Many thanks to everyone who has replied to my latest posting.We don't live near to friends or relatives so everything is down to me.We have a doctors appointment to review her medication soon so I will try and have a quiet word then.
Many thanks to you all,Acorneater.
We are all the primary care giver. It is all on us to make all the decisions as they decline. Everyone else walking in is walking in cold. Not knowing what really needs to be done or how to do it.
Acorneater, it is very hard emotionally and physically. You are going to need help at some stage. I don't blame your wife being depressed although it may well be apathy which is a sign of PSP? When you go to the doctor explain what is happening. Stay in touch with us all as you can share your worries and concerns. Lots of people have been through what you are facing. So we are used to people feeling they don't know what to do or just having a rant.
Good luck to you and your wife. I think you had some good advice to your previous post.
Marie x
Hi acorneater!
I Agree with Marie and Jeff.
This is our experience:
*Releasing the PSP caregiver and allowing him/her to have a life outside the home as well as to avoid strong or continuous physical and psychological efforts is fundamental. The main caregiver of a PSP patient is progressively taking on additional tasks. To the person's previous work (before the disease had been shown) must be added the work formerly done by the PSP patient, plus the management of the illness and the guidance and surveillance of people who form the help team. A special and continuous attention must be directed to the main caregiver and his/her medical history.
Remember that the main caregiver jobs and occupations grow along with age. Without significant help it is very difficult to carry out all these activities without suffering a severe wear-down.
Rest and sleep well is essential. Combat stress, too.
From my experience and also from my group of caregivers, it is essential to find efficient help that allows areas of freedom and leisure as well as vacation periods for the caregivers, far away from the PSP problems. At least ten days of holiday each six months are essential.
As Bill F (Smart Patients) said: “As we look back on where we are, we have a wonderful support team of medical professionals, fitness trainers, church folks, nonprofit groups, friends/neighbors, paid caregivers, family members. It's absolutely amazing. Start now to build your team. You will need them, and they'll all want to help.”
As say JEN2017 “nobody could/should go through this hard disease alone. Especially the caregiver”.
Finally, reproducing the phrase of Anne Heady (active participant in PSP-HealthUnlocked): "Never forget to get plenty of rest, ask for help and most of all, ditch the guilt!"
Hoping to be useful.
Hug, luck and courage.
Luis
This is a brilliant job description Luis. Not sure any of us would take it on if we knew in advance. That day, millions of years ago, I would have kept my head down and walked past, not stopped to say hello! But then, I think of the life i had with Steve and glad I did, despite everything. I am starting to come out of the fog of grief and I am a totally different person. Far more relaxed, a lot stronger and able to let silly little things wash over me.
For anybody reading Luis's comment from me, I learnt that the extremely hard way. I can always talk the talk, but never managed to walk the walk!!! I know none of us EVER listen to our elders or veterans, but if you are new to this site, please, please take on board some of our comments. It will help. I dread to think of the state I would have been in or the care my husband would have had to suffer, if I hadn't.
Sending big hug and much love
Lots of love
Anne
Pain Poll - please help - Thanks
thanks for the replies
Big thanks
hi everyone 
