A Poem For Mum:

[hooperhyde]

'Hello, Gorgeous', you uttered two words.

Two words which were music to my ears.

It's been so many weeks since I heard your voice.

So many weeks since I saw you smile.

I can't remember the last time I heard you laugh.

Those two words were spoken to Eleanor Rose.

Eleanor Rose, who was born 9 weeks ago.

Eleanor Rose is our first daughter.

Eleanor Rose, your first grandchild.

Ellie smiled sweetly right at you today,

She's so unaware of the torment you are in.

Oblivious of the grief we have all endured.

Her love for her grandma seems entirely unconditional,

Regardless of the appearance of your outer shell.

You're probably never going to cuddle her properly.

You're probably not going to see her grow up.

You might not hear her utter her first words.

You're unlikely to see her get married, have kids.

But she loves you, her grandma, absolutely, unconditionally.

It's as if she knows who you are.

'Mum, do you want to hold Ellie?' I asked you.

'No' you whisper softly back.

Is it because your heart breaks when you try?

I hate that you can't gather the words to explain.

But I don't question you, I just accept.

I don't want to force you or add to your sorrow.

I just show you Ellie and 'hello gorgeous' comes back.

Everyday I wonder what you're thinking.

Do you know what's happening to you?

Are you screaming inside 'I'm still here!'

'Let me speak, dress, eat, I can do it myself.’

'I can hear you, you know, I'm sitting right here'.

In my heart I hope you don't know,

That you don't really understand.

Most people would see a distressed

Contorted, trapped woman inside.

But I know that you are my mum.

A grandma, a wife and a sister, an aunt and a friend.

I hope that you are in a nice place,

Far away from this bleakness you are in,

A place where you're happy, calm and relaxed.

You grasp things so tightly, a finger, a tissue,

Whatever is there, in front of you.

Why do you hold on so intently, I wonder

‘I'm sorry Mum' although I'm not sure what for.

Sorry I couldn't save you from this illness.

Sorry for all of the things I did when younger,

that I should have already said I was sorry for.

I love you Mum, I wish you knew,

I wish I had spoken those three words more.

You'll never know how much my heart breaks,

every time I say it and there's no response from you.

You can't stand any longer,

or really sit in chair,

you spend hours in bed,

being tended by others.

Sometimes I wish you would just let go.

Then I feel guilty for wishing you away.

But you don't need to suffer any longer.

We're all settled and able to cope.

Each day I see you, suffer, in pain,

A little bit more of my heart breaks away.

Eleanor Rose is two years old now,

You made it to her second birthday.

She had a party, you came in your wheelchair,

You couldn't eat any cake but I did see you smile,

A little bit more of my heart broke again.

It's been 6 years since your diagnosis

You were given twelve months after just 2.

You fought for everything you believed in

Made so many milestones that we didn’t think you would.

You saw me marry the love of my life

You saw the birth of your first grandchild.

You lived in the home that dad would retire in

and saw your son settle down, fall in love.

But now its time to say Goodbye Mum, we know you're at peace now.

Goodbye Mum, you passed last night.

Goodbye Mum, you left so gracefully.

Goodnight Mum, close your eyes, sleep tight.

[NannaB]

I couldn't stop the tears from flowing as I read this, whilst baby sitting my 2 year old grandson who said, "bye bye grandad,I love you", as we left my husband in a care home. He is there for a week so we could visit my son and his family; the care home is in the same town and I've taken him out each day but he has cried each night when I've returned him. You sound like such an understanding daughter and I'm so sorry you have lost your mum to this awful illness but she is now at peace and I hope you will soon be able to remember the happy times in the past more than the awful last few years of PSP.

You are in my thoughts and prayers.

Nanna B

[82wendy]

Amazing poem, made me cry so much it took ages to read could not see through the tears.This poem is exactly what we are going through.Our families hearts and love with you at this sad time keep strong.

[peterjones]

hi hooperhyde I think you have covered just about what everyone feels with psp mate its a lovely poem and it bought tears to my eyes thank you so much for letting us all in to your feelings god bless you peter jones queensland Australia

psp sufferer

[Hidden]

You have expressed so many feelings that are inside me, and drawn tears, as my wife travels a similar journey. We have four children and ten grand children and my wife wants to reach 70. Next week is her 70th birthday, and PSP is draining her life away in its cruel fashion.

So sorry you've lost your mum, keep strong and cherish the happy memories.

T.

[nomansland in reply to Hidden]

hi,we have 2 boys and 7 grandchildren,my wife began with symptoms 10 years ago,i am sole caregiver,she has a feeding tube...past 3 years...not even able to speak,life can give terrible twists,regards,R

[Hidden in reply to nomansland]

Hello nomansland

Thanks you for sharing this information. 10 years is a long time to have classical PSP and to be a sole carer. As we take this journey many choices have to be made, and my wife decided early on that she did not want any medical interventions, especially PEG feeding. She is now in her 6th year from symptom onset, and still managing to "enjoy" some interaction with family and friends, but in a diminished capacity. There will be many more challenges ahead, but we try and extract as much "pleasure" out of life for her, and provide her with as much comfort as possible.

I do wish you well as you care for wife. This forum is a great place just to let your feelings out!

Take care

T.

[nomansland in reply to Hidden]

hi,I just stumbled on this tonight after years of trying to find answers to a possible different illness that might be extremely close but with a cure I guess I,ll just keep praying for the ability to keep on,enjoy each day your wife is able to reach out to the family,thank you for your reply,R

[Pram]

I just wept !

[lindsey48]

Beautiful x

[SuzieQ]

What can I say? Made the tears flow. So sorry for your loss and I'm sending lots of love to help you through these difficult days. God bless and thank you for sharing your beautiful thoughts and words.

Take care......SuzieQ xx

[Rosal]

God bless you. My English is not very good, I live in Mexico and my mother have PSP just diagnosed about 10 months ago, but it is in an advanced stage. I take care of my mother and my brother with Down syndrome, they always have lived with me. I cry when reading your poem and think what will I feel when she dies, I don't want to imagine it, one seems to be prepared for this, but I can see, through your beautiful poem, which always hurt. However, both have the joy of having them in our lives. A big hug from Hermosillo, Sonora.

[Heady]

Words fail me! Thank you.

Heady

[jillannf6]

a lovely poem for your mum

may she be at peace now

and i hope Ellie does not miss her grandma too much

lol jILL

AND A HUG AND XXXX

[daparose]

Thank you for writing this poem especially when you have just lost your Mum, it brought tears to my eyes but summed up all I felt about my husband who passed away with PSP in December, I am still feeling this great loss but hope time will heal everyone who as lost their loved ones. Thank you once again.

[Kathy]

Thank you for sharing this with us. as with most of the other replies I am sitting here with tears on my face reading it. I'm sure those memories of special times with your Mum will be a comfort to you.

Take Care

[elizalou1710]

Just so beautiful all my sentiments are covered by this x

[shasha]

what can i say ? I like all the others on this site have read your most moving poem to your lovely mum and have cried...

thank you fir expressing your true feelings .. God bless you and your mum

Sharon

[jillannf6 in reply to shasha]

hi sha

how r u todyay?

lol jill

[shasha in reply to jillannf6]

hi jill i am not too bad thanks - i am having physio 3 times a wweek a d am now finding that i can walk a bit oin my own again !! also am taking turmeric capsules so it may be that or the amantadine....

[shasha in reply to jillannf6]

how are you anyway ?

[hooperhyde]

Hi everyone, thank you for your kind words. I wrote this poem, not just for me, but for everyone that PSP has touched in some way. I hope people can take some comfort from it and encourage everyone to write down their feelings, it's very cathartic. Love to you all on this horrible journey xx

[SharonAB]

THANK you!

Regards,

Alana - Western Australia

[Buckeye7]

It is almost 11:30 this morning as I still lie here in bed, feeling both mentally and physically exhausted from the events of the last 4 days. My mother in law, Peg, called me Tues. morning from her assisted living home, ' I fell again this morning, Ithink I hurt my leg this time.' (this being her 18th fall in 2014) Peg made it 14 months in independant living apt, 6 weeks in her assisted living apt, now it is inevitable that she has no choice but to give up her last grasp of independence and will most likely days in nursing care.

[Sharon637]

So sorry for your loss, love and condolences to all the family. Thank you for sharing this wonderful poem which has touched us all so much. It's beautiful. Love and prayers xx

[quickgel]

There is nothing I can add to the comments thus far but wish to add my thanks and hope you can take comfort from your Mum's release from this awful disease. Kindest regards, Jerry.

[summergirlx476]

Thank You as well! I too am having to clear the tears as I try to see the key board. It's obvious we all feel your sentiments and what we live with every day. I'm so sorry for your loss and I send you love and healing. It must warm your heart to know your mom got to see Ellie's 2nd Birthday. Take care of yourself.

Big Hugs!

[jimandsharynp]

This touched my heart. You see, like most, I've yet to face some of these things. With strength and love I will survive.

Jimbo

[carolinesimmons]

This is SO BEAUTIFUL. What a wonderful tribute. As I read it, I saw what was to come. I hope I can be as calm and trusting as you have been. Thank you.

[hooperhyde in reply to carolinesimmons]

Always try to remember that no matter what, your loved one is always in there and that if some of their behaviour is frustrating or upsetting, it's the disease talking not them. It's been such a roller coaster for us as a family but we we're fortunate to have been surrounded by some wonderful professionals who took great care of Mum. I hope people take some comfort from this poem and forum, as have I.

[MaddyS]

Hi hooperhyde. You made me cry, what a beautiful and sensitive poem. Living with PSP has made all our lives very much alike. Our little granddaughter tells her grandad that she lives him, shows him her toys and drawings. Unfortunately he can no longer speak and tell her how much he loves her. Your mum is now at peace, please look after yourselves.

Maddy

[ultramodern]

With much emotion I now pronounce you, Hoperhyde, Poetesse Laureate Of PSP Sufferers & Carers everywhere.

You have captured every single thought and sentiment that has gone through all of minds at one time or another. Whenever we have struggled or continue to come to grips with this heart wrenching disease while caring for a loved one with PSP.

Mother,father, husband ,wife,grandmother,grandfather we all hear your love and pain in that beautiful poem.

Our lasting thanks for sharing it with us all ,Hooperhyde.

I promise you there's not one dry eye on this forum.

With you all in mind, best,brian,

[groovychick]

Wow beautiful xxxx

[nomansland]

I could not get myself to read your words past a few lines,,,after 10 years I am sure you know why...maybe tomorrow,l your mum is herself again and doing a greater job because of this horrible test she finally passed,love RD

[Short1]

Only just found your poem. Crying buckets. Husband is in nursing home cause after seven years of me looking after him at home he is too weak and in final stages. He still knows everything im saying and can only communicate with his thumbs up or down. My heart breaks and I wish he could tell me what he is thinking. Your Mums at peace and would be very proud of you. Cassie. X

[dadaroo]

Dear hooperhyde,

I am sorry for your loss. My father passed away February 7th. Although I know he is in a better place I still miss him. This poem is really beautiful . Thanks for posting.

[lemmej]

Hello Hooperhyde, thank you so much for this beautiful poem, it is an expression of how I felt and still feel since Mummy's passing just over 3 months ago on Dec 17. Watching this disease consume our loved ones is a heartbreaking experience, all we can do is to love and pray and love and pray. I miss her so much but I am consoled that she is at peace with the 'Daddy God'. My heart goes out to you, may the love of God comfort you at this time.