Caregiving and the Engineer on the Steam Engine Train

October 4, 2021, 3:00 pm, 73F (23F), Sunny and warm

When I write about our Journey, I rarely seek input from other caregivers before posting it.  Today, I wrote a piece for our Journey with a metaphor of being a steam engine train engineer (driver) driving the train.  Before posting it, I sought input from two caregiver friends I know well and they did provide their valuable input.

One caregiver is taking care of her husband and other her brother.  Mine and these two other stories paints a well-rounded scenario of differing situations we caregiver traverse in our journey. If you are caring for your loved one, you may find resonance with our stories or have another, aptly appropriate, version of yours.

Here are 3 stories:

On October 4, 2021 KC Mehta wrote:
 
In our Alzheimer’s support group and also from other caregivers I often hear that giving care to our loved ones is a lonely journey in spite of tremendous support from the friends and family. We caregivers are fully committed and show up everyday ready to tackle all challenges that are thrown our way.

Growing up in Mumbai, India, during summer vacations our family used to travel interstate by the steam engine train. One image that is etched in my mind is the train engineer (driver) and his assistance with handkerchief tied to their head to prevent soot and dust getting into their hair but their faces were sooted-black with twinkling white eyes.  To generate steam, coals were fed into the boiler by one shovel at a time. The trains almost always ran punctually making scheduled stops at the stations along the way.

Fast forwarding to being a carepartner for my wife, Sumi, I am like a train engineer.  Sumi and I are in the engine compartment and driving this train everyday. I keep feeding the coals in to the boiler to generate the steam to keep the engine and train running. 

Our train makes stops at every station. People get on, and people get off.  Some come to the engine compartment to give me respite and take over my duty. They feed the coals into the combustion chamber to generate steam and keep the train running.  Some show up in the engine compartment to ride along with us and give us company.  And, some who are not coming to the engine compartment, I visit them in the dining car to have a bite and chat while I am on my respite.

There are times when the train stops at the station but no one gets on or off, but the train departs at the scheduled time for the next station hoping others are waiting there to get on.  Sometimes, well-wishers or regular vendors from the platform wave and cheer us as the train is leaving the station but do not get on the train.

And thus our Journey continues... unabated!
 

Response from the first caregiver friend:
Hi KC, The caregiver's journey continues day by day, station by station, with and without help from others. The engineer must always be on duty, always watching the schedule, always shoveling the coal. Sometimes the engineer feels that others cannot do the job as well as he can and does not invite people to get on the train. He does not invite people to help with shoveling the coal. The train does not run at high efficiency. The engineer may struggle to stay awake at the controls. He does not see the well-wishers waving from the platform.

This is the sad analogy compared to your optimistic analogy. How to keep the story happy? The sad engineer has not learned to seek and accept help but the train is relentless. The coal must be shoveled to support the engineer, the train, and the loved one. The engineer must try to build a team to help run the train most efficiently.

Today I shoveled coal to maintain our house by hiring a handyman. He is now part of my team. It does feel better to operate the train more efficiently.
 

Response from the second caregiver friend:
I’ve read both analogies and subsequent comments a number of times and both gave me pause to consider how my situation differs from the engineer who must be on duty 24/7 to provide or oversee care.

As my brother’s dementia progressed, I thought about trying to care for him at home with me and my husband.  I sought the counsel of the social workers and aides who had been providing care for him and, for a number of reasons, including the stage of his dementia and his other health conditions, they all advised me that unless I could provide live-in professional care givers for him, I should find a nursing home who are experts in providing that care.  PACE recommended a facility and although it is an older facility, it has provided a caring environment for my bother and ongoing support for me.  

I have met all of my brother’s caregivers and learned that most of them have been there for years and have family members who have worked there for years.  Over two years and my regular visits at different times and days, I have been overwhelmed with the loving care I see the staff provide every resident, including my brother.  We know how hard providing this care can be. 

But I’ve come to learn how important routine is for my brother  (and most dementia patients, I assume).  I wonder sometimes if my visits help him or disrupt his routine.  Are the visits more for me to ease some of the guilt I feel that I don’t have my brother here with me??  That I should be doing more? 

When I visit him, he does not speak or show much, if any, emotion, no matter what I do to encourage it – photos, videos, stories, music – or how animated I am trying to encourage a reaction. 

This morning, one of his caregivers sent a video of him snapping his fingers to the music in the dayroom and smiling when she asked him if he wanted to dance.  It made my heart sing with joy and it affirmed the decision that he is happy and in the best place for him. 

The reason I share this is because each of you may reach a point when your loved ones may require more care than you can provide at home or the toll that it takes on you may become overwhelming to the point where the caregiver requires care.  

I encourage you to seek the counsel and advice of a professional that can help you make the right decision for them and for you as time goes on.