Cold is for the Bold

As 2017 winds down, winter has barely started, and I’m ready for spring.

With the cold weather and sub-zero wind chills lately, I’ve had to psych myself up every time I head out the door to walk the dog. When my husband asked, “What do you want for Christmas?” the only thing I could think of was an N-Ferno hood like he bought for himself last year.

Now, I dress as if I’m going on a polar expedition every time I walk out the door. As with everything, it seems, there is an upside and downside to the new hood. The cold doesn’t make my face hurt anymore, but my glasses fog up and I have to remove them. As nearsighted as I am, that means I can’t see much. Still, the hood makes me feel like a Ninja warrior battling the cold.

The best defense against the cold is layering. I bought a pair of fleece-lined sweatpants, but they didn’t stop the cold until I wore my Cuddle Duds beneath them.

This New Year’s Eve, not only our bodies are layered against the cold, our souls and hearts are layered to shield us from hurt and disappointments. In order to overcome the challenges we face on a daily basis, we have to pile on layers of accomplishment. To defeat sadness, we need to find joy. To defend ourselves against the darkness, we need to seek out light.

As we reflect on the dying year, we can focus on the bad or sad times, or we can laser our thoughts on the good times. The same could be said for the past years. A lifetime of years.

For some reason this morning, I found myself dwelling on my failures and missteps. As I thought about the times I made stupid mistakes, I found myself sinking into a place I didn’t want to be. Then, I went on with my day—breakfast, laundry, walking the dog—those little daily obligations that are there to be done again and again. There’s nothing permanent to be gained or lost.

As I worked on Jim’s memoir Indelible, I found myself laughing and crying as I relived that period of my life. The thing is that life is cyclical. Maybe, roller coaster might be a better description. High highs, low lows, sudden drops, heart-stopping curves, and the moment of quiet and relief when one ride ends and before the next one begins.

Tomorrow begins a new year. I’ve never been much of one for making resolutions because I never saw a resolution that I couldn’t break within a few days. Instead, I’m looking at more of an overview.

Over the past several months, I’ve been paring down my outside obligations. This is a real effort on my part to free up more of my time to tend to matters important to me.

One thing for sure, 2018 is going to have a cold, cold start. So tomorrow when I don my Ninja hood, I’ll battle the cold and face the new year with boldness and optimism. After all, the hood keeps the wind from hurting my face, and spring will be only 77 days away.

Copyright © December 2017 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ 

Christmas at the Home

I saw a post this morning, “Please, if you have loved ones in a nursing home try to spend some time with them.” This reminder made me think of the five Christmas holidays Jim spent in a nursing home.

One of the disturbing trends I noticed at the nursing home was the lack of family support, especially in the special care unit. Excuses ranged from “he doesn’t know me” to “I can’t stand to see her that way.”

The family who never visited missed the smiles and bright eyes when a loved one walked through the door. When I visited Jim, some of the other residents felt that I was there to see them too. I greeted them by name, commented on how pretty someone’s dress was, or offered to get the attention of an aide when they pleaded, “Will you help me?”

“They won’t let me help you, but I can get someone who will,” I told them.

Christmas time seemed a particularly lonesome time at the nursing home while families celebrated at home. I was looking through some of my Christmas memories in Indelible (memoir in progress). Here are some of the Christmas memories:

Home for Christmas:

Around Christmas time, we drove around town after dark to see the lights. The state school had an outstanding display with Christmas scenes set up in small buildings. Christmas music played on loudspeakers throughout the drive. Eric, Shawna, and the grandkids enjoyed riding through the light display too.

I brought Jim home for Whitney’s birthday party and our annual Christmas Eve get-together. After our Christmas Eve celebration, we drove Jim through the Christmas lights before returning him to the nursing home.

On Christmas day, I picked him up to have dinner at his mom’s house. We made it through our first Christmas with Jim living in a nursing home by making it as close as possible to our normal celebration.

Home for another Christmas:

I brought Jim home and helped him out of the van and down the walkway. He took his usual seat on the reclining section of the couch.

Rob and Colby were playing video games on the TV. Before long, he yelled, “Hey!” and jumped up and started going toward them.

“I wonder if he wants to play,” I said. At one time, Jim loved video games, and he played Mario Karts long after he developed dementia.

Rob ejected the game they were playing, and inserted Mario Karts into the Play Station. “Here, Dad,” he said as he handed Jim a control. Jim didn’t seem to remember how to use it, so Rob passed the other control to Colby and helped his dad maneuver the one he held.

After a few races, Jim remembered how to run the car around the track, but the master of the game was not competitive.

Christmas at the Home:

I wanted to bring Jim home for Christmas Eve, but it was snowing, so I decided it wasn’t a good idea. Christmas Day, I brought Jim a bowl of the chili Rob made for Christmas Eve. He ate the chili and the ham that came on his plate.

While Jim was in the nursing home, the staff and I did everything we could to make the holiday special. They decorated for Christmas and provided Christmas cards that they taped to the doors. I brought a tree and decorated his room.

The staff drew names and gave Christmas presents to the residents. Jim was wearing his gift, a Dale Earnhardt, Jr. shirt.

I had planned to take down his Christmas tree, but the box was still in the car where I had forgotten it. The rain pelted against Jim’s windows, and I dreaded going back outside. As I spooned his food, I talked to him. “Well, I’m not going back out in that crap to get the box for the Christmas tree.” Jim’s eyes moved toward the tree. “I guess you’ll get to enjoy it one more day.”

We spent fifteen minutes together Christmas Day 1969 before Jim returned to Vietnam and I flew home. From then until Jim passed away, we were together every Christmas Day. I cherish the memories of our Christmases regardless of the setting.  

Copyright © December 2017 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ 

Kathy Siggins Stamps Out Alzheimer’s

I went to my local post office this week and bought a sheet of Alzheimer’s semipostal stamps. I couldn’t help but brag, “My friend, Kathy Siggins, is the one who got the approval for this stamp. She worked eighteen years to make it happen!”

Often, we claim people as friends when they do something extraordinary—something that makes a mark in history. In this case, I wasn’t exaggerating. I met Sarah Harris, Jane Adams, and Kathy Siggins at the first Alzheimer’s forum I went to in 2001. We forged a lasting and special friendship of the heart. 

And guess what? Kathy was already working on the Alzheimer’s semipostal stamp, and was still working on it at the 2017 forum.

Well, frankly, I didn’t even know what a semipostal stamp was, or why we wanted, much less needed, an Alzheimer’s stamp. Since then, thanks to my friend Kathy, I’ve learned quite a bit about them.

Getting a semipostal stamp approved isn’t easy. As you’ve heard said before…it takes an Act of Congress. The Semipostal Authorization Act grants the U.S. Postal Service authority to sell fundraising stamps to further causes that are in the national interest. They will issue five semipostal stamps over the next ten years, with the Alzheimer’s stamp being the first discretionary semipostal stamp. The second stamp, already approved, is another cause near-and-dear to me: Post Traumatic Stress Disorder semipostal stamp.

Why are these stamps important? Prior semipostal stamps have raised millions of dollars. Congress mandated the first semipostal stamp in history for Breast Cancer Research  which raised $86.7 million and a Save Vanishing Species Semipostal stamp that raised $4.3 million.

The Alzheimer’s stamp costs sixty cents. The additional cost of the stamp will go toward Alzheimer’s research. As Congressman Elijah Cummings said at the dedication, this is a “big deal.”

Kathy Siggins has been busy lately. The stamp was released on November 30 and she was a special guest at the official dedication of the stamp. The Congressman recognized Kathy for her work. “You turned your pain into a passion and to a purpose.” He said it would affect generations yet unborn. He went on to say, “Your name may never appear on the front page of the Washington Post. You may not even make the local gazette… By the way, you may never be famous, but there will be people who will benefit from what you did.”

The Congressman said Kathy was an example of how “one person who instead of standing on the sidelines of life having a pity party” used her energy to make life better for somebody else.

I’ve followed Kathy’s various events online: award presentations, television interview, dedication parties, and celebrations. She takes it all in stride. Kathy has worked toward this day for so long, I’m sure she is filled with exhilaration.

  

The stamp, thanks to the unwavering efforts of Kathy Siggins, will be on sale for two years. Buy early and often! Let this be the only stamp you buy in the next two years.

Kathy and Sarah (back), Linda and Jane (front) 

Yes, Kathy, you are our Alzheimer’s hero. Speaking for Sarah, Jane, and myself, we

salute you, our sister of the heart, and heap our gratitude and love on you for being the special person you are.

The US Postal Service dedication ceremony: https://www.facebook.com/USPS/videos/10155960281864810/

#AlzheimersStamp

Copyright © December 2017 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ 

Slaying Dragons

An old story that came to my mind this morning: a man asked his friend with a terminal disease, “How does it feel to know you are dying?” The friend responded, “How do you feel to think you are not?”

How you cope with terminal disease depends on how you feel about battling dragons. You can meet the dragon head on, or you can turn tail and run. Fight or flight. It depends on the kind of person you are.

Alzheimer’s is a big, ugly fire-breathing dragon of a disease. It is a terminal disease that can take a decade or more to reach its ultimate conclusion. That’s entirely too long to be in “dying” mode.

As if having a terminal disease isn’t enough of a problem, people often have more than one potentially fatal condition. Heart disease, diabetes, kidney disease, cancer…the list goes on and on. While you are battling the big dragon, smaller potentially dangerous dragons are coming at you from every side.

In real life, you battle diseases as if you were fighting those mythical dragons, that is, one at a time. Otherwise, it is overwhelming.

When Jim developed other medical problems, we dealt with them as they came. I decided it was best to address each issue as it arrived. My thoughts were to keep him as healthy and mobile as possible.

Alzheimer’s is a disease that affects every person in the family. It may affect them in different ways. One person steps up to be the caregiver—usually a spouse or child. Some may withdraw while others go into overdrive to provide support for the primary caregiver. Then, there’s Mr. or Ms. Know-it-All who don’t really want to do anything but tell everyone else how to do it. Yes, the personalities of those involved can be quite challenging.

Ultimately, the biggest choice is whether to give up or go slay the dragon. When you give up, you waste precious time. Chronic illness of any type becomes a dragon that needs to be slain.

If you look at what you still have instead of what you’ve lost, you can begin to enjoy life. Cherish those little moments of joy, and make memories. You don’t want to lose a decade of your life seeing only the doom and gloom of a terminal disease. Become a dragon slayer!  

Copyright © December 2017 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Sights, Sounds, and Traditions of the Holidays

I’m not sure where the year went, but it definitely swooshed by. It’s hard to believe it is Christmastime, even with two trees and a complete army of nutcrackers scattered throughout the house.

Holiday movies threaten to overflow my DVR. They all have a similar theme: a person who loathes the holidays, but magically “gets” what all the fuss is about. A Hallmark movie can turn the Grinch into a Santa’s helper. Life is not a movie, and not everyone has a magical moment each holiday season.

Holiday sights and sounds greet us everywhere we go, beginning earlier and earlier each year. All that holiday joy and ho-ho-hoing can be a bit much for those who are dealing with the unpredictable nature of dementia.

Three important lessons I learned throughout my ten Christmas seasons as a caregiver:

(1) simplify sights, (2) simplify sounds, (3) simplify traditions.

For most of his adult life, Jim was pretty much a Grinch about Christmas. He thought it had become so commercialized that it had lost its meaning.

In some ways, dementia made the holidays a little more tolerable for Jim. In other ways, it only added to his confusion. One year, I was putting framed family photos in a box to clear the shelves for Christmas decorations. Immediately after I cleared the shelves, Jim put the photos back where they had been. That was my first clue that he wasn’t as crazy about the decorations as I was.

More than the decorations, I think it bothered him that I was changing his familiar environment. I learned to simplify the sights of Christmas. The holidays can be entirely too bright for a person who is confused. And it just isn’t as much fun for the caregiver to do all the decorating alone and even less fun taking it all down.

Christmas can be a noisy holiday with traditional parties, dinners, and loud holiday music. When you combine dozens of conversations with music and piles of food, you are just asking for trouble. Communicating with a loved one with dementia is an acquired skill. Rapid-fire conversation is hard for a person with dementia to follow and can bring about a negative reaction. Simplify the sounds of Christmas. Replace noisy gatherings with soothing traditional music your loved one will remember from his or her childhood.

Simplify traditions by getting rid of the ones you have clung to through a sense of obligation. If you don’t enjoy it, don’t expect your loved one to tolerate it. Do the things that make you happy. If your idea of a good Christmas is a quiet evening at home, then do it. Most of the stress of Christmas is caused by trying to meet the expectations of other people. Those who truly care about you are not going to want to add any more stress in your life.

Simplifying your holiday can bring the joy back to the season. The spirit of Christmas isn’t wrapped up in glittery packages or found in a department store. The spirit of Christmas is a child wrapped in swaddling clothing, placed in a manger. The spirit of Christmas is love, peace, and a light that shines within our hearts and souls.

Copyright © December 2017 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ