Greetings from Juneau, Alaska!!!!

I and a team of the most amazing folks have traveled to our capitol to speak with our legislature about senior care. This is quite the accomplishment considering the unique geographic properties of our state. First, there are no roads into our capitol you must fly or come be ferry. Second, this year we had some weather………….challenges. I arrived Friday night just in time for snow, bitter cold, winds gusting to 80 mph, did I mention cold? Shivers To be honest, I was actually concerned that the rest of the team would not make i. But sure enough, Sunday afternoon in trooped my “Battle Buddies”.

To be honest, Sunday afternoon was spent with great food, good friends (new and old) and lively conversation. The energy that flows is almost visible. Each of us is equally passionate about what we do. We have representatives from, adult day care providers, nursing home (we have one), assisted living facilities, caregivers, Alzheimer’s Resource Agency, and so many others. It is so exciting.

I am now one of the veterans, as I have participated all 3 years we have done this. We are hopeful that our requests will be heard, thoughtfully considered and maybe even moved into the budget. As AGENET, we are asking that our Medicaid reimbursement rates be increased as they have not seen an increase in 10 years. The state is actually conducting a survey to review our programs, make suggestions for a one time “catch up increase” and then establish a methodology for reviewing and revising the rates annually. This is exciting stuff for us.

We are also requesting that the language in our Medicaid waiver be broadened to include a stand alone diagnosis of Alzheimer’s and related dementias. Again, huge! The beauty of this piece is we are also very concerned about folks with traumatic brain injuries (TBI). Our current ruling, says if you are not physically unable to perform the activities of daily living (ADLs) you do not qualify for the waiver. This waiver provides free care for our loved one for some of the following services, respite, care coordination, medicines, physicians, hospital care, durable medical equipment, chore services and personal care attendants (PCA). As you can see they is a gap in our current system and those that cant remember how to dress themselves but are physically able to do it; do not qualify for these services. We found by reminding the legislature that our Pioneer Home (only nursing home facility in our state) would benefit from the change.

Oh the Senators and Representatives blustered, once they ran out of steam we reminded them that if we broaden the definition (so to speak) we also be able to recoup monies for those already receiving state funded care. I swear, you could see their ears perk up and I was afraid one might injure himself his neck swiveled around so fast. We explained that by broadening the definition and allowing those folks that fell in the “gap” to enroll, we would be recouping monies from the Federal government. See the feds pay a percentage of the Medicaid bill for the state…..so if we could now add folks already in the home and receiving state funded care, we might actually enroll enough folks to have a surplus in federal money. They have commissioned a study and it looks “promising”. WHOOT

And finally, my favorite FACES. Cute name, hmm? FACES stands for (Family and Community Elder Supports). In our state charter, the state identified that the state did not choose to have build nursing homes but to keep people at home. Under that direction, the state provides grant funds for in home and community programs that assist families (like all of ours) to keep our loved on at home. I am talking about, meals-on-wheels, transportation, adult day care, education for familes, respite, PCA, chore, etc… It goes on and on. These programs have also been flat funded for 10 years. So we are going in with guns blazing and asking for 1.5 million for operating and 2 million fr capital improvements.

So at the time of writing this I am preparing my remarks to testify before the Health and Human Services Committee and then a meeting with the governor’s budget liason (this is the woman that actually writes the governor’s budget). Hopefully, we will be able to move the committee and the governor to find the funding for these increases, we certainly know they are effective and under funded. I will leave you with one number that I will share with everyone I can today. The In-Home-Grants costs about 700/year to support the family caregiver. Our nursing home, 20k a month with a total budget last year in the neighborhood of 60 million. So keep everything crossed and I will let you know what happens………

Retrospection

I miss my dad.  I miss caregiving, somewhat like a parent that misses teaching their kids to walk.  Every day it comes back in waves.  Mostly nice pleasant waves.  Memory and time has made it all seem so rosey.  I am now an hr manager and find it amazing how useful our dementia journey was.  Not a day goes by that I do not meet someone in crisis.  Recently I had a coworker tell me how ill her father is.  We talked about the fear frustration and sense of incoming doom.  We described it as being rooted on the beach watching the tide roll in.  You see it.  You know it is coming.  Nothing you can do but wait, bargain with the wave, deny the wave, be angry with the wave and the accept the wave.  Sound familiar?    In case you missed it those are the stages of grief.  But they are not just about grief they are about faith and change.  Faith and change?  Yes.  We as caregivers have to accept that change is inevitable and have faith the wave is coming and it will not destroy us.  The wave comes in and rocks us, the water boils around us, creeps up our body and we are mired in the sand.  We have no escape but most importantly we saw the wave coming and held our ground and when we stared it down it did not consume us.

So go to your personal beach.  Take stock of the wave and prepare to stare it down. And when you are safe and dry and warm and you meet the future survivor struggling to their beach stop and share their load.  Sit on their blanket share a meal a drink or a moment.  Lighten their load if even for a moment.  You will both benefit.