My Sunday soul speaks : Watching my sweet... - PSP Association

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My Sunday soul speaks

bazooka111 profile image

Watching my sweet Momma this Sunday morning, my soul reminisces of the past three and half years.

I watch this horrible disease take up real estate deep in her brain tissue, confidently claiming residency - and not one thing I can do to disarm this enemy.

PAIRED PROGRESSION:

Empty eyes

Giggles gone

Laughter lost

Warm whispers

Stories silent

Memories mute

Smiles still

Coughing chaos

Atrophy advances

Swallows stiffen

Brain battles

Disease dominates

Limbs labor

Reality reminds

Love lasts

Commitment continues

Weary Warrior

-Kim Myers

Caregiver Thoughts

September 2021

47 Replies

With you all the way Kim. Have replied privately too xx

I have no words to add. Big hug Kim. Love Jean xx

It's a tough battle but it must be done. 🙏🙏🤗🤗

bazooka111 profile image
bazooka111 in reply to georgeg25

Indeed it does — pushing through each day! Warriors!!

Kim,Love lasts and Love is important of these. Beautiful.

Blessings,

Bobby

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bazooka111 in reply to Beads0122

Blessings to you Bobby! I hope you’re okay! Xx Kim

Love and hugs xxx

I feel for you, be strong and hold her😘

I hear you and I feel this. It's like watching someone you love get encased in cement. Brutal.

Sending lots of love and big hugs xxxxTippy

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bazooka111 in reply to Tippyleaf

Tippy!!! I hope you’re doing well - I’ve really missed connecting with all of you! 🥰

Big hugs, Kim and Momma!We know how it is.

Kia kaha! Stay strong!

Love Jen XXXXXX

bazooka111 profile image
bazooka111 in reply to honjen43

Jen!!! How are you? So nice to reconnect - we are hanging in there, the best we can 🥰

Kim, the memories came flooding back reading your posts today. This is such a hard time. I remember feeling such utter exhaustion; mental, physical and emotional. So much guilt, because no matter what I did, I could not protect John or myself from the inevitable. Keep holding her hand, telling her that you love her. For me, this was absolutely the hardest thing I have ever done. I am so proud of myself that I made it through for John. I also learned that I am really, really strong and so are you. We all are that pass through this journey. You are and have been a great daughter. Know that. Your momma is a lucky lady to have a daughter like you. We are all here for you, but as you know, it is a solo type of journey.Wishing you strength, courage and always an abundance of love. Alice

Oh Alice, your words have pierced my heart this morning. It’s a mixed bag of emotions, and large bag it is. It’s a solo journey, and so few understand; even those that are close by, they still do not get it. (i.e., my Aunt drops by to say hello for 30 minutes tops, with a car load of goodies from her afternoon shopping spree; which I can’t remember the last time we’ve had that luxury. I had mom all dressed nice for the visit, right down to her ear rings and lip gloss (she felt and looked beautiful) - and my Aunt looks right at me and says, “well, I think your Mom has improved, she looks great - have you taken her to be re-evaluated??” ….. deep breaths for me. One day at a time on this end!!

I ache for you….I am still dealing with the loss of my husband Bob….I will never be the same, people on this sight helped me through the journey, I am happy Bob isn’t suffering any longer, but the fall out for me is so hard 💔

Sweet one, I’m so sorry. So very sorry. I cannot even imagine, and as much as I know what the future holds — I do not think our hearts are ever really prepared. My life has changed dramatically in caring for mom, and I will forever be changed once this season has passed. I hope you are able to reflect back to the happier times and hold those close to your heart - cherishing the joys over the years. I wish I could hug you. 🥰

Thanks for sharing, Kim. Reading through reminds me of a journey so few have been on. It is a privilege to share it with dear ones here. Now Ian has reached his destination, I realise how exhausted I must have been. But every memory, every moment fills me with a love that will always endure.Thank you, lovely lady.

Big hugs from sunny Spain.

Juliet. xx

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bazooka111 in reply to JCRy

Juliet!! Hugs back from not so sunny USA - it’s a rainy day here, but the sun is returning tomorrow! I have shared several beautiful afternoon rides with mom in our convertible— I call her Hollywood! She smiles — sunglasses and the wind thru her hair; special memories made these last few months that I will forever cherish! Hugs to you my friend! - Kimxxx

You’ve hit the nail on the head. Hugs and understanding. Px

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bazooka111 in reply to Afar

Thank you - those words just flowed the other morning, as we say for our morning coffee. I found myself in a trance as she navigated what used to be a simple task of picking up her mug. The downward slope of all the little things started to fill my heart, and I have learned that journaling … writing things down, has been quite therapeutic for my mental health. ((Hugs to you))

You write so beautifully. You captured the truth of PSP’s devastating advances against our loved ones. My heart hurts for you……it’s just so emotionally hard to watch.

Thank you 🙏🏻 It’s funny, because I have written poem/prose in a very long time — but I have been writing my thoughts down lately — it has helped me. Some days are grueling … with Covid life, so many things have changed … so now, I find myself writing a bit more. Therapeutic release. ((Hugs))

Do whatever it takes to find relieve from the daily heartache of this disease. Don’t do what I did these past few weeks ….Unfortunately, “post ex’s passing” I found pizza help sooth the soul. WRONG!

Beautifully written Kim and so moving. So painful to watch yet we do what we can to alleviate, you especially. Sending strength and love.

Thank you friend. I hope you’re doing well. I’ve missed connecting with all of you! ((Hugs))

A big hug.Luis

Hugs back to you Luis!!! I hope you’re doing well!!

Thank you.The best for you.

Hug. Luis

Oh Kim, I can so identify. But whatever awful things this disease brings upon those we love, it can't destroy that love and that is what keeps us strong and makes the love we share all the more precious. Make sure you take care of yourself as well as your Mum. xxx

bazooka111 profile image
bazooka111 in reply to AJK2001

Oh your words are so true!!! Nothing can take the love we share, that is for sure! Momma’s strength amazes me —- I am honored to be the one chosen to care for her so gently, as she once cared for me. Humbled, I am. 😘

Beautifully written Kim and oh so true. Love to you and your momma. ❤️

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bazooka111 in reply to Nanny857

Hi Nanny!!! I hope you’re well - we are managing the beat we can; Momma is easy to love - I am blessed.

Nanny857 profile image
Nanny857 in reply to bazooka111

Kim you are both blessed. You to have such a lovely mum with her beautiful smile in spite of all she is going through, and your mum to have such a wonderful, loving, caring daughter as you. 💖

Thank you so much for the powerful pairings. It gives me a picture of what is ahead. Peace and Love to you and your mom.

bazooka111 profile image
bazooka111 in reply to Runner333

I have read on your page that it is your husband with diagnosis; I’m sorry to hear this . How long has it been since initial diagnosis. Be sure to take care of yourself in the process. Here if you need an ear — or a shoulder. - Kim

Runner333 profile image
Runner333 in reply to bazooka111

My husband was diagnosed in Jan of this year. What mixed emotions with a diagnosis! Maybe it is all just a bad dream and I will wake up soon. Thank you for your support.

Hugs and prayers Kim. She still has that smile. It brightens my day each time I see it.

Tim

Sending Hugs to you both... Granni B

OMG! Reading your list is too much for me as I watch my own lovely lady slowly disappear. I would willingly give everything I have to have her back. What to do? Keep on keeping on as there really is no option. Take care!

bazooka111 profile image
bazooka111 in reply to BlairWit

It is the most unbelievable disease to me. I have watched my Momma slowly decline, plateau, decline, plateau… some days she will

audibly speak a word or two, and it emotionally takes me to my knees. I sit with her in the quiet, right next to her —- and I miss her so very much. She smiles and breathes life into me … we try hard to find those slivers of joy along the way. ((Hugs to you))

Bless you what a list but through it all I feel your love so much for your momma I have a lot on your list still to go with my hubby Take-care of yourself as well as your Momma love and hugs x

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bazooka111 in reply to fishponds

It is quite a list indeed—- I remember being on this forum early stages, and trying to comprehend all that I read; trying to imagine If all that I was hearing .. would that really happen to my Mom? Here we are, and I sit in disbelief at the progression. Take good care of yourself along the way, it is so important— self-care is vital. Hugs back to you!

fishponds profile image
fishponds in reply to bazooka111

Yes Kim Im finding things are progressing far to quickly Hubby fell last week the worst one so far very bruised and probable cracked or Broken fingers and then nearly fell again last night but managed to stop him It’s very stressful xxx

Kim, your words are powerful and touched me deeply. Beautifully expressed amidst all the pain that surrounds this disease. I am grateful for all those who contribute to this group-your Momma is truly blessed to have you by her side. Glad to see you are back sharing with us. HUGS!!!

It is so nice to reconnect. It’s been an uphill battle, and we are still struggling everyday - Momma is my hero —- and together we trying our best to navigate — I am weary as a caretaker … respite comes today and I intend to take some deep breaths. ((Hugs back to you my friend))) - Kim

This is the first time I’ve been able to write on this page for a long time, my heart goes out to you and everyone who is going through this dreadful illness, my Mum passed away nearly 8 long years ago and I miss her every single day, my Dad passed away in January from cancer, I miss them both so much life will never be the same….enjoy every moment you have with your loved ones, as once they have gone u can’t turn back the clock unfortunately 🥰🥰

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