Try again 're grieving

[Baileyboo]

I did something sill and accidentally posted before I had finished

[Kevin_1]

Hi

Go back to the post and look at the bottom right.

You will see a downward pointing Chevron.

Click on it and choose edit.

It was a year before someone told me about that!

Cheers

Kevin

[Baileyboo in reply to Kevin_1]

Thanks Kevin I am having an off day. At least I hope it is. Honestly I posted 2 silly posts and don't know how I posted them. I will try again tomorrow.

How are you?

Pat x

[Kevin_1 in reply to Baileyboo]

Hi Pat

Pretty OK at the moment.

The visit to Liz today didn't go so well, which is always a downer. She was in one of her PSP/CBD angry moods. I sat and read to her and she chilled, but when I stopped she put her angry face on. PSP/CBD is such a fairground ride!

As for off days - take it easy on yourself. You are going through a major loss on to of of years of pain and trauma.

You've got this far. Please trust yourself to heal a little.

Warmly

Kevin

x

[Baileyboo in reply to Kevin_1]

Oh Kevin. Sometimes (A lot of the time) Les was angry and accused me of replacing his place in bed with another man.

I was constantly explaining that working full time, seeing him for 2 hours each night left no time and 1 was constantly tired. It is exhausting but I would give the world to have him back pre PSP. It must be so hard for the ones suffering. It's frustrating for us but probably absolute hell for them.

It's such a vile disease.

I have photos of things Les wrote to me when he could no longer talk. He used to get so fed up with me not understanding. I will keep them and hope at some point I will make sense of them. His writing was so small and virtually impossible to understand no matter how much I enlarged them.

Days like these are so exhausting and drain us but we continue because we love them so much.

Take every day as it comes and try to rest yourself so that you are able to see Liz tomorrow and, fingers crossed, it will be a better day.

I am sending you hugs.

Pat x

[Mikey12345 in reply to Baileyboo]

Baileyboo, you could have written that to me. Yesterday my husband told me to leave the nursing home. He was so angry, saying it was my fault he isn't going home. It's that little bit of truth that gets me. A couple of our 5 kids want him home, yet they are not there for us even in the home, rarely visiting and then only for an hour.

Hubby doesn't understand that he can't walk or transfer himself, that it takes multiple people to do incontinence care. He only sees that I won't take him home.

I, too, would give anything to have him back. I'm sure all of us here on this site would. If we didn't care so much, I doubt that we would be writing on here.

Michael also accuses me of having affairs which would be comical if not so sad. I, too, tried to explain to no avail. So sad he believes that and has to live with it. As you said, vile disease and hell for them.

I appreciate your sharing. Helped me again to realize I am not alone.

Hugs

Liz

[Cuttercat in reply to Kevin_1]

Charles only does the angry when he gets a carbidopa/Levodopa hit. It makes him restless. Up and Down and on and on.

I appreciate your next paragraph and I think about it everyday.

Cuttercat

[Kevin_1 in reply to Cuttercat]

Yes, misery when in happens.

Waiving to you.

Kevin

[Baileyboo in reply to Cuttercat]

Hi Cuttercat

How are you. I haven't written a post for some time but that doesn't mean that I am not thinking of everyone. Sometimes, I admit, I am frightened to ask.

I hope you and Charles are okay.

Love and hugs to you both

Pat xx

[Kevin_1]

Thank you Pat

That post helps me a lot.

It speaks so well to our experience.

Even in your difficult times you give.

I am deeply touched by that.

I hope tomorrow is a better day for you to.

Hugs

Kevin

x

[Baileyboo in reply to Kevin_1]

Hi Kevin

I hope your visit with Liz was a little better today.

I sometimes dreaded seeing Les when I had a tough day at work. Just walking to his room on some occasions was enough to make me drag my feet. How I loved that man and will continue to love him as long as I have breath in me. I would give the world just to have one more day with him, preferably without PSP, but if not, when he was with me at a cafe on the beach and we were able somehow to understand each other. I tried to take him out every weekend and hated returning to the nursing as he would say "You don't really love me, if you did you wouldn't bring me back here". Those words almost ripped my heart out.

The grief I am dealing with is full of if-onlys and that grinds into my heart when I think of him. I will continue on this path in the hope that the good memories will prevail. Oh boy! it's tough. I worried about feeling numb but that has gone for now. I am back to thinking constantly.

Enjoy being with Liz on good days and cope with the bad as best you can. This time is so precious.

Sorry Kevin I am on a downer today. But I do hope today was better for you.

Love and hugs to you and Liz

Pat x

[Kevin_1]

Hi Pat

There's so many reasons to be on a downer with this.

You must love Les so deeply as I do my lovely Lizzie.

I too get words like,"You don't really love me, if you did you wouldn't bring me back here". They cut to the quick. Sometimes Liz cannot see that care could no longer be given at home and she feels the loss of it deeply.

I couldn't see her yesterday. The physio was seeing here at my time. I use those time conflicts as a way of getting a day off. Hopefully today will be better.

Hold him in your heart Pat, he will always be with you there.

I hope you get good days too.

Warmly

Kevin

xx

[Baileyboo in reply to Kevin_1]

I hope today is better for you and Liz.

Les couldn't or wouldn't accept not being at home either. He wanted to come home on Saturdays but I couldn't be firm witih hm when it was time to go back. I know there would be tears and I would find it impossible to make him.

We compromised by going to our son and daughter-in-law to spend time with our grandchildren. Not the same but the best I could do. I feel that I didn't fight for him to come home. He was taken into hospital on 31st May 2016 and didn't come back. For some reason, and I am sure Liz feels the same, they either can't or won't accept what we say.

I hope you can enjoy your visit today and leave without feeling bad in yourself. Just being with Les was good mostly but the bad days poisoned a whole week as it is so hard to relax. We wouldn't feel this pain if we didn't love them.

Love and hugs to you both

Pat x

[Mikey12345 in reply to Baileyboo]

I have a question. Was Les able to walk and was he continent at that time? Michael is in a gerichair during the day and hoyered into bed at night. Can not imagine taking care of him during his visit, yet I feel terribly guilty for not taking him home on occasion.

Thanks,

Liz

[Baileyboo in reply to Mikey12345]

Hi Liz

Les could stand with 2 people. He couldn't walk but I was able to take him to the car in his wheelchair and help him into the seat, fasten his seatbelt and then put the chair in the boot. I found it exhausting but I refused to let him down. He was reasonably ok with toileting and knew when he needed to go. If we were at our son's he would ask to leave. Towards the end he had accidents and was mortified by them. It was so hard for him. This damned PSP took every bit of dignity from him and it broke my heart to see him cringing.

At other times if the weather was ok I took him to the coast. I tried to get it right for him and to spend precious time with him. Admittedly it was heavy for me but I was determined to give him time away from the nursing home. I felt so guilty as I had to work fulltime to help the payment to the home.

I hope this helps you a little it is so difficult to judge.

I am struggling with losing Les and so want him back minus PSP. I miss him so much as he was the only one I could talk to when things went wrong. I have our son and his wife, our daughter and 5 fantastic grandchildren by my son but I have lost half of the person I was.

Sorry I'm rambling on here. If I can help in any way so just ask. I will be as helpful as possible.

Love

Pat x