Self-care for caregivers–Advice Part 6

Why self-care matters

Self-care is the last thing most caregivers want to hear about. They focus on the patient and their needs. Taking even a minute from that work can–and does–feel like a betrayal. Sometimes, even the patient sees it that way. There were times Jane certainly did.

…we will laugh again…

But we lay caregivers ignore self-care at our peril. If we don’t take care of ourselves, there will come a point where we can’t take care of the person we love. We have to have our wits about us. If we don’t get enough sleep or enough to eat, we won’t be sharp when we need to be. And never mind what would happen if we got sick.

The caregiver’s journey

I’ve never faced greater difficulties mentally, physically, or emotionally than I did over the four months from Jane’s diagnosis to her death. I lost 20 pounds. By the end, I walked like an old man–literally shuffling from place-to-place. Some would say I still have not recovered my sanity. I know I am only now coming out of the numbness that loss engendered.

…we lay caregivers ignore self-care at our peril.

And four months is nothing when it comes to NET cancer–or many other diseases. My mother suffered with Alzheimer’s the last 20 years of her life. My father stayed at her side constantly for every one of those years, despite heart problems of his own that led to a quadruple by-pass. I marvel at that. And I marvel at the many husbands and wives who have faced NET cancer together for years and decades.

Balancing self-care with patient care

Self-care is very much a balancing act. You have to know the difference between what you need and what you want. And you have to stay aware of what the patient really needs as opposed to what they want. This is especially true in the late stages of the disease where any absence feels like a betrayal to you both. If I were gone for a full day to go home and pay bills and pick up clean clothes, I knew Jane was not going to want anything to do with me when I got back.

By the end, I walked like an old man…

But I made those trips anyway. I couldn’t forget where Jane was. I couldn’t ignore the guilt I felt. But each trip enabled me to believe Jane would come home eventually. Each trip proved to me, somehow, that she was getting better: See, I could leave her and nothing bad happened.

Physical self-care

From the beginning, you have to take care of yourself. The first piece of that is taking care of your physical needs. You may not want to eat, but you have to. And fast food, tempting as it is, is not the right answer here. You need the proverbial balanced diet. You need to eat at regular intervals so you avoid gorging yourself when you do eat.

Self-care is very much a balancing act.

For me, personally, that means a good breakfast to start the day. Stay away from the donuts. The sugar high will only make you hungry sooner–and the crash will tend to make you feel depressed. It’s hard to keep the patient positive if you look depressed. Eggs, oatmeal or low sugar cereal, fruit, or yogurt are all good choices. Lunch and dinner also have to be health conscious meals. They need good protein sources, good carbs and vegetables.  Snacks between meals are fine, but make healthy choices there as well. The occasional candy bar won’t destroy your health, but too many will become a problem.

Benefits of daily exercise

Self-care also requires exercise. Even when Jane was in the hospital, I got in a walk every day–usually after I’d had lunch or dinner. Walking does more than keep your muscles working. A good walk–or any sustained physical exercise–releases endorphins that improve mood and attitude. If you like working out in a gym, go there. It will also provide you with socialization beyond what you get from doctors and nurses. Seeing people who are not going through what you are can be a good thing.

Stay away from the donuts.

I don’t like gyms. There is a set of free weights in the basement–nothing heavier than 10 pounds–and I work with them every other day. I do lots of reps to maintain muscle tone and stamina. I missed that when Jane was in the hospital. I’ve since thought a half-hour in a gym might have been good for me mentally and emotionally, but I wanted to be close by if Jane needed me. I restricted my walks to the neighborhood when Jane couldn’t walk with me anymore.

Self-care for the mind

Avoid alcohol or “recreational” drugs. Either can cloud your judgement. Alcohol is a depressant–as are many other drugs. Neither of us used drugs at all or drank beyond a glass of wine or beer with dinner once a week. We stopped drinking even that much–save a glass of champagne on our anniversary–after Jane’s diagnosis. It was nearly a year after Jane’s death before I had a beer again. I didn’t trust myself not to climb into the bottle and hide there.

Self-care also requires exercise.

In retrospect, I think counseling would have been a good idea for me after Jane’s diagnosis. I needed more coping skills than I had. And I certainly needed someone non-judgmental to simply listen to what I was feeling and experiencing. Frankly, we already had too much on the table at that point; I don’t know where the time would have come from. I’ve sought out some counseling since, but haven’t found anyone I really trust crawling around in the dark spaces of my mind, yet.

Emotional self-care

Laughter is an important balm for both of you–but especially for you. You need to find times and ways to laugh. Buy or rent a DVD, or go on Netflix and find the kinds of comedies you like that make you smile. It’s hard to do, I know. We reached a point where any time I suggested we watch a comedy together, Jane got mad. I stopped making the suggestion, but looked for small bits of humor when I went to the cafeteria to eat or went for a walk. Laughter cleanses the soul and gives us a momentary release that lets us face more hardship than we might otherwise.

I needed more coping skills…

Some people find strength and solace in prayer. If you do, don’t hesitate. I spent time in a nearby church and more time in the hospital chapel. I became friendly with a couple of the chaplains. Honestly, it didn’t help much. But I know others who swear by it. Just don’t push your faith–or lack thereof–on the people around you. It’s insulting and hurtful when people need to have their attention on other things than what you believe, or want them to believe.

Solace in others

Do talk with others in your situation about what they are going through. Listen to what they say has worked for them in keeping their sanity. One of the best pieces of advice I got was from a woman who’d nearly lost her husband to heart disease. She talked to me about how important being upbeat in Jane’s presence all the time was to Jane’s survive as a patient. But she also told me to remember the experience caregivers have is very different from what patients experience. Our needs are different–and they matter every bit as much as what the patient needs. We really need more support groups for caregivers.

Laughter is an important balm…

If you go to Relay for Life, they have a huge celebration of survivors. Sometimes they are accompanied by their caregivers, but the survivors are the center of attention–as they should be. The caregivers’ lap comes much later in the program–and often feels like an afterthought. Until you’ve been a caregiver locked in a life-and-death struggle with someone you care deeply about, you don’t get it. As emotional as the Survivor Lap is for me, it pales beside what I feel when I am on the track with my fellow caregivers, especially those who have lost someone to cancer in that role.

The final journey together

With NET cancer, the reality, right now, is that eventually, we are going to fail. Barring a major breakthrough on the research front, there will be a final trip to the hospital and a final bedside vigil in our future. We will stand at the head of the line at the wake, sit in the front pew at the funeral, and be the last to leave the grave. Eventually, the numbness will go away and the hurting will start. I know. I’ve been there–and still am.

Our needs are different…

Someday, we will laugh again, without feeling guilty or feeling that we failed. We’ll know–in our hearts as wells our heads–we have done the best that we could do–and that will be enough.

Self-care continues even after the patient dies. Training for my first Jimmy Fund Walk helped keep me sane in the months after Jane's death.

Self-care continues even after the patient dies. Training for my first Jimmy Fund Walk helped keep me sane in the months after Jane’s death.

Posted by walking with jane on November 30, 2016

2 responses to “Self-care for caregivers–Advice Part 6”

  1. Xavier Y says:

    How does the caregiver overcome self recrimination?

    Everyday unprecedented and unforeseen problems arise. There is frequently to little information, too little understanding, too little reliable help, and too little time. However, decisions must be made and action must be taken. Too often the decisions are not reversible and may have life changing or life threatening implications.

    Afterwards, in the silence of the quiet moments, reflection and second guessing fills my mind. The inevitable whys? Why didn’t I anticipate? Why didn’t I know? Why didn’t I understand??? Why don’t I have expert knowledge of medicine, law, insurance, pharmacology, finance, government bureaucracy…

    Why don’t I have a cape and a big “S” on my chest? That is what I promised her 45 years ago. That is what I believed until I became a cancer caregiver.

    • I wish I had an answer for you I could tell you worked. I don’t. Here’s what I tell myself on the bad days. Sometimes it works–sometimes it doesn’t. In my head I know it’s true. In my heart, not always.

      I did the best that I could with the information and skills I have. Together, we turned over every rock we could reach–and when she could no longer turn them over, I kept doing it.

      But there was a line beyond which she did not want to go. I knew where that line was and I honored it. When fighting chance became no chance, I let her go as gently as I could. I sang her into whatever comes next as best I could.

      Before she went into the hospital, she forgave me for everything I thought I had done wrong in our time together. And she told me she forgave me–in advance–for anything I might think I did wrong while I took care of her there. And I forgave her, as well.

      Every cancer caregiver is a super hero. But that status doesn’t make us perfect–and it doesn’t mean we can always save the ones we love. We do the best that we can for as long as we can. And sometimes the thing requiring the most strength and courage from us is letting them go when there is nothing else left to do.

      Thank you for what you have written here. I’d been thinking about a longer piece on dealing with the aftermath–but wasn’t sure I should write it. You’ve convinced me it needs to be done.

      Be well.