourself first and find someone you can better relate to. I get the research thing I do it all the time but you are hurting yourself and your dad wouldn't have wanted that for you. It may not gave been the ending you wanted but I don't suppose it ever is sadly and he passed quickly and isn't suffering for psp now ...he's at peace so take some of that peace for yourself. Xxx

[OllieFisher1]

He is still with you.......what would he say to you if you were asking him the same questions?

[Khalissi in reply to OllieFisher1]

He would tell me it is not my fault… thank you 🙏

[OllieFisher1 in reply to Khalissi]

and he loved you cleary. No one gets out of life alive, no one. He knew that, and you know it. Live your life the way he would have wanted you to. Thats the best gift you can give him as he waits for you.

[Willowden]

I am so sorry to hear you are feeling like this.

Like you, I would do anything to have my mum back. But for her sake, I do not want her back with PSP. I am glad she is free from PSP and I’m sure you are for your dad too.

I tried a counsellor through work during our PSP journey but we didn’t connect so I tried one through hospice who was brilliant. Keep seeking out the support to get you through this.

I spoke recently with cruse.org.uk

but I’m a believer that talking helps and I do understand this might not be for everyone.

You were there for your dad, you did not let him down.

Take care xx

[Khalissi in reply to Willowden]

Thank you x

[messier]

I wonder if you may be making assumptions here that are making you feel guilty. Although he may briefly have not felt right, and asked about going to hospital, it is quite possible that he didn’t actually experience much pain - pain perception can often be affected in PSP. How sepsis and pneumonia behave in PSP compare with an otherwise healthy person is also different - the reason why pneumonia is a leading cause of death in PSP is because what healthy people might otherwise kick off quickly is what a person with PSP can’t deal with. Even if you had taken him to hospital he would likely have passed away just as quickly because any normal treatment for sepsis would have made no difference to someone with PSP. Please feel free to be angry with PSP, but do not be angry with yourself - there is nothing you or anyone else could do.

[Khalissi in reply to messier]

Thank you so much for responding. It has given me a different angle on my perception x

[DebHep]

Khalissi I'm so sorry for your loss. I am relatively new to this site as a PSP carer but find the support & information is amazing and a lot can be learned from those who share their experience.I had similar guilt issue to you in a previous loss and was recommended as App called Headspace which helps you relax & learn to deal with your negative thoughts. It really helped me learn to acknowledge & reflect on the messages in my head but to also move on. All any of us can do is care for our PSP loved ones the best we can, we are not medically trained but what we do is driven by love & knowing our patient as well as we do.

I'm sure you did everything you could and sacrificed a lot to care for your Dad - now he is free from the horrible disease he would not want PSP to impact your life any longer than necessary.

Take care.

[Khalissi in reply to DebHep]

Thank you for your kind words x

[Martina_MP]

So sorry for what you’re going through. You sound like you are really suffering and stuck in a loop of painful thoughts which are tearing you apart. If you are obsessing, getting depressed and preoccupied and not functioning well, maybe you could see a psychiatrist, as there are options for treatment that could help disrupt those intrusive thoughts and let you get some perspective. You are already in therapy but sometimes people need something else to get out of a deep hole.

Just stop the internet research. Stop. Stop feeding your monsters. The internet is not getting you closer to reality.

[Khalissi in reply to Martina_MP]

I know… thank you x

[Leosta]

Dear Khalissi, you do need to find a new counsellor. You have to have empathy with them and they with you. Years ago I found a brilliant psychotherapist for the depression I was suffering from. I rang 3 before I found the one who 'instantly' came across as someone I could open up to. And I made a good choice.

Try this: Write down all the negatives you are feeling, rip it up and set fire to it (safely!)

Let go, Khalissi, let it go.

Love and prayers 💚🫂🙏

[Khalissi in reply to Leosta]

Thank you x

[timbowPSP]

Dear K, you sound to be a very caring focussed lovely person, and of course you are suffering from guilt .... its natural. Losing a close one is always painful. But look at the positives.... he is now free of pain and can move through his new universe of freedom, and enjoy the positive thoughts and images of those who send their love to him. Forget the negative thoughts, and focus on giving yourself permission to grieve, and to take plenty of time out. Much love and strength to you at this time. TimbowPSP

[Khalissi in reply to timbowPSP]

Thank you 🙏