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We have a lot to give to others from our own experiences ...
Posted: Sunday, January 13, 2019 11:00 PM
Joined: 5/30/2014
Posts: 555

I joined a forum for caregivers of aging Down Syndrome with Alzheimer's about 3 months before Deb passed.  At the time I believe there were @ 60 members on that site - some caregivers & some medical professionals hoping to learn from the caregivers of how to care for this new generation of aging Down Syndrome with Alzheimer's who had never lived this long before.  As you all know from my posts when my sweet Deb was here, they didn't have a clue on how to take care of her.  When Deb passed, she was probably the second or third to pass on that forum.  Many gave me their condolences but had not gone the entire journey yet, so they really didn't know what it was like.

I've stayed with that that forum as it has now grown to over 200 & tried to provide as much help as I could.  Then I met Lisa.  She had guardianship for her DS brother with Alzheimer's.  I followed Lisa & her brother's journey & was able to answer questions about symptoms & things that came up with him that Deb had experienced & no one seemed to know what they were.  I was able to help her help his medical professionals.  Then he needed hospice.  Lisa & I messaged back & forth as the days passed & she needed advice & support.  Finally, the week or so before Christmas he was at a point where they thought he could pass any time.  Lisa decided to take him out of the SNF & move him to her home to pass away.  She didn't want him to die in the SNF.  Two years prior she had done the same for her mother.  Her mother spent the last two days of her life in Lisa's home, surrounded by those who loved her.  She wanted the same for her brother.

Little did she know her brother would hold out 2-1/2 weeks there.  Lisa lives in PA & I'm in MO, but we could be together by cell phones.  We talked many days leading up to her brother's death.  Days when she didn't think she could do it another day.  Days when she didn't know what was wrong with him & no one else did.  I had experienced those same type of days with Deb.  We thought he'd pass around Christmas, but he held on.  He hadn't spoken in quite a while & all of  sudden had a day where he spoke & ate.  It was a wonderful day for Lisa & her brother.  I had told her that was his rally day.  He lived several days past his rally day.

On New Year's Eve she texted me that he was hanging on, she didn't know what else to do, & didn't know how much more she could take.  We talked & texted all day that day.  Finally, late that afternoon, she texted, "I don't know what else to do for him.  Do you think I should try to reposition him?"  I said, "Yes.  Try that.  It worked for my dad."  The next text I got came about 14 minutes later and merely said, "He's gone."  I was sitting in my recliner, at 4:41PM on New Year's Eve & I just sobbed.  I knew the pain in Lisa's heart & the memories of Deb's passing hour came flooding back to me.  My husband was so concerned about me & wanted to console me.  I told him that I'd be okay.  I needed to get this out.  I had just helped Lisa do the hardest thing she'll have to do in this lifetime - get her handicapped brother to Heaven.  After all, helping Deb get there was undoubtedly the hardest thing I've done in this lifetime.   

My point is we have much to share with others about what worked & what didn't work for us.  I somehow felt that by helping Lisa it was making up in some small way for all the suffering Deb had to go through, as well as my own frustrations back then when NO ONE had answers as to what she was exhibiting or what to do.

As hard as it may be, I believe I'll continue to make relationships with that group & try to make sure others don't suffer as much as Deb had to suffer.  After all, I truly believe God put us all here to love and help each other.  

God bless each & every one of you who are grieving your loved ones, as I continue to grieve the loss of my very sweet & loving sister.

Posted: Monday, January 14, 2019 7:22 AM
Joined: 5/14/2018
Posts: 259

Hi Pam:

Your story has touched me.  What you did for Lisa was truly selfless and so kind of you. I too believe that we can all offer others who are walking or about to walk in our shoes, our kind and loving assistance. I try to help whenever I can.  I do believe that by helping Lisa, Deb's death was not in vain and you paid it forward. 

God bless you, xoxoxoxox -Kat

Posted: Monday, January 14, 2019 10:32 AM
Joined: 11/9/2017
Posts: 305

It is a great, heroic, and beautiful thing you have done. 

We are in callous times where even some of our doctors don't have time and inclination to help. 

I hope you and Lisa stay in touch for the horrible days ahead and that you continue to help others. Sometimes it is something we have to do  

You were someone's lifeline. 

Posted: Tuesday, January 15, 2019 5:31 AM
Joined: 5/21/2016
Posts: 2010

Pam, You did a loving and beautiful action supporting your friend.
Posted: Tuesday, January 15, 2019 8:01 AM
Joined: 1/8/2016
Posts: 365

Pam, simply put that is truly beautiful. What you have experienced and how you are helping others is God's work and yes we are here to help one another. And, as you do this you are healing too.

I know life has thrown some major challenges your way and through God's grace you are here. You are a beautiful person and I just know your loved ones are smiling with pride watching over you.

Thank you for sharing