There's that guilty feeling again

[AmyT]

Hi all.

I have that horrible feeling of guilt again. Mum is not very well, I think she has the horrible bug that's going round. So, we have had to put Dad into emergency respite. He was supposed to be going in on Monday for a week anyway so he's gone in a few days earlier. Still, when I left him there today, it actually broke my heart. I hate this, it was not meant to be this way - his life I mean. Before PSP really took hold he was the centre of our lives in a very different way. We all took his advice, laughed until we cried at his jokes, asked him how to fix things, just general Dad and husband things I guess. But now, he's a different man, a different Dad and a different husband. I would do anything to have him back just for a moment so that we can ask him if what we are doing is right. I hate to think of him on his own...I don't want him to be frightened and I don't want him to think he is alone. I know he is safe, and they look after him well, but I don't want him to feel abandoned. I cried all the way home today, feeling like I had left a child at nursery for the first time. Fending for himself without us around. You all know with PSP, it is such a specialist thing, people don't 'get' it a lot of the time and do you know what; sometimes you just get so fed up of explaining it all don't you!?

Thanks for listening - it helps to have somewhere where you can be completely honest.

Love to all,

Amy xxxxx

[Jan_K]

Aw bless you Amy! Yes you do get fed up of explaining. When my Mum went into respite or hospital I always took the PSP folder with me and let it with them so EVERY member of staff who went to her bedside could see it.

Hope your Mum gets better soon and Dad is soon home.

It is so sad to see their personality and caperbilities dwindle away and that is one of the hardest things to accept with PSP. you cry anytime..I didn't and ended up on anti deppressants, crying is a healing and release process.

Take care now

Love jan x

[kay1]

PSP doesn't only create mayhem for families with the illness, the guilt for all the family is part of it as well. Believe me you are doing the right thing by your dad and your mum, please don't beat yourself up because of the decisions you are forced to make - they are just part of the extra burden. The respite will give your mum chance to get well again, and your dad has the care that he needs and will soon be home with his family x

[SuzieQ]

Poor Amy! My heart goes out to you. I know exactly how you must be feeling about this. I sincerely hope your mum makes a speedy recovery so that you can have your dad back home again.

My husband is going into respite at the end of February for a week and it will be the first time. I know that he will be well cared for but I keep thinking, nobody knows him like I do and it just won't be the same for him. Perhaps I am "blowing my own trumpet" here, but nobody can care for him as well as I do. It was at my instigation that the respite care is happening as I am almost at "burn-out" at the moment. Just like you, I feel I am abandoning him and my own thoughts are that it will be exactly like when my twin daughters first went to school. Every time I think about it I cry, but he doesn't seem concerned about it at all, in fact secretly I think he will enjoy not seeing me get anxious and cross with him when things don't go just right.

Anyway, my dear, I hope your guilty feelings quickly subside and your mum is soon well again. If she is anything like me, she will absolutely "need" a break and when your dad returns home again, hopefully her strength will be restored sufficiently to fight another day battling the problems we all encouter due to this devastating illness.

Take care and love to you, your mum and your dad - and remember we can all identify with how you must be feeling and we are always willing to "listen" on here and offer advice if we can.

Love...........SuzieQ xx

[Kathy]

Dear Amy,

I can only re-iterate what the others have already said.

It's easier said than done but do try not to feel guilty.I'm sure your Dad understands how important it is for your Mum to look after herself. Although my Mum seems quite muddled a lot of the time she was REALLY aware when Dad started taking anti-depressants and she got very "het up" at the thought that looking after her was making him ill

Take one day at a time, cry when you need to and remember we're always here to "listen"

Do take care of yourself

BIG HUGS

love

Kathy xx

[CateT]

Hi Amy,

Your post brought tears to my eyes. I am dreading the time we may put my mum in respite care. In fact, I feel guilty that she even has to have carers come in and wash her. But I know that it is impossible for me to be there all the time. Guilt is a huge thing with this illness.

Hope you are feeling a bit better because the fact that you care so much must be something your dad knows and appreciates.

Cathy

xx

[AmyT]

Dear everyone,

Thank you so much for your comments - I can't tell you how much it means to have people out there who know EXACTLY what I'm on about!

PSP is very isolating both for the family and the person who is suffering from it so the more we talk about it the better.

Thanks for being there,

Much love

Amy x