Thanks guys and gals for all your comprehensive responses , they really do help. There are so many variables aren,t there . It depends how far the down the PSP path you are - and what different twists and turns it has taken .I think what I have learned from you all is that you encourage when you can and at other times just surrender to the inevitable . My mother used to say "do what you can and can what you can't " ! I have absolutely no idea what she meant and if I asked her she would give an enigmatic smile and say " it's obvious isn't it " leaving me none the wiser .I do find it helpful talking to you all on this site as it clarifies things in my mind where I have, quite often just through tiredness, got bogged down with how to look at things . I also suffer from The Little Red Hen syndrome - this was a children's story about a hen who was trying to bake a cake and asked the other animals one by one to help and when they wouldn't said "well I will do it myself " the dreadful moral of the story to me seemed to be don't ask for help as you won't get any so it's best to get on and do the job by yourself . I am sure a psychologist would have a field day with it and probably my interpretation of it- it has scarred me for life and even plays a large part in my daughter's life . I suppose what I am saying in a round-a-bout way is that I have always found it difficult to ask for help preferring to "do it myself " but this site has been an eyeopener for me in the generosity of spirit and the advice and experiences that come pouring out from all round the globe .Whether it is the responses of PSP sufferers who so bravely carry on in the face of so many problems or carers who have illness or ailments themselves and yet find time to be sympathetic and understanding- at long last I feel able to ask for help.And that's quite an admission for me - thanks .
Carers dilemma responses: Thanks guys and... - PSP Association
Carers dilemma responses
You have to look after yourself to be able to look after someone else no matter how much you do it is still very hard to ask for help take care carers
I will second that. Mary E. Yu have to take care Mind / body of yourself Take a break Evan for just a few hrs Works amazing !!!!!! I went thru it !!!!!
Thank you again, Georgepa. You have said so beautifully what I have often felt, myself, in my troubles and in the help and loving kindness I have found here. I also quote the little red hen, quite frequently. One of my lifetime favorites. In one of my grandmother's books there was an inscription from a cousin from Wales. "For every ill under the sun, there is a remedy or there is none. If there is one, try to find it, if there is none, never mind it." I think that's close to what your mother's saying must mean. Love and peace, easterncedar
What a brilliant inscription. I'm going to write it down and frame it and hang it on the wall in our hall. I totally agree with the saying and have said similar myself, but never in such an eloquent way. Mine is, if I can't do anything about it, worrying isn't going to solve the problem, pray and hand it over. If I can do something about it, get on and do it.
X
Thanks, NannaB! it warms my heart to hear that.
Love it.
So glad you now feel ready to ask for help. Don't beat yourself up, I am a terrible one for soldiering on and have found it extremely difficult to ask for help myself until the first week of the new year when I reached rock botton (I have an condition that can become debilitating when I push myself too far) and I found our PSP specialist care advisor who just took over and everything was put in place within 3 weeks. She was a treasure.
We moved to an over 55+ retirement village last July and that has been the best thing I have done since the illness, I now have 24/7 assistance if and when I need which gives me more stress relief. Because everyone here is here because of some difficulty they are very in tune with when someone needs help and I guess they have pushed me to admit it is better to let them help and then they are more likely to ask themselves later. We have a motto here 'A little give and take is blessings in disguise.'
Georgepa...remember most times all we have are one another...ask anything anytime,best bwishes,Rollie
Thanks Rollie - I will . Spring on its way in Canada yet ?
Hi Georgepa...we,re still under 2-3 feet of snow at this end of the province ,we are living in the old homestead...that was our retirement plan when we were going to leave our business in Halifax,psp threw a curve in a lot of the events but we made it here ,it,s nice and quiet and the place where Madeline and I started going out together,back in grade 9,it seems like yesterday,the good thing is that I can see her as she was everywhere in this house,best regards to you both,Rollie
I understand totally about seeing the person you knew every where around you - that was the main reason for our not moving even though our house has steps and different levels and the property we (I) looked at was more manageable -it would have had nothing of my wife of 48 years about it as she would not have been able to have any significant input and I couldn't contemplate that in the end .
Georgepa, correct,we need all the help that is possible with this illness and memories are the scrapbook of our lives,best wishes,Rollie
Georgepa
I'm so glad you have come to a point that you are able to ask for help. I'm not there yet...mostly because I just don't know what to ask for, and I too have always found it easier to do things myself. Not always a good way to be! I have yet to find any of the medical people in my area who have ever heard of PSP/CBD, or care to find out anything. We have a new GP who when I asked if he was familiar with these diseases, he said "no never heard of them. You find out everything you can about them and let me know if I'm giving any medication that would be harmful." What??? I came home a cried out of frustration. Our neurologist is 2 hours away, my husband is a basket case by the time we get there. (even with anxiety medication) He just cannot tolerate riding in the car with so much traffic. So on goes the search. Maybe when I've built our "support team" I will then be able to ask for help and know what I need! I'm glad you made it to that point. You are an inspiration to us all.
LynnO
LynnO it sounds as if you have a rubbish Doctor he is the one who should be researching it for you - go give him an earful and tell him to do his job . Then get hold of your Community Matron (through Care In the Community or your surgery ) if you haven't already and she should start getting you a support team around you - Good luck . If you get stuck ask on this site and as you can see people are only too willing to give you the benefit of their own experiences. Georgepa
As I have heard said before "put your oxygen mask on before assisting children and other passengers" It does apply also to caregivers. You need to take care of yourself to be of any use to your loved one. Prayers coming your way......jan...buckeye7
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