Learning of a life well lived – my caregiving journey

By George Dicks, Geriatric Mental Health Practitioner with Harborview Mental Health and Addiction Service

Caregiving is a labor of love, ongoing - even after the work of supporting a loved one has passed. It is service.

We know that family and loved ones are excellent caregivers. There is a strong feeling of filial piety in many communities that define those roles by tradition - other communities by availability of time and material resource.

In all communities the mental wellbeing of caregivers is challenged by the ongoing, ever-changing demands on time and resources. There will be a strain on emotional relationships and social connections, and there are often conflicts with the caregivers' own basic needs such as employment.

That being said and well understood, the joy of sharing another's life journey so intimately and to be so valued by another is a vibrant and insightful experience especially with a close family member who has made an impression on one’s life, positive or negative.

Perhaps, as was the case with my “Little Brother,” (someone I often worried about for various reasons related to my own expectations) I was thrust into an all-encompassing caregiving role. As Little Brother declined he insisted on my presence at his bedside, which led to temporary relocation, using all paid leave, plane tickets, rental cars, family turmoil, and need to care for the cats by my patient and supportive spouse. Add to that the time change while bouncing between the coasts. Did I mention the brown recluse spider bite that almost cost me my left leg?

From the moment I entered the situation almost everything changed, and insights were revealed.

I was greeted in his hospital room by a representative from Senator Warnock with a letter from the head of the Election Commission encouraging his swift recovery - turns out that my brother was an Election Commissioner for over 10 years and a Transit Commissioner. I also met a Professor Emeritus of our local university's Pharmacy Department who described him as his best friend. I went on to discover photos of him with progressive advocates from around the world. There were photos of him at an ecumenical service at Ebenezer Baptist Church and the church of Martin King Luther, Jr.

His accomplishments were far reaching and impacted the economic, social, political, and religious life of his community. I met the most wonderful people, his colleagues and friends -- all accomplished and influential.

He was a great man- I had no idea -not the slightest.

The morning Little Brother left us, I was the only person in his room. I was utterly exhausted, irritable with him and the nurses, angry with my family, sleep deprived, and in acute pain, as I had torn my right rotator cuff from pulling him around in bed when he became immobile. I had existed on mostly 'hospital food' for the past month. Most of all I had been worrying or responding to every groan, concern, or discomfort of my Little Brother.


Then he left us.

I had never felt such radiant joy over anything. I had become a witness and caretaker of the most well lived life I have ever encountered. I felt rewarded by Creation to have shared this life with Terence Alton Dicks. My tears were of peace in the presence of a well lived life.

I had no idea nor did other family.

I have come to know many of those people, his friends and colleagues. They knew a very different person than the 'little brother' in my head whose first diapers I changed, whose last diapers I changed, and I would not have had it any other way.

There were moments of tremendous frustration with differing understanding of illness and of conflicting priorities.

Now, that I have this much more complete understanding of my brother's life, I rest well knowing of the fulfilled life that he lived.

Professional caregivers share this sort of journey everyday with thousands of people, as do family caregivers of all backgrounds, relationships, and ages. Some of us share a relatively short journey with a loved one’s critical illness, others have a long haul of caring for a loved one or clients with chronic disabling conditions for decades.

So, what is "Mental Well-Being," this phenomenon we all need despite the situations we find ourselves in?

Characteristics of a healthy mental life include a sense of hopefulness and optimism; a sense of well-being; having a sense of purpose and meaning in one's endeavors; a sense of resilience in the face of adversity/challenges; meaningful social and personal connections and friendships; a desired social role; sufficient material resources, and adequate health (one need not be a perfect physical specimen to be an excellent caregiver).

Here are some tips for maintaining a healthy mental life as a family caregiver:

•  Get quality SLEEP – it’s critical for your cognitive function, your resilience and long-term health.

•  Get HELP - whatever that means, and, in every way you need it. Though never enough, there are many others dealing with the same issues under the same circumstances as you are. You will not need to re-invent the wheel.

•  Learn from CREDIBLE RESOURCES about the condition you are helping mitigate. Engage with the professional care support system for information as conditions change. They can help you anticipate future challenges and prepare for them.

•  Connect with SUPPORT GROUPS - those fellow travelers - they have already been where you are going, and they can offer 'real' hope and understanding. They know the good/bad resources. They know the "System." Get to understand the "System," whatever that means in your circumstances.

• Find STRUCTURE. We have told ourselves we are going to take better care of ourselves many times before with varying successes. I know one thing for sure - nothing happens if you don't make time for it. Whatever you do must have a time and space in your life, it should be meaningful. You don't have extra time, you need to get benefit from the expenditure.

• Some of us need a separate space for EXCERCISE or structured physical exertion -and you need it to be exertion for benefit. Others don't do well trying to make and keep an exercise routine, but we can build a little more exertion into our daily routine. For instance, park the car farther from the entrance to the store, use the steps instead of elevator; gardening; humans are "walking machines," walk in a special place that offers other advantages.

•  Don't neglect your FRIENDSHIPS!! It has been hard reconnecting after COVID for everyone. Reach out to friends you have been out of touch with.

•  PETS!! Who nurtures you more, who humors you more? Our 4-legged family is so good for us and they seem to get us when others don’t; they are comfortable company.

• AVOID ALCOHOL - it's a depressant- unless you are dancing with others. Do DANCE, even if you dance alone.

•  Involve the other important people in your life in the cognitive and emotional "relating" you do with the people you care for- it strengthens the bond between all parties.

•  Then find HUMOR in the things that happen. Humor can ease the suffering and discomfort that sometimes comes with caregiving.

What is the "spiritual" of caregiving? That is what all the great teachers have tried to convey- we are here to care for each other. We can all answer the question for ourselves, but it has felt like the meaning of life on this planet for me.

Lastly, picture the smile of relief when your loved one sees your face.

Hear more from George in this special "Caring for Caregivers" video podcast episode on caregiving during the holidays.