Tuesday, November 30, 2021

Out on a Limb

 


While at the park, I noticed a squirrel sprawled on a tree limb. That made me think of the expression “out on a limb.” Then, I wondered exactly where the expression came from and what it meant.

 

I did a little research and found that the expression was originally literally “out on a limb” because back in the day, people climbed trees. Well, hello, I climbed trees when I was a kid. My favorite tree to climb was sycamores simply because they had a lot of limbs. Two major drawbacks were the leaves made me sneeze and the limbs were brittle. My tree climbing ended when I went too far out on a limb and it broke. I went crashing through the lower limbs and didn’t stop until I was on the ground. It hurt, but since I was able to get up and walk, I went home and kept my mouth shut about the mishap.

 

The figurative version of “out on a limb” came into use during the late 19th Century. The idiom means to take a dangerous, uncompromising, or difficult position that leaves you vulnerable without the support of others.

 

I felt I was out on a limb when Jim began to show symptoms of dementia. For about the first year, I was the only one who realized how much he had changed. Seriously, there were people in Jim’s family that thought I was the one with a problem!

 

Doctors thought it was everything but dementia, which was understandable because he was only forty-nine years old. We went through a myriad of diagnoses trying to find an answer. After a battery of tests, he was diagnosed with dementia of the Alzheimer’s type.

 

Caregivers often feel they are out on a limb. I’ve seen families torn apart by disagreements about how to care for a loved one with dementia. Sometimes the caregiving falls on one person while other family members criticize.

 

Caregiving is stressful and often lonely. Friends and families sometimes distance themselves from the caregiver and the person with dementia. It seems that when you need people the most some of them will leave you out on a limb.

 

Two-thirds of caregivers are women, and one-third of those are daughters. One-fourth of the caregivers are known as the “sandwich generation.” This means they are caring for a parent while they have minor children living at home.

 

I could never have made it through without family support—Jim’s family and mine. I had once cherished our “alone” time, but dementia gave a new dimension to alone time.

I don’t regret keeping Jim home as long as I could. It was a lot of stress and strain, and I remember feeling tired all the time. Still, there were good times too—quiet times when we held each other and let love erase the heartache.

 

You know when I think about it, that squirrel looked like being out on a limb was a good thing. He looked relaxed and confident, as if he were savoring the moment. There may be a lesson for all of us there. 

 

Copyright © November 2021 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Thursday, November 25, 2021

Giving Thanks

When I woke up this Thanksgiving morning, as usual, I made my way to my coffeemaker. I try to remember to prepare the pot the night before and have coffee waiting when my alarm goes off.

I poured Half & Half in my cup and started to fill it up. Instead of coffee, I was pouring water. Apparently, I forgot to put water in the pot—again. I opened the top to pour in the water and saw a soggy filter. The problem seemed to be that after I had re-filled the canister with coffee the night before, I forgot to measure the coffee to put in the filter.

 

Not wanting to pour hot water in the coffeemaker, I decided to pour it out. Then the light bulb went off, and I remembered a packet of Folgers that was used like a teabag. Anyway, I used some of the hot water to make a stop-gap cup of coffee while the real-deal was brewing.

 

Regardless of the coffee snafu, I was grateful that I wasn’t out of coffee. That would have really been a bad start to the day.

 

In true American fashion, I refused to let that sour a day of thankfulness for me. I get it honest, because when I called my mom this morning to wish her a happy Thanksgiving she said, “I woke up this morning, so I’m thankful for that.”

 

I was a little worried about her because yesterday morning she said she had no plans for Thanksgiving. Harold said I should invite her to eat shrimp with us. “Well, she isn’t too crazy about seafood, and I know she will have invitations a lot closer than us.”

 

She went on to say, “I’m ready for Tommy to come and get me at noon for Thanksgiving Dinner. Then, at four, someone will pick me up to go to Terri’s.” Sounds to me like my mom is going to be well fed today.

 

Thanksgiving was always one of my favorite holidays. My dad wanted all of us kids to be home for Thanksgiving. When you have a big family, half were going to in-laws for Thanksgiving and the other half for Christmas. Dad finally said they would take Thank
sgiving and the in-laws could have us for Christmas. Of course, like Mom, we always wound up having two Thanksgiving dinners. My mother-in-law always cooked enough food to feed an army.

 

After Dad died, we carried on the tradition for many more years, but eventually we opted for a family reunion, and later, we mostly got together on Mom’s birthday. Traditions change as our lives change.

 

When Jim was in the nursing home, I had holiday meals with him. His mom would fix up a plate of his favorites and I took it to him. I was thankful to spend that time with him. When his appetite waned, he still had a taste for his mom’s home cooking.

 

I’ve crossed many speed bumps during my lifetime, but I’m thankful to be blessed with family. We aren’t gathering in one spot today, but our hearts reach across the miles to connect us inside a circle of love. I am thankful every day for my family, not just today.

 

Millions of Americans choose Thanksgiving Day to count their blessings. I think that we would be better if we had 364 days to count our blessings and one day to wallow in self-pity.

 

Copyright © November 2021 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Monday, November 15, 2021

It's About Time


Twice a year, Father Time plays a trick on us. Others try their hands at confusing the issue by telling people to turn their clocks in the wrong direction. When daylight saving time begins and ends, we simply have to remember, “Spring forward” and “Fall back.”

 Thinking about time made me realize that I have difficulty finding enough time to get everything done. My body sometimes rebels, and I wait for a better time.

 

It’s about time to take a step back and think about myself. I need to get more rest and work on pain management, not only for myself, but also for others. I need to quit putting off tasks and not ignore my to-do list so much.

 

I finally got rid of my landline. It was past time! For the past six months, I’ve found the ring to be an annoyance and stopped answering it. I still had caller ID from the days when I had to have it to know who was calling Jim when I was at work. Jim became the telemarketers’ best friend. He would try to tell me that somebody called, but he couldn’t remember who. He would say they wanted to know something but he couldn’t remember what, but he told them it was okay to do it.

 

I think it’s about time we are protected from telemarketers and scammers. We found out lately that many of those calls are coming from overseas and there’s nothing that can be done to stop them. People with dementia or unsuspecting elderly people are vulnerable to scams.

 

I’m longing for a time when I don’t have to constantly be on guard. Technology has turned an ugly face toward me with constant intrusions. I long for peaceful evenings and quiet time when my work is done for the day. Now, it seems that the work is never ending and interruptions break my train of thought and lower my productivity. At least my solitude isn’t broken with the jangling interruption of the landline ringing.

 

Time slips away. Days meld into weeks, weeks into months, months into years, and years into a lifetime. I hope for many good years and not years of pain and sorrow.

 

It’s about time for me to cherish the moments, let go of anger, and show love for my family, friends, and husband. I’ve always been a bear when I’m exhausted or hurting. It seems like lately that’s a daily occurrence.

 

It’s time to be thankful for life’s blessings and to use adversity to build character.

 

Copyright © November 2021 by L.S. Fisher

http://earlyonset.blogspot.com

Sunday, October 31, 2021

Fighting the Doom and Gloom

 

Three days of gloomy skies and rain was hard on the body and soul. My body cried out for attention with the latest arthritis flare-up. My soul was depressed by the grey skies and lack of sunshine.

I can easily understand how dark days and darker nights could affect the mood of a person with mid-stage or late dementia. Caregivers find that “sundowning” creates additional challenges for a disease that demands extraordinary effort.

 

I took my dog outside in a whirlwind of rain. Halloween seemed to come a few days early with howling wind and sheets of rain forming ghost-like mist dancing under the dusk-to-dawn light.

The night was darker than usual since my solar lights had a few days without any solar to fuel them.

 

Between the rain and wind, my raincoat seemed inadequate. “If this is what October is like, I can’t imagine how cold winter is going to be,” I said to my husband. There you have it. Instead of enjoying fall colors as I usually do this time of year, I was dreading the days to come.

 

My battle plan was to open all the drapes, turn on lights, and listen to and/or read a book on my Kindle. I intended to watch TV for a while, but instead I listened to music and comedy on my phone.

 

Yesterday morning I stepped outside to a glorious sunrise. Well, it wasn’t a photo worthy event, but it certainly cheered me to see that golden orb shining through the trees. It stands as a reminder that no matter how dark our days on earth can be, the sun continues to shine.

 

My immediate future holds some trying times, but I really want to focus on the positive. I want to think about music, sunshine, lollipops, and rainbows.

 

When life seems to be hopeless and gloomy, we need to look beyond the clouds and feel the hope and warmth of the steadiness of the sun.

 

Copyright © October 2021 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Thursday, October 21, 2021

Stay Strong

 

Last year, I never bought the potted mums I usually put in the front yard, but I had three I’d saved in the garage from the year before. To my surprise, they bloomed. When they died late fall last year, I figured they were done. The pots sat outside the back door through the winter. The mums, of course, never developed green leaves so I dumped them out and put the pots away.

 

I was out walking my dog yesterday and I glanced over toward the small flower garden that we’d dug up in early spring. I did a double take, and there was a tiny mum blooming at the edge of the garden. I had discarded the plants because they were dead and ugly, yet one was strong enough to survive my bad treatment.

 

Have you noticed how some people seem to flourish no matter how badly life treats them? Others fall into despair at the first sign of adversity. It is a mystery as to how differently people cope with the challenges in life.

 

I just finished Kristin Hannah’s book The Four Winds. The story takes place during the depression and when the dust storms hit the Great Plains. Just when you think things couldn’t get worse, they do. Elsa and her kids finally head west to California where they believe they will have a better life.

 

I couldn’t help but think of the song, “California Cotton Fields,” that Jim used to sing. While looking for a change of luck, they found broken dreams, and hardships beyond what they could have ever imagined. Broken dreams do not always mean broken spirits.

 

When tragedy strikes, we can often rebound and continue with our normal life…eventually. When we have daily hassles that try our patience and undermine our confidence, we might buckle beneath the weight of our burdens.

 

Caregiving is fraught with adversity. The daily stress of providing a safe and healthy environment for another human being is crushing at times. Compound that with loneliness, lack of sleep, and constantly feeling overwhelmed and you have a recipe for disaster.

 

What are some ways of coping with life when you are bombarded with problems? I don’t know how other people do it, but here are some things that worked for me:

 

1.      Ask for help. Whether I received help from family, friends, or professionals, I finally came to the realization that I couldn’t do it alone. The most valuable resource I found was my local chapter of the Alzheimer’s Association.

2.      Join a support group. I was amazed at how much I learned during support group meetings. We exchanged ideas and I made new friends. Best of all, I learned from others and didn’t have to figure everything out on my own.

3.      Find a way to turn heartbreak into a positive. By becoming a volunteer, an advocate, and fundraising for the Walk to End Alzheimer’s, I found a way to turn my passion into action. I gained a purpose, a mission, felt the positive energy when I  focused on my small victories rather than my losses.

4.      Take care of yourself. When I was a caregiver, I spent so much time taking Jim to doctor appointments, that I often neglected my own health. Then, one day I realized that he depended on me and if I didn’t take care of myself, I couldn’t take care of him. I made an effort to etch out time to relax, regroup, and rejuvenate.

 

Be kind to yourself as well as to others. No one is perfect and we all make mistakes, but if we focus on the multitude of daily tasks we do right, we can be more forgiving of our occasional hiccups.

 

Think about the mistreated and discarded mum that blossomed into a beautiful flower. Sure, it is smaller than a pampered mum from a garden center, but it serves as proof that if we stay strong we can not only survive, we can thrive.

 

Copyright © October 2021 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Monday, October 11, 2021

Thinking Outside/Inside the Box

 

“We have a delivery,” my husband told me. “It’s probably the box to return the wheelchair leg rests.” We had bought a wheelchair online and one of the leg rests wouldn’t lock into place. The company sent us a replacement, but they wanted the defective part returned to quality control.

 

“OK,” I said. “I’ll take the dog out and bring in the box.”

 

I opened the garage door and immediately called Harold. “You need to come out here and look at this.” Partially blocking one of our garage doors was a pallet of folded boxes. A pallet!

 

He wanted me to send a photo, but before I sent it, he thought to look on the security camera. The next two hours were a whirlwind of trying to get someone to come and pick up the pallet of boxes. First, we had to deal with the confusion that both the company that delivered and the wheelchair seller insisted we had received one box. Well, our shipping label was on one of the boxes used to protect the bottom. Yes, there was our box, all right.

 

The clouds gathered and rain threatened. After I texted my photo to the wheelchair company, they promised to take it off our hands…eventually.

 

When all else failed, my son dropped by and moved the boxes from in front of the door. Eric said, “No one will pick it up today.”

 

“I can’t even imagine how heavy it’s going to be once it gets rained on,” I said. Eric rolled the boxes to the shop before the rain started. Now, I started to worry that they would come to pick it up when we were gone.

 

So, the outside boxes were now inside and safe from the elements. The whole experience brought to mind thinking outside and inside the box.

 

When I was a caregiver, I had to think outside the box often. Each day represented getting a pallet of problems when you wanted/expected everything to go smoothly. Jim wandered off and finally we thought to put an alarm on the front door. Why just one door when we had four? That was the only one he ever used when he decided to take off down the road. Every day brought about the unexpected from Jim, and thinking outside the box becomes second nature. It’s not unusual for the usual response to fail.

 

Sometimes, it’s better to think inside the box. One of the best things a caregiver can do is have a routine. People with dementia respond well to routine. Following a schedule for grooming, toileting, meals, activities, and bedtime make life easier for the caregiver and the person with dementia.

 

Sometimes, problems seem unsolvable, but with persistence and a little help from family, friends, or professionals, you can often achieve a satisfactory resolution.

 

The pallet that was dropped off Friday was picked up on Monday, while we were home. The boxes were on their way to the rightful destination.

 

My husband received an email from quality control saying they sent us new leg rests. Really? Again? Another email from receiving wanting to know why we hadn’t used the “box” they sent us to return the defective leg rest. It was from the same person we talked to when we received the pallet, with our shipping label attached to an open box tightly wrapped inside the packing straps.

 

“Now what do we do?” I asked.

 

My husband’s reply was “Not our problem.”

 

That brings up the final solution to problems beyond your control: Don’t think about the box at all.


Copyright © October 2021 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Friday, September 24, 2021

The Quiet of Dawn; the Hush of Evening

 


My morning routine is to pour a cup of coffee and either read or play games on my Kindle. When I’m interrupted before I finish my first cup, my entire day is out of kilter.

 

I love the quiet of an early morning so much that I am the first one out of bed. After my (hopefully) uninterrupted quiet time, I start the multitude of daily chores. It seems that I always have more to do than time to do it. Sometimes, I decide that there’s nothing I’d rather do than read a book, watch a movie on Prime, or talk to my mom.

 

Time: my enemy, my friend. Life is short and time is limited. How we make use of time can make us feel like a superhero or a zero. We have to remember that superheroes usually have an unassuming human persona. No matter how much needs to be done, there’s always tomorrow. Or not. If there is no tomorrow, would you want to spend your last day on earth finishing a routine, mundane task?

 

During the caregiving years, I was often overwhelmed by the loneliness, the sheer workload of providing care for another human being, the fear of the future, and the loss of the past. I sometimes felt like I was plugging along with superpower pushing me forward one day at a time. Other times, I felt like I was smothering beneath the weight of responsibility.

 

Like the rising sun, the light would break the darkness. I found daily strength drinking a cup of coffee, or watching the squirrels jump from limb to limb and tree to tree while spending a quiet moment communing with my inner self. The harshness of caregiving was tempered by the tenderness of love, caring, and hope that time would be kind enough to slow down the losses.

 

Like most caregivers, I learned to forge moments of joy into each day any way I could. Jim and I would go for a ride with the windows down, or walk in the park drinking milkshakes from Dairy Queen without worrying about the sugar or calories.

 

After a busy day of obligations, I like to enjoy the hush of evening. As the sun sinks, there is a perfect moment when the colors are glorious. Sunset is the most beautiful time of day and the most precious time of life.

 

Copyright © September 2021 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Sunday, September 12, 2021

Walk to End Alzheimer’s: Musical Shelters and Miles to Go

 

Last year the Alzheimer’s Association launched “Walk Everywhere.” We were excited to hold this year’s Sedalia Walk to End Alzheimer’s in person. The goal was for participants to feel safe and enjoy the excitement of being part of a community event.

 

This was my twenty-fourth walk, and I’ve seen just about everything that could happen, happen. One year we discovered within days of the event, that we didn’t have the Highway Gardens secured. After nearly having a panic attack, I felt so fortunate that some unlucky couple called off their wedding.

 

We’ve walked on mostly glorious sunshiny days, but we’ve also walked on cold September mornings, in sweltering weather, and during rain showers. Nothing compared to the deluge we faced in 2018. We slogged through the mud during setup, through the opening ceremony, and throughout the walk. It never once let up, and I was soaked from head to toe. In 2019, we changed the venue to Centennial Park with a walking trail and a large shelter.

 

After the 2020 virtual walk, we moved forward with plans for an in-person walk. An important part of any walk is logistics. I met Laura, our Alzheimer’s Association Walk Manager, at the park and we finalized the logistics at the big shelter. That afternoon we had the figurative rug swept out from under our feet. Laura received an email that said “sorry for the miscommunication” but Shelter 1 has been rented to someone else. Say what?

 

After one-sided negotiation, we were offered Shelters 3 & 4 for our event. I looked the area over and told Laura we could make it work. We knew the walk would be smaller than in the past. We had another logistics meeting at the new location and strategized a Plan B.

 

On walk day, I arrived at the Park around eleven o’clock a man was sitting in Shelter 3. “That man said he rented the shelter a year ago,” WyAnn told me. After looking around, we discovered Shelter 5 was reserved for us. Plan C was on the fly, but worked out nicely. We had more room between the shelters, and a lot of shade! Musical shelters worked out to our advantage.

 

The wind played havoc with the pinwheel flowers, signs would not stay upright, and I found one of my books blown onto the grass. The wind was both a curse and a blessing. The day did not seem nearly as hot as the thermometer said it was.

 

As soon as a team arrived, they would be encouraged to walk. I had asked Jim’s Team to be ready to walk at 1:30. After our team photo, sixteen of us hit the trail right on schedule. If my mother had been able to make it, we would have had a five-generation photo. My great-grandson Jackson was decked out in his “Walk to End Alzheimer’s” baby T-shirt. On the back, it said “Grandpa Jim’s Team.” The $555 online donations made him a “Champion.” As of walk day, Jim’s Team had raised the most funds, but we were still short of our team goal.

 

Although the Sedalia Walk had four Grand Champions ($1000 or more) and our tiny Champion, we fell thousands of dollars short of our walk goal. Hopefully, onsite donations and continuing online donations will eventually get us there, but we obviously have miles to go!

 

We have until the end of the year to meet our goal, Sedalia. I’m going to keep on fundraising and I hope you will too. If you haven’t had a chance to donate, you can make an online donation at alz.org/sedaliawalk.  

 

Those who have never been to a walk may not realize how uplifting and heart fulfilling it is to gather for a common purpose. We share the hope and confidence that we will someday have a survivor lift the white flower and hold it high.

 

When we walk, we walk for loved ones who have passed away from Alzheimer’s. We walk for those living with Alzheimer’s and their care partners. We walk for those who will develop dementia. Most of all we walk so that our children may know a world without Alzheimer’s.

 

Copyright © September 2021 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Tuesday, August 31, 2021

For the Good Times

 

Do you ever find yourself longing for the good times? What that means is unique to each person. For some, the good times were when they were a kid. For others it may be college years, or when the shine was bright on the wedding ring.

For some reason “for the good times” was bouncing in my head this morning. I’m not talking about the song, just the phrase. I sometimes go with my gut when writing my blog posts and that was, obviously, what I was supposed to write about today.

 

So the question remains—what are the good times? Strangely enough for all the writing I do about Jim’s and my dementia journey, I am not a person who thinks a lot about times gone by.

 

Some people’s idea of a good time would be parties, bars, and vacations. Parties never were my thing. I’ve enjoyed a few parties in my lifetime, but they wouldn’t make the list of “good times.” As far as bars, I’ve been in a few, but nothing memorable ever happened at one of them.

 

Now, vacations are a mixed bag. I thoroughly enjoyed most of our Colorado vacations. I loved camping in Moraine Park, animal watching, Jim playing his guitar to serenade the chipmunks, hiking the lesser traveled trails, and relaxing around the campfire. Good times.

 

On the other hand, we made an emergency trip home one year, had our tent drip ice water in our faces after a six-inch snow another time, and we had to settle for a different campground one time. All in all, it’s safe to say that the good times far outweighed the bad until the master camper lost his ability to become one with nature.

 

Our trips to Colorado became more challenging when dementia changed the landscape. One year, we almost failed at pitching our tent because Jim kept putting the wrong pieces together. We had to tear it down and start all over.

 

The year my mom and nephew went with us, we stayed in a cabin. We were able to prepare Jim’s meals and had room to relax. It was a good vacation until one morning I was taking a shower, and Jim wandered out the front door. My nephew went after him. He convinced Jim that I wanted to talk to him, and they turned around and came back to the cabin.

 

When I think back, good times were always tainted with a few bad ones, and the bad times were bolstered by the occasional good times. The ups and downs of life flow like a highway through hill country. We navigate hills, valleys, hair-raising curves, long stretches behind slow moving traffic, and dead spots where we cannot communicate with the outside world. Sometimes we pause at a scenic overlook and experience the euphoria of a wondrous view.

 

I’ve found that attitude alone can make or break the good times. I want to be lost in the joy of singing my songs, and not worry about the occasional mistake. I want to experience the sunrise filled with hope in my heart and not despair. I’d rather enjoy the sunset and not fear the dark. I want to watch the electric lightning and rushing clouds without worrying about the brewing storm.

 

Good times are not magic, but they can be magical. Optimism, fortitude, and good luck are all the magic we need. We make the good times, and we should make the most of them.     

 

 Copyright © August 2021 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Saturday, August 28, 2021

Balancing Act


During the Olympics, we discovered that no matter how talented a gymnast was, she could tumble from the balance beam. Considering the tricks necessary to get a good score performed on a four-inch wide beam, I can completely understand how easy it would be to miscue and fall.

I am not coordinated enough to walk on a four-inch beam even carrying a pole like a Flying Wallenda would during a highwire act. When you think about it, the balancing act of life is not about highwires or balance beams. When our lives are out of balance, we are setting ourselves up for an awkward, potentially life-changing fall.

 

We have to balance:

 

1. Work with Recreation. A person who never takes a break, a vacation, or relaxes with a hobby, endangers both physical and mental health. Our minds and bodies need some downtime to rejuvenate our spirits. Caregiving is intense and all-consuming and respite is imperative to remain healthy.

 

2. Sadness with Joy. It’s hard to stay upbeat when a loved one has dementia, but being sad all the time is wearing on everyone that has to interact with you. One of the sad realities I noticed was that Jim lost his sense of humor. I read humorous books, watched the funniest sitcoms and late night shows, and spent time with friends and family who shared common interests with me.

 

3. Alone time with Social Interactions. Alone time is the time we need for introspection. It’s too easy for a caregiver to be caught up in the busyness of everyday tasks, and fall into bed at the end of an exhausting day without any personal time. Caregiving can be a lonely time especially when your loved one cannot communicate with you. It is important to have friends and family for support and conversation. Friends are good companions for outings to movies, plays, concerts, or other activities of mutual interest.

 

4. Rest with Physical Activity. It is hard for a caregiver to get enough rest. Jim only slept about four hours a night, which meant I had four hours sleep too. Rest involves more than sleep, and that was in short supply too. My balance of rest and physical activity were not in sync and it showed. Running all day on four hours sleep made me pretty cranky at times. What did help was when the physical activity involved a leisurely walk.

 

Bringing life back into balance is a long-term goal that needs to be approached one day at a time. Once we realize that we will fall off the balance beam occasionally, we can pick ourselves up, climb back on, and move forward. We are less likely to fall if we stick to the basics and keep the “tricks” to a minimum.


Copyright © August 2021 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ