November 17, 2012 · 6:42 pm

Caregiving comes full circle

I recently discovered this quote from Rosalyn Carter and found it truly profound:

“There are only four kinds of people in the world – those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers.”

That’s very true. Most people will find themselves being a caregiver or receiving care at some point in their lives. Yet I feel we have not come very far as a society in our caregiving skills. It seems like many of us wake up one day to a nightmare and spend a great deal of time scrambling to get the situation under control.

For some people with nurturing souls, caregiving comes naturally. For others of us, we feel like we have been dropped on another planet. Physically, emotionally, mentally it is often the most difficult jobs of our lives.

But with every caregiving challenge, there are lessons to be learned. With Dad, I learned that when caring for someone with dementia, being present, even when you are not recognized, is a valuable gift.

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November 16, 2012 · 7:11 pm

Black beauty

Having sifted through many intriguing old photos of my dad, I think he definitely took pride in his dark and handsome good looks when he was younger. That side of him was nearly invisible once he became a dad. He worked long hours, outdoors, doing manual labor, so he definitely wasn’t a suit and tie guy. He did always wear dress slacks and shirts, because that was the custom in the era he most associated with. He never owned a pair of jeans.

That’s why it was such a shock to me to see Dad in the nursing home, wearing Scooby Doo pajamas, denim jeans and canvas sneakers!

“Black Beauty” in all of his hair dye glory.

But Dad was proud of his dark shock of hair. His hair never turned fully gray, and his hair didn’t thin out that much, not until he was quite sick. I’ve probably earned more gray hairs this summer than Dad had until he was 50 or 60!

Mom offered to help Dad preserve his youth, so to speak. Mom had used hair dyes in a box since I was a little girl. I remember the drama surrounding the process. I was not allowed to touch her and she was barely allowed to move, for fear of dripping permanent hair dye onto something in the house. Then Mom would walk out of the bathroom with a new hair color.

I was a bit surprised Dad relented to the faux hair color treatment. Mom worked her “magic” in a bottle and Dad ended up with a beautiful head of shiny black hair. He was a bit self-conscious at first, but he warmed up to if after he received several compliments from people in town. Mom took a photo after onc such hair treatment and titled the image, “Black Beauty.”

I thought of this yesterday as I had my hair done at the local hair salon. I’m not one for vanity either, but there is something special about that momentary transformation when you get your hair styled or colored. Even the average-looking person feels beautiful, at least for that day.

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November 15, 2012 · 7:42 pm

Chance encounters with kind souls

While tending to a loved one that is ill, you will find yourself meeting people from all walks of life that you would not otherwise meet. You will deal with the good, the bad, the indifferent. It’s just like in any other area of your life, except caregiving makes one more sensitive to every situation.

I think that’s especially true for those caring for someone with dementia. You feel obligated to advocate for those whose voice has been hijacked by disease.

But often, it’s not the doctors or even the nurses that leave the largest and most positive impression.

I remember when Dad was clinging to life in an Albuquerque hospital, there was a cleaning lady from Cuba that would come in every day. I don’t remember her name, but I remember her sweet and gentle demeanor. I remember how she carefully stepped into the room that first day, and in halting English, stated her name, told us she was from Cuba and warned us her English was not very good, but that she was learning.

Mom immediately launched into a barrage of words that there is no way the cleaning lady could comprehend. But what she did realize, because of her deep compassion, was the situation at hand. This cleaning lady worked the CCU floor, where the most critical patients were placed. I saw her sweep her gentle gaze over my father, who was sedated and connected to a bunch of machines. She offered us a beautiful, genuine smile as she turned towards us.

There are no words necessary to understand the drama that was being played out in that room. Any human with a good heart could feel it, and the cleaning lady sensed it and offered us a warm, soothing spirit as she went about her work. It’s these chance encounters, that seem so trivial at the time, that often resonate with us so much.

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November 14, 2012 · 7:28 pm

Fleeting connections in dreams

The dreams of Dad continue for Mom. She will dream of conversations with Dad, but not remember the exchange of words when she awakens. She has hit a plateau recently, at least on an emotional level. She told me last night that she thinks she doesn’t have much longer in this world. Of course, none of us know our exact time of death, but I have a feeling it’s wishful thinking on her part. While she has made great strides in her recovery from surgery, life with a colostomy is not a great quality of life. Some manage better than others, and certainly, Mom has become quite independent in managing it, but it wears on her emotionally.

So I think because of that, she is clinging to Dad’s memory more than ever. She told me how often she feels Dad’s presence at home now. I know some people claim to see dead loved ones before they depart. I certainly don’t discount those experiences, but there’s no way to prove whether those visions can predict death or not. I think Mom is lonely and sad and her 40-year relationship with Dad still brings her comfort, at least in the memories before his dementia took hold.

I had my own mourning dream of sorts recently. I watched this ridiculous (yet adorable) Swedish commercial about cats that can fly, and it made me dream about my sweet kitty that I had to put to sleep earlier this year. In my dream, he wasn’t quite flying, but he was levitating quite well. (Maybe another Hover Cat in the making!)

It made me realize that those who have departed still linger in quite imaginative ways in our memories.

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November 13, 2012 · 6:24 pm

Diagnosing the fading memory

In honor of National Memory Screening Day I wanted to mention an exciting new development in the area of dementia screening.

It just so happens that Georgia Tech is down the street from me, and they have created a new testing tool called the ClockMe system that can test for dementia, and can potentially be used at home. The new system is based upon the more traditional “draw a clock at a specific time” test that is normally done with pen and paper. The new test is done with a stylus on a tablet or computer screen, allowing the results to be sent to a doctor who can study them. The doctor can even replay the actual drawing session, to see how long the patient took to draw the clock and the steps they took to complete it.

I wrote before about my mom taking the clock test when she was sick this summer. If Dad ever took the test, I never knew about it. I was surprised at how telling the simple test is when it comes to diagnosing the level of cognitive function in a person.

As I’ve also mentioned before, Dad hated going to the doctor, as a lot people do. If this test can be developed so that it could be done at home, perhaps by a home health care agency or a private nurse, I believe that would encourage more people to take the test. And as baby boomers, who are more comfortable with technology, age and have to grapple with declining cognitive function, they could whip out their tablet computer and take the test on their own, and submit it to their doctor for further investigation.

Of course, there will be a segment of the population that chooses to be in denial or simply do not want to know the truth, and no test, regardless of its ease of use, will convince them to get screened. But I hope this new technology can aid in an earlier diagnosis of dementia, as time becomes so precious once that diagnosis is made.

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November 12, 2012 · 6:22 pm

Dad that’s gross!

With the flu season getting underway, I’ve heard a lot of people sneezing, wheezing and coughing around me lately. Dad was pretty dramatic when he came down with a cold. He would complain and Mom would nurse him (baby him) back to health. While he was vocal with his complaints, he never missed work because of the sniffles, he always toughed it out.

But what I remember most about those times when Dad had a cold were the hankies. Dad was old school and always carried a hanky with him, which mom dutifully washed (and I think she even ironed them!) I never understood the concept of carrying around a snot rag in your pocket when tissues were readily available. Sure, it’s more eco-friendly I guess, but gross!

One of the sounds I will never forget, just like’s Dad’s cough, is Dad honking like a duck into one of those hankies. As a child, I was so disgusted by the act but poor Dad was just trying to find relief!

I did find this article about the history of handkerchiefs on Wikipedia that was pretty interesting. I had no idea a king is thought to have created what became known as a hanky!

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November 11, 2012 · 6:28 pm

Trying to grab the elusive prize

I was browsing through some popular smartphone apps and saw one that was a prize claw game. I remember those enticing, frustrating machines from my childhood.

Normally, I would hit my parents up for a nickel or quarter and choose something from those toy and candy dispensing machines that are in the front of stores. Most times I would get a brightly-colored gumball that I could barely fit in my mouth. Sometimes I would get sour candy of some sort, which would come out in a rush from the dispenser, and would often go spilling over my tiny hands. I also collected dozens of tiny toys stuffed in plastic capsules from those vending machines. I always had the bad luck of getting something I already had.

The claw machine that I remember was located in a restaurant geared towards kids. It was a destination spot for birthday parties. I remember my parents and I going to get ice cream one hot summer afternoon. As we were leaving, the claw machine captured my attention. A little boy watched eagerly as his dad worked the claw and magically grabbed a stuffed animal. He squealed with delight and ran off to show his mom what hero Dad had captured.

I had doubts Dad could recreate that magic. Dad was not mechanically minded, and as it turns out, neither am I. As an adult, I would never attempt to work one of those claw machines, as I know I would just embarrass myself. Even though I was filled with doubt, I begged Dad to drop a quarter and win me something. He obliged, but was completely confused about the controls and how to work them. He managed to move the claw an inch and grab some air. Game over.

So much of our lives are spent going after the prize, but it’s the effort and the reason why we try at all that should be celebrated.

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November 10, 2012 · 5:13 pm

Trying to track down a slip of paper

My mom is trying to get one of Dad’s pensions. This one is from his brief work history in England. We must send them a certified copy of my parents’ marriage certificate in order for the government to release the funds. It’s only a $100 a month, but Mom has become obsessed with getting it.

It seemed like a simple enough of a request. Until I started looking for it.

My parents were married in Mexico in 1971. Mom had this mysterious document that appeared to be a receipt for a marriage license. But it was unclear if this was the real marriage certificate. It was all Mom had, so we sent England a copy of that.

Not good enough. They still want what they originally requested.

And that’s where the real fun began. I figured I could easily find resources online, but even though I consider myself quite adept at Internet research, I found information to be spotty at best. I finally found an address that I hope is correct. I’m now awaiting a response (fingers crossed.)

I find it interesting that two people could be together 40 years and go through hell for those last few years and we have to track down an elusive slip of paper to prove it to the world. Death comes with plenty of red tape, that’s for sure.

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November 9, 2012 · 6:19 pm

Driving without insurance

With talk about the election this week and the health insurance requirement that is part of Obamacare, it made me think about the time Dad skipped a government-mandated insurance requirement.

This was during Dad’s unemployment period. It went on for several months, and money was tight. Auto insurance in California was expensive, but required by law. Dad decided to save a few hundred dollars and not renew his plan when it expired.

And that led to many tense drives around town, where Dad would panic about being pulled over or being in an accident. As it turned out, he did end up getting into an accident, though it was one of those situations where the other driver hit him from behind yet it was still determined to be Dad’s fault. Dad was hit with some pretty big fines. Lesson learned. In later years, he always had car insurance.

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November 8, 2012 · 7:39 pm

An Irish wake

Mom was telling me about someone she knows who just revealed they have pancreatic cancer, stage IV. Realistically looking at their odds, he has already started planning for his departure from this world. An Irishman, he wants his life to be celebrated via an Irish wake versus the sad mourning of a traditional funeral.

Dad had no ceremony when he left this earth. It was impossible to know if that’s how he would have wanted it, because he had a fear of death and would not discuss the particulars when he still had his mind. Dad’s family is in Ireland and Australia, so there’s no way they would have come to New Mexico for a funeral. And while Dad was liked by the locals, he didn’t have any close friends, so the invitation list would have been small. Then there was that winter storm, combined with the Christmas holiday that delayed Dad’s physical departure from this earth. (His cremation was delayed until a doctor was available to sign the death certificate. He died five days before Christmas, but was kept in the morgue of a funeral home for several days until the paperwork was completed.)

I do like the idea of a wake, where one’s memory is celebrated. Mourning certainly has its time and place, but I prefer to do that privately. And the sadness, the grief comes because of what the deceased person meant to others. I think Dad would have approved pint glasses of Guinness raised high in his honor and memory.

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