Today I'm feeling guilty, I have pushed so much for some help with my husband and now I've got carers coming in I feel as though I should be doing everything myself! Keith has accepted the fact that we now need help but I can't help feeling like this and just want to keep bursting into tears every time I see them showering and dressing him. I also feel angry at PSP for stealing him from me and worry so much about how bad he may get! 😢
Pat x
Don't feel guilty, you are still there, and you will be able to do more things Keith and you won't be so tired, your love for him is there and he knows it, just enjoy your time with Keith, we all hate this PSP, and I worry as well how bad it will get, all you can do is take one day at a time, look after each other Yvonne xxxxxxx
Thank you Yvonne, I do try to take one day at a time and some days are better than others. I am a nervous wreck every time he gets up and tries to walk with his frame and am in constant fear of him falling! Doing the best I can to make him safe but it's so hard isn't it? Ideally I would like to pad all the walls and floors, wrap him in cotton wool and make him wear a crash helmet!
Love to you....Pat
Quite a natural feeling Pat. Mine passed, I hope yours does. During the week I take a leisurely shower when Colin is having his and as the carers are only here for 30 minutes at the weekend, all I have time to do is make the bed, have a cup f tea and they have gone. Make the most of any time you can. In the whole scheme of things it's such a small amount as I expect, like most of us carers, you have very little time to yourself. Relax and enjoy.....if you can.
X
Thanks NannaB,
I try to make the most of the time I have usually by sitting outside with a coffee whilst still feeling guilty! I hope this will pass as you say and I can adapt to our new circumstances! How your life can suddenly change so much is very distressing but Hey Ho I will just have to get on with it and do the best I can for Keith....
Sending you love....Pat xx
Hi Pat, please don't feel guilty. You can't be a carer 24/7, although we all try! I am getting close to having to accept carers coming in and I am dreading it.
All I will say, is something a fellow carer said to me, if somebody does these sort of jobs for me, I can go back to being a wife again, for a while! That's got to be worth a little guilt feeling.
Spend the time planning to do something, you will have more energy for now, take him out lunch, walk in the park. Anything you were starting to give up, due to your tiredness!
Feel angry with PSP, but try to stop worrying about tomorrow, today's challanges are enough to be going on with!!!!
Lots of love
Heady
Thanks Heady,
As always you always give such good advice and support!
I have found it hard to deal with all these strangers coming into our home, we have had a reablement team in the morning for four weeks now to assess how much help Keith needs, they are applying for more help for me in the evenings as well. Tomorrow a new permanent team of three carers are coming, we have just adapted to one group and we'll have to start again with the new one! Although saying that we have both become quite fond of the carers, they are lovely, special people who I think must be hand picked for the job!
At the moment I am getting ready to take Keith out for a drive and possibly a pub lunch, we have been supplied with a wheelchair now but I find it difficult to push him up the hill in front of our house so I have to drive to somewhere flat! Wish me luck it's our first outing with the wheelchair and I am 5ft nothing and only used to pushing grandchildren in buggies!
Thank you for your advice, sending my love to you....Patxx
How I can relate to this post. We had reablement for a while but I always seemed to have him done before they got here because of his refusal to wait for the girls and I felt able to do him on my own. It got to the stage that he had several infections one after the other so I had to bite the bullet and not just ask for help but beg for it.
We have a compromise now. We have one carer in the morning and I act as the 2nd carer and we have 2 carers at night and when they arrive I get myself a glass of wine and put my feet up. I still find it strange haveing people in to do a job that I feel I should be doing. But they do make sure I am involved with what is going on etc. Hope you can get comfortable with the situation soon. Janexx
Hi Pat, best of luck with pushing the wheelchair. We have just bought a walker that doubles up to a wheelchair. Excellent and studier for walking with, slightly harder pushing. First time I pushed S, I hit a curb and nearly sent him flying, just managed to grab hold of him by his coat, to stop him going head first out of the chair. Bit more careful now and he clings on slightly tighter!!!
Hope you had a lovely lunch.
Lots of love
Heady
Hi again Heady,
Just got home, both of us just about in one piece! We went to our beautiful local park, had a coffee and sat watching the world go by eating ice-creams! I was ok until I hit a slight slope and had a job to hold Keith back, he nearly went to join the ducks in the lake! When we got home I struggled getting the wheelchair out of the car, I'd got one of the seat belts stuck in the wheel frame, managed it though after a lot of muttering under my breath!
The weather is gorgeous at the minute and it's lovely to get out in the sunshine feeling slightly more normal. I couldn't help feeling envious of the many couples walking around hand in hand though, if only things were how they used to be, I will never understand why it's happened to Keith, he is one of the nicest people you could ever wish to meet and doesn't deserve this at all! He's still hoping the doctors have got it wrong or for a miracle cure 😔
We've decided to have a Chinese takeaway tonight and chill out a bit!
Speak soon
Love Pat xx
Hi everyone,
I have just been reading all the replies to Patricipmr' post.
I have found all the replies very useful advice because I too am on the brink of having to arrange to have carers in and have been wondering how I will feel, what I will do when they are doing the jobs that I should be doing and wondering how to get over the feeling of guilt that I know that I will surely feel.
Now At least I will have a picture in my mind of others in the same position as me and I am sure it will help....thanks to you all very much
Den B x
Hi Den B,
I too was very hesitant about asking for help as I thought it was my place to do it. Soon I realised that I just couldn't do everything, Keith was such a good help to me around the house, I was spoilt really and it came as a big shock to me when everything changed and I was responsible for everything. I think you finally realise it's impossible to be on the go 24/7 and you have to accept help in the end. It's better for both of you, what support can you give if you're constantly shattered? On a lighter note to be honest I think Keith may be enjoying all the fuss made of him by all these women!
Thinking of you and hope you get the help you need!
Love....Pat
Oh, how very close we are to your stage with carers and wheelchairs, although you are finding it hard you sound very sweet and a great motivator , we are waiting for our wheelchair, I've had a few practice runs at our loca garden centre and like you, we've had to watch the slopes./Patriciapmr, same with me, I try to do everything but it's not possible xx
Hi Nanonthenet,
Thank you very much for your kind words, they put a smile on my face!
I'm so glad I found this site and the lovely people on it, its been such a great help and support to me in the situation I find myself in. We all think "that won't happen to me" don't we, I can remember before Keith was diagnosed I did a lot of online research (like you do!) and came across PSP and just pushed it to one side thinking "That's way too rare it couldn't possibly be that!" But in the back of my mind I think I always knew, when you're with someone all the time you see all the signs but don't want to accept it do you?
I send my love and best wishes to you both and good luck with the wheelchair (Stay on flat ground whatever you do!)
Lots of love....Pat xx
And watch out for your big toe!!! Mine has been de-skinned and it bloody hurts!!!!!!
Lots of love
Heady
I'm just now getting extra help from neighbors and they mean well but I have this guilty conscience that I am not doing enough. They tell me how to clean my house, what to tell the doctors, to leave the past and junk that no longer serves--I already know all this. My brain is about to explode with this knowledge. I have to work to keep money flowing--about to lose my house, already out of business, and now working minimum wage. Before we went down (recession), my husband did it all when it came to taxes and paperwork, while I ran the stores, and then we went bankrupt. That's when PSP snuck into our lives. He lost his job, we lost our stores and now I'm losing him. I pray for relief somewhere. I get frustrated if not reactive when people tell me to do this and that. I'm tired and I'm venting. Oh well. This is life and how I tend it determines my fate. God is a process. And as he works through me, I breathe the next moment. Prayer in its essence.
Patricia, each caregiver is different. There are no absolutes when caregiving and your attitude toward it. Some can do it all themselves, I did, but others need help. Neither one of these is the "correct" attitude or method. They both work. Don't feel guilt because if you do then you are allowing PSP to define who you are!!! Jimbo
Pat,
There are certain posts that just bring about vivid memories. This is one. My wife, who passed away 2 years ago, did exactly that and I had the same feelings that you are expressing. Unfortunately there was nothing that I found to address what appeared to be anxiety and her need to pace. I only tried to protect her, because I was unable to keep were from wandering and pacing. I bought a soccer style head protector because she would bump her head in doorways because she leaned so much.
Your feelings are very normal and I found this forum to be very supportive and reassuring. You have friends here that will help you in these frustrating times.
Wishing you strength and wisdom as you deal with this cruel disease,
Bobby
Ahh I know how you feel to a certain extent. I’ve had to place my dad into a care home today (he now requires 24/7 care) and after I left him he called saying how much he hates it and to come straight back and get him. I feel distraught but I have a young family and can’t look after him myself. You are doing everything you can in your husband and the fact he is home with you is amazing! You should feel proud that you now have the means to live a more comfortable life but also get him the help he requires. You can’t do it all and this way the time you spend with him won’t all be focused on his care and you can spend some more quality time together.
Hi Kellsbelles - I'm so pleased for you that you managed to sort a care home. You will still be in touch with him and you are probably going to have to advocate for him at the care home so you will still be helping him. The care home my mum is in is raved about by everyone locally as amazing but I've had to raise all sorts of issues with them because they just don't understand mum's needs. More than once I've had to say that it's not like Parkinson's so just because they think they understand Parkinson's as they've had other patients that's no use in understanding CBS/PSP. Hang on in there! It's extra hard at the moment with the lock down restrictions on care homes.
Hello, yes, things haven’t been going well sadly. My dad keeps trying to escape the home- he can barely walk so that has resulted in falls. He’s also been aggressive and violent to the staff who try and stop him, so now they have had to hire agency workers to be with him 24/7- as an extra cost of £13 an hour- which brings the weekly costs up to £3000 again. Really feel like I’m at a brick wall. Nursing homes can’t cope and he can’t afford to stay at home. We really just need to be assessed for CHC but they are still shut. Sorry to moan. Just so fed up.
Oh dear - that sounds really grim. Have you talked to the GP about medication to deal with the anxiety or aggression? The disease is obviously really affecting those parts of his brain.
Confused, guilty and bereft
Helpless and Guilty
Fed up and guilty 
