Reflecting ...

[bazooka111]

4 years ago ... This is a picture of Mom and I after one of my shows; doesn’t she look beautiful?

Moms role was taking care of all merchandise ... she handled all sales transactions, inventory and ordering. June 2015 she was struggling with inventory counts, and my husband came to me and said, “Honey something is going on with your Mom” ...

Prior to our show, she was showing signs in her walking, it was more of a shuffling — short fast steps. She would ask me, “Do you think I walk funny?” During that time she also was noticing that her beautiful handwriting was changing —- and she was struggling with “finding her words” ... she knew what she wanted to say, but just could not say what she was thinking; this continued to progress.

I will never forget her looking at me and saying, “ I think I may have had a stroke” ... I immediately booked an appointment with her primary care Doc — and then I took her to a Neurologist ... that started a journey of unknowns —- tests, suspected Parkinson’s, but not enough to really firmly diagnosis; this was the summer of 2015.

October 2015 - My Dad was diagnosed with stage 4 cancer —- my mom put her health on hold. From Oct ‘15 - Feb. ‘17 she became the caretaker to my father, doing absolutely everything for him. It’s amazing how she was able to care for him until the very end. Her first big fall was 3 days before he passed away ... we went through our grieving for some time ... but, I knew it was time to get her to a Neurologist. We ended up at the Cleveland Clinic in late 2017 when the official diagnosis came ...Corticobasal Degeneration.

Here we are September 2019 and so much has changed ... from walking with a cane to 90% wheelchair, soft speech, 100% adult protective underwear, swallowing issues, and full assistance in getting showered, dressed, etc.

I share this because this has been a familiar journey for all of you ... and very few understand.

New changes are upon us ... and I’m adjusting for the next “new normal” ... but we renew our strength each morning and face the day!

As long as I can continue to find the joy in each day ...new adventures to plan!

[Beads0122]

Your journey is far to familiar, and are correct in that many friends do not truly understand.

I continued to naively believe that the progression of the disease would plateau and that I would only need to provide continued support to my beloved. However this cruel disease knows no plateau. It continues the steady removal of capabilities until it finally and harshly takes our loved one’s life.

I grieve that my kids had to watch it. I grieve that my grandkids will not know the life well lived. However I cherish the memories and the life we shared.

thank you for sharing. Wishing you strength and wisdom as you navigate this time in your life.

Bobby

[Karynleitner in reply to Beads0122]

Bobby, your sadness with the impact on your children and grandchildren truly hits home for me. I grieve my children’s loss of their father and the fact that our grandchildren will never really know their grandpa. It is especially sad because he was such an extraordinary dad and wanted his grandchildren to have a wonderful grandfather . His own father passed away before our children were born , so our kids didn’t have a grandpa.

Their loss magnifies mine. The change in the dynamic of our family is crushing.

My husband is completely disabled and the rigidity continues to progress. I get up most mornings feeling strong and positive to make his day the best I can, but

by evening I’m tired, sad, anxious and full of worry.

Hugs to you. It’s a tough road. 💙

[honjen43]

Yes. A familiar journey.

Where your journey differs is in how obviously happy your mum is at your care and attention of her!

That wonderful smile of hers is so full of love. You have captured each moment with her and you will have so many memories to show her as the situation changes, and so many wonderful memories. A testament to your loving care.

Big hug!

Jen XXX XXX

[NannaB]

❤️XxxX

[SewBears]

Very familiar and similar to our story as well. You’re doing a fabulous job keeping your mom busy and happy. You can see your love for each other in every photo. A lot has happened in four short years. Making memories is about the best thing that you can do and live each day to the max. You inspire me to keep on keeping on and to try new things.

Thank you!

❤️

[enjoysalud]

Thank you for telling us/me of your mom's journey with CBD as you remember it. AS the journey continues it's difficult to remember when and how the first symptoms appeared.

I called (March, 2014) Jeff after a BIG R&B Art Laboe concert, he was the bass player with the house band. When I asked how it had gone, he answered "FINE", but his speech was slurred . I gave him feedback and he said, "YES AND I WOKE UP WITH DOUBLE VISION"......so began the journey.

Los Angeles, CA, USA

[doglington]

The only way to cope for me is holding on to how lucky we were in what we had.

Xxx

[SewBears in reply to doglington]

So true!

[raincitygirl]

I found it helpful to outline hubby's history too: it kept giving me perspective. (At the same time, when the end comes, its still shocking!!)

Your mom is fortunate at least to have you in her court 😊

Anne G.

[dollydott]

Your moms journey of CBD is so familiar to what we experienced with my mum

So sad Kim.

Hugs to you both. The photo is lovely thank you for sharing

Lynda 🌻🌻

[georgeg25]

No words, just ❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️

[LuisRodicioRodicio]

Thank you so much for sharing it.

Yes, it seems that only who has passed or is going through the PSP trip can understand the caregivers, especially the primary caregiver.

No one understands that PSP is outside caregivers.

This loneliness must be much more intense in the patient.

There is nothing left but to go ahead and try not to fall into depression, discouragement or drug addiction.

Hugs and luck to all chat partners on this painful journey.

Luis

[Heady in reply to LuisRodicioRodicio]

What is it about PSP/CBD that nobody understands. We all know that it is different, but how? Others with brain damage, stroke or cancer, mimic PSP, but somehow it's not the same. Is like someone said on an earlier post today, patients don't look ill. The lack of communication is in other conditions, so why so huge with our loved ones? Incontenance is prevalent in most long term illnesses, so why do we have such a hard job getting help?

I wish I knew, it would make processing everything a lot easier. I know Steve was ill and has unfortunately now died. That I have dealt with and my life is moving on, it's just this lack of understanding from all and sundry that I still have problems with. WHY??? Reflections, as you say Kim.

Lots of love

Anne

[LuisRodicioRodicio in reply to Heady]

Hi Heady!

Sometimes I think that this disease and its environment are only understood by those who have or are going through it.

I think it might be like the feeling of being pregnant and giving birth to a child that is very difficult for a man to understand.

Hugs.

Luis

[Northstar1]

I think you are a brilliant daughtercaring for your lovely mum xx

[bazooka111 in reply to Northstar1]

Wow ... thank you so much. I was thinking yesterday about this “caretaker role” .. and I have realized that I am the only person that I know in my surrounding family that has ever had to step up and care for one of their parents. I have to remind myself of this—-because all of them are just living their lives without even a minor adjustment and have the audacity to ask why we haven’t been over to visit ... I have to pray for patience and understanding with all of them. 🙏🏻

[raincitygirl in reply to bazooka111]

Some day, you might want to send them an email: "Why we haven't been over to visit" and outline what a day for your mom and you is like. They have no idea and if you/we (cuz we all do it..) keep a smile on our face and say "oh, fine fine" - they never will!!

I guess its a natural thing for people to focus on stuff they can do something about - and turn away, unconsciously, from stuff they can't??

Anne G.

[Karynleitner]

You are amazing. What a wonderful heartfelt post.

It is so tough. 💙

[Marilyn_cbd12]

I am so grateful that my husband (CBD officially since 2012; unofficially since 2006) wakes up every morning with a smile on his face, is happy to see me and gets through the day as best he can. It is stunning, isn't it, to see how many changes have taken place?

Marilyn

[raincitygirl in reply to Marilyn_cbd12]

.. And how different some sufferers journeys CAN be...13 years Marilyn! Both a blessing and a trial of Job!!

Anne G

[Richard33]

Yes, you are definitely doing a great job! Well done you.

Richard x