Living and dying with PSP

Hello, my husband was first diagnosed at 75 with Parkinson's and ataxia.

He continued to fall, have slurred speech, trouble with eyes, memory, got car by, was antisocial, stopped talking falling o ER , stiff etc.

Finally diagnosed in 2017 withPSP, he continued to get worse

Until he decided to choose media ally assisted death, he died three weeks ago with his dignity intact, no diapers, and without tubes down his throat. He was.very brave to do this and we are all relieved he went this way without any more suffering.

His wife, he was 79

[Bargiepat]

Respect for you all...................

Patrick. XXX

[Hidden in reply to Bargiepat]

Thank you

[Hidden in reply to Hidden]

My heart is still breaking I miss him so much

[Marie_14]

Mandy I know that feeling and it has been just over a year. It is so very hard to loose the one you love? I actually think I am worse now than I was last year. I am told it gets better but I suppose we are all different?

Hugs to you.

Marie x

[LostinHeadSpace]

Hugs to you both as you grieve.

[Zeberdee]

How very brave but also extremely sad. Jxx

[Heady]

Ending big hug and much love

Lots of love

Anne

[Kmacgamwell]

The USA has limited our access to end of life decisions...

I have been care taking 7 years... last 2 difficult but not impossible.

My husband of 35 years is going to a nursing home this weekend.

I have chosen not to be alone, caring for him during the end stage.

This disease is awful.

[raincitygirl in reply to Kmacgamwell]

So sad K;. It will be hard for you this weekend. Hugs and best wishes.

[Kmacgamwell in reply to raincitygirl]

I am fortunate that our family is in agreement.

[margh2468 in reply to Kmacgamwell]

I know exactly how you feel, Leon went into a nursing home just 4 weeks ago after me caring for him for 8 years, it is a horrible feeling, for him and me alike. I am slowly accepting that it is the best for both of us, hard as it is to see him like he is. Yes you are right this disease is awful. Hugs to you from Howlong N.S.W. Australia

Marg H

[Kmacgamwell in reply to margh2468]

Thank you. I feel your understanding... no pity... I hate the pity.

[Escada29]

It is a long hard road your husband was very brave respect to you all xx

[Hidden in reply to Escada29]

Amazon has a book called the last dance at the Savoy, wonderful read and helps to see someone else went thro the exact same thing. This fellow lasted four years, mine was about four too, but I think he had it a few years before and we ignored the symptoms, put it down to age at the time

[doglington]

Brave story. Its a terrible decision but seems civilised to me .

love from Jean x

[Tippyleaf]

What a brave and courageous decision. I hope it was a calm and dignified passing.

Hope you get all the support you need as you tread this new path in life .

Take care of yourself

Love Tippy

[margh2468]

Oh Mandy2015, I feel for you. Leon my hubby is now in care, I tried so so hard to keep him home with me, but it finally got the better of me, I started suffering mentally and physically, he is now into his 8th year (prob longer, looking back) I dislike imensley seeing him the way he is, tube fed, constant fevers and sweats, cannot speak, does not like to socialize,has to be lifted by harness and hoist, absolutely horrid. This site is so so supportive when you realize you are not alone dealing with this horrid illness. Thank you for sharing it makes a big difference, thoughts are with you Hugs MargH from Howlong N.S.W. Australia

[Hidden in reply to margh2468]

Canada has now passed a Law since last seotember 2017, it is called MAID

Medical assistance in death, when my hubby found out he requested it right away, I didn't blame him one bit, he was so close to having to be incubated

And losing control of bowels and bladder.

The requirements must be competent and terminal here in Cana da.

It was peaceful, and restful, he just went to sleep with myself and children and his little dog beside him

[Benny22lovesus]

So sorry , I know my husband will choose the same path.

[tamaradecarlo]

Thank you so much

[Daveb1]

Great attitude. I have PSP, and hope for this, too