In yesterday’s email I read this quote from Elisabeth Kübler-Ross:

The most beautiful people are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern.

I thought of all who have known the depths of the caregiving journey:

• Family, friends and neighbors caring for their loved ones
• Clinicians, social service and direct care workers whose calling is caring.

All of you, caregivers, are most beautiful people; it’s my privilege and passion to support all who care.

I honor your sensitivity, understanding, compassion, gentleness and love!  In the face of suffering, struggles, setbacks and loss that are often invisible to others, you carry on.  You continue to care, even when done at great cost to yourself.  I salute your stamina and generous spirit.

I urge you to care for yourself as you care for others.  If the light of love within you burns out, all those you touch will suffer great loss.  The world will be a darker place.  Take care.  We need beautiful people like you.

One of the most frustrating parts of this experience was realizing the lack of communication between medical personnel. Of course, I know this exists because I am in a medical profession.  But this was the first time I saw the effects of it first hand: of having to repeat the same story on the phone over and over again, of one doctor “deferring” to another doctor, who then deferred to another. I look back now and wonder how folks handle this who do not have a health professional in their inner circle who can run interference and ask the right questions. Liz would sometimes start the phone calls, in an attempt to maintain her independence and control, but would eventually hand the phone over to me when the convoluted conversations were too much for her.
Ten days before Liz passed away, I had planned to take her to the mountains overnight for what I knew would probably be the last time. We were unable to go – she was short of breath and I knew she would not do well in altitude. Once again, I was in the horrible position of having to tell her something she didn’t want to hear. Our relationship had changed, it was suffering under this stress. The morning we were supposed to leave, my “health professional-self” had to keep fighting back the “friend-self.” The friend-self wanted to ignore the reality of her shortness of breath. The health professional-self with a heart of stone told my friend-self to go away. Of course my brain won out over my heart, but our relationship suffered at times like these. It was more painful than I ever would have imagined to have my dearest friend look at me with derision in her eyes and begrudgingly tell me that she understood, in a tone of voice that seemed to say that I was just trying to deprive her of happiness.
Within a few days Liz heard from the orthopedic surgeon who felt one of her fractures from the bone cancer should be fixed. We had already scheduled an appointment with her primary doctor (her oncologist deferred…) to address her many medications and her increasing confusion. Was it the brain tumor? Was it the meds? No one wanted to tackle that question, it seemed. Now the appointment with the primary care doctor had been delayed because the surgeon wanted to operate. Before I knew what was going on she had gotten pre-op testing done, yet no one, it seemed, was aware that she was having trouble breathing! Fortunately, the surgeon needed the final release from her primary doctor, so I met Liz and Gina at his office late in the day.
Within half an hour he had sent us to the emergency room because of her terrible respiratory condition. That was at 6 p.m. Liz was eventually admitted to the cancer ward and Gina and I left the hospital at 3 a.m. By three o’clock the next afternoon Liz was in the intensive care unit.
Little did we know that when we wheeled Liz into the hospital the previous evening, that it would be the last time she would feel the fresh, cool San Francisco air that she loved so much.

It is difficult for me to believe that the last time I wrote I thought I would be contributing on a regular basis about the process of caring for Liz as she underwent the clinical trial. Suddenly it is April. Such is the life of a caregiver. Time slips away under the daily obligations.

In the blink of an eye, it seems, Liz was gone. Her cancer, which had been rather dormant for 13 years, exploded and invaded every part of her body like pieces of shrapnel. So now I write to you from a place of deep grief, but with hope that my observations about my time with her may make you feel not so alone. Between December and March she went from a person who had control of her mind and her body to someone who was failing rapidly and ultimately succumbed.

I was not Liz’s primary caregiver. In December, her daughter, Gina, took over the day to day tasks of setting up her medication boxes and getting her to doctor’s appointments. But generally her daughter and I shared many duties. I would sit with Liz most nights and would relieve Gina so that she could get away for a weekend. I would accompany them to doctor’s appointments to be another set of ears and to make sure the right questions were asked.

I could tell that Gina was becoming overwhelmed. Some people become more pleasant and passive when they are fighting for their lives. Liz was not one of those. Liz’s memory was failing even as she continued to attempt to keep control over all that was happening to her. She could not handle the phone calls to doctor’s offices or if she needed to get information about her care. It was too much for her to explain her question over to each person she needed to talk to. Yet, she was indignant if we pointed out that her memory was the reason Gina would hover to make sure she had taken her meds, or changed her pain-relieving Fentanyl patch, or to encourage her to eat healthy food. If I urged her to use a cane or to not shower alone, she would brush me off. It was painful for me; she had already fallen several times, yet suddenly my physical therapy credentials held no weight for her. My expertise was for someone else, not her. I felt diminished and useless.

She was often rude to Gina and tried to still be the mother when it was clear that the roles had changed. Gina, being in her early twenties, would fight back as mothers and daughters normally do during that period of a young woman’s development. Often after Liz had gone to bed, Gina and I would talk about the difficulties of the situation. She would rest her head on my shoulder and we would just sit on the couch and hold each other until it was time for me to head home.

In the morning it would begin again for Gina, and I would arrive near the end of the day to take over the evening shift. This was the most difficult part for me. Whereas last summer Liz and I spent almost every night quilting and watching TV, talking and laughing, now the conversations had become limited in scope. I was already beginning to lose my friend. Besides Liz’s short term memory and judgment being impaired, she would sometimes venture into nonsense talk. She would send text messages and emails to me that made no sense. Add to this the reality of Liz’s elderly mother living in the home and an unhelpful extended family – it was turning quickly into and frightening and untenable situation. Sadly, we would not have to worry for long.

As people age, they sometimes develop conditions that require medications to manage their diseases and to keep them healthy. Sometimes the number and frequency of these medications can become daunting. The complex medication schedules may lead to mistakes: missing doses, taking incorrect amounts, or taking medicines at the wrong times. And these types of mistakes could lead to unnecessary doctor or hospital visits, illness and even death.
As a nurse in the hospital setting, I cared for seniors who had experienced reactions or injuries related to medication mismanagement. A 2011 study from the Centers for Disease Control found that each year nearly 100 thousand adults over 65 end up in the emergency room because of the wrong combination or dose of their medications.

The traditional “pill boxes” or organizers that allow dispensing medications up to 4 times a day for a week at a time, may not be an effective tool if a person has cognitive impairment and needs reminders and supervision to take their medications at specific times.
Today there a number of different automated technologies to help seniors and their families manage their medications more safely.

Personal Automatic Medication Dispensers, also known as electronic pill dispensers, are programmable, locked devices that will automatically dispense a dose of dry medications at predetermined times. These devices also act as multi-alarm medication reminders that alert the person when it is time to take their medication with audible alarms, lights, text and voice messages. Some of these devices also have on-line monitoring capabilities that track the user’s dispensing activity and can contact caregivers or a monitoring service when medications are not dispensed per the prescribed regimen.

Several different companies offer these types of products including Philips, Med Pro and Life Station and can be purchased online and from vendors such as Nurture Connect, a company who provides technology products and services.

I haven’t written in two months and have felt very uneasy about it.  Would I ever find something new to say to caregivers who read my blog?  Happily, I found the words this morning.

Walking at 7:45 on this clear, frosty morning, I decided to try something different and took a path that winds through the woods, along the stream.  My pace instantly slowed as I left broad, level neighborhood streets for a rocky, uneven trail, barely a foot wide.  To safely navigate a steep downhill grade, I needed to concentrate.

The frozen, frosty ground crunched beneath my feet.  A slim ribbon of matted leaves stretched ahead, leading me towards the stream, where a huge tree had fallen all the way across from one bank to the other.  Roots upended and the bank eroded, the trail abruptly shifted left to go up and around the downed tree.  The fall-off to the stream was steep, so I had to pay close attention to every step.

When past this treacherous section of the trail I came to the back of a yellow sign.  Walking around, I read the warning for those who’d be approaching from the opposite direction.  It said “Slow: Narrow Path.”  Instantly, I knew that message was meant for me!

I’m often impatient with life, particularly with work projects and goals.  When it seems that things are hard to accomplish or take too long I worry.  Am I doing something wrong or not doing enough?  I wonder if things will work out OK and stew in self-doubt.  I redouble my efforts, trying harder, working longer hours.  I lose a healthy balance in my life and deplete the very energy I need to achieve my goals.

When I saw that yellow sign this morning I heard the voice of God in my heart. “Jane, slow down!  What you’re doing is difficult and requires concentration.  If you rush, you may slip-up.  Making your way forward successfully will take time.  Accept that this is the best pace for now; you’re not doing anything wrong.  Relax and trust that the details of life are working out as they should.  You’ll go at a different pace some other time.  For now, be still and know that I am God.”  What a reassuring message!

Exiting the woodland path, I climbed the hill and headed home.  The sun was brilliant, glistening off my neighbor’s frosty grass like a carpet of diamonds.  Returning to the road, a woman walked past on her way to the train station; she smiled and wished me “good morning.”  I looked down and found a salt-covered penny near the curb in the street.

Picking it up, I smiled and let the calming, encouraging message sink in.  These days, my life is like an unpaved, narrow path which requires me to concentrate and move carefully.  Try as I might I just can’t go any faster.  I can see the way forward and can handle what lies ahead, but if I rush I may stumble.  Slow down; take it easy.

I also walked a narrow path during my caregiving years.  Then, as now, I often felt impatient with life.  I worried that I wasn’t doing enough, wondered if things would work out OK and sometimes stewed in self-doubt.  I pushed myself beyond a healthy balance and often felt depleted.

If you’re a caregiver on a narrow path, take some time for yourself.  Keep caring, but slow down.  Relax and trust that the details of life are working out as they should.

Until next time, take good care of yourself…Jane

Monday rolled around and I am back in the saddle.  Took Liz’s mom to a doctor’s appointment, then to the hospital to visit her daughter,  my dear friend.  Visited Liz.  Remembered to eat (a little late, I gulped down half a chicken in about five minutes flat).

Liz is heavily medicated – I already am losing her brightness of thought and personality.  I am pleased and horrified to see her son become a man under the worst of circumstances, and her young daughter of 24 handle the medical issues with the grace of someone much older and wiser.

I was grieving over the weekend, but I was also doing something else.  I was releasing the pent up pain, pain of denial of the truth of her condition, pain of watching her suffer, pain of wanting to go back to the summer nights.

After my Dad died, my Mom went into his workshop to get something.  The workshop was all “him.”  She took a hammer down and angrily sobbed and beat the hammer on the work bench.  Then, as she tells it, she calmed down and said “Thank God for the gift of tears.”

I thought of that as I sobbed and knew that what was happening to me was healing and replenishing so that I can continue the caregiving that I hoped I would never have to do.

Liz was released from the hospital a little while ago and will begin the clinical trial soon.   I will resume my evenings of  being with her as much as I can, making her laugh which is my gift to her.  Perhaps I will occasionally watch a sad movie to help the tears heal me once again.

Following the time in Hawaii, my friend, Elizabeth had an appointment about an hour away.  She was being screened for participation in a clinical trial of a new med.  Her son took her to that screening.  The purpose of the drug in the clinical trial is to shrink the tumors.

Liz had been increasingly short of breath the day of the screening.  Worried, her son then took her to the emergency room on advice of the physician.  It was Thursday morning.  They admitted Liz to the hospital for a workup.

Saturday morning I got the news that the cancer had spread to Liz’s brain and spinal column.  I am a health professional, well aware of what that may mean for her.  And for me.

My mind drifted back to last summer. Liz is my quilting buddy. Last summer I spent every night at her house until at least midnight working on a quilt I wanted to finish as a wedding gift.  We watched silly TV shows while I sewed.  We shared laughs and conversation.  We sat together and surfed the internet for stories, and our kids’ facebook pages, and online shopping.

We share so much – eclectic music, movie and book tastes.  Faith.  Humor.  One night, as a refreshing breeze came through to cool off the house after a blistering hot day, I was standing at the ironing board.  Liz came out of the bathroom, walked over to me and said “we will have to remember these summer nights.”

It was this moment that entered my brain when I got news that the cancer had spread.  I began to cry and could not stop.  I texted friends.  I spoke with friends from my youth who live far away.  A local friend came over quickly to hug me.  Another came the next day and stayed awhile.  My son held me tight as I sobbed.  I put on music and danced around, searching for some drop of joy.  It all helped.

I am so blessed.  But I cried alot last weekend.  I realized that I had been “stoic” for quite some time.  It occurred to me how very painful it is to my psyche to see my friend in pain and sick.

I have never endured something like this.  My Dad died suddenly in his chair watching a Cubs game for heaven’s sake! (They won.  We joke that the shock killed him).  Friends who have passed were either not that close to me, or tragedy had struck in the form of  a car accident.  No one could have prepared me for the pain of watching Liz fight for her life, day after day, knowing that at some point she will more than likely lose the fight.

I realized last night, when I flopped exhausted on the couch to snuggle up with my 50 pound boxer and watch a little TV that I’ve been “freelance” caregiving.  One of my dearest friends in the world, if not my lifetime, has Stage IV cancer.  

Three weeks ago I sat with her while she paced around, rested, paced some more, never letting on that she was anything more than “uncomfortable.”  It wasn’t until she told me she didn’t want to live this way, and that she hadn’t slept more than three hours at a time in about a week, that I realized her level of pain was way beyond acceptable.

We got to her doctor for re-evaluation of her pain meds.  That got taken care of, and she managed to drag herself onto an airplane for the five hour flight to Hawaii.  She had never been there.  She and her sister had planned this trip last spring, and she was going.  It was touch and go until the morning of.  She was not in great shape, but at least she was going to see Hawaii.

I should explain that her cancer is rather rare and slow growing, so for about 12 years we have been complacent.  Then, like a switch had been turned on,  and right on schedule, the cancer started to move.  Into her lungs.  Recently into her bones and liver. Part of her above-mentioned pain was due to a spontaneous fracture of her arm.

I take care of her family, too.

Her son had been putting off his visits for more important things – like friends coming into town.   I extended myself to write him an email, sort of a written “cold glass of water in the face,” because at age 21 he was not tuned into exactly what is going on with his mother.  I have known him since he was little, but it was still very difficult for me to take the risk of “waking him up.”  Apparently my words reached him because he was waiting when I brought her home from the airport after Hawaii.  It was emotional for me because, for the first time, his eyes reflected the sadness of a man who understood the great sorrows of life – the innocent little boy was gone forever now.

I also help out with her 89 year old mother who lives in the same house – I take her to doctor’s appointments, grocery shopping, pick up prescriptions, that type of thing.  She is very very very slow!  It requires much patience and love.  I’m always on call it seems.

Then, last week, I hit the wall when bad news struck again…

Part 2 of The Gift of Tears is coming soon.

Thanksgiving is past.  A week ago today was Cyber Monday, when online retailers made over $1.25 billion in sales!!   No matter how much denial I may be in, there is no escaping the fact that the holiday season is upon us.  I am not even close to being prepared, but I am thankful for the ability to shop online!  Like for Cyber Monday shoppers, it fits into my schedule.  Many of us are in the position where we have a load of responsibilities and very limited time. But how many of us have considered that online shopping may also be helpful for our senior loved ones?

As I reflect on my family and the many patients I have had the privilege to care for over the years, I remember that many spoke of the fear and frustration of losing their independence. Giving up driving can become a significant barrier in maintaining independence. Physical conditions that reduce the ability to safely leave home, with or without assistance, can cause frustration and isolation. And inclement weather can contribute to our older loved ones being more homebound and isolated during the winter months in colder regions.

But it is important to maintain as much independence and dignity as possible throughout our lives.

Today we have technologies that can help maintain some of this independence. The telephone and television allow for the ability to shop for personal items and gifts from catalogues and shopping networks. Online shopping via the computer expands these choices. Today one can buy just about anything online. Whether buying birthday or holiday gifts, shoes and clothing for personal use or shopping for groceries or pet supplies from the local store, the web allows people to maintain this independence from their home. Online banking is another opportunity to maintain independence. Bookmarking favorite sites can assist in easy access to the web with minimal typing.

As caregivers, we look for ways in which our loved ones can maintain as much independence as possible. Computers can be a useful tool in improving quality of life for the entire family!

On behalf of Telikin, we wish you a Merry Christmas and a happy and healthy holiday season!

In my last post, titled Depleted, I wrote about how a cycle of fatigue and negative thinking drains my energy.  Fatigue leads to a bleak outlook, which makes me tense and keeps me awake at night, leading to more fatigue that amplifies my negative perceptions…and on it goes. I recommended seeking balance, taking a break, practicing self-care and avoiding stress-numbing behavior.

All are good ideas which I’ve been using, trying to practice what I preach.  I took a break from the office over Thanksgiving, kept meal preparation as simple as possible, took walks and naps, went to church and had some wonderful conversations with people I love.  Some of my energy has been restored.  Now it’s Monday after Thanksgiving, I’m returning to work with a bit more energy and a helpful new insight on my negative thinking.

These days are challenging for me.  Faced with adversity and unknowable outcomes I wonder if things will work out well.  I used to feel this way when I was caring for my parents.  Sincerely trying to do my best over long months and years, I begin to question my strength and stamina to go the distance.  The more tired I get the clearer and more convincing the voice of doubt becomes.  In my fatigue I begin to believe: I can’t overcome this adversity.  Things won’t work out well.  I’m not capable of persevering.

But this weekend I decided I could better handle these thoughts if I envision them as comments from someone speaking to me.  The voice of self-doubt is just Tired talking to me. Tired is a worn-out old woman, bent low from overwork and inadequate rest.  She’s part of me who recedes when I’m rested and is prominent when I’m not.  Tired’s voice is loud, convincing and unrelenting.  I lose perspective and am sucked down into negativity as she drowns out the voices of Optimism and Calm.

This weekend I discovered that all three of these voices live within me.  Giving Tired, Optimism and Calm separate personas is empowering; I can mentally line them up, listen for each voice and choose who I believe.  Being loudest doesn’t make Tired’s words the truest or most helpful.  Especially when my energy’s spent, I need to turn down the volume on Tired.

A weekend filled with self-care helped me hear the much quieter voice of Calm, saying:  Down-time will restore energy.  Quiet will ease tension.  Naps and several good nights’ sleep will make me feel better.  Then I heard the very powerful, yet quietest voice of Optimism reminding me that I’ve overcome adversity in the past.  She suggested that I take one day at a time; that I let go and trust God.  I have many blessings; more will come to me.  I’m capable and will find ways to solve my problems.

My friend, Sharline, recently suggested how to silence Tired’s talking.  Assertively look her straight in the eye.  With a firm, matter-of-fact tone say, “Stop that.  It’s just not helpful, honey!”  Then listen for, and respond to the still, small voices of Calm and Optimism.

So, how about you?   Are you hearing the voices of Calm and Optimism, or have they been drown out by Tired talking?  Quiet her insistent voice; it’s just not helpful.  When journeying through challenging times, as caregiving often is, the voices of Calm and Optimism will help preserve your health, well-being and capacity to care.

Until next time, take good care of yourself…Jane