Tuesday, February 19, 2013

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………


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.

Tuesday, March 16, 2010

Alzheimer's Legislation

I wanted to take a minute and let folks know about 3 pieces of legislation we have pending in the United States. Even if you are not in the United States you may have similar programs. I would actually love to hear what you think about them or similar programs.

We have the Alzheimer's Breakthrough Act. This will allocate 2 billion dollars to the National Institutes of Health for research on Alzheimer's. What I love best about this bill is caregiving is included. It is not just prevention and treatment but....gasp...caring. *cheers*

The second is ADD CAP (Alzheimers Detection Diagnosis Care and Planning). This bill would bundle Medicare services to provide the gamut of services to increase diagnosis and assist with the care and care planning for your loved ones. As caregivers we know it is not magic, the caregiver fairy does not magically sprinkle caregiving fairy dust. It is thought, care and planning and sometimes elbow grease and hard work. We love it but we know it ain't for the feint hearted.

National Alzheimers Project Act. This would create an inter-agency office that would coordinate the federal government's efforts in the campaign to end alzheimers and assist caregivers. What a concept a plan.

I just attended the Alzheimer's Action Summit and am excited and ready to work for all of us. I may not be actively caregiving at the moment, but every day I think about my experiences and your experiences. You are doing an amazing thing. Your loved one appreciates it and you, even if they can't express it. I know my mother had such guilt about her impending death, she felt awful leaving me to care for my dad. Mom's always worry. She was so busy worrying about what I was going to have to do in the future, she could not say thank you for being with her while she was coming to the end of her journey. But you know what, I know she was glad I was there. Those last hours when we held hands and she would not let me go, I know she needed me there and I needed to be there. There is no greater way to say I love you and thank you.

Saturday, January 9, 2010

Not his choice

My Dad may have passed away over a year ago, but it is still all so fresh in my mind. I can picture him, the sounds, even the smells (good and bad ones lol) still. I love my Dad as much as ever and I am grateful for the experiences I had.

I have said this before and will again as it bears repeating, caregivers are everywhere. I cannot go anywhere without running into one. We talk. We share war stories. We share successes. We help one another deal with the 1001 questions and feelings caregivers have about caregiving.

My mantra at times was not his choice. I saved this for the special moments. Those times when I was tired, frustrated, lonely and sometimes angry. Because of the lessons I learned from caring for my mom, I could catch myself headed down the path of anger and frustration as it only led to a dark hole. Sometimes I would take myself by the hand and say not going to go there today. Right now we will go over here and rest.

Over here was not his choice. Did my Dad choose to be sick? No. Did he want to be sick? No. Was he frustrated with it? When he was lucid he was. Was he scared? God yes. Was this place in our lives going to last forever? No. Was I willing to let a stupid disease steal what was left of my Dad? Hell no. Then I would get feisty and often would see my Dad and I as 2 punch drunk boxers back to back fighting off the enemies. Sometimes the enemies were physical but most often they were emotional.

Thursday, November 20, 2008

Feb 2008??

Wow, have I lost track of time or what? I have been so busy with everything, this kind of fell through the clocks. Once again, I can suck it up and say I am sorry and move ahead or I can wallow in guilt and flog myself on a regular basis.....choices.......choices

Last winter it was my health that seemed to dominate the health front but that has been resolved and back to Dad.

So much to tell. First is the spot story. While helping Dad dress I noticed traces of blood in his underwear and became concerned, a urinary track infection could really muck up the works. I gave him some cranberry juice and continued to examine and find trace blood. I noticed it was on the edge and not the middle and realized what I had to do. I had to look. Examining my Dad's genitalia is always a tricky thing for he and I. Sometimes he thinks I am my mom and thinks I am feeling amorous, ewww ewww ewww. So I snap on the gloves and get very medical hoping he goes with the "professionalism".

I noticed a black very funny looking mole thing right next to his scrotum. One of the concerns we have since Dad was nuked during the Korean War, is skin cancer. So I called the VA for guidance and an appointment. Somehow, I ended up with their phone triage nurse. I explained the situation and was met with silence. Getting frustrated I asked if she was there. She said yes and then nothing again. I then ask if she had advice for me. She said not at the moment, she had questions, like why was I looking at my Dad's groin.

Engaging my brain before my mouth, and out comes "Oh my god, she has no clue." Not the most tactful way to start a conversation. She became insulted and wanted to talk to my Dad, I briefly caught her up to speed and told her to read some of the notes in his file on her computer. It was decided that I would bring him in the next day. It all seemed so backwards to me, why was she more concerned with our relationship than his health? I was stumped and then I realized, although she is a nurse she has not been a caregiver. She functions from a professional side while we function from and with our hearts.

Saturday, February 9, 2008

Lost in the shuffle

With the holidays, a daughter in college and making myself sick with worry it has been a busy few months.

The holidays were lovely, Dad especially enjoyed Thanksgiving. He could smell the turkey cooking and see pies and knew something reallllly good was in the works. I remember the rules at thanksgiving when I was growing up. The table was set with the "good china and silverware". Celery stuffed with cream cheese, pickles and olives came on the table first. With dire threats to our health if we should eat ANYTHING. Dad and I would circle the table filching something with every pass. I am sure my mom knew what we were doing, just choose to ignore it. lol

This thanksgiving was a little different. We ate earlier, the rules were disbanded and we ate well and often. Dad enjoyed every moment.

Christmas was wonderful. My collegiate daughter came home and the family was whole. My Dad was so glad to see her. He kept looking at her and asking who she was. not the normal welcome home for the prodigal daughter! My daughter, a savvy caregiver in her own right recognized that he was glad to see her and was trying to place her in the family dynamic. She would explain and tell him about college. They agreed that both of them being home for the holidays was terrific.

Then we had dad's birthday. We had a lovely party at a restaurant that makes a fuss over the birthday boy. An icecream sundae and a song were his. He stood and waved to his adoring fans and laughed. Could not have been a better response. We called his sister and she and dad had a lovely chat. Stella (his sister) filled him in on who had died, how old everyone was and did an amazing thing for me....told him he was to stay with me and that I was taking good care of him. Boy, did I need that stroke.

With the hustle and bustle of the holidays, I had lost sight and my conviction. This created stress in our home, which increased Dad's agitation and sundowning reared its ugly head. So a little self talk, a trip to the doctor (for me) and a little time off for good behavior has helped.

I am using my time off wisely. I am in Juneau, to talk to our legislature and request additional funding for grants that support in home care for our seniors. The idea is, caregiving is tough and requires sacrifices (duh) and the caregiver needs help, be it chore, respite, pca.......... If the caregiver has this support they can care for their loved one at home for a longer period of time. And that is my goal. So here I am in Juneau, Alaska waiting for my appointments to start in 2 days. In the meantime I will eat, sleep, write my testimony, sleep some more, read a book, watch a movie and go for a walk. And to be honest, the weather has turned bad, cold and strong winds. muahahahah. So walking may be out. I may just have to sleep, eat, read, write and watch movies............Oh my goodness I am a decadent girl!

Tuesday, November 27, 2007

Caregiving is Universal

I had the most amazing conversation the other day. I play a silly online game, not going to share the name as you will all fall off your chairs laughing and sue me. Not really, but just to be safe, fasten your seatbelts.

First you have to understand something about me. I am a pacifist. I hate guns and violence. Intellectually, I know they are necessary….but ya know….intellectualism is not all it is cracked up to be. So I shudder and wave at the nice policeman and think to myself, thank god that is not me. Then the war started and no matter what I think about how or why, I know I love those soldiers and wish them the best. I also know they are someone’s baby and the people we are fighting are also someone’s baby.

So while merrily going along and playing my game I made a friend. At first you don’t share much, just play the game together. Then as you run into one another more and more, you begin to talk. I learned he is a soldier and in Iraq. I cried. I could not deal. I ran away. And he let me.

Soon, we ran into one another again and we chatted again. And he told me about being in the army and being in Iraq. We started to share and I realized we had the same story to tell. Okay, not identical, his is much more dramatic; but so many similarities.

Soldiers on the front lines have problems sleeping, like caregivers they are waiting for the “bad thing” to happen. None of us know what it is and cannot prepare for it, but we know it is out there.

Soldiers form attachments to one another. They share a bond, a common experience, that others can appreciate, but never truly understand. Caregivers are similar, we immediately feel that connection with one another and understand.

Soldiers have survivor guilt. Need I say more? Caregiving is fraught with guilt, we don’t do enough for anyone, but we do all we can. We set ourselves up for failure.

As I talked to my friend about his experiences and my experiences, the differences melted away; and I realized we were taking care of another. It was more than a support group meeting. This was someone isolated, alone and under pressure reaching out for someone to love them and say “Good Job”. And then I realized, that person was me. So there we were, a 40 year old woman who is afraid of guns in Alaska and a 25 year old professional soldier in Iraq. Reaching one another, healing one another and we never even met. Who knew?