PSP Association
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Nature's mysterious course

My mother is going on... And on... And on... With no power at all to do anything. No speech. Just a slight smile at random times, when she is 'zoning in'. No other movement. I sometimes try to sit still and silent for a while to experience the world as she does - and know that I just could not bear to be her. Even for a day, an hour, five minutes. I think it is time to stop those medicines that stop her from having a stroke, as she had one four years ago. But my father says he will not do this. Instead he has stopped her antidepressants. Which is the one thing I think should continue. We have not quarrelled - as I know he is doing his best and means well. But I did tell him my views this evening and was met with some hostility. It is so hard to know what is right. But my hunch is that being kind to my poor, utterly exhausted mother involves letting nature decide. Without drugs. And support my mother by allowing her to tiptoe quietly out of the room if and when, God willing, she is allowed to. What do you think? I know my views may be at odds with those of many on this site...

5 Replies

How is your mother being fed and receiving fluids? Has she any way of communicating, moving a finger, squeezing a hand etc. Perhaps your father thinks by stopping the anti depressants she will become more 'with it'. I personally wouldn't stop the other drug as I'm not sure that by having a stroke she will be able to tiptoe quietly away as you hope. My husband tiptoed very quietly and peacefully away by indicating that he no longer wanted to be PEG fed. He also stopped swallowing at the same time, holding yoghurt in his mouth until it dribbled out. If your mother is still swallowing perhaps she may do the same when she is ready to go. Ask her if she has had enough and see if there is any response. If she can still smile sometimes she is probably very aware of what's going on. My husband had been unable to smile months before he died but knew everything that was happening. If your dad is her main carer I think it would be better to do as he wants as it is he who will have to live with whatever decisions are made and the consequences of those decisions. It is heart breaking seeing loved ones in this condition and we want to do what we can to make it easier for them. Our GP and the hospice agreed I could stop feeding my husband and the last 11 days of his life were the most peaceful, stressfree days either of us had lived through during 6 very long years. I hope your mother does tip toe quietly away when she is ready to and that your father knows he did the very best for her.

Best wishes.



Hi NannaB

Thank you for taking so much trouble with your reply. In answer to your question - my mum can swallow thick fluids and is living on soups, liquid food supplements and smoothies. She is taking everything offered, but has still lost much weight and is suffering from bedsores which I understand are a sign of dehydration. I think what you are saying is that she will give up eating/drinking when she is ready. But I worry that my very feisty father is persuading her to carry on longer than she would choose to. She really can't communicate her wishes at all - not even by a smile when asked for a yes/no answer. And the doctor did say that a stroke is not a bad way to go, compared to an infection. I refuse to quarrel with my father over this at such a hard time for us all, and am merely hoping that he will soon see that giving up, while incredibly hard, is probably the right thing to do now. Thank you again. It helps to talk to someone with experience, and is a comfort to know that the end was peaceful for your husband. My thoughts are with you - and all who read and/or reply to this x


Dear Marysmother, I do feel for you. It's an awful situation. I'm basically with you about not extending suffering, and am in favor of assisted suicide. However, I hope it may ease your mind to know that she probably does not perceive time passing at all as you do, one mercy of the disease, and may be in a not uncomfortable dream state much of the time. The other point I offer for your consideration, and please forgive me if I'm totally off-base, because of course you know the nature of your parents' relationship and I don't, is whether your mother might be willingly going along with your father's wishes out of her own love and concern for him. And wouldn't that be a gift to be respected? At some level, if she is eating, she is deciding to live.

Wishing love and peace to you and your parents, ec


Hi there. You seem to be stuck in an unenviable middle ground between your parents. You can see your mothers quality of life dwindling and you can understand your father's wish to hang onto her.

Im like your father, I'm my husbands carer and I do all I can to keep him comfortable and, maybe selfishly, with me for as long as possible. I just can't bear the idea of him not being here with me even though he can't walk, talk much, wash, dress, is PEG fed and always looks sad. So what I'm saying is go along with your father. Hes probably slowly dying inside with worry and the possible loss of the woman hes loved for maybe the greater part of his own life. Sorry for all this carry on. Take care of yourself and take a bit of comfort from the fact that I don't think people with PSP are always aware of the deficiencies of their life. All the best to you. Marie


Its really hard to assess the quality of life.

My husbands situation seems intolerable to me - and he was a really active, energetic person. Now I have to do everything for him. He can hardly talk. But whenever I ask him to assess his happiness he says 3 out of 5. This was for questionaire at hospice.

He has no pain.

I think he will give up when he can't enjoy his food but I could be wrong !

I was expecting him to ask for assisted suicide but he never has. He seems to spend a lot of time in suspended dreaming.

Love, Jean x

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