I call this blog post my “caregiving thread.” I have learned over time that caregiving is internal to my very nature. I don’t know quite how or why, but I have a natural intuitive caregiving gift, so family and friends have observed and told me. This inner caregiving drive and intuition is also something that my twin brother knew about me before I did.

Since my college days, I have been doing one form or another of caregiving for: a) people who experienced tragedies by volunteering with a recognized voluntary organization; b) through active service with a local fire department and rescue squad; c) by helping a cadre of senior pals with home repairs and grocery shopping; and d) through direct caregiving for an uncle, an aunt, my spouse, and now my mother-in-law.

The art of caregiving is something I do… and that makes me, “me.”

I am not paid to care for others. Caregiving is not my occupation. I have no direct training, other than EMT/P training to provide medical care when I ran with the local rescue squad or skills-based service delivery training to provide help through that organization for whom I volunteered.

Sometimes I fall into a caregiving role unexpectedly. Sometimes I get involved in providing care semi-professionally as a trained responder. However and wherever I do it, I sense a higher calling and deliver the best of my skills, knowledge, and positive spirit to the people I care for.

There are seven points about caregiving that I want to share, and that illustrate how caregiving is intertwined with my very soul, spirituality, and faith.

Part 1: Service

“Service to others before service to self” is a mantra that I have adopted. There is something deep inside me that causes me to focus on how I can help others. I get much more back than what I give. I cannot explain why that happens. But the feeling deep inside me is spiritual when I help someone else and is stronger than a drug. I feel euphoric yet peaceful and calm. I can sit back at the closure of a day of caregiving and smile with contentment.

I dunno, back when my Dad complimented me for mowing a neighbor’s yard when that neighbor was sick, or when my Mom gave me recognition in front of the family for the way I helped a sister into the house after she fell and cut herself badly, applying recently-learned Boy Scout first aid — helping others has been something that I just did.

That sort of explains how I got involved with running with a local rescue squad. I was motivated, perhaps, by how cool John and Roy were on Emergency!, but motivated even more by being able to save lives. Directly. Sure, there was much less life-saving than squad-sitting and cleaning, but overall, that experience made me think that perhaps I really could make a difference in someone else’s life.

It also explains why I got involved with providing relief to those suffering from tragedy through a respected voluntary organization. The 40-year pin on my lapel says something.

Part 2: Applying skills and knowledge

I took (and taught) many courses that taught skills in various aspects of caregiving — from opening shelters to serving meals for hundreds to interviewing clients and providing financial assistance to giving first aid and other medical care within my licensure — I liked to find ways to apply those skills when helping others. That I did… for certain.

I also learned-by-doing, particularly when I cared for my aunt who had Alzheimer’s Disease. I applied skills that I learned both in providing medical assistance as well as in communication. I relied heavily on my ability to communicate with doctors, service providers, health insurance company representatives, but mostly with my beloved aunt. I was the last one on earth she recognized while Alzheimer’s stole her memory of all others, including her sons.

I also applied skills and knowledge I learned with my first bachelor’s degree in biological science, biochemistry, and pharmacology when it came to caring for my spouse during his three year illness with a persistent tick-borne disease. I persisted with asking many questions about treatment options, medications, and treatment protocols. It was clear that I knew what I was talking about, which helped me deal with more than 40 physicians and specialists to get the tests and treatments that my spouse required during the various stages and progression of his illness.

Part 3: Death

It was through caring for my uncle that I learned that death is part of the circle of life, and that one can choose to die on his own terms, peacefully and with grace. He knew that is medical condition was terminal, but he had about a year to live and execute his bucket list — so that we did with a lot of fun, smiles, and joy. While it was sad that his health was declining, he had lived a very full life. At age 95, it was his time to go. I obeyed his wishes for how he wanted end-of-life handled and facilitated his care so that he could die painlessly and peacefully at home and not be connected to life support in a hospital that would only delay death, but not restore him to a life of any quality.

I also learned that organized religion sometimes intervenes too much (or tries to) when end of life grows near. When it’s time to go, it’s time. In my opinion, praying to a deity doesn’t do diddly-doo-doo for the person who is dying, though it may help the person doing the praying feel better.

I also learned through my uncle’s death how those adherent to Catholic tradition become very upset when there is no funeral, memorial service, and a cremation instead of a burial. While my uncle did not want a full Catholic funeral and burial, I realize now that by honoring his wishes to the letter (that is, “no nothing after I’m gone!”), we should have at least had a family luncheon or get-together to help those in my family who felt that my actions to honor my uncle’s wishes prevented them from having “closure.”

I understand better now and should have respected their feelings, rather than defend my uncle’s demands to the end. We had a memorial event when my aunt died, and we all felt much better.

Part 4: Being a good advocate

I have found that speaking up for someone who is ill and dealing with the bureaucracy found so often with health insurance companies and some large medical practices is exceptionally important. The person who is ill often cannot think beyond their illness, and find bureaucratic run-arounds stressful, bewildering, and beyond their ability to manage. They need an advocate.

When my spouse was so ill with his long-term tick-borne illness, there were days when his brain was fogged and his behavior mimicked Alzheimer’s Disease. That vacant, blank stare is horrifying. He was receiving lots of mail from medical providers and his health insurance company with one denial after another. The providers miscoded services; they failed to get required procedure preauthorizations or when I got one for him, they lost it; or the insurance company engaged a tactic to deny first because they knew that someone with my spouse’s illness was not mentally able to compose and submit an appeal. (Yep, that health insurance company settled with us to avoid a lawsuit due to this nefarious practice which they denied that they did “on purpose”. I still call “BS!”)

I have found that making phone calls and writing formal letters of complaint or appeals wins positive results. Out of eight formal appeals of denial of benefits to my spouse, we won each appeal, including retroactive payments and future clearances of treatment.

For my senior pals, I serve as a “rent-a-kvetch.” That is, I am pretty good at writing complaint letters on behalf of a friend who was wronged. I have helped them get reimbursed for shoddy repair work, get replacements for items that broke, and also won several health insurance appeals. My payment? A hug, smile, and maybe a plate of cookies.

But most of all, being a health care advocate is incredibly important in the caregiving process. As I did with my aunt with Alzheimer’s, I spoke for her when she couldn’t. As I did for my spouse, I asked questions and spoke for him with health care professionals when his illness prevented him from doing so. Speaking up, engaging on behalf of others — advocacy — is indeed an important part of the caregiving process.

Part 5: Being graceful, unfluttered, persistent, and flexible

When someone is ill and requires care, they may resist. Most people don’t want to admit that they can’t care for themselves, either temporarily or as a new reality. This was particularly true with my beloved aunt who very gradually declined due to Alzheimer’s Disease, as well as with my spouse whose illness caused highly variable reactions on different days and hours within the day.

Gently remarking about some action that you can do to help when you observe a need sometimes overcomes resistance. For example, “May I offer to do this for you?” and describe an action that needs to be done. Or do the grocery shopping, walk the dog, take out the trash, mow the lawn — do some chores to ease their burden. They may not say it, but they will be grateful.

When caring for others, you have to realize that they aren’t feeling well, and sometimes they say things that they don’t mean. They can be harsh, rude, intransigent, difficult, and downright more-than-stubborn. Especially when dealing with my spouse during the worst of his illness, I learned two things:

1) diseases have a voice that overcome rational thinking and actions. You must not take that nasty voice personally. It is very hard not to become upset, angry, and want to yell back at that ugly voice, especially when it gets loud and physical. Take deep breaths, take a break, walk away. This too shall pass. The one you love isn’t speaking; it’s the disease. Yell at the disease, not the person with the disease. Those who cannot separate that nasty disease voice from the voice of the one you love may end up divorcing.

2) when they express anger, they are angry about not feeling well and being in a position where they can’t care for themselves. People hate feeling helpless. Rather than contribute to the helpless feeling, finding ways to demonstrate what they CAN do and reinforcing feelings of independence truly helps more than doing something for someone. It may take them more time and require repeated trials, while you could do it in a flash, but the feeling of accomplishment at doing something one used to be able to do makes a huge difference in the psyche of the person who is ill.

I also learned that flexibility is key. Doing something one way may not work. Try doing it a different way. Or asking someone to do something and they resist doesn’t mean that you have to drop it entirely. Perhaps a few weeks or months later, you can ask again and the reception changes. (This is particularly true with my mother-in-law.)

Keep going; keep trying; don’t quit in frustration. Persistence pays off (as long as it doesn’t kill you … read on about stress management.)

Part 6: Stress management

What my twin brother described to me when he observed how I cared for my aunt and my spouse is that I was able to find inner strength to deal with multiple and intense stresses. Worry about the person I care for and love; worry about managing bills and finances; worry about having the proper medications and treatment; worry about your own life with work and maintaining a household. All these worries compound into a lot of stress.

During the three terrible long years of my spouse’s illness, I had three annual physicals with routine blood tests. Interestingly, the blood tests consistently showed that the markers for stress such as cortisol levels were remarkably low. My blood pressure was normal to low.

I don’t know if the ability to compartmentalize stressors into smaller bytes and to let a lot of the things that cause stress to flow off my shoulders is genetic or learned from observing caregivers in my family (I have quite remarkable cousins who have done a lot of caregiving for other family members) — but whatever it is, I have a gift of not getting ruffled, remaining calm, and not really having much of a problem with stress. I can sleep deeply and well at night, rise brightly and get going early in the morning without coffee.

I make it a habit to practice stress-reducing activities like taking long walks, deep breathing, exercise, cat naps, and even meditation. I deliberately go on long motorcycle rides to clear my head. I call my twin brother and other siblings when I need to yell, scream, and let it all out, knowing that they love me by give me the freedom to vent in a safe environment (that is, no retributions or “I told you sos”). All of these things relieve a great deal of my stress.

Part 7: Have faith

I have mentioned a lot on this blog that I am a man of deep faith; however, I do not follow organized religion. I have a spiritual sense and call on my faith in knowing that there will be better times; those who are ill can and will recover; and those who will die will die on their own terms with dignity and grace. I truly have faith that I can, and will, persist and that my engagement with those I care for makes things better. For them. For me.

Summary

In summary, do I have regrets that caregiving has become a calling? Not at all. The only regret I have is that I can’t serve everyone who needs it. I am human and have my limits. Knowing those limits is what helps me survive.

How did I make it happen? I visioned and executed the best outcomes: my uncle and aunt were happy, safe, remained at home and knew they were loved all the way until the end. My senior pals know that they can depend on me as their adopted son. My spouse is now in remission from his horrible disease and I have to say that I take credit for making that happen (along with a great primary care physician.)

Summary tribute

On this 17th anniversary of the death of my mother, I know in my heart that she is proud of me as her son for the caregiving that I have done and continue to do. I feel her spirit deep in my heart and know, just know, that her spirit within me is smiling.

Be sure to tune in for Part 9: Don’t Live Regrets: Make It Happen.

Life is short: give of yourself in care for others and show those you love how you love them.