Advocacy

actionalz-logo2Having been through this experience, and now having lost my mom, I feel more compelled than ever to advocate, ADVOCATE, A-D-V-O-C-A-T-E!! Those of us who have suffered the wrath of Alzheimer’s or related dementias owe it to those who come after us to do what we can to advance the Alzheimer’s agenda in this country.

The Ohio Council of the Alzheimer’s Association is made up of the seven Association Chapters in the State of Ohio and exists to advance Alzheimer’s initiatives at the state and federal levels. The Council’s web page is a great source of information regarding upcoming events as well as a list of state and federal public policy priorities.

Are you educated on our government’s plans and priorities concerning Alzheimer’s and related dementia? There’s a lot going on, and our support is needed!

  • The (Ohio) Uniform Adult Guardianship and Protective Proceedings Jurisdiction Act (H.B. 27), passed December 20, 2012. This bill will simplify and standardize the process of obtaining guardianship across state lines, which is critical for families who are in crisis but do not have advanced directives in place.
  • (Ohio) Alzheimer’s Respite Programs and Services (Budget Line Item 490-414) provide funding for respite care, which can be a true lifesaver for full time caregivers.
  • The National Alzheimer’s Plan, unanimously signed into law in January, 2011, aims to enhance quality of care, expand support services for those suffering from the disease and their families, increase awareness, improve analytics, and most importantly “prevent and effectively treat Alzheimer’s disease by 2025.” This is an ambitious agenda, but one that we must push forward.
  • The Alzheimer’s Breakthrough Act (H.R. 1897), if passed, will make Alzheimer’s research a priority for the National Institutes of Health. Did you know that for every $28,000 the federal government spends on care for Alzheimer’s disease patients, it only spends $100 on Alzheimer’s disease research.

Consider this: If there were a treatment that would delay the onset of the disease by just five years, it would reduce government spending on Alzheimer’s care by nearly 50%. Without a viable treatment, over the next forty years the estimated cost for care in America is $20 trillion, including $15 trillion to Medicare and Medicaid. Sound like this needs to be a priority??

  • The HOPE for Alzheimer’s Act (S. 738/ H.R. 1386), if passed, will provide for early diagnosis and access to care planning services leading to better outcomes for individuals with Alzheimer’s disease and their caregivers.

…last Friday at this time…

…we knew we were nearing the end. By early evening, I was convinced Mom would not make it until morning… but she did, and then some. Makes me smile to think that she was in the driver’s seat right up until 12:05pm on Saturday when she left this world.

It still feels as though time is standing still… and has been for the past month. I need to do this, that, and the other, but don’t want to do any of it. Jess and Courtney took care of getting the rest of Mom’s stuff from Eason House yesterday. I had every intention of going with them, but all it took was Jess saying, “We can handle it, you don’t have to go,” to talk me out of it.

As they began bringing stuff in the house, I realized that, for me, this task would have been harder than I anticipated. Just seeing her clothes put a lump in my throat. Sometime today, I need to go through the dresser drawers, but thankfully last night Jess talked me into sorting everything that was piled in the living room.

It was after midnight as we pulled things out and sorted into keep/donate/toss piles. Although I really wanted to put it off, I’m glad it’s done. My back room is full of boxes, but mostly pictures and such. I’ll get to those when I get to them.

I’m not sure if it’s the melatonin I’ve been taking at a friend’s suggestion or just sheer exhaustion, but once I fall asleep, I’m sleeping like a rock. My body clock, however, is way off the mark as I’ve been staying up until 3 or 4am. Last night, I slept in the recliner, woke up at 8:30am and thought I was up for the day until I passed out on the couch and didn’t move until almost 1pm.

photo(20)Expecting a call from the funeral home today to come by… I’ll be glad to have Mom here with me again, although I think she’s here already. My mantle is decorated with fresh pine clippings and strategically placed shiny round ornaments… the other day, Jess and I were sitting here minding our own business and a bright blue ornament fell to the floor – for no reason at all. Nothing had touched the mantle, the Christmas balls had been nestled in pine clippings protecting them from rolling away. Last night, I looked at a bowl of pine cones sitting on the hearth, and there sat a shiny green ball amongst the pine cones. Not only did it “fall” from the mantle, but fell right into that bowl…

Christmas in Heaven

Thank you, Molly, for sharing this special poem… what a beautiful scene to envision…

me-mom-xmas

I’m Spending Christmas with Jesus Christ this Year

I see the countless Christmas trees,
Around the world below.
With tiny lights, like heaven’s stars,
Reflecting on the snow.

The sight is so spectacular,
Please wipe away that tear.
For I’m spending Christmas,
With Jesus Christ this year.

I hear the many Christmas songs,
That people hold so dear.
But the sounds of music can’t compare,
With the Christmas choir up here.

For I have no words to tell you,
The joy their voices bring.
For it is beyond description,
To hear the angels sing.

I can’t tell you of the splendor,
Or the peace here in this place.
Can you just imagine Christmas,
With our Savior, face to face?

I’ll ask Him to light your spirit,
As I tell Him of your love.
So then pray one for another,
As I lift you eyes above.

Please let your hearts be joyful,
And let your spirit sing.
For I’m Spending Christmas in Heaven,
And I’m walking with the King.

~© Wanda Bencke ~