PSP Association
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Warning : Rant

I need to get this out & what better place than here...

I get a call last night from my Dad's teatime carer to say he's had a (toilet) accident & that she's spent most of the time clearing up but can't quite finish off as she has to get my dad up to bed. She just wanted to fill me in on what had happened & he was fine otherwise. I get up there this morning & he looks so cross, asks me why there's no coffee (I guess because he'd finished it) why didn't I come up last night (there was no need as carer had reassured me) & to get him this, get him that. I'm nearly in tears as I put the washing on, go upstairs to finish clearing up, change the bed, etc etc, you all know the drill I'm sure. Then he says he wants me to text my sister to ask if his coughing is getting to much for her to listen to when he goes to hers for lunch on Sundays! I said no I wouldn't! I'm so angry/hurt that he's more concerned that she has to listen to him coughing (COPD) for 4hours on a Sunday when I do EVERYTHING for him day after day & do things that I never dreamt I'd have to do for my father.

Now I'm home I feel really bad that today was not a pleasant one. I try so hard every darn day to be patient & happy around him as I never know if it's going to be his last, and he brings me down in an instant.

I know he can't help it but.....

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Oh dear, PSP is a horrible illness, they say things they done really mean. You are the one in the firing line, can your sister not help out, maybe you could share it between you, which seems fair? Please don't be disheartened they loose all there empathy. If the career ring you to say your dad was ok, there was not need to go, the career should of cleaned up, not left it for you to do next day. Feeling so sorry for you, I think our children never ever imagined that they would do what you are doing, your dad is very lucky you are doing for your dad. Because a lot of children wouldn't do it . Send you a big hug. If he coughs for a few hours while he is with your sister, than so be it. Yvonne xxx

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Thankyou.

My sister will only do a few hrs on a Sunday, I've been his main carer for nearly two years now. I can't fault his eve carer, she stayed way longer than the half hour he has her for. It was just finishing off really. I know I shouldn't take it to heart, but it's so hard. X

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Yes it is really hard, I have it nearly every day from my husband, stay strong. Yvonne xxxx

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Hi

I so identify with this, my husband does exactly the same sort of thing, makes you feel like their personal slave, that they can almost order about, then pleasant to everyone else.

I feel sorry for you go they this for your father, I bet deep down he appreciates all you do, even though you don't often receive his appreciation.

I'm sure your doing a brilliant job, appreciate yourself and give yourself a hug, you deserve it

Love and hugs

Helen xx

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Thanks Helen, yes he can't thank me enough most of the time but I'm struggling a bit this week & it just got to me today.

Xxx

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Okay to rant on here. You are not alone. My husband has always been loving and appreciative but at times with PSP I have felt treated like a slave. Its PSP.

You are doing a great job and I'm sure he knows he is lucky to have you but it must be hard being so dependent.

love from Jean x

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Thanks Jean...one day at a time eh? 😊😊xx

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Looking after Dad

Yes, that is so infuriating on top of all else.

Its the sort of thing that cuts the legs of us carers. I've got the T-shirt!

Then I started to realise. My Liz has a deep trust in me and she knows that she can just make demands and there are many of those! Then the next minute she is so considerate of others.

It dawned on me that two things were going on:

First that she, being somewhat cognitively limited, was not paying as much attention to me, the wallpaper as it were, but she would pay a lot of attention to less common experiences... a visit from a relative.

Second, she would perhaps feel less sure of peoples acceptance of her state and would be more concerned not to be rejected for it.

In this light Liz feels more loved and accepted by me than those others.

Gosh, have I railed at her for this in the past...

Maybe this is not your situation. Its a thought though.

Strength to you and rant away. My turn soon I think!

Warmly

Kevin

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Thats my understanding too.

It would be more difficult if he was never loving though !

I have concluded that the lack of energy often leaves me last on his list. Mostly he looks at me as if I am his Life Raft and I think finds it hard if my attention is elsewhere for too long. He does often seem to function emotionally at a basic, child level.

love, Jean x

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Yes Jean!

I've not had children, so I am a less experienced in the area of development.

That's a great observation. It describes Liz to a tee. She often looks surprised when I feed back what she has just done to me emotionally, then sometimes looks a little confused.

Your comment brings it into focus for me.

Thanks

Love

Kevin

x

Adding - And you are still here giving despite your full plate.

Hugs to you.

:)

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Oddly, I have more time free than I have had for ages, as Chris doesn't move at all. So I don't have the anguish of " what next ? " But have the emptiness as he sleeps a lot and can't talk. Of course I can't get out much. This means I have more time to feel sad though !!

Hugs back, Jean x

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Oh, Jean

Its the emptiness, or lack of Liz's presence I dread the most.

Right now she is sleeping.

I am planning a nice lunch for her as I do every day. She will come downstairs with the carer and if she likes it she will give a small smile and a thumbs up. Its not a lot, but I live for it.

So I do know where your at I guess. Empty and plenty of sadness.

My heart goes out to you both

Hugs

Kevin

x

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It does help to know others understand.

We are kept going by the glimpses of them, aren't we ?

hug from Jean x

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Jean so true xx

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Yes, this all sounds so familiar. It is child like that he gets louder and more demanding when I take my 10 year old up there. As much as he loves his granddaughter, he dosent like to share me!

X

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Yes! Spot on I think. My dad trusts me more than anyone and so relies on me heavily. I know I'm the closest to him and the one who bears the brunt. Feels goid to let it out and receive so much support on here

X

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Its amazing how it helps when we only really know each other on here.

x

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They say that it's the nearest and dearest get it in the neck, I'm lucky that Ben has been very easy it that respect, bless him, it does make it easier to enjoy caring for them if they are pleasant and agreeable. I feel for you that your dad isn't always easy to deal with, it must feel like a personal attack on you and the way you care but I'm sure he doesn't really mean it. This damn disease gets you from all angles.

Keep your chin up

Lovely evening Kate xxx

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Thanks Kate, it's a long hard battle for him and I know he loves me and appreciates everything I do. Tomorrow will be a better day.

Sue x

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There is an old old saying...." we hurt the ones we love" how true with psp. Jane xx

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It is so hard when you are doing everything for your loved one and they shoe more concern to others. It is like a stab to the heart. When we are so exhausted it just makes it even harder to deal with the emotions and anger.

We keep plodding on.... Why because we love them so much.

Here's hoping today is a better day for us all. Yesterday was challenging here too due to Mums cognition and confusion.

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Yes, I try to look to tomorrows, rather than back on yesterday's. Xxxx

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You are doing an amazing job of looking after your dad. Unfortunately families are complicated.

Wishing strength as you carry on.

Bless you,

Althea

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My husband with PSP used to order me about and I had to say that I don't work for him. He was kind to the other caregivers and gruff with me. I think it is because I represented normalcy and he could get a bit of power back by telling me what to do. He also felt more comfortable when I was home and everything was right with the world if I waited on him. I used to resent it, but understood it. He also treated every time he left the house as a big social occasion. He went out to lunch daily even if it was a major chore to do so. He choked a lot and had to use a wheelchair. However, getting out of the house was the highlight of a pretty boring day. My husband died a year ago. You know that day is coming and look forward to the release from all the work. However, I miss him so much. I think you just get so exhausted. However, all the work and hurts shall pass and you can take comfort that you did the right thing and stood true. I did so much for my husband, but the guilt is incredible later on. It also passes.

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This all sounds so familiar. I find myself thinking if the future, when I can do this & go there , then I remember that it can only happen when my Dad is no longer with me and I struggle with that. We have to look forward though don't we.

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We all struggle with that. Unbearable to think of but we need to prepare ourselves mentally.

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A few years ago I read that Prince Charles had his butler squeeze his toothpaste out into his tooth brush. I now wonder if his butler scrubs his butt every morning like I do for Larry. I also set up Larry's dental supplies for him to do his teeth. I feel like I'm living my life and half or more of his.

It's a thankless job.

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Yes. I know.

Although I know Chris appreciates me and would much rather not need this help. We both hate PSP

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Same with Larry. He tells his therapists he wants his independence back when they ask him what he wants to achieve. Not going to happen.

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What happens when they give up hope ?

I suspect that Chris still feels he is going to get better.

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On some level I think Larry hopes to get better as well. He only got to "I'm not going to get better am I." in August of 2016. When I told him no he cried. For the most part he lives in denial. As he says he feels fine unless he tries to walk or talk.

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Thats right. Chris knows it won't happen but when we give up hope we can move on. In this case - move on to where ?

We don't have religious beliefs so the end is the end. Better to be stuck in hope.

He is just watching Jules Hollande and jazz and is happy.

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I know I have to hang on the what time we have left together. When I get irritable I try to get to my mini workout which helps lift my mood. I have been though significant deaths before. I have some idea of how this will effect me. I know it will be the hardest one I will ever have to deal with. As long as he is here in whatever condition he is here.

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Thats right.

big hug , Jean x

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What you're doing is, well to say very hard is an under-statement. You should be so proud of yourself. Hoping today was a better day for you and your dad and that tomorrow is too. One day at a time ... x

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Dear Looking,

I am in the middle of this with Mike, my husband of 30 years. Today I am waking up to the fact that I have to pull back and find more time for myself. They will take all you will give and give back very little. When he is gone, I don't want to be a worn down shell. Buck up and do more for you and the resentment and frustration may resolve. Hard advice but shed the guilt and seek some happiness in the middle of a relentless situation. Best,

Rose Anne in West Virginia

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Thankyou, I try hard not to let the guilt get the better of me and succeed most of the tie but we all have these moments don't we. I'm lucky to get some time off and always make the most of it. I know one day I will get 'me' back.x

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Oh, the guilt! Tonight I was upset because my mom was up poking around in her room (she is completely unstable on her feet even with the Ustep) and I was trying to get my kids to bed. She got hysterical- loud, crying (my boys' room shares a wall) so I gave her the phone, asked her to promise to wait for me to take her to the bathroom after the kids fall asleep (as we do every night), and left. She wanted to call my sister (who talks with her on the phone but is otherwise uninvolved). I heard her end the call but was still mad so kept reading my book. Then she fell. Trying to go to the bathroom! It was the first time I wasn't 100% compassionate about her fall (I wasn't mad anymore, just confused why she tried unassisted). And now I feel terrible. Like others have said, she tries much harder (to talk and perform generally) with everyone else. It's all so challenging.

In unity (& frustration)...

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Oh, how we are all in the same huge boat!

Much love x

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How well I remember. Chris can't move now but until 2 months ago he was completely unpredictable and unreliable. I would ask him to stay still and just turn my back and he'd be up. Had bad falls with me within reach.

Don't feel guilty - its an impossible situation.

Do look after yourself as everyone else needs that too.

love from Jean x

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Hi, seems like we are in the same boat. With me, W is unsteady, voice very soft and speech difficult to make out. However when we meet friends or health professionals he is a different person - speech louder and a bit more clearer and walks steady. He can be very demanding at times and is good at giving me orders. Last week I'd had enough and I asked him what did his last servant die of and he smiled and replied "hard work". This cheered me up that he was able to make a joke out of it.

You are doing a sterling job for your dad and I'm sure deep down he really appreciates it. It's not easy so don't be hard on yourself, hope you have better days to come.

Lots of love Nanny857 x

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Hi Nanny857,

Tough times isn't it? I'm at my Dads right now & have had a painful day so far. He seems to resent everything I say at the moment. I do remind him to hold on/not stretch/be careful/etc, etc a lot and sometimes he'll just say 'why'? And I tell him he might fall...'so'? It's sooo hard, I've been in tears in the kitchen. I just want to scream 'I can't do this anymore' at him, but I know I won't!

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I know exactly how you feel and it is very hard. I keep telling W the same things and he asks why. I just tell him that if he can't foresee/think what may happen if he goes on in this way, it's a good job I can and therefore prevent him from ending up in casualty unit in hospital. (However to be truthful, like you I feel like screaming at him and telling him ok go ahead and fall, who is going to pick you up cause it's not going to be me) Then he calms down. It's working so far, long may it continue. I sincerely hope you get some support to give you some time to being a daughter to your dad instead of his carer, you need this. Lots of love Nanny857 xx and sending you a special 💐💐💐

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