Saying goodbye...

I am truly sorry for your loss. It seems you were blessed to have such a wonderful person in your life. May you find peace.

She, I am so sorry for the loss of your husband. I remember very well some of your posts. I pray that you will continue to heal and day by day recover from the ordeal that you have gone through. You sound like you are well on the way.

She1934: Firstly, I am so sorry for your loss. Secondly, I found your post simply beautiful! When I got home from out-of-state caregiving for my late mother, I sought out the help of a psychiatrist to relieve my sadness.

She1934 - What you wrote was very touching and full of love for your dear husband. It brought tears to my eyes. I agree, the memories of the good times are priceless treasures. I am sure you have many of them with your husband.

I, too, am lucky to have a handsome, blue-eyed, funny and talented husband whom I love dearly. He makes jokes all the time, a lot of them at my expense, but they are really funny and I love them. Years ago, I kept a log of all his funny jokes so I could remember and read them later. Unfortunately, the log was in my computer that I no longer have. I really should start writing them down, in my journals, along with other memorable things that my my kids say and do. Soon, they will grow up and be out of the house. Memories are all we will have left after our loved ones are gone.

Take care of yourself and the precious memories of your husband.

My heart goes out to you, She. Will be praying for you. (HUG)


My Memory Library

Imagine if I was given one moment,
just a single slice of my past.
I could hold it close forever,
and that moment would always last.

I'd put the moment in a safe,
within my heart's abode.
I could open it when I wanted,
and only I would know the code.

I could choose a time of laughing,
a time of happiness and fun.
I could choose a time that tried me
through everything I've done.

I sat and thought about what moment
would always make me smile.
One that would always push me
to walk that extra mile.

If I'm feeling sad and low,
if I'm struggling with what to do,
I can go and open my little safe
and watch my moment through.

There are moments I can think of
that would lift my spirits every time.
The moments when you picked me up,
when the road was hard to climb.

For me to only pick one moment
to cherish, save and keep
is proving really difficult,
as I've gathered up a heap!

I've dug deep inside my heart,
found the safe and looked inside
There was room for lots of moments;
in fact, hundreds if I tried.

I'm building my own little library,
embedded in my heart,
for all the moments spent with you
before you had to part.

I can open it up whenever I like,
pick a moment and watch it through,
My little library acts as a promise
I'll never ever forget you.

Sarah Blackstone

Thank you for listing the two books.

It is almost 3 am and as I sit in my chair, the tv on, my tears are those of such gratitude for the many kind words you all have posted. My journey was not as long as the one most of you are going through. My husband was not diagnosed until 2016, though I knew something was terribly wrong. It was so hard to get his primary care doctor to refer us to a neurologist and then to get tests done. Even then, with CT scans, the results did not show anything more than mild degeneration. But his journey, once we got a diagnosis, was shorter than most. Still it was such a long goodbye, with so many huge changes in his cognitive and physical being. The tipping point was when his swallowing started to become difficult and he deveoped pneumonia on three occasions. We then transitioned to thickened liquids and pureed foods. At that time his day and nighttime bowel and urinary controls were gone completely. He became very violent and his sundowning worsened quickly. My memories of those months haunt me still and resulted in multiple trips to the ER. His primary care doctor advised me to refuse to take him home. At that point we found a nearby skilled nursing facility-it was only four miles from our apartment, it was easy for me to travel back and forth. They also allowed me to bring John's sweet pup to visit. I also took "Sam" to visit other patients. It was during this 20 day period that our Sam was diagnosed with congestive heart failure. I did not tell John because he would not have fully understood. Sam did well on medications, for awhile, but passed away 2-1/2 months after John's passing. It was on that morning that my heart broke open completely. The pain of losing the comfort of Sam was just too much. I know that I will heal and I hope that your experiences, as you do the best you can to care for and to provide care, to your loved ones, will, when your journeys are over, leave you with insights to help others.

I love the idea of a memory library.  It feels as if you wrote it for me. Thank you for sharing. I lost my husband of 42 years, my best friend, in October, 2018, after a nine year struggle with Parkinson's. ln the end, I had Hospice, but, I provided all of his care in our home and it was exhausting. My grief journey started before he died, because the life we had before PD was gone.  At night, I would read this blog and always found something written that helped me to carry on.  I look forward to more of your writings and wish you continued strength and God's blessings on your journey.

She, based on your last comment, very similar to my dad. He was only diagnosed in 2016 and progressed very rapidly and died last year. Ironically, I felt a bit ripped off as I heard stories where such patients lasted many years. I know I would not want that for my dad, but at the time I felt upset. He lived 90 years before he was even diagnosed and had a two year bout after that, so if he had to go it was probably relatively easy but that does not make it easy as you are experiencing.

And I don't think it will ever be easy for you, especially the spouse who lived with him all those years. But my dad passed last April and after pushing a year now, it has become somewhat more tolerable and I am able to smile and laugh when thinking about him again. And I do think over time, it will in some way become more bearable for you.

Karsten - I do remember how hard it was for you when your dad passed last year. I'm glad to hear that you're doing much better. Very glad.