The journey of life: Hello I'm not very... - PSP Association

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The journey of life



I'm not very good at writing down what it is I want to say so this may be a jumble.

So Mum has been in the hospice just over four weeks now and is stable. Unfortunately in that time no other person has left the ward to go back to their Earth home, apart from one beautiful warrior who was back in the hospice within 16 hours and left the Earth yesterday evening.

I've found it really quite hard hitting seeing families come and go and then leave for the last time with belongings and pain. Whilst for the person who has left the Earth to now be at peace. There have been a couple that have pulled at my heart strings, where we've had interaction and chats and laughs & also unloading of their hearts.

The human body really is a marvellous vessel & when it is time to go, it is time to go. I've seen so many be there one day eating, laughing and then the flame has gone out in an instant.

I take my hat off to the hospice staff who deal with this regularly, how I don't know. It is always business as usual, no sign that someone has departed to the rest of the ward to make sure no one has fear and is comfortable.

Life is so precious and the suffering so cruel and unfair. The human spirit when wanting to keep fighting will carry on but then when it is time to is time to leave.

They are surprised Mum is still with us...she has a bit of fight left I didn't think was there...her time will come to leave...each moment & memory a blessing.

31 Replies

Beautifully written Spiralsparkle but so very sad.

As you say within a hospice it has to be business as usual.

Hospices are amazing places, one that we personally couldn’t have coped without!

Your doing remarkably well and I’m pleased your mum is being cared for so well.

Huge hugs darling x

Hugs back...this one warrior really touched me as she so wanted to go home & she made it home Weds but then it all started to shut down once there & driver wasn't enough. She had also said to me Mon that would be be happy at hospice too but wanted to get home but had had enough. She made it home bless all ways

This disease makes us all face our own mortality. It puts what is of real value in perspective.

in reply to Jeff166

Spot on Jeff!

It has been a long hard road to reality for us.

Sure does

That's wise, Jeff...,,:-)

Hello Spiralsparkle

Your post made me somewhat tearful. You capture it so very well.

I'm thinking that it must be very hard for you watching the partings.

I imagine you waiting and loving and hurting. So very hard.

I hope when it's time for your Mum's spirit to be released, free to fly, you will have a good moment of sharing and you both being able to convey, "I love you. It was good. So until we next meet."

It is you who are strong enough to bear this time. Not only the nurses.



Thanks Kevin.

I am marvelled by the human body really, after watching the last few weeks, of it really is here one minute, gone the next. Like say it does make you question your own mortality and value living life to the full.

The beautiful warrior poured her heart out to me on Monday night, I think she knew time was short in herself now replaying the chat back. I sat and talked with her husband last night as he waited for son to arrive who were travelling back off holiday who hadn't made it back in time. I told him about our chat and what she had said about him and her children. Hope it helped him in some way x


What a beautiful thing to have done.

You have such a good heart.


Such a sad post.

We were so lucky that Chris was able to stay home as he had no pain.

I thought the hospice was wonderful and would have been fine for him to be there. It was their palliative care team who cared for him at home.

Chris just decided it was his time and gently went. Your mum will go when she is ready.

Big hug for you

I know you have had a stormy ride

.Love, from Jean xx

Thanks Jean. Lovely words.

Yes I'm maybe a bit more geared up for that, Mum will leave when she is ready.


I think you are very good at writing things down. So well written. My prayer is that your mum is pain free and peaceful for whatever time she has left. Throughout life we can plan and hope things will happen as we want but the only thing we can be sure of is that one day we will be no more on this earth. Nothing to fear, just inevitable.

Sending you a big hug,


As you say that is the only thing we are sure of in life..It will come to an end someday.

Hope you are doing well as you can & there is light in your days

Thankfully Spiralsparkle ( I love that name) there is a lot of light in my days. After 22 months I’ve finally started decorating, something Colin and I always did together. This time my youngest son has been helping me. We are papering as well as painting. When Colin cut paper a little bit short, or there was an awkward piece around pipes and plugs, he would never swear or get cross but he would say, “That’s OK, we’ll put a slither in there, no one will notice”. Yesterday we laughed a lot as it became our regular saying. When Glenn said it, if I wasn’t looking at him, he sounded just like Colin. He has gone but he is definitely still here making us laugh and bringing light to my life.


Ah that sounds a special memory and moment you shared and Colin spirit lives on.

Decorating makes me swear lol

No jumble, just lovely written. My heart goes out to you while you watch your lovely mum. I pray she is pain free and comfortable and when she decides enough if enough, you can be with her.

Sending you love, nanny857 x

Yes she is pain free & comfy and quite perky at times too. She is also taking bits of food & drinking .

You really capture the feeling about how these times are not part of everyday life, but a significant time set apart.

Thinking about you as you are in this period of waiting with your mother.

Thank you.

Thank you for sharing.

A big hug.


Hug back

I never can get over the will to live despite the body failing.

My darling Mother was put on end of life care at the end of September. She wasn't expected to make her 98th birthday a month later, but she did. Christmas came and went, so did the New Year and, as you put it, left this world on the 20th February. During this time she was bed bound, extremely frail and rarely conscious but determined not to leave us.

So you have my heartfelt wishes during this time. Meanwhile PSP took a tighter grip on my Darling Husband.

Love n hugs


Hugs to you.

It really does astound me too how the human spirit can fight or say enough is enough with a illness that is playing total havoc with the body & then the body follows the spirit.

I don't think Mum is going anywhere imminently like your darling Mother.

Well said Spiralsparkle!

Glad to hear that your Mum is as comfortable as she can be in the hospice.

You’re one amazing warrior yourself!

Love and light,


Thank you x

Your writing is heartwarming. Sending Hugs to you and your mom. Granni B

in reply to Motts

Thank you x


Well written and effectively described the hospic process. You are right about hospice workers. They were amazing for my wife. God had blessed each one of ours with caring and kind spirits, helping the patients as well as their families.

Praying for comfort for your mom, your family, and you in this difficult time,


Thank you x

Wow, written amazingly. Puts lots into perspective. I lost Leon (Hubby) on 16/10/2018 after an 8 year struggle with P.S.P. the last 4 months in care. He decided to stop P.E.G. feeds and fluids and still took 10 days to pass to a better world for him. His heart just would not give in. He was reasonably comfortable, but it was the worst 10 days of my caring for him, sleeping beside him day and night. We are taught so much when we care for someone who has such an insidious illness. Certainly puts life into perspective. Lots of hugs and thoughts are you throughout your journey. xxxx0000

Hugs back to you.

Be kind to yourself x

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