Hello Friends : This smile is what I... - PSP Association

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bazooka111 profile image

This smile is what I captured this morning, before she went back down to sleep. Momma is sleeping more than she is awake, and my heart is breaking a little more each day.

I miss connecting with everyone on this forum, and Im sorry it has been two months since I touched base with you. I appreciate all the private messages, and I feel bad that I have not responded any sooner.

As most of you already know, this is a journey than can be absolutely exhausting -- and I am experiencing all of it. I am struggling with the reality of this horrible disease -- as much as I feel like I have prepared my heart ---

For the past week, Mom has been sleeping SO MUCH! Her appetite has changed! I manage to get moments of her being alert - like this picture this morning. I tried to feed her some breakfast, and managed a few bites -- and she looks at me, and can hardly keep her eyes open. In addition, she is holding food in her mouth, and I have to remind her to chew and swallow. I have no idea what tomorrow brings --- but, I am just trying to take things one day at a time.

I have read on here somewhere about the increased of sleep --- Assuming some of you have knowledge of this --- I keep praying its just a short phase and we will get back to what we have as the norm for the past 3 months.

Her voice is gone, the whisper has disappeared. We are now using thumbs up and down for simple questions. She can still bare weight on her legs, but her right arm is so rigid. In the picture below, you see her holding a cylinder shaped fabric "dog toy" -- this is because her nails are digging into the palm of her hand -- sigh, the things I come up with to try and help.

I appreciate all of you, and more than anything .. I appreciate the friendships I have made -- having a place to lay this all down, and YOU all understand.

Hugs to everyone!

Blessings -- slivers of joy are there, I am just working harder to find them.

Kim

46 Replies

Hang in there Kim. Thinking of you and your Mum.

Sending big hug and much love

Lots of love

Anne

bazooka111 profile image
bazooka111 in reply to Heady

Anne! Hi there! I hope you are doing good. Thank you always for the heart felt love of friendship — this forum is always a safe place to land for me. I’m hanging as best I can ... pushing through. Love back to you my friend! -Kim

Big hugs to you too Kim . That is a magical smile. I think that for you this is where the Serenity Prayer must come into play. Big hugs AliBee

bazooka111 profile image
bazooka111 in reply to AliBee1

I appreciate you more than you know AliBee! Thank you for always being there! ((Hugs)) Kim

Thinking of you both often!!You are so loved, Kim. It is all in that smile.

Courage! You can do this - and we will be there for you!!

Big hugs to you both!

Jen XXX XXX

bazooka111 profile image
bazooka111 in reply to honjen43

Hugs to you Jen - I read this as I lay next to my Mom — I adjusted her body and told her to move over Momma - I’m coming in with you. I’m laying here next to her body and she smiled —- she is just so tired. As I caress her forehead, a little smile appears —- I’m holding on the best I can —- I feel incredibly loved by you and so many here. My heart is full.

I know how it feels. Thinking of you and your mother Kim. Big hug from Jean xx

Hello Jean! Oh how I have missed connecting with all of you - thank you for always being here when I land ... these days with my sweet Mom have been the hardest .... watching the decline —- never really prepared. Big hugs back!!! 🥰 Kim

We are never ready when the next change happens - even when we know its inevitable. xxx

Kim,Cherish every moment. Even these difficult ones.

Prayers of strength and courage covering you,

Bobby

bazooka111 profile image
bazooka111 in reply to Beads0122

Hi Bobby! Hope you are doing good! Thank you for the prayers —- this is such a hard journey, of which most do not understand. I’m trying to push through each day ... she offers up smiles and that fuels my heart. One day at a time ((hugs)) Kim

You and Mama are in our hearts and prayers. Sending Hugs to you both... Granni B

bazooka111 profile image
bazooka111 in reply to Mottsie

Hi Granni B! I hope you are doing well. Thank you for the prayers —- I ended up sleeping with Mama last night — she woke up with a smile this morning, but still in bed. 😔 She doesn’t want to get up ... pushing fluids and hoping I can get her to eat something here soon. Hugs to you! I’ve missed connecting.

Mottsie profile image
Mottsie in reply to bazooka111

I have missed you too. Still not able to get on my facebook... oh well, they say l am not me. I remember when my mom was just like yours and know it is very difficult to keep your chin up and smile. Kim I know you are doing your best and that is all any of us can do. SendingHugs... Granni B

You have touched me with the great love you have between you and your Mama so lovely to see big hugs to you both Maggie xxx

bazooka111 profile image
bazooka111 in reply to fishponds

Hi Maggie!! So nice to hear from you! She is the most influential human to my soul - I’m grateful to have been blessed to be

her daughter. I look at her and am deeply saddened that she has missed and will

Miss some of the most anticipated years of her life —- she always said she just wants to grow old and love all of her babies. She has taught me the definition in action of loving others. ((Hugs to you my friend))

Hi Kim, thinking of you and your lovely mama, my Mike is about the same stage. Sleeping a lot and eating baby food and he loves mango sorbet. But the clenched hands and rigid limbs, excess saliva etc are distressing. Thank goodness we still get the smiles.

Hugs and love

Caroline

bazooka111 profile image
bazooka111 in reply to Caro2132

Hello Carolina - Im sorry to hear that you are sharing this stage of progression as I -- Mom is sleeping more and more every day -- today, I have called hospice to come in for some palliative care. Honestly, I just dont know what the days ahead are going to bring -- in my gut, I feel like we are entering a final journey --- She cannot hold her eyes open today, and I managed to get her to eat just a little bit (eggs, applause and ice cubes) 😔

Moms hand is clenched and trying to get her dressed is a real chore. She is so very tired.

Lots of hugs to you my friend.

Kim

Kim,Just as my husband John kept his smile till the very end, I am sure your mom will too. The ambiguous loss is as difficult as the grief is in the end. Treasure the days that remain.

Strength and courage,

Alice

Thank you Alice -- As I write, I am at her bedside -- she sleeps quietly. My heart is shredding at the thought of her slowly leaving me -- I am forever grateful to have had the honor to care for her as she cared for me. Thank you for the warmth and kindness -- it means the world to me right now. xo Kim

God bless you .. you and your mum will be in my thoughts and prayers . Enjoy every moment now and remember all the good days . With the love you have I’m sure there were many ❤️❤️

Oh KimThis all sounds so familiar. Just keep on keeping on. You're doing so well for your lovely Mum.

Thoughts and prayers with you both. Sending hugs xx

Hello KimMy wife seems to be at a similar stage of progression of this terrible condition. Everything that you have described is happening to my wife as well. Without the support of our carers I don't know how we would cope. I'm frightened of not being able to manage the emotions that one is going through. Thank you for sharing what you are experiencing.

Hugs to you both.

I think of you and your Mum a lot Kim, knowing you are following a similar path to what Mum & I did. Yours Mum's smile (if not as prevalent) is still as lovely and is there in her eyes. When speech fails us, physical contact continues to be comforting to both and hugs become more meaningful than ever. I am so glad you are still able to find slivers of joy, having to look for them makes them more precious, hold onto them tightly. I hope you will always be able to find them.

Sending love & hugs to you both

xxx

Love and hugs to you and your lovely mum. I think of you often xxx

Awww you touch my heart! This has been a journey like no other; Momma is so very tired, so very tired. ((hugs)) Kim

It was lovely seeing her smiling face the morning! Sending warm hugs to her and you!

My wife is also sleeping a lot. My guess would be somewhere around 18 hours a day and sometimes more. It is tough.

bazooka111 profile image
bazooka111 in reply to oilman1

I am so sorry to hear this -- Mom is sleeping more than she is awake, that is for sure -- and Im thinking more like 18 hours as well. I am going to send you a private message to chat about a couple of things. Kim

Still... that beautiful smile.

Tim x

bazooka111 profile image
bazooka111 in reply to daddyt

((Hugs Tim))

Hi Kim, I just love seeing your mum’s beautiful smile. You have created so many new memories with your mum that have given her so much joy and come up with ideas to make her life more comfortable . It’s a difficult and stressful journey looking after our loved ones with PSP/CBD and you have been amazing.

Thinking of you both.

Lots of love, Marion xx

bazooka111 profile image
bazooka111 in reply to Nanny857

Hi Marion! Thank you my friend - her smile is what keeps me going. These particular days have been so very difficult, yet — caring for her has been the greatest honor of my life.

I don’t know why so would do without all of you in my life —- few understand this journey, so .. I appreciate you! Xx Kim

It's so tough for both of you but her warm smile has lit up my day too. Hugs and prayers ;)

(Hugs) I have to keep looking for the good … some days it is hard to find, but her smile is medicine for my soul — everyday. Keep loving forward I say … find the slivers of joy. - Kim

Kim you must be exhausted. Caring for a loved one with PSP requires great strength and courage. I hope your beautiful mum is able to show you how much she loves you and appreciates your company . Remember you are so important to her. Take good care of yourself , treat yourself and be kind to yourself at all times. Sending you love, hugs and prayers ❤️💕xx

Thank you for your kind words … this forum is my “go to” … always offering the shoulder to lean on, I will be forever grateful. After a lot of nudging, I have finally brought in hospice/palliative care … should have done it sooner. Respite is an absolute necessity — even if I just take a car ride and cry it out —- and that is what I usually do. Or visit the new winery that is less than a mile from my home —- there’s that. 😌 one day at a time — ((hugs)) Kim

My heart goes out to you as it always does. I often mention to other how you have been an inspiration and continue to be. Please know I join all the rest of us here in sending you much love.

Cuttercat

bazooka111 profile image
bazooka111 in reply to Cuttercat

Oh Cuttercat! You have touched my heart this morning with your words. I have entered a season of sadness (internally) as I watch Momma decline —- on the outside … as she watches me with full awareness— I smile and remind her of how wonderful she has been as a wife, mother, grandmother, sister, daughter and friend —- she has been to so many. Positivity … constant reminders of her impact on so many lives, including mine!

Thank you for the love … always 💕

Kim

A warm hug to you and your mother Kim.

We miss your posts, but we understand when you can't.

It is such a demanding disease of care

We always are

listening, to understand you and tell you comforting thoughts. You are doing it very well!

Elena

bazooka111 profile image
bazooka111 in reply to wear1947

Hello Elena!

I hope you’re well! I appreciate your words, and I am forever grateful for you and the friends I have made in this forum. Mom is declining and I am doing the best I can to offer her the best care possible —- some (most) days are filled with sadness overwhelming my heart … but I do keep her entertained and smiling …. Quiet cries for me in the other room. ((Hugs)) - Kim

My God Kim, that smile is infectious for spreading cheer. My bride has definitely fallen of the last plateau in the past several weeks or so, and is sleeping more and experiencing some sun-downers symptoms. She is also in a lot of pain from muscle cramping, but she rolls around in her chair singing. Her grandkids are coming in 2 weeks, and it is all she can think about.

Hang in there Kim.

Warm Regards,

Dick

bazooka111 profile image
bazooka111 in reply to Dickwin

Hey Dick —- thank you for your comments and sharing. I’m hoping that the grandchildren have arrived by now, and she is smiling from ear to ear. I would love to hear about that! Mom enjoyed some of her grandchildren yesterday — although she can no longer express — except for smiling (I cherish that) … I know she thoroughly enjoyed their visit! ((Hugs to you my friend)

One day at a time … cherishing the moments.

Kim

Hi Kim,

I can understand how you're feeling, when you try your hardest to prepare, but sometimes that isn't enough. Can I ask about the sleeping thing? My mom is on a small vacation, may be her last, with her family and her sister was telling me she was having a hard time - which I knew she would as I'm her caretaker - but she said "I think she will be sleeping a lot now" and I wasn't sure how to respond to that. I noticed she preferred to sleep more than be up lately, but just wondering how normal that is for CBD/PSP patients...

I pray for your strength and comfort!

-A

bazooka111 profile image
bazooka111 in reply to ARutzen

Hello A - I hope you’re well as can be. My mom is sleeping a lot, however, I will say that the 15-18 hours has scaled back a bit. She wakes around 10:30 am, back down for a nap by 1:00 pm - 4:00 pm, and down for the night at 8:30 pm. Of course this varies some days, but this has become the new normal.

She has not had the use of her right dominant hand for quite some time, and now her left hand is becoming very weak, and can no longer pick up small items. Complete assistance eating.

Swallowing is a real issue … soft foods, and liquids are thickened.

Incontinence is becoming more and more of a concern.

We have palliative/ hospice care now … a nurse two times a week, and an aide coming three days a week to help with showering.

It’s so hard to watch her health decline.

Light and love — Kim

ARutzen profile image
ARutzen in reply to bazooka111

Hi Kim,

Ok the sleeping pattern sounds about the same as it is here. So far her swallowing hasn't gotten too bad yet, but she does cough a lot when she does eat. Incontinence has been an issue on and off, but sometimes it gets to be a lot when she has a UTI. We get the antibiotics and it clears it up, but she has had more UTI's than normal.

I feel you when you say it's hard to watch her health decline... it is... stay strong!!

-A

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