I JUST HAD PHYSCE NURSE TODAY, AT MY REQUEST. SHE CAME JUST BEFORE MY DAUGHTER LEFT FOR AN APPOINTMENT. BEFORE SHE CAME INTO THE HOUSE THE NURSE, {I'LL ALL HER SUE..}, SUE WA BOMBARDED WITH FACTS ABOUT ME THAT WERE NOT FOR ME TO HEAR. WHEN SUE STARTED ASKING ME QUESTIONS D1 ANSWERED THE QUESTIONS LIKE I WASN'T THERE. TE CONVERSATION TURNED TO HER PROBLEM,WHEN SHE HURT HER HAND TAKING ME TO MY APPOINTMENT. I WAS SO UPSET & SUE SAW THAT I WAS SHE SUGGESTED THAT WE GO TO ANOTHER ROOM TO TALK IN PRIVATE. SUE REALIZED THAT I NEEDED TO HAVE HER HEAR MY STORY. I'/V ASKED MY PCP FR A REFERRAL TO A DR. THAT DEALS W/ FAMILIES THAT DON'T UNDERSTAND PSP. I'M SURE THIS WILL HELP ALL OF US.. HOPE SOMEONE CAN HELP ME FIGURE THIS PROBLEM OUT.
PSP; A CRAZY DISEASE.IF YOU UNDERSTAND IT ... - PSP Association
PSP; A CRAZY DISEASE.IF YOU UNDERSTAND IT YOUR OK. THE HARD PART IS WHEN YOUR CG IS YOUR ADULT DAUGHTER & SHE WON'T TRY TO UNDERSTAND .
Oh dear. Is your daughter feeling overwhelmed caring for you? What is your speech like? Can you tell her how you feel? What was your relationship with her like before PSP. There are so many reasons she may be acting as she does. Not everyone is a natural carer and she may just be finding everything too much. I know what you are having to go through is worse. Perhaps you could encourage her to read what is written on this site. She would then get an understanding of what PSP sufferers are feeling and also what other carers are feeling as well. I was the main carer for both my parents as I live very close to where they did. I found it very hard, emotionally and physically. Both my brothers said it was good I was the nearest as they couldn't do what I did. Now I am caring for my husband with PSP I get good support from my sons but my eldest and his wife have made it clear to each other that if one of them needs care in the future, they could not give it and they would leave it to professionals. I hope the situation never arises, but if it does, I hope they would change their mind. I do hope your daughter seeks help. Perhaps your doctor can refer you both to someone who can give that help and support.
Best wishes.
Nanna B
Gena,with psp as with all things that pertain to your life you must take charge ,I don,t know your situation but ,as nana said,maybe your caregiver is not able to preform the task being that she is your daughter,maybe ,if possible, have that conversation otherwise the hole will only get deeper,explore other avenues if possible,if you are new with this illness hope for a cure ,don,t jump ship and drown because you may hit the rocks years from now,best regards,Rollie
NomAnslAnd ............I'M TRYING TO GET HELP SO THAT SHE WON'T HAVE A L.OT OF THE RESPONSIBILITY, BUT THE CARES THEY SEND ARE NOT WORTH THE STRESS I HAVE TO GO THROUGH . I'VE GO A NURSE WORKING ON A PLAN TO TAKE CARE O THE SITUATION , SHE IS GOING TO SEND A SOCIAL WORKER TO MY HOME TO TALK TO BOTH OF US. I THINK I POSTED EARLIER THAT I'M GOING TO SEE A PSP DR.THAT'S SPCIALISES IN MY TYPE OF PROBLEM WITH FAMILY MEMBERS I N DENIAL.MY SON THAT LIVES
IN ANOTHER STATE AGREES WITH ME AND IF HE TALKS TO HER BOUT IT SHE GETS RUDE . I'M GOING TO SOLVE THAT PROBLEM REAL SOON . TANKS FOR ALL YOUR ADVICE I THINK EVERYONE IS ON THE SAME PAGE. . GENA
Hi Gena,after11 years I,ve witnessed a lot,remember,we can always face today it,s tomorrow we worry about but,thinking about it it,s always today,glad to help even if it,s only a little bit,.stay strong and as positive as possible,Rollie
Am sorry to hear that your daughter does not understand what your going through. maybe you could print some information out for her to make her understand this complex disease. Maybe let her be present at your appointments under the rule that she just listens or maybe let the specialist tell her all about this horrible disease. Eventually she will have to see and feel what your going through. I hope you find some resolution.
Stay strong.
All my love Tia x
i have the same problem with a step son never helps he once said he was puting it on keep in their
LALILA, I KNOW SOME KIDS DON'T REALIZE THEY COULD,,BE IN THAT SITUATION. WHAT COMES AROUND GOES AROUND THAT'S AN OLD SAYING . BUT HE'LL WANT HELP SOMEDAY. GENA
Having a good rant is one way of dealing with all the things you can't say. My friend is in a similar position to me,the things we get upset about are on the whole silly petty minor problems but a good bitch,and a large gin tend to let us put things in perspective. I know it's my dad who has the PSP but watching it day by day is ter
Sorry I had to sort my dad out. What I was going to say was. its terrible to watch and I want to help as much as I can but I know I cant cope forever and to be honest I feel I am failing. I know I am not. I know I am doing my best but still I feel rotten and then I feel frustrated. Let her rant,if it makes her feel better. Just tell her to do it where you can't hear.
One daughter is in Scotland for the semester. My other daughter is taking a trip to California in March. I'm stuck at home with PSP...grrrr.
Larry Update
