As time goes by I am becoming more depressed about my wife's PSP............living with someone you love dying before your eyes every day is almost intolerable. And I feel so guilty not able help more.......physically and mentally I am drained, and of course feel rubbish for being so useless. PSP destroys more than the person diagnosed.
Feel so s'''t: As time goes by I am becoming... - PSP Association
Feel so s'''t
Written by
humphers
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57 Replies
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Could not agree with you more, bloody drained myself after the last few days, so tired, we can only do what we can, and that is good for the people we care for, they have our love and we protect them, love them and are always there for them. I am 100% sure they appreciate everything we do for them even though they don't show it. Don't beat yourself up, you are tired but you are there. Sending you a big hug, sounds like you need it. We have had a horrible 2 days without much sleep, a few falls, and a very grumpy man to look after. Yvonne xxxx
Thank you Yvonne XXX
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So sorry your days have been so hard. Try to take a mental break maybe a long soak in the tub. Praying for God t o give you new strength. Love you sending a hug from Texas 😎
Completely agree with you. PSP is just horrific for everyone involved. The fact you and so many others are there everyday for their loved ones is what matters. To know that you are doing everything possible, being a voice for them when they can no longer communicate, fighting their corner. It isn't easy by any means.
There are lots of lows but also some highs, cherish the highs. My mum is very late stage now, free fall in her condition over the last 4-5 weeks. It is extremely difficult to watch and a lot of tears. If you believe in God, then praying helps, we just pray for ease for us and everyone that is suffering. Look after yourself and talk to family and friends don't keep it inside.
So we'll said! I could not do this without God. Praying for all these wonderful caregivers🌷⚘🥀💐🌸🌼🌻🌹🌾
Stages? Where is info on this?
very painful Remember they can't help it. It was not their choice. You have to try and take care of yourself I have gone threw it and it's awefull. Take breaks. Get help in even if they just sit with them and you break. One foot in front of the other. You are not god and neither are doctors wait hardly any drs know about this disease. Don't beat yourself up. Psp is awful. There is no cure. If keeping wife at home roll with it. Nothing else you can do. I miss Dave bad. Enjoy them as much as you can and cry cry cry cry as much as you need to but don't do it in front of them or let them hear you. There is no controlling psp it goes the way it goes Take care of yourself. I think about a lot of you dealing with this
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Thank you
It is horrible and depressing. You should not feel guilty. You can only do so much. Dad was in a nursing home. Even though I wasn't caring for him myself it was emotionally draining. It was more than I could do physically and I too felt guilty. But getting help sometimes is what's needed to take care of them. Don't feel guilty. Find some help so that you can rest and do something for yourself. We forget sometimes to put ourselves first. If we aren't well then we aren't much use for them. You are coming to a great place for emotional support. Hang in there. Hugs and prayers to you both.
Hi, when was the last time you took a rest away from PSP? Giving yourself a break, is essential in the care of your wife. You have to be 100% at the top of your game, to be able to care 24/7. If you able, get some respite. A week, back in the world, will give you the strength to carry on. If that is not possible, an hour pounding the streets, will work wonders.
We all think only we are capable of looking after our loved ones. Complete rubbish!!! Anybody can do the day to day caring, only you can be a husband to your wife. Please make sure you have the time and strength to do this. This is all she really needs.
Steve's journey ended 7 months ago, my biggest regret, is I fought having care in until it was too late, therefore I was always exhausted and not his wife. Thankfully, I did have loads of help at the end and he died with me being his wife. I had three days out of the six years of caring, please make sure you have more than that.
Lots of love
Anne
Hi Humphers
Do not feel guilty you need to feel good and positive I know at times it hard but we all feel the same at some point
Try and sort out carers and time for you to leave the house a few times a week
Get yourself away and it will break your day by doing different things instead of doing everything at home
Please take care and your on the best site to moan and groan or the enjoyment you have with your wife everybody on here as always willing to reply
Hugs
Sue xx
Dear humphe. Don't beat yourself up.
We all do what we can, and no more to get through each day. Althea 💛🙏
There are definitely two people suffering on the PSP journey, I don't think I understood the impact on the sufferer and carer until I was plunged into the caring role. My sentiments are exactly the same as yours, you just want to wave a magic wand and make things better. Lots of people drop in to visit us but see us when Ben is in his chair, all washed and shaved, fed, etc etc and they just don't see what goes on behind the scenes and can't possibly understand the impact on your lives because you have to have been there to know that. I can sense their pity and that's not a good feeling, you don't want to be pitied. Unfortunately that's the way it is and you just have to bite the bullet and get on with it.
Love Kate xxx
Same here. Barry sitting in his chair, washed. shaved etc! Nobody will ever know what it took to get him there.
My prayers are with you dear. 💛🙏 Althea
Its a double-edged sword, isn't it ?
We put on a good show and then no-one knows the effort that went into it.
But we all know !!
x
x
Thank you Kate.......seems nobody understands how devastating PSP is........try to explain to the nurses/medics but for some reason they just don't get it.........had to gently upbraid the carers for telling Elaine to "open your eyes".......told them it's part of the condition PALSY........still not sure they understand.....what can you do? xxx
What everyone has said is so true. They have either already been through this to the end or facing the end in the near future. It is exhausting for the carer. But I can only imagine what it's like for the one with PSP. The one who can barely communicate to tell us when they're bored, when they're hungry, when they're wet, when they hurt, or when they just want to tell us how much they love us and appreciate what we're doing for them. For most things in life, I have been able to control things. If something was broken, I could either fix it or buy a new one. If I hated my job, I could try to find a new one. If one of us injured ourselves, we could almost always get healed with the right medication, bandages, casts, surgery, etc. If we had an argument, we could talk things over and eventually resolve things. If we went into debt, we could find ways to save and eventually reduce our indebtedness. Everything was controllable. Or so I thought. And then along came Mr. PSP. That bastard. He came into both our lives and we both lost control. And he ultimately took my most prized possession on earth, my wife.
Ketchupman
Yes! Swear as much as you want to and I'll join you. PSP is a thief. He steals dignity and time. BUT cannot steal love. God bless you ketchup.
💛🙏 Althea
So true God Bless you
Bastard is right.....sorry for your loss......but you have articulated the madness that is PSP brilliantly......wish you all the luck in the world x
As every one has said the lack of control over what is happening is unbearably painful. I feel I have to represent Chris to the world as he can no longer do it. He was so protective of me it must be unbearable for him to see me so desperate at times. I agree about not needing to feel guilty but don't know where the " off " switch is. !!
We can only support each other in this nightmare, knowing that when it ends we have another one to face.
Not a comforting post I know ! But I can't do platitudes.
love from Jean x
My prayers are with you Jean. 💛🙏
Amen
X
Agree totally. I am constantly being told that I need to have a life too but I have no interest or time for it.
Hi, to be a good Carer for your loved one, it is extremely important you find the time and the energy to be able to get out occassionally. If you crash, who will do the caring then? I did, several times during Steve's journey, it wasn't pretty. I did so much damage to both of us, mentally, all because I was too proud to ask for help. Eventually I accepted regular respite weeks, that ensured I was capable of looking after Steve, until the end. Please listen to those who are trying to help.
Lots of love
Anne
So true don't know where to stop and do something fun .
Yes it does. The whole family is affected. I have good and very bad days. dealing with the knowledge of how this disease progresses and seeing it happening is more than most people can endure. Very tired of people saying I'm so strong...I have no choice. Sounds silly, but hoping for a miracle. Take care. Joan
What can you say? I have a weeks respite every twelve weeks, chc fund it , lets face it i am still a cheap option, in the nicest possible way! Rog has live in care while i am away.
Yes its hard yes i cry when i leave him but i come back rested and ready for what is thrown at us next.
I am away in a week and i am not being disloyal but i am looking forward to spending quality time with my family and grandson.
The bizarre thing is rog's speech improves when i am away😊 does'nt last long but hey ho.
Julie packing as we speak!
Julie. Its essential for both of you !!!
Enjoy. Love, Jean xx
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X
Enjoy your rest 💛🙏
At present Chris is in hospital with an infection. I'm amazed at how much energy I feel after a couple of days. And Chris has slept through the night for ages. Its the being "on alert " that exhausts.
But I can't wait to have him home because he is just going to drift away in there. I'm not ready to give up the fight. I don't want him to feel he is on his own.
You cannot wave a magic wand but you are not useless, humphers. i know when I hold Chris' hand it matters.
Jean xx
The loved ones of the person with PSP, especially those on the every day front lines - suffer more than anyone imagines. I know because I am one of those people. My husband died in December after, at least, a seven year battle. It's hard to know just when he showed symptoms, because a personality change came first, and it wasn't easy to know where to attribute the changes. I was unsure whether I was going to be able to continue living with my spouse of almost 30 years. He suddenly became combative and impossible. I was mentally preparing to leave.... then after some physical changes showed up, he was eventually diagnosed with PSP. My feelings for him had already begun to cut off, to fade in self defense... but after he was diagnosed I was required to attempt to switch deadening feelings back on and stay for the worst imaginable ride of my life in order to care for him. He needed me, but he pushed me away with his impossible personality changes. We didn't have any family close enough in distance to help on a regular basis, and I had to continue to hold my full time job.
So life became very difficult. I had to hire and manage people in and out of my house while I was gone, then take over after working as an elementary school teacher all day. I was woken constantly and he would demand, push limits, and often fall while in my care. My back was wrenched and injured from having to pick him up off the floor, oftentimes in the middle of the night. It was hard to be patient and kind, and his demanding new personality didn't help bring out the best in me. I was overstressed, overworked, overwhelmed, and angry about what was happening to us.
It became completely unmanageable to keep him at home as he was a physical danger to himself and the house couldn't accommodate his growing needs. He was moved to an assisted living facility less than ten minutes from home, and that is where he spent the last sixteen months of his life. I would go there every day after work to help him with his dinner, take him around the lake in his wheelchair, and try to find ways to keep him feeling like he was alive and still loved. It was so difficult to watch him lose one piece after another of himself - a once exceptionally talented artist and independent, loving husband and father. A fun and memorable friend. He was never a person who could easily fade away.
I spent a year angry, and I grieved during all the changes and stages of PSP, while he slowly faded from the man he once was. It was a journey I would never have chosen. I am grieving still, of course, and I imagine I always will to some extent. Life has taken a wrong turn, and I'm on an unexpected road.
After he died, there was relief from the impossible life I was leading while he was sick, and there was certainly relief in knowing that he was no longer being tormented by this most cruel disease. But there is a sadness that comes over me that can't easily be controlled. It has to be faced and I must let it take me when it comes. Then I will recover and feel like I'm fine... until the next wave of sadness sets in. I miss him every day, and sometimes the loneliness is deep. Ultimately, I am left with a feeling of unending love for the love of my life whose journey took a very dark turn. He needed me to help him navigate through the darkness, and I did. We don't lose the relationships and love we have had. They live on in our memories and our thoughts. It's just different than it was when they were here with us.
Be good to yourself, forgive yourself for the "should've's" and hold all your good memories close. In time, you can let the bad memories fade. You will have that choice.
Hugs,
Horsegirl
What a tragic story. Its so painful to hear the suffering that these long lasting diseases cause. The loss of the person is unbearable.
love and peace to you, Jean xx
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