Dilemma

[Sayer]

My wife has had several incidences of Aspirational Pneumonia and has decided, when it happens next time, against having any more treatment of any sort. Question. Should I strive to keep her going, which is against her wishes, or not, which is what she wants?

[doglington]

I had this with my husband. He said quite definitely. I know I would have felt the same if I was him.

It was hard but I followed his wishes. After, I found comfort in recognising that it felt good for him and me that he had taken control.

He died very peacefully and had no pain.

love from Jean x

[Kevin_1]

Hi Sayer

You are in a difficult situation.

The question you might ask yourself is that if the tables were turned would you want her to do as you asked?

However I am aware that people have vastly different ethical positons on this one.

Adding, pneumonia is often referred to, by paediatricians, as the old persons friend. It is a pain free way of slipping away.

I hope this helps a little

Kevin

[Marie_14]

Sayer I fought to keep my husband alive. I know he wanted to die long before he ended up in hospital. In the end I gave in. I wish I had done it sooner. I wanted him alive for me and I now feel that was very selfish.

If I had been in his position I would like to think he would have let me go.

Good luck whatever you do as this is not easy.

Marie x

[enjoysalud]

Hi Sayer, as for me, I often find conflicts within me with these BIG decisions, especially after the decision has been made. Since PSP can affect the brain and decision making, it does cause pause for questioning. Do we respect the wishes of the patient who is ill or follow our own wishes (values) who are in a position of power?

My son died on May 4, 2017. He chose to NOT be fed five weeks after having a PEG installed for his 2nd bout of aspiration pneumonia. I was ambivalent with the PEG decision and with the stopping of being fed, but I decided to err on the side of HIS DECISION. It was HIS LIFE. He was 55 years old and therefore had the right to make both decisions.

It has been 9 months since he died. Every now and then, more now, then "then", I wonder if I should have spent effort and time in talking him out of his decision....especially when I learn about helpful meds (Trazadone) and new trials (Biogen phase 2 anti-tau anitbody from Bristol-Myers Squibb).

I think that is the nature of the situation, to question these type of decisions, but as my dad use to always tell me "Hindsight is no sight".

At the end, I am glad to err with what MY SON WANTED (his values).....not with what I wanted (my values). There was a movie that I saw decades ago, WHOSE LIFE IS IT ANYWAY?

One last thought to share.....your wife is saying NOW she wants no treatment IF another bout of aspiration pneumonia appears. I think she will stay with that decision, but until the condition ACTUALLY appears again, she may change her mind.

Margarita from Los Angeles

[raincitygirl in reply to enjoysalud]

You are so articulate Margarita ..

[enjoysalud in reply to raincitygirl]

Raincitygirl, thank you for taking the time to share that compliment with me. Often, after sending a response, I think "That sure was a muddled response." I appreciate your perception.

[rriddle]

If the roles were reversed, which decision would you want your wife to make on your behalf?

[Tippyleaf]

It such a sad and horribly difficult position to be in. But I think we have a responsibility to brave and honour our loved ones decisions.

I suspect that Medical staff will also begin to question the appropriateness of repeated treatment of pneumonia as with each bout there is likely to be an overall deterioration in health. You may well find medical staff ask you what your wife’s wishes are.

Of course nothing is ever clear cut and I do hope I will be able to follow my own advice when the time comes.

Love Tippy

[Judyskid]

Please follow her wishes. It is the most loving thing you can do. Allow her to have the power to choose.

[Heady]

Very hard! I agree with everyone else though. It is her life, give her that final gift of love, let her take back control of her body. PSP takes everything, if she is managing to express any sort of opinion, then respect it, no matter how you feel. Accepting the conclusion of your wife's journey, will enable you to do the most important job of all, be her husband again. That's all she wants, to hear and feel your love. Let her go, knowing that you loved her. That is one thing you will never regret.

Sending big hug and much love

Lots of love

Anne