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The world keeps spinning ....
Posted: Wednesday, August 2, 2017 6:55 PM
Joined: 5/30/2014
Posts: 556

Thanks, Tess, for thinking about me.  That was much appreciated.  Veteran's Kid told me today she had seen your post asking how things were.

It's all very, very different.  It's now been @ 2-1/2 months since Deb left us.  I've started to get back into the world a little.  We went back to our home church two weeks ago & got a very warm reception, which really helped.  We've had one meeting with the grief counselor that was helpful.  My cousin recommended a book for me to read:  Life After Loss.  I've finished about 3 chapters of it & need to read some more.  I feel like I'm now in that awkward silent stage.  You know, where people don't want to bring up your loss anymore and are almost afraid to ask how you are.  They won't bring up Deb to me much.  That really hurts.  Today one of the guys at work actually asked about how I was adjusting & doing.  I had to look at him twice since hardly anyone seems to be able to do that.  I thanked him for asking & told him it's been very hard, but I'm trying to get back out into the world again. 

That's the strange thing about loss.  When you experience it, your world STOPS.  It just plain stops spinning - though the "real" world keeps on spinning around you.

I had to actually deal with Medicaid last week.  They sent a letter to the SNF where Deb had lived, addressed to her, & it was referencing herself as the "deceased person."  Really??!!!  That's just plain crazy.  I got a call from Social Services at the SNF about the letter.  The gal said she'd never seen one like it before & then read it to me.  It was the State looking for assets she would have had for the State to recover since she was on Medicaid!  I just thought, "These people are insane!!!"  She had Down Syndrome and the only "assets" she had were a bunch of stuffed animals & some dvds, besides her clothes.  Geez.  So, they sent me the letter, I called Medicaid for some explanation of a couple of things, had to leave a number to call me back & they NEVER did.  THREE days later I called again & got a live person.  Asked my questions & the guy wasn't very bright.  I just felt sick with the entire process.  Hopefully I'm done with them.

I haven't even touched anything of hers in her room at our home yet.  I've got bags of clothes & stuffed animals.  I did ask the Associate Pastor at church if she could provide a place that may be able to benefit from all the stuffed animals.  She had a ton of them as it seemed anyone who came & saw her, brought her one & they all look brand new.  I want to at least get things going with those with the holidays coming faster than you can blink.  I want some underprivileged children to get to enjoy them.

My own health has been still struggling.  I saw my rheumatologist on Deb's 1 month mark.  He told me even though my joints weren't looking very good, he wanted to give my body 3 months to "calm down" after losing her & he'll decide in September if I need more meds.  I think I just need more sleep & a vacation would be nice.

Two weeks ago a longtime friend (known her over 25 years) passed away at the young age of 60 of brain cancer.  Bob & I went to her visitation.  It was at the SAME funeral home, in the SAME room as Deb's.  Wow.  That was a hard one.  It didn't seem to bother Bob, but I just kept thinking it was the last place I saw her.  I just cried & cried after we left.

I've tried to stay active in the Caregivers Group of Aging Down Syndrome I belong to so hopefully I can pass on some knowledge & help to them.  I've been able to answer a few questions & help some.  I'm praying her SNF really benefited from everything I would print & take them & the talks I had with their Executive Director about aging Down Syndrome because I know, for a fact, they've gotten more.  Deb was their very first one.  She paved the way.

So, that's it for now.  I try to keep putting one foot in front of the other, but the pain in my heart is very, very deep from losing Deb.  Though our parents had her in my care for 14 years where I was her primary caregiver, I feel like I cared for her one way or another most of my life.  I was only 4 when she was born & we shared a room growing up.  I just keep telling myself over & over what a wonderful place she is in now & I know we'll never truly be apart after a lifetime of loving each other so much.

God bless you all here who grieve & suffer the loss of the loved ones you so lovingly cared for.

Posted: Wednesday, August 2, 2017 8:33 PM
Joined: 9/18/2013
Posts: 243

Pam14 wrote:

I had to actually deal with Medicaid last week.  They sent a letter to the SNF where Deb had lived, addressed to her, & it was referencing herself as the "deceased person."  Really??!!!  That's just plain crazy. 

My mother received a letter from Medicaid about a month after her death, addressed to her, also referencing her as deceased stating her benefits were going to be discontinued. Then just 3 weeks ago, Medicaid sent a letter to me stating they were going to make a claim against her estate for approximately $55k. gotta love 'em.