Re: hope for the best, but plan on the worst (GARY)

[Guest guest]

,

 

My name is Ron. I don't post nearly as much as I used to because my loved one,

my mom, passed from LBD in March of 09. I was mom's primary caregiver. She had

always feared nursing homes and so when she got sick, I made it my passion to

keep her out of one. She had been dx around early 04, I believe, with

parkinsons. My dad was still alive. Even way back then, she would forget things

and become very angry with my dad, but we, trusted the dx because we had never

heard of Lewy at that time. My dad passed away on New years day of 05. After

many family meetings and family squabbles, it became clear if mom was going to

remain in her own home, it would be up to me to take care of her. I moved back

home with her and so it all began

 

Instantly I knew there was something more going on than parkinsons.She would cry

and hallucinate...You know the routine...So finally my sister and I researched

lbd and when we took the info to her, then neurologist she was from that point

on able to be at least treated for the right thing. , Im writing because so

much of your feelings and fustration are so real and familiar to me. For four

years, I became seemingly cut off from the rest of the world.No time for

friends, or a social life,..Hell, there were times when sleeping and eating

wasnt in the cards for me. I felt like I was the only one in the world going

through this.And then I'd look at mamma and it hurt so bad to see her go through

it.And it truly felt like it was never going to end ...That she and I were being

punished for something. Loneliness was unbearable. I did get some happiness from

sharing with other caregivers here on this site but even that sometimes felt

insufficient because

the Lewy world is so much different than the rest of the world. And I had no

one in my own town or even close that could understand or I could reach out to.

My health started to go down hill. I was put on anti depressants, I got stomache

issues, had to have a sphencteroronomy (spelling?).And many other issues.I

remember the days when I privately talked to God and asked him to end this for

both of us....Seemingly unheard.

 

, one thing I made sure and do,(possible because i had recently lost my

dad), was to embrace every little moment with mom....Every hug, every time I

actually saw her sleeping peacefully, which wasnt alot, etc. This will not be

forever, my friend. The time will come when you lose her, And life will change

as it always has throughout our lives. Seek the little things, even if she

enjoys what you give her to eat..Remember to smile. Find time everyday to

dedicate to ...EVERYDAY!

 

If you dont mind my asking where do you live?I would gladly dig a little on here

and see if we could find you some respite care...That's very important for her

and you...

I have found now that mamma is gone, I miss her so much...Even the lbd side, i

am so grateful that we got to be together through those times.

I dont know why God picks certain paths for certain people. Its tough to figure

out, but I know that it all happens for a reason, maybe that only He knows...But

Im living, breathing proof that you will look back on this someday feeling

blessed that it was you with your dear wife during those days. Hang on my

friend, and keep posting, my email is dawgg4456@... if you would ever like

to connect outside of the group.Your wife is lucky to have a husband like

you and you are a good man. Dont be afraid to reach out for help....We truly are

all in this together and you are NOT alone.  

 

Best to you,

Ron

[Guest guest]

My heart aches for you and your situation.. I will pray for you. Please

connect with people in your area - a face-to-face support group - I know there

is a good one for Parkinsons in my area - I have not looked into the LBD ones

yet. You need help to come in and help you. One person can't do this alone -

thats for sure. With my Dad who has LBD - we have CNA's and PT come to the

house, and my sister and I help him and my mother tries to help too - she is 85.

Dad is 87. It is heartbreaking to have this terrible illness for your wife - so

young I am 57.!

Please keep writing and connecting with caregivers on here and try for in person

too.