Monday, January 27, 2014

January 10, 2014: In Memoriam: Life's End Here & Now

I've tried several times since Mom's passing to write a few words. I thought about many things as they happened and made notes but couldn't bring myself to put my hands on a keyboard and make an entry.

It's still so new and I know from my passage through this time three years ago there is no definitive way to mourn, no specific time period for its beginning or its end and no real way to predict how I will walk or even run through this bittersweet time.

It's difficult, too, because Mom passed on the third anniversary of the day we buried my husband.

I just knew it would be that day. When she didn't pass on Christmas Eve and when there were varying signs of changes I now see as signaling the end was very soon, I felt it would be that day, that singular day, she would leave us.

There is still much to be written; more to share. I'm gathering the courage to restart my writings and work to make a difference.

I still believe if we'd had more knowledge of Lewy Body Dementia, more recognition of the disease by those with whom we came in contact from November of 2010 until those days when she left this world, her life struggling with LBD, our life together, whether in our home or elsewhere, would have been more memorable for the positives rather than the negatives.

If we can make a difference in someone else's journey on this road with Lewy Body Dementia, with ageing and with Undue Influence and Elder Abuse and Neglect, we will have made a difference and honored Mom's life.

Time will begin to heal our sorrow but only change in the system of how we care for and about our most vulnerable members of society, our aged, remains my focus and my purpose for those who are now and those who will come to be dependent on others for their daily lives.

I will write more again. It's still too difficult. I struggle daily with other challenges that have continued since my husband's death of simply putting food on our table and keeping a roof over our heads along with my daughter's daily contributions to this focus.

RIP, Mama; you were my first best friend and thankfully we rebuilt this friendship to what it had been for decades before Julia came into our lives.

We continue, your only grand-daughter and I, to follow your lead.

Now I've been moved to the front of the line in the mother/daughter relationship.

I will try to place my feet to follow well in your footsteps.

I truly cannot thank you enough for all you've given me, for all in me that came from your examples and your choices in life.

You're home now, Mama.

You travelled the world and you began your greatest journey Friday, January 10, 2014.

Your life will be a lamp unto my feet to spread across the world bringing knowledge about life, love and understanding Lewy Body Dementia and other issues of ageing and family.

Thursday, January 2, 2014

Lewy Body Dementia's Advancing; What Are The Right Choices? Part 2

Lewy Body Dementia is compared to a roller coaster ride.

I'd add it's more like the whole Carnival experience going on constantly and we're the people who walked through the gate into one sideshow, another specialty act and various thrill rides,as though in a Dream that's changing constantly and we have no control.

We don't pick and choose where in the Carnival of Lewy Body Dementia we're at, where we might be in a few minutes or where we might be if we turn around or look away for even a minute.

LBD is not predictable. Or at least it surely hasn't been for us.

On Christmas Eve we thought Mom's passing was imminent.  We were told she hadn't eaten since earlier the day before. The facility had placed her in a Bariatric type chair and she was constantly sleeping. We tried to wake her for dinner but she couldn't be awakened.

We thought she'd been given something but her records didn't show any drugs.

She awoke only when being put to bed and then she screamed and cried and called "Mama, Mama, Mama".

When her brief was changed, we saw rawness and once again had to insist a better cream was used on her buttocks. There was no telling how long she was being allowed to sit in her urine and excrement.

We weighed the pain against the possibilities medications might drop the final curtain and decided to try a very small dose of a narcotic. It was the best decision. That and ensuring attention was paid to the perianal care she was receiving.

Isn't it against the law not to tend to someone's medical needs in an SNC?  Yes. Of Course.

Report it.  We have. Ombudsman makes a call or maybe stops by. Does it stop?  Not really. If we have caring attendants, and there are some, it's better for Mom. If they're not, Mom bears the burden of what daughter and I consider to be neglect.

Why isn't something done about this?  Several months ago the facility went through five days of "extensive" investigation by the State. Called before Christmas Eve and Mom's further decline and was told by the Hotline they were "interested" due to several reports.

Anything happen?  Haven't seen anything. After all, we were in December; holidays were coming; surely this was something that could wait????

And so more challenges go to the bottom of the stack in the annals of Missouri's "investigating" Skilled Nursing Faciliites. Or so it seems.

Death doesn't take a holiday.  Two more passed before Mom started another LBD advancement. A lady in an adjacent room is also following the same pattern as Mom; she's always sleeping her husband says; can't get her to eat, he says

How's Mom a week later?  She had a "recovery", being able to communicate and the day after Christmas really started to eat and seemed to be "coming around". Wonderful story to share in the next entry that will live long after Mom in our hearts.

Well, Mama, you made it into 2014. It's the year that marks 100 years from your birth in 1914. At times you've told me recently you celebrated your 100th birthday earlier in the year of 2013. If that gives you joy, that's fine. You've always said we never know when our time is coming and as always, you've erred on the side of not being overly hopeful and always simply accepting what life hands out and so you said at your 99th birthday how next year would be your 100th --- if you made it that far.

Mom seems to be in three day cycles: one day not good, one day seeming to be coming back, one day seeming to be "with it" and participating including some communication and ability to eat and use a straw (a skillset we thought might be lost as putting one in her mouth and telling her what it is didn't provide any action or results Christmas day but did the day after).

She's still very strong, though. Unbelievably so. I received a personal demonstration a couple of nights ago. More on that in my next entry.

The merry-go-round appears to be slowing, the hills on the roller coaster seem to be moving towards the final exit. The riders are controlled by the ride and can only hang on and go with the flow.