PSP Association
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Progressing fast

Since my parents moved in with us 7 weeks ago, my dad has gone from walking with me holding his hands, him sitting in his recliner and taking naps, still talking with single words, and using the bathroom, to bed ridden ( we have moved in a hospital bed) barely awake most days, slurred speech if any, no bladder or bowel control and has pain in his joints due to them becoming stiffer, mostly in the hip area. I've given pain meds ( through hospice care) to help keep him comfortable. My mom and I, after many battles and discussions over his care have both reach the realization that dad may not have much longer. He had some lung infection a few days ago. Gave him antibiotics and oxygen. It worked great but we were told that it will probably happen more frequently. Mom has made the decision that if he gets another infection she would rather he be made comfortable instead of trying to give him more meds to prolong his suffering. My siblings are in conflict over this decision. Tonight my younger brother knelt down and asked our dad if he is ready to "die". It shocked the rest of the family. My dad did not respond to the question. When I asked dad if he wanted us to leave him alone so he could sleep, he said a faint yes. I don't think he wanted to answer that question and I don't think he ever will.

I have inner conflict with myself, one part wants to have dad with us as long as we can and the other part of me wants him to pass in his sleep and end all his suffering.

I don't know how to feel anymore.

10 Replies

hi mom to 5

it si so difficult ot realise that a parent is dying i know btu i have got everythign in place for when i can no longe rdo anythign for myself

and i hoep my wishes will eb followed to the letter (OR THE A4 SHEET IT SI ALL WRITTEN ON)ie mo peg feeding/ no continuing muy lfie when i cannot do anythign for myself etc etc

There is no right or wrong answer ot give you or your younger brother in this difficult time

your dad is lviign with you so perhaps you should make the decision....

love nad big HUGS to you all



Hi Momto5

You really have my sympathy. My Mum has also deteriorated rapidly in the past few weeks. We are currently staying with her overnight as she can no longer be left alone. She lost the ability to talk for herself a long time ago and we are now currently having to arrange for nursing home care which has left us all feeling very anxious. Sadly we are unable to have Mum to stay as we all have full time jobs and only have limited amounts of leave. I think the conflict comes from love and care and everyone trying to do the right thing for Dad. So although the question seemed harsh I'm sure you're brother was just looking for some guidance. I think the best we can do in this situation is to try to offer love, support and reassurance as best we can.

I wish you and you're family all the very best.



I really feel for you and your family at this time. Your situation causes mixed and confusing emotions, but never feel guilty. Most of us caring for our loved ones with PSP (or similar) have to face similar circumstances. I'm on knife-edge each week wondering when my wife will reach a point of rapid deterioration (even though we try and live day to day and enjoy what we have, for example our family and grandchildren).

We can only approach this problem as a common experience - wanting our loved one to stay around as long as possible, but never wanting them to suffer.

Like many of us on this forum, my wife has made decisions and plans already about her medical intervention as the end stage comes. It's a personal thing, but all the family are aware of her decisions.

Words won't make it easier for you and your family, but I trust you'll all be able to stay strong through the coming days.

Take care.


You are doing all the right things and it has to be right for the family as well as for Dad. I just made sure mum had constant pain relief (patches from palliative care) was clean and comfortable, hugged her lots and made she ate what she fancied (mostly ice cream).

Just lots of love is all you can do now. Try to be positive so he can get through each day as it comes. bless you, hugs,

Dianne x


My heart goes out to you as I too have a similar situation with my husband. He has suffered for about 8 years now with PSP but this past winter has suffered terribly with what I've been told is Neuropathic pain which seems to affect the nerve endings in the extremities--- particularily his hands and arms. He too is on constant pain meds which constipate him and we have to deal with that. In the last month he has been experiencing chewing and swallowing problems--- sometimes he can handle regular food but minced or puree food is safer. The medical staff at the Nursing Home where he resides approached us last week to make us aware that our decision whether to use /or not a feeding tube is approaching. Ultimately the decision will be my husband's as he is still quite cognitive to make it. Our Pastor visited last week and posed the question "are you afraid of death?"-- he said part of me no and part of me yes. He is a believer in Jesus Christ and has the assurance of Heaven but concerned about leaving behind me and our children. We were able to talk that out and I think has given him some comfort. I've been able to have some very intimate talks with him going over our life together and I have found it to be such a precious time for us both and even bonded us more through all this turmoil. I think it has been a relief for him to have this all out in the open. His condition slightly improved this week --maybe a coincidence, maybe not. Our oldest daughter (lives in Malaysia) with her partner and children is coming home in 7 weeks to see her Dad of course but to be married --- a desire we have longed to see. Only God knows if her Dad will be here to see it. May God bless you and your family.


Remember these are just my thoughts (Every family is so different)...

When your life is under extreme presure it is hard to see anything in context and most of what you do is clouded with mixed emotions. Your family are up against probably one of the most difficult decisions that anyone will have to make. I gather your father didn't let it be known through 'advance directives' and such what his family should do. If so, this is the same with my husband, and now it is regrettably too late to implement as I believe that he longer possesses the insight skills and same values John once dearly held for so long. So when the time comes again that I have to make the decisions as 'next of kin', wife, mother to his child and daughter/sister in law - I will have to try to think of what my husband would have done if I had the disease, and what he said before and during the disease and why. At present these are notions I find extremely difficult to grasp. Perhaps this too is the position your mother is placed - if so, by all means as a family or individual question but remember to support your mother and the decisions she makes.

Regards, Alana From Western Australia


My heart goes out to you during which can only be a gut-wrenching time. Is there a trusted friend, minister, or family member outside of the immediate family that can sit down with your Mother and siblings, and help guide a discussion on what to do from this point? Emotions amongst you are justifably high, and perhaps bringing someone else in might help with perspective.

A few years ago, my Dad passed away from cancer after being diagnosed for 31 days. My sister had his POA, etc. He had a health care directive but I hadn't seen it & she didn't seem to know much about what it contained or where it was. He lived out of town & allowed us to 'help' him but on his terms (quite stubborn) & only if we stayed in a hotel, which he payed for. My sister & I split the week going up their to care for him.

He was cognizant but clearly deteriorating quickly, & she & often talked about how scary it was everytime we'd leave the hotel to go to his place. One day while back at the hotel, I called her & asked if she knew if he had a DNR; if I were to arrive there & he was still here but slipping away, I wanted to be sure to give the paramedics the right instructions. She said "Oh, yes! He'd want everything done that could be and go to the hospital!".

My gut told me she was wrong about that. Later that night, I asked him that question. Before I got the whole question out, he said "Oh, no, please just let me go!" He went on to say it was without purpose given he was end-stage 4+, he was suffering, and didn't want to be kept alive incurring high hospital bills when he knew it was 'my time'. I am so glad I asked that question; I can relate to your brother.

Is it possible there is one person in your immediate family circle who could ask him his wishes privately if there is an opportunity to do so?

I'm not in your shoes but have a hunch how hard this must be. I wish you, your family members, and your father, strength, unity, and some peace during this window of time.

Judy J


These are tough decisions. I think the legal documents the patient signed should prevale over the wishes of the family. Remember, this is not a family decision, it is not a committee decision (meaning family decides). It is the decision that the patient made at some point in time legally. As disease progresses (PSP) I don't feel that asking the patient their wishes. Unless you firmly believe they are in the mental shape to make such decisions. My wife and I have legal directives for medical attention but in addition we had a conversation this week as to if she would want to be kept alive on some feeding method. She said "no" which confirms the legal documents. I won't visit this again with her and will take this as her personal decision since her mind is good at the moment. Although it is difficult the decision should fall on one family member. The more family you involve the more "ideas" you will have on the issue. What if you have five family members and three say one way while two the other? Will there be ill will by the two towards the three? I know that you risk the chance family will feel left out and have resentment but including them in the decision my create more resentment on one or more members. It's all about trust. Will the family trust that the one with the ability to make a decision has the patient's interests at heart? Lots to consider and I don't envy your position. Pray about it and let God make the decision then don't look back.



Dear Momto5,

What a hard time you and your family are going through. I too know the emotion of wanting a loved member of the family to survive, but not wanting them to suffer the loss of personel control, indignities and pain that comes with psp.

My husband has just finished a 12 week course of the day centre at our local hospice. With the doctor there, my husband stated what he wanted for his end of life care and the forms were completed. For my daughter and I, this has been quite a relief especially as my husband's condition has deteriorated over the last few weeks. In the last few days I have been finding it harder to cope with his incontinence. With the help of the continence adviser we are trying a number of appliances in the hope he won't have to catheterized. He is also loosing his speech and swallowing at times is very difficult and this causes him quite a bit of distress. Oh this disease truly takes its toll on the sufferer and family.

Stay strong and give each other and your Dad as much love as you can.



Thank you for all the support. Dad is finishing his journey and if the good lord is willing his suffering will end today. Please hold him in your prayers


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