Just been inform that neurologist thinks this may be my husband a diagnosis! Trong to be strong to be positive but help!
Peacerose: Just been inform that neurologist... - PSP Association
Peacerose
18 Replies
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It's a terrible shock, but you will get through it. Believe me, it is not the end of the world, even if it sometimes feels like it. hang on.
in reply to easterncedar
Thanks ! Support a!ways helps.
Hi Peacerose, I know you have read my comments to Katet, I'm glad you found it helpful.
Caring for your husband is a whole different ball game! My husband has PSP as well. Katet, was the one who can help, you are the one that needs it! PLEASE, PLEASE accept any offer you get, ask when you need it, even ask for help when you don't, so you get use to people doing things for you. Don't solider on, thinking everything is fine, because it's not! I know! I won't let anyone help me and I am struggling big style! Yes, I am very positive, I know this is the only thing that works. Someone did take S out for lunch last week, I spent the whole time in tears, knowing how much I needed that break.
Read the article that Easterncedar has posted, it's brilliant. If you can go with half of what it says, you will be fine.
Keep posting, this site is the best help out there!!!
Lots of love
Heady
Sorry I'm late with this post but having started a message i was interrupted and somehow lost it. Anyway I just want to reinforce the above remarks concerning help. On the professional side I found an occupational therapist a great help in getting equipment that made life physically easier for me, the professional carers and greatly improved my wife's comfort. In fact from the time the professional care workers were involved a full assessment of the manhandling requirements was made; rightly carers are not supposed to lift patients in order to protect their own health, as a spouse that didn't seem to matter!
Where to start getting the help will vary, some start with their GP who puts them in contact with the relevant services. In my case it was a local nonresidential hospice who pointed me in the right direction. All I asked for was cover so that I could get one uninterrupted nights sleep a week but once social services got involved and an assessor came along, all sorts of avenues opened up. Eventually this included assistance in installing a wet room. I am aware that is not a universal response from social services but my experience was nothing short of first class.
In brief, help from friends, family and professionals should be welcomed with open arms. Medically not much can be done for those with PSP at the moment, but having a variety of visitors has the added advantage that it will lighten the day for you both.
Very best wishes.
Jerry.
in reply to quickgel
Thank you so much.
Here's my advice (I've been there as a caregiver). First, once you've had the initial discussion stop talking about PSP the disease. You can't change anything much with PSP so talking about the final days is futile and depressing. Don't worry about what "stage" you are in. Again, you can't change it and PSP is different for everyone I've ever talked too. Literally take one day at a time. Relish the "good" days and put the "bad" days behind you. Get your legal documents in order. Discuss if it comes to the doctor suggesting feeding tubes do you want one or not. Once you have made the decision don't go back and talk about it again. Keep in mind that there are NO cures for PSP. The only treatments are to deal with the symptoms and not PSP itself. Try everything you think might work for your loved one. You have nothing to loose. Have no regrets about what happens in any one day. Apologize for the mishaps and move onward. You only have to be guilty if you do something delibertly to hurt or harm your loved one. Accidents happen. Remember, your loved one will change and at times act out of their "ordinary" mode. Put those things behind you and move forward. If you do your best you'll have no regrets when the end comes. You must love, love, love, love, love,.....continually. Touching will reassure the loved one that you are there for them. Just a gentle rub on the shoulders or arms or legs will be much appreciated by them. If you pout out your love when the end comes and death takes the loved one you won't have regrets. I and many others are here for you. I will send you how to set up your computer so you will be on top of all the latest things about PSP that are posted anywhere, yes anywhere, on the Web. Jim.pierce@gmail.com
Hugs to you! Jimbo
in reply to jimandsharynp
What a great message to receive when I switched on! I couldn't agree more,keep going over things do sent help and I have noticed hubby doesn't really wish to know anyway big thanks!
Peacerose, you are not alone, don't ever forget that. Once the shock is over get informed. Read everything you can get your hands on because from here on in you are his advocate. It really help to focus on what you can do instead of what he can no longer do. None of this is fair for any of us and yet we deal with it on a daily basis. We berate ourselves for not being perfect, and once (in a great while) pat ourselves on the back for a "good" day. But mostly we revel in the little things. We try to be as loving and kind as we can and set the bar over and over for the new normal. Welcome. JGC
in reply to goldcap
As you say you try but when emotions chags you sometimes trying is not emough!
Heady in reply to
Hi Peacerose,
I agree, there are times when no matter what you do or try, it appears that you are failing. I expect you have been reading all our comments, thinking, I will never be able to cope like they are!
First - if your husband gets through the day, fed and watered and is well. You have succeeded!!!
Second - we all type a good game, very few of us actually follow any of the advice we gayly give out!!!
We all struggle. You are not the only one. Yes, we all know what we should do and some days we do achieve it, but there are loads of times we just flounder around, screaming that we can't cope!
You will find a way to get through. The one thing that works for me, is to be positive and be as active as S is capable of doing. Go out as much as possible. There is nothing more depressing than just sitting at home. I am learning, just to go out for a drive. It's wonderful, no falling, no demands. Plan to stop every hour for the toilet and make sure you have a bottle, so that's not a problem.
Another thing I do, is make a list of the things I must do the next day. It gives the day purpose, gets those annoying jobs done that you have been putting off. The feeling of achievement, when you have ticked off all the items is precious. I know, little things, but I have found it's the little things that you can control, it the little things that get you down the most. It's the little things that others can help you with. You can even get your husband to try and take care of some of the little things in daily life. I do struggle getting the last one achieved!!!
I know having the diagnosis is a huge shock. But at least you do know what you are facing. It does help knowing what you have to fight, you will know what you can and can't do. I'm sure, like the rest of us, you kept trying different things to help your husband. Well, now you know what will work and what is a waste of time and energy.
So from now onwards, just concentrate on what you and your husband can do, the rest is in the past and should be filed in the pleasant memories box.
Lots of love
Heady
in reply to Heady
Thank you all sounds positive!
in reply to Heady
Its working slow but sure as they say up and own!! Hope life for you is being kind.
Peacerose - you will become the "resident expert" - be prepared to dig in your heels if you are not getting the answers you seek from "professionals" who have not come across PSP before. Think of it as you doing them a favour, furthering their knowledge!
Best of luck, and wishing you strength,
Mo
in reply to wifemo
Thank you.
in reply to wifemo
Good advice as you say its not easy to be assertive but it does help.
HI PEACEROSE
I AGRE WITH EVERYTHING WHICH HAS BEEN SAID ABOVE
PLZ `CCEPTE WHATEVER HELP YOU CAN GE T
IT WILL KEEP YOU SANE
LOL JILL
PSP SUFFERER IN UK
in reply to jillannf6
Thanks
in reply to jillannf6
Thanks! I need to keep sane!
