Early Onset Alzheimer's - Encourage, Inspire, and Inform: June 2018

Thursday, June 28, 2018

Routine Helps Us Cope

Missouri weather is well known for its extremes. Our dog likes to hang out on the deck while we go to town, but sometimes, like today with a 100+ index, it just isn’t a good idea. Recently, Harold built a “room” for her in the basement where she can stay while we make short trips to town. We furnished it with a chair, a dog bed, and toys.

This morning, I took the dog outside. She immediately trotted toward the garage, went down the steps to the basement, and stopped in front of the basement door. I was surprised that she had noticed we were getting ready to go somewhere and led the way to her room. Although we’d only used the room a few times, she already knew the routine.

Routines can become boring and sometimes we feel compelled to shake things up a bit to keep life interesting. But there’s something to be said for the stability and comfort of knowing our day is going to click along as expected.

Daily routines keep our lives running smoothly, especially if we have a loved one with dementia. Having set times for meals, bathing, dressing, activities, and bedtime helps both the caregiver and their loved one with dementia make it through the day.

Keeping a routine is helpful for a person who becomes confused. With subtle help and reminders, your loved one can maintain independence for as long as possible. It is important to be flexible enough to deal with the unexpected.

We all fall into patterns of routine. For me, it’s to put on a pot of coffee first thing in the morning. I don’t feel quite human until after my first cup of coffee.

A few days ago, I squeezed out the last few grounds of coffee from the canister and knew I had to refill it. While we were in the middle of fixing biscuits and sausage gravy, I decided it would be better to get that chore out of the way after I’d already downed a cup of coffee. I brought in a new can of coffee and grabbed the tab on the foil seal.

Coffee shot out of that can with all the force of a bottle rocket. Coffee grounds pummeled my apron, my chest, down my blouse, all over the counter, and of course, all over the floor I’d mopped the evening before. Talk about a mess! Talk about ruining my sleepy-eyed early morning routine.

After that, Murphy’s Law kicked in. While Harold was stirring gravy, I placed the biscuit baking sheet on the unused burners. “It’s hot,” I said. He accidently touched his arm to the sheet, jerked his hand, and gravy went flying. Awe, how much better it would have been if our routine had not been thrown out of kilter.

Routine and flexibility are two sides of the same coin. For those of us who prefer calm to drama, routine is our friend and flexibility keeps us from freaking out when things go wrong.

Sometimes we just have to clean up the coffee grounds, change our clothes, and jump in the shower. Before you know it, you are back on track to have a normal day.

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#ENDALZ

Saturday, June 16, 2018

A Birthday Wish

I sat in the Kansas City airport contemplating the 2018 Alzheimer’s forum, and couldn’t help but think about birthday wishes. For the first time ever, I’ll be visiting with my legislators on my birthday.

I can remember when I was a child, I thought about my birthday wish ahead of time. I don’t recall any earth shattering wishes. I remember homemade birthday cakes with candy pieces spelling out “Happy Birthday” and candleholders made out of the same sugary confection.

With eight kids, birthdays weren’t unusual or cause for a huge celebration. I’ve had a few memorable ones over the years of my life. I think the one that stands out in my mind the most was a camping trip gone haywire. A huge group of the Fisher family was camping at Rhody Lake in Oregon. To make a long story shorter, I slept in the tent with a bunch of kids and one of them peed on me. The next day, my birthday, was miserable. My kids were misbehaving, and I was cranky and out of sorts. No one, not even Jim, acknowledged it was my birthday and, oh, yes, I was feeling sorry for myself and too stubborn to bring it up.

Well, later in the afternoon, as everyone was relaxing around the campfire, suddenly here came my sister-in-law carrying a birthday cake. Everyone started singing, and I started crying when I realized no one had forgotten. They just wanted to surprise me.

Years later, right after we moved into our house, the family decided to have a surprise birthday party for me. Jim clued me in, and I met everyone at the door welcoming them to my “surprise” party.

So, whatever my birthday wishes were in the past, I know for sure what they will be this year. First, and foremost, I wish for a cure for Alzheimer’s. In the meantime, I wish that our legislative asks are met with favor. We have three federal priorities: An increase in Alzheimer’s research funding, the BOLD Act, and PCHETA.

Alzheimer’s is the most expensive disease in America. One in every five Medicare dollars is spent on caring for a person with dementia. The disease is expensive both for the family and the government. The average monthly cost for a person with dementia at the end of life is $4,866. Palliative care reduces that cost to $1,534.

The only solution to negate the expense is to find a cure or effective treatment. This can’t be accomplished without research. We are asking for an increase of $425 million for Alzheimer’s research. The stakes are high in terms of human life and economic savings for families and our country. A treatment that would delay the onset of Alzheimer’s by five years would save $220 billion during that period of time.

The Building Our Largest Dementia Infrastructure for Alzheimer’s Act (BOLD) will create a road map to treating Alzheimer’s like the public health threat that it is. This act creates a public health infrastructure countrywide. Increasing data collection, analysis, and timely reporting will save billions through early diagnosis. Centers of excellence will improve diagnostic procedures and quality of life for our loved ones.

One of the best decisions our family made was to use hospice care for Jim, and my only regret is that we did not use hospice sooner. Hospice provided comfort for Jim and for us as we faced the final days of his life. The Palliative Care and Hospice Education and Training Act (PCHETA) will ensure that end of life care is provided by well-trained workforce. Nearly half of all people with Alzheimer’s depend on hospice care during their final days.

After a few days seeing the sites and catching up with my friends and fellow advocates, we will be ready to roll up our sleeves and get to work. On Tuesday when we go to Capitol Hill, we will be armed with facts and figures, but more importantly we bring our personal experiences and passion to find a cure. Our hearts, wishes, and mission will be for a world without Alzheimer’s, and we are willing to ask, ask, and ask again until there is no longer a need to ask. That is my birthday wish!

Thursday, June 7, 2018

As Country as Can Be

One of the line dances we do in our line dancing exercise class is called “As Country as Can Be.” I think that would be a fitting description for me.

I was raised in the Ozarks, miles from the nearest town, down a dirt road full of potholes. The first time Jim drove to my house, he declared, “This is so far back in the sticks, I bet you have to pipe in sunshine.”

It’s also well known that you can take the girl out of the country, but you’ll never take the country out of the girl. I’ve lived in four different towns in three different states, and the shortfall all of them had was—they were not in the country.

I was much happier in the most modest home in the country than I was when we lived in a condo in town. Still, as a barefoot country kid, I never dreamt that I would come as far as I have in my life or live in the kind of home I have now. I realize this is backwards for kids today who often take a big step down when they go out on their own.

When I walk the dog, I enjoy the quiet, starlit nights and lazy country mornings. This morning during our walk, I saw a squirrel clinging to a dead branch, swinging back and forth. It reminded me of our entertainment when we were kids: swinging on grapevines, sliding on mossy rocks in the creek, swimming in the lake, or walking in the woods. Our home had no phone or air conditioning. I can remember settling down in a cool spot in front of the fan to read library books.

One of the benefits of coming from poverty is that you are grateful for what circumstances and hard work have brought your way. I remember that during the recession, some people were terrified of losing their wealth and being (gasp!) poor. The way I looked at it, I had already been there and it didn’t scare me.

Some people think that poor people are miserable. It couldn’t be further from the truth. Other people think money equates happiness, and that isn’t true either. If I’ve learned one lesson in life, it is that money makes life’s journey smoother, if you don’t allow money to be in the driver’s seat.

Working on Indelible, brings back memories of the financially stressed years that Jim and I had. We always managed to pay our bills, feed our kids, and have a roof over our heads. Jim was able to keep any old $200 car running, so we had transportation. So what if my clothes came from garage sales? We made it through the hard times on our own.

The hard financial times were a veritable walk in the park compared to the years of dementia. Those times were trying, but I was glad that we lived in the country. When Jim wandered off, he was in familiar territory and wasn’t in danger of walking into traffic.

My life has spanned over six decades. I still enjoy starry nights as much now as I did when I was a kid lying on a quilt in my Grandma’s front yard. I still look upon the heavens with wonder and awe.

No matter where the remainder of my life might take me, or where I may live, nothing will ever take the country out of me. I will always be as country as can be.