Hi all, just thought I would connect with everyone as I haven't for a while, and I think I need to.
I'm feeling really down, C is his usual ok, but I just feel so pissed off, I've had to put in a claim for housing benefit this week, and I have never in my whole life felt so degraded, sitting there while they go through all the paperwork to ensure I've given them everything, I just felt awful and wanted to run out, now I just have to wait to see if we qualify for it i suppose, don't know what I'm meant to do if we don't, but can't and won't worry about that now as that does not help anyone. it wasn't meant to be like this, this isn't how I thought I would be living at 60, we shud have been having fun or something but not this. I haven't been anywhere in weeks, just walking up the road to shops and walking the dog, I'm usually out and about with the grandchildren having picnics and fun, now the best I can do is put a blanket on the floor and have it in doors. Feel so trapped.
Does anyone else or has anyone else felt like this, I'm hoping to pick myself up, just finding it hard.
Thanks for listening
Love and hugs
Helen xx
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Helen119
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I do know how you feel, Helen, and sympathize entirely. I wish your having my perspective now could help, but I don't think it really can. You are in it, and that's all there is. Now that I am through it, I would give everything to be back. I miss my Henry so much, so much. I wish I had known how little time we had left, when things were at their worst.
Still, I realized the other day that I had just had an actual conversation with my most patient friend/listener at work, she who took her breaks with me every day and heard me worry and vent as we had a little walk, enduring my daily narrative of the current worry, trauma and crisis almost every weekday for the past three years. We are talking about other things now. Happy things, funny things, ordinary living things, gardens and pets and books. A different life is coming to me, whether I look for it or not.
Someday it will come to you, too. Hang on. You are doing a very very hard thing, but it won't last forever.
Enjoy that picnic blanket on the floor. Treat yourself kindly. Have wine. Love and hugs. Sarah
I do know my time with Colin is limited, and I know I too will feel like you, wanting to turn the clocks back, I keep Bringing that to my mind, and try to be grateful for where I am today.
Sometimes you just have to let yourself feel down and discouraged, too. That's reality, and can't be denied or ignored. It's not right and it's not fair. I think I only got by because I just couldn't stand the idea of being beaten by the gremlins that laid this on us, and had to shake my tiny fist at them, growl, hug my sweetheart and keep fighting.
Hi Helen, we all bitched, screamed, whined and complained, just like EC. Nothing you are going through, is abnormal to anyone on this site. I'd like to say it will get easier, but you know I would be lying. All I can say is treasure every single second of being with your loved one. Let others, if you can, do their share of the caring, so you can do the most important job, being C's wife. Kids love adventures, why not have one in your lounge, decorate it, in whatever you feel like, have your picnics with Colin, he will love it. I promise, if you make an effort, the grandchildren will remember it for ever, the picnic with Grandad, what better memory can you give a child.
Life is extremely hard, where you are. Whilst physically, it will improve, on the other side, but I can tell you honestly, it is SHIT! Whilst I wouldn't wish another second added to Steve's life, with PSP. I want him back. I spent so much of my final months with Steve in a totally stressed state, but I did on very rare occassions, get it right, for this I will be eternally grateful. Make sure you can do the same. Lots of rest and help, will give you the time to make this happen.
Hi Helen, yes this PSP thing is the absolute pits. I pictured going into retirement as a time to enjoy new things and new places with W and having fun watching him play with our grandchildren, but PSP put a stop to that and I feel cheated big style. I hope your grandchildren get to visit you often, I find children bring lots of laughter with them. Hope your claim is successful and that lightens your load a little. Sending much love, Nanny857 x
Nothing will make this go away, you need help , refer yourselves to adult services if not already . Your local carers association have experts on hand to help you negotiate the maze of benefits .
I am a similar age and had to stop work when Rog worsened, is our life dreadful, yes if you compare to what we had, but I have learnt acceptance and with this nightmare that is some kind of peace. I swear, I kick the door I shout at him sometimes, but welcome with a smile everyone who comes to your door even when you want to scream inside b####r off! People have no idea what we are going through, we are living their worst nightmare and some people can be very smug in their own little bubble!
In a similar place, Helen. Not with housing benefit but with Chris and PSP.
Try not to feel upset about claiming benefit. I know I find lots of the "needing" this disease brings really difficult. I hate the loss of independence and hope that comes with PSP
I have just got home from a night in A&E and Chris is in hospital. Its reminded me of so much described above by Heady and EC
I have to stay strong to get the best for Chris and if I wasn't there he would feel abandoned.
I'm totally with you Anthea, I hate going out now, I sleep and sit on the sofa day in and day out, it's just there is no choice, but then I said it all, I dontt really like going out anyway, just have to get all that acceptance stuff into my head.
Hi Helen, I too feel trapped, Ben never wants to go out, the only time he goes out is to the hospice and that's when I have to get my jobs done. We have CHC funding but as yet little has changed in support to give me a break. He did have four nights in a nursing home but I couldn't settle because it was the first time I've handed him over to someone else's care, it takes a bit of getting used to. My son and daughter in law asked if it was possible to look after our two grandsons in the evening as they would like me to attend a wedding in London, it breaks my heart that I can say it's ok, I will have to try to get help as I can't look after a 4yr, 20 month and Ben all at the same time. It certainly makes you want to scream from the rooftops.
With you on this, I look after my grandchildren every evening during school term for a couple of hours, it's hard but they are lovely kids and my daughter needs me to have them.
I have managed to get 7 nights respite end of august, am dreading leaving him, but I know he will. E being cared for. I'm intending to take my 2 older grandchildren to my sisters for a few days, then come home for some peaceful time on my own.
Good that you have got respite. don't waste it emotionally. He will be all right so you must replenish your own resources. Enjoy your grand children. I have so many nourishing memories of time with our grand children.
Hi Helen, I feel the same way. This summer I spent a lot of time buying a railing for the bed, raise toilet seats with handles, etc. is this what we were supposed to do in our early 60s?. I know in my dreams we had a life.etc. I see a drastic decline in the three years since the slight feeling of dizziness began. My love is now using a walker all the time . I'm trying to enjoy the time we have together but we all know it's just not the same. In the US everything is an out of pocket expense unless you are very poor. With the little bit of money we do have, it makes us not eligible for home health care. At what point do you get your adult children involved. I know and as this disease progresses, I will definitely reach out more. Guess I'm still trying to believe this isn't really happening. Best wishes for the strength to endure what is ahead.
I know that feeling of being degraded, too. As if you are a child and cannot be believed - waiting to see if you qualify?? Give me a break.
I have a high school friend traveling with her husband across the US in her gigantic RV right now, posting photos on Facebook all the way!!!! and we can't even get to my son's cottage on an island where we have our own free room to stay OMGosh a smiley face in italics - lol - I have no idea where the italics came from - I must have hit something - don't know what??!! I like them, actually I'm not feeling trapped , yet :{ I've enjoyed getting to stay home with my stuff. I hated having something going on every single day - i.e. babysitting/hanging out with grandkids at the Mall - taking care of 90 yr. old parents - I belonged to an artists group and took classes. PSP put the brakes on that stuff. It is working out for now.. I'm getting good sleep, too. I hope I'm not putting a curse on it all by my good review of my situation ~
I hope you get the answers you need soon and keep walking the dog.
You have a every right to be angry at what PSP has taken from you. You need to take time out occationally and morn the loss of that life you expected. Then you will wipe the tears, go do what you need to do for your love and learn to enjoy the smallest of moments that before you may not have noticed.
Hugs to you and to everyone who is caring for a loved one with PSP.
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OMGosh a smiley face in italics - lol - I have no idea where the italics came from - I must have hit something - don't know what??!! I like them, actually 
I'm not feeling trapped , yet :{ I've enjoyed getting to stay home with my stuff. I hated having something going on every single day - i.e. babysitting/hanging out with grandkids at the Mall - taking care of 90 yr. old parents - I belonged to an artists group and took classes. PSP put the brakes on that stuff. It is working out for now.. I'm getting good sleep, too. I hope I'm not putting a curse on it all by my good review of my situation ~ 
PSP and HD B1 Thiamine
Hospital 
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