PSP Association
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Give This Advice To Someone You Know & Tell Them To Pass It On

My best friend, Connie, left town yesterday, after spending several days with me helping accomplish several things.

One of those 'things' was to meet with my lawyer to finalize giving her my Power Of Attorney, a Health Care Directive, and a Will. There are still some details and blanks I need to fill in, but I feel releived now that it's been pushed forward.

However, what I wasn't prepared for were the emotions I felt. I didn't expect it at all. I looked at it as a 'task'; just paper stuff, but of great importance.

When I was diagnosed with PSP early August, 2012, during that visit with my Neuro plus 2 additional visits scheduled closely together, he strongly emphasized the importance of getting these things done asap, as well as finish any unfinished business. It was stunning to hear and rocked my world.

I talked at length with my therapist about how I felt about his directives. Shelly, my therapist, is in her 30's. She calmly told me that every adult, even young adults, should especially have a health care directive in place, because if a person should sustain a substantial head injury or a severe illness that cognitively impairs that person, it becomes a hot mess without one. Basically, it's too late; get it in place early in life; it can always be tweaked later on.

She said the same about power of attorney. She and her husband had already assigned their's to each other, as well as had a will, etc.

I don't know how many times in my adult life I've heard or been encouraged to get a will in place, health care directive, and power of attorney. But I always rejected it out-of-hand. Nah, don't need it, I'm too young, etc. etc. etc.

So as I sat in the conference room with Connie and my attorney, putting my thoughts, do's and dont's together on paper, I felt a rush of creepy, I'm circling the drain, and most importantly....why didn't I do this when I was healthy?????????? During that process, I realized tho it might've seemed a little creepy or 'over-kill', pardon the pun, to do it earlier in life and/or when I was well, it sure would of been easier than doing it when I'm sick.

Please encourage the people in your world you care about, young and older, to take care of this business now, when they're well. Then it's done. It can always be revisited later. Doing it when you're unwell was quite an unpleasant experience and only because I didn't want to take responsibility for my affairs. Life turns on a dime. It's never too soon.



14 Replies

Oh - big oversight on my part - getting this business done earlier in life vs. later or not at all will be one of the biggest acts of kindness you can give to your loved ones. I remember repeating several times during that meeting that "I don't want to have my daughters make those decisions for me."

Pass it on.


hi judy

i agree



sent b4 finished

i do nto have children so it has been importnat afor me to ge tthe LPA sorted and the attendant a4 sheet tha tago eswith it - for me anyway - if not my partner

who prefers ost bury hsi head in the sand and not think abotu the worst scneario

i do and i have done it/!!

lol JIll



Good for you girl! Keep doing what you're doing & maintain that edge of your's; it' essential.




Good sound advice Judy ...

We had such a rush trying to sort things out for my step-dad (who had PSP) and it was made worst because completely out of the blue my Mum was diagnosed with terminal cancer - everything seemed so much more difficult to face and deal with.

Having said that, I'm ashamed to say I haven't even done a Will myself - I need to pull my head out of the sand and do it while it's all fresh in my mind.

Thank you Judy for the reminder!

Best wishes to you - take care x


(Tree Hugger)


c'mon tree hugger get cracking on those wills and power of attorney you would not want the state to get it all would you mate and sqaunder it on something stupid like having a referendum or filling in potholes in roads etc\\ or drinks for the boys \\ i have just taken ours away from the solicitor who we paid to have it done with\\ because we phoned up for a bit of advice and they could not even find the wills and power of attorneys \\ so we gave him the old heave ho\\ and went to the public curator who we are with at this moment all done it never hurt a bit by the way our wills did turn up and power of attorney some time later on no opology no nothing which i thought was very bad or maybe i expected to much i think i came from the old school when people used to give up there seat to someone elderly on a bus or train\\ now they look deeper into their newspaper just in case anyone looks at them \\ its a sad old world at times \\ but its still better looking at the grass from the top of the ground looking down =============not up peter jones queensland australia psp sufferer


Good thing, tho, you made that call due to a question. There are bad professionals in every business; grr. But one again, you put a smile on my face with your post.



Take care. My experience is that my and my sister's LPA was completely ignored by the lead physician in charge of my mother's care. I was informed by him that there was a conflict of interest as we had LPA for health and welfare and finance.

My mother's signature on the part of the LPA agreeing to trust us with her end of life care was also ignored as a living will request. So make sure that you make very clear what you or your loved one's wishes are and that they cannot be misinterpreted.

I am still trying to come to terms with the events around her last months of life 7 months after her death, bitter or what.


Here in the States, & specifically the state of Minnesota, the Health Care Directive (pages long), gives my friend Connie 4 specific rights as my Health Care Manager. The important thing right now was to get her name on it. The Directive has several pages of questions I need to plug the specifics into, but we talked about them at great length during the meeting. Plus, Connie and I have been friends for 30 years; we've talked about these kinds of issues on and off over the decades and she knows just what I do and do not want should something happen tomorrow. My lawyer advised me to put the specifics in a letter as well, to err to the side of caution.

She went with me to my Neuro appointment as well this week. He gave us more to think about and good advice but also said getting a name on that Directive is crucial. He said he can't even guess at the number of times one of his patients went from okay to critical and non-cognitive, and no one in the family knew what the patient wanted and didn't want. He said it throws things into chaos & often times divides family members and the patient gets lost in the dust.

He also told me to work on it with my Internist, who I have an appointment with in a few weeks. Again, tho it will be very hard on my young daughter's, I want it to be me who makes the decisions while I can about how the end of my life does or doesn't go. I also have a few immediate family members who are a bit kooky and I know would get in there and mess things up...who needs that?:)


I'm sorry you had to go through all of that; it only makes a hard to endure situation crazy-makings. Thank you for your advice.

I'd think what you've been through would cause great emotional and mental upset; time may not heal all things, but time can dull some of the pain.

Take extra good care of yourself.





You are so right. When my Dad passed away this past December he had put together an envelop that said "After my Death." He had all his papers (pensions, etc,) along with his wishes spelled out for my Mom. It made everything so much easier on all of us.

My husband and I had physician directives, power of attorney and wills drawn up when we got married 30 years. However, thanks for reminding me because we have to update our wil since we now have grandchildren

You are a wonderful woman thinking of other. Please take care.




Thanks Dee Dee; you were wise to have it done all those years ago; now it just needs tweaking.

Those feelings I felt during the process this week were a mixture of creepy, macbre, but mostly great sadness. The time to get these things done is when you're well, well, well, even if you think it's a 'waste of time'; found out how wrong I was at the onset of that meeting, tho now I'm starting to feel the relief.

I had the same experience with my Father. He was diagnosed with cancer for the 1st time 6-30-10 with end stage cancer +; nothing they could do. Spent the majority of July at his place up in northern MN. I was amazed at how well his affairs were in order, for a formerly very unorganized man. He passed 8-2-10; because of his planning, although it was still hard, the whole process, meaning planning the funeral, etc. was a breeze.

Best regards,



Judy, Another important thing to do is to list what personal/family effects you want to go to whom. For instance, I have three ancient family clocks, a collection of very valuable pottery, and some jewlery. My son would sell these in a heartbeat where my daughter would cherish them and pass them along to my grandkids. My wife and I have both listed these personal item distribution documents (not necessary to be done legally or be notorized). If this i put in your personal "end of life" documents the executor of your estate/will has some idea of your thoughts on distribution of personal items. I have some going to my daughter and some to my son. This avoids the "fighting" over personal items after your death. It's a different thing than your Will.



Oh, yes, for sure I will. In part prompted by your previous advice.

I saw my Neuro this week and I definately regressing or progressing, whichever way you look at it. When my friend and I met with my attorney, at least this visit, didn't have much time to focus on the will...but I am making a list of what I want to go to who, including what I want done with my pets. Can't forget them should I suddenly take a turn for the worse.

I am not one of great material worth but it's the simple things that matter most. Pictures, items passed onto me from both grandmother's, etc.

While Connie was here, she continued to shuttle loose ends of stuff to the new house. As we spent time going through unpacked boxes here and some she brought over, I'd say put that on Katy's list, or Missy's list, or my sister's list, so on and so forth. It will come together.


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