Take Care While Giving Care

“You need to have a daughter. They are the ones who take care of you when you get old.” –Author’s mother, to me when I was expecting my second son. I never did have a daughter. She didn’t need care at the end of her life.

One of the greatest, most meaningful jobs one can have comes with little or no pay, and sometimes little appreciation. It typically requires that one puts their own needs and their life in general on the back burner in order to take care of someone else.

A caregiver is typically underpaid or unpaid, and often not recognized as the angel they are. Without them, another human being would not be able to function very well, if at all. Yet, their praises go mostly unsung, and they just keep on working.

Lifespans in America continue to increase. The Baby Boomer generation is aging, and often the Boomer’s parents are alive and continue to age as well. There are varying definitions of the “Baby Boomer” generation, but it is roughly defined as those born between 1946 and 1964. The post-war increase in births has accounted for a significant increase in the population of that age group which, in 2018, include those between the ages of 54-72. While this generation has generally been credited as having healthier lifestyles than their parents, the sheer numbers provide a challenge to our medical system, and for those who need care as well. As mentioned, lifespans continue to increase, so many parents of Baby Boomers are alive and require increased medical care and/or caregiving.

Complicating this phenomenon is the fact that many Boomers had their own children later in life in order to pursue professional goals that became more easily reached in the post-war economy. Therefore, as they raise their own children, their parents require help as well. This “sandwich generation” faces challenges in providing care to both their children and parents as well.

While there are millions of caregivers for children in need of care as well, this will focus mainly on caregiving for adults.

Caregiving may very well be one of the most rewarding, most unrecognized, most fulfilling, most underpaid/unpaid, most important and most thankless job one can have. Paradoxically, it can be all those things at once.

An informal caregiver is typically a family member or a loved one, and is typically unpaid. A formal caregiver is typically paid to provide care in the person’s home or a long-term care facility. While paid caregiving is undervalued, under-recognized and typically underpaid, this will focus mostly on those who are unpaid caregivers, those who are typically family members or loved ones.

It is estimated that within the last 12 months, 34 million caregivers have provided unpaid care to an adult age 50 or over. Approximately 15 million of these 34 million caregivers provide care for someone with Alzheimer’s or another form of dementia.

As with my mother’s sentiment expressed in the opening statement, most caregivers are female. However, in my medical career that has included hundreds of home health visits, I have seen unparalleled care given to my patients by their sons, husbands and other male family members.

I told my mother I would have good daughters-in-law. So far, I have one who is stellar, and she is a nurse practitioner. So far, so good.

Caregiving is required for both physically and mentally disabled people. For many, their conditions continue to progress, making caregiving an increasingly harder task.

It is typical to see very little attention paid to the caregiver when the person receiving care is obviously in dire need. “Care for the caregiver” is a concept that is often overlooked, but is gaining ground in our society. There are support groups organized specifically for the needs of the caregiver, and to offer support for those who are also living their lives with their primary responsibility in taking care of a loved one.

In my home health and outpatient visits as a speech therapist in the rehabilitation setting, it is the norm—almost certain—that the patients will take advice from a therapist or other medical professional before they will take the same advice from their caregiver, which is most often the spouse. I assure the caregiving spouse that it is human nature for the person receiving care to take the same advice from a professional, but not from them.

It is a difficult position for the caregiver, but this assurance that the vast majority of people I work with demonstrate this is at least mildly comforting. To have their efforts and suggestions met with disagreement and sometimes disdain is disheartening for the caregiver, who typically goes above and beyond to take care of their loved one. So, to the caregivers who have experienced this, please know you are not alone, and this is typically—and unfortunately—the norm.

There are plenty of grateful people receiving care as well, and they need to be recognized, too. Keep up the good work!

To the person receiving care:

  • make a regular effort to say “thank you” to you loved one taking care of you

  • be specific in your praise: examples include “I appreciate how you always put lots of ice in my water as I like,” or “I know you sacrifice your needs for mine, and I appreciate that more than you know.”

  • Allow your caregiver time to do what they need to do. If your immediate needs are met and you are safe to be alone for a few hours, keep your promise to follow whatever rules are in place while they are gone, with the most important one likely being: no getting up alone.

  • If volunteer caregivers or paid caregiving is available as respite care for you while your loved one/caregiver is given time to meet their needs, allow this person a chance to prove themselves. Tell them you appreciate them, and tell them your life stories while they are there with you. You could likely entertain someone with your past experiences.

    • To the caregiver:

      • Don’t feel guilty or inadequate if you would like to have regular time to yourself, time off to take care of yourself. Just as in an airplane, you must put the oxygen mask on yourself before you can assist anyone else. If you aren’t able to meet your own needs, you will struggle to help someone else meet theirs.

      • Seek out potential respite care. Some support groups offer free/low cost caregiving as respite for you to take time off, which you have undoubtedly earned.

      • Ask your physician, senior center, area agency on aging, hospital/hospice or consult online sources for possible support groups or systems for your specific situation.

      • Online social media groups exist to support others like yourself through the internet. Check Facebook or do a Google search for online support.

      • Sometimes your most basic physical needs are neglected, especially sleep. Being well-rested can make the difference between darkness and light in one’s heart. Good nutrition and plenty of water are important, too. Don’t forget sunshine and fresh air.

      • Don’t be afraid to reach out to other family members, even—especially–your children—if it is their other parent you are taking care of. Often, other family members think they don’t need to offer help because you appear to have it all under control. They may think they wouldn’t know how to meet the needs of the person who needs care. Keep it simple, and assure them they could do it.

      • Simply saying “I need help” is not admitting a weakness. The same woman—my mother—who told me I needed a daughter (not necessarily true) also spoke these wise words: “Asking for help is a sign of strength, not weakness.” (Very true.)

      • To those close to the caregiver: Offer your help with caregiving. Offer to give them a few hours to themselves while you take over caregiving to give them a break. Assure them their loved one is in good hands, and make sure they are. Practice gratitude for the fact that you are able to help.

        Care for the caregiver. It is so very important. Make sure that if you are giving care, that you are indeed taking care of yourself.