PSP Association
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Fed up with this now!

Well I finally made the decision that Keith would be safer in a care home and all I've done since he went in is cry my eyes out! I hate coming home to an empty house with no Keith but I keep trying to tell myself that the man I married is no longer with me. I've spent a lot of time over there and yes I'm not as tired and am getting more rest but am I less stressed? No is the answer!

As I speak I am sitting next to Keith in a hospital bed, he had another funny turn again in the care home and they had to call an ambulance, I spent the whole night last night by his bedside in the nightmare place we call A&E, he had a catheter put in and was put on a drip for antibiotics and fluid, well you can probably guess what he was trying to do, yes you're right he was trying to pull them out ALL night! I didn't dare leave his side! My son arrived at 8am and he made me go home for a few hours rest! I'm so tired, he's asleep at the moment and getting on everyone's nerves as he's snoring so much,but as soon as he wakes he starts again. He keeps saying when are we going home or shall we go out for a drink and then starts trying to climb over the bed rails! I'm so worried about him, feel as though I'm living an ongoing nightmare!

Need some support from all my friends on here please!

Love.... Pat xx

58 Replies
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You poor thing what a nightmare .Just keep focusing on the fact that you are doing absolutely the best thing for Keith and for you .Its going to be a hard period but we are all with you .It was a brave decision but the right one .I have afeeling that I shall not be far behind you .Just waiting for the out of hours DN's to sort out yet another catheter ..umpteenth one in two weeks .Anyway my thoughts and sympathy are with you .

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Thank you George, that's much appreciated! xx

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Oh, Pat, I am so sorry.I know that's exactly how Chris would be - pulling everything out and not knowing why.

Big hug and thinking of you. Love and hugs, Jean xxx

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Thanks Jean, it does help to chat! xx

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Dear Pat, Everything was the same for us, it has been a roller coaster, still is and probably always will be, we seem to be on the same roller coaster don't we, but, we will get through it all, I hate coming home to an empty house too, spend most of my time feeling guilty and crying, feel like I've abandoned my child.. sending you my love and we'll get together soon and probably cry together xxx

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Thank you dear Shirley, we are on the same ride definitely and I want to get off, I don't like it, I'm terrified!

Will message you soon....xx

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Now that is not a bad idea . You girls need to get together ,( if that is actually possible) and throw rocks off the cliff and scream and cry ....no throwing rocks at each other!

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Yes, we've met up a couple of times for lunch, we get on like a house on fire, well we've so much im common haven't we!

Thanks for your message, I think my phones about to die and I've forgotten my charger'....xx

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See you soon when the time is right, I'm always here xxx

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Aww Pat Pat Pat!!!! What a nightmare darling!! Well done on taking the hardest step with the home, but oh my, it must feel soooo strange coming home to an empty house! And now being at hospital, oh god, I know, beyond stressful and so bloody tiring!

What I'm gonna tell you is, I'm here, we're ALL here for you, so rant away! I've been thinking about you both a lot and am sending loads of love and strength to you!!

You WILL get through this, you have no other choice! Hugs galore ❤️

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Thanks Satt I'm so grateful for you all, you give me the strength to cope with this terrible situation!

Love and hugs....Pat xx

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Bless you Pat! No thx required!! How's EVERYTHING today? X

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Terrible, I'm just about to write another post! xx

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Oh god! Ok I await 💋

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I've just written a long post and its disappeared! Blast! I'll try again when I get home! xx

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Grrrrrr how bloody annoying!!!! X

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I'm always doing it!😂

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Maybe post tomorrow darling and try n get some rest x

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I will, I've only just got home xx

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Bless you! Try n get some sleep x

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Hey Pat I am so sorry . Not bad enough to make such a decision then your husband having all these issues! Well you made the decision....so now you can let that one go...no more worrying about it

Talk to his Dr to get him an antianxiety drug to get him to calm down about the IVs or just to be comfortable where he instead up and over his bed....

Nannab is a student of UN3 no wait 3univ.....oh nannab, I cannot remember yet again. At any rate its for seniors who want to continue their education or learn something new. This sort of thing , taking a class, will be good for you. Right now you are in a big lonely house, with no new memories being made. You need to find who you are again...what your interests are and what you are good at....Maybe it's knitting, Maybe it's acting....I think I would be rather good at spelunking since I have such a small frame! With my luck I would still get stuck and noone would be small enough to rescue me!hahahaa. But seriously, you need to find or renew your interests...sitting in a big lonely house leads only to crying......

Soo..What you interested in?

AVB

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When things have settled a bit I will think about what I can do with my life, I can't get my head round things at the moment, it's so hard but thank you for your message!

Love....Pat xx

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I totally agree. I think I was trying to take the more "everybody get happy positive road" rather than the sympathetic one that you needed.....nothing worse than someone telling you what a great ride it is when your'e stuck on the side of the road with a flat tire! But I do hope you find each day with a little cheer in it....

((HUGS))

AVB

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You have it Pat. Sending you a loving hug.

X

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Thanks Nanna, everyone here is so supportive, I know I'd lose the plot if it wasn't for all of you!

Love....Pat xx

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Pat you have done the right thing, you can see Keith whenever you like, he is just over the road, you get yourself strong so you can be there for him, which will be much better for him. Sending you a big hug, hope all goes well in the hospital, and Keith is out soon. I take my hat of to you Pat for being strong and making the right decision for yourself. Love to you Yvonne xxxx

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Yvonne I don't feel strong I feel I've let Keith down, it's an awful feeling!

Love....Pat xx

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Pat you have not let Keith down at all, you have done the best thing, for both of you, things will get better for you, give it time, it is still all new, remember when we first heard they had PSP, we did not know how hard things would be, we try to cope, and think we are, until we just collapse, through sheer exhaustion!!!!!! Keith will have the care he needs, but you won't be doing it, you will be there as his wife supporting him, and looking after his best interest, and coping because you are not exhausted, just think about it, Pat don't beat yourself up, you have done a wonderful job. Keith is just over the road, you can see him whenever you want, sending you a big hug. Yvonne xxxxxx

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😘😘😘

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Hi Pat, you have my support 100%. You have made a very brave desicion and by the sounds of it, not a moment too soon. PSP is doing its worst, it will settle down, they will get Keith into a stable condition. Let the professionals do their job. This isn't the first time they have dealt with these problems, they do know what they are doing. I know it's hard letting go, but you have to, for Keith's sake. Try and show a relaxed front, when with Keith, tell him to relax and trust the doctors. He is very frightened, show him he doesn't need to be.

Sending a very large hug and lots of love

Heady

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hi i agree with what has beeb said

;lol jillxxx

andbig hugsl

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Jill thank you, you're an absolute star, how are you?

Love....Pat xx

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Thank you Heady, how are things with you?

Love....Pat xx

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Muddling along!

Lots of love

Heady

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You've done the best you could do, and you still are! It's not as if you've given up on Keith, PSP (and all its nasty effects) has become bigger than both of you could handle. I hope things will settle down, so you both can find peace with this situation (if ever). My dad is not so far off a similar decision. I recently returned back to the States after two years living with him and my mum, on my next visit we are going to check out care homes, just to be ready, because that day will come.

Lots of love to you,

Lieve

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Thank you Lieve, it's such a hard decision but I knew I couldn't cope with how things are now, it's just so heartbreaking!

Love....Pat xx

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You poor thing.Its a hard decision you have made but you may feel less stressed eventually.My hubby pulledthe catheter pipe out yesterday.Wet everything,just before visitors arrived!Must go off to the vets for a change.Take care xx

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Thank you so much, don't mention catheters, I took my eyes off Keith for two minutes last night and he pulled it out, his bed looked like the chainsaw massacre!

Love Pat xx

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Dear Pat

I am sure you have made the right decision. It does seem very strange at first but the guilty feelings will wear off a bit when it becomes obvious that he is being well looked after and you can step back just a little. The very best thing about D being in the nursing home for the last two months of his life was the fact that the responsibility was shared. Remember you have NOT given up on him, you are merely sharing the responsibility with people who are experienced. You will be able to work as a team and by doing that Keith will get the best of care all the time.

Love

Vicki

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Thank you Vicki your words make a lot of sense and have made me feel more at peace with my decision!

Love....Pat xx

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Massive hugs to you. What an emotional and traumatic time for you all. . I hope you managed to get some rest in before going back to the hospital. Fingers crossed the antibiotics start doing their stuff and he settles down. X

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Thank you, I'm at the hospital now, they're letting him come out in the morning,

Love....Pat xx

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Thinking of you, but as the others have said, it was the right descision, you haven't abandoned him, you just couldn't cope on your own any more

Lots of love xxx

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Thank you Debbie!

Love....Pat xx

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I am with you on this one,my husband has been a nursing home for about a month its the hardest decision I have ever had to make,we have been married 52 years but after he broke his hip I couldn't cope anymore. So lonely but you come to terms with it as best you can.it's like mourning for someone but their still here. PSP is the cruelist illness. Xx

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Thank you, that's just what I say, it is like continual grief for the loss of the man you married, so so cruel! We've been married 46 years on January,

Love....Pat xx

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Oh Pat, just when you think you`ve learned to cope with one `stage` of PSP it throws something else at you. It sounds like you`re both having an awful time ... BUT .... things will settle down again, so hang on in there. You have been strong to last up till now, be brave again and things will settle down.

When you are exhausted everything is hard to cope with, so take your son`s advice and try to get some rest. Let the professionals do their job.

You ARE living in an ongoing nightmare - we all are - it`s called PSP !

xx

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We are yes but it does help to chat to all you lovely people on here, the only ones who truly understand, thank you,

Love....Pat xx

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Oh my dear Pat, I understand and am with you in spirit. I cry at such odd times too and don't look forward to what you're going through. Please reach out, we are all here to try to comfort you during this difficult time.

Cuttercat

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Thank you!

Love....Pat xx

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Big, Big, Big HUG! XX

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Likewise, thank you!

Love....Pat xx

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So sorry Pat. I know how hard this is, as I went through this non-stop during Kim's last 3-4 years, which seemed like an eternity. Whenever hospitalized, she would constantly tug on her IV lines to the point of pulling them out. And she despised the oximeter that they would have taped to her index finger. I know she had at least 20 of those replaced when she was in an inpatient rehab facility a couple of years ago. Even just days before her death while in the hospital, she pulled out her IV line, so they had to put her arm on a splint and wrap it up with lots of gauze to keep her from pulling the line back out.

Keeping you in my prayers.

Ketchupman

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Thanks Ketchupman, it's so strange what this illness does to people, it's the similar strange obsessions in all of them isn't it?

How are you doing? I think about you often!

Love Pat...,xx

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Thanks Pat! I'm doing OK. Trying to always stay busy. Still actively leading my support group for PSP/MSA/CBD and serving at Curepsp.org. I'm actually giving a presentation tomorrow in front of about 350 people, where I will be discussing the value of support groups. I always got a lot out of our monthly meetings and enjoyed sharing the tips I learned along life's way in dealing with PSP. And I continue to look forward to our daily posts at HealthUnlocked.

Take good care of yourself!

Love, DAN

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Thanks Dan I'll try but it's not easy as you know too well! xx

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That old enemy 'guilt' is a horrible emotion, I am very good at feeling guilty but I think ŵe should try to think sensibly and do what is the right thing when things get too tough to cope with on our own. I hope Keith is responding to the antibiotics and being a good boy with his catheter, I so feel for you both and what you are going through, life sometimes seems so unfair. It is strange being in an empty house, Ben was 12 weeks in hospital and after visits I just sat or wander around the house doing nothing when there was in fact loads of jobs that needed doing. I had to talk to myself to get cracking and if I did it did pass the time more quickly. I realise yours is a different situation as you know he isn't coming home and that is very hard to deal with. Is it possible to get councelling with the hospice, I found that a great help, it made me understand my feelings and realise they are normal under such horrible circumstances. My heart goes out to you both Pat and I so hope that things settle down and he is happy in the home which will make you feel you have done the right thing.

Love and hugs

Kate xxx

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Hi Pat

Its not the same and my heart goes out to you as I would hate to be parted from my husband but my dad has been fast tracked for CHC and is now in a nursing home. I should be happy as he is well cared for and likes it there but I feel so guilty as I know he never wanted to end up in a home. The nurses came to the conclusion at the hospital that my dad had gone down hill so quickly that I wouldn't be able to care for him in his own home. I know they are right but it doesn't make me feel any better. I never know what dad is going to be like when i see him. Whether it will be a good day for him or another bad one. I feel this awful disease is taking my lovely caring dad and turning him into an unpredictable sometimes aggresive person I just don't know. One thing I must say though that is although like you the stress is still there because no one will look after our loved ones like us, I have found that they are just so lovely with my dad and try to accomodate all his needs I really can't fault them. It is also lovely that I have quality time with my dad rather than cooking cleaning and chasing him around the house as boy my dad is fast on his feet. I can just sit ( or walk/run with him) have cuddles and just be with my dad.

I no longer worry about what people think of my dad's moods etc and you must try to too. It helps to have a sense of humour and try to let the shouting/name calling go over your head. When times are really tough I remember all the good times and fun we have as there are far more of those and put the bad ones locked away. Just remember although hard you made the right decision. I am thinking of you, stay strong, sending you lots of love xx millie 1218

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