Respecting Diverse Approaches to Caregiving is Important


There is no one-size-fits-all approach to caregiving.

Short of neglect or abuse of the care receiver, nearly every family caregiver must be free to make choices that work best for their unique situation. Even then, the available choices aren't always ideal.

You simply have to try and acknowledge what it really means to just do your best.

As a caregiver for multiple elders – at one time I was providing some type of care to five elders in three locations, as well as caring for my children – I've received my share of criticism.

There were those who felt that I should have provided for my elders in my home. Of course, these weren't people who knew my family's full situation. They were casual onlookers. Sidewalk superintendents, if you will. People who knew the complexities that I was coping with understood that I needed to hire the help of outside care providers including in-home care and a terrific nursing home. That didn't make me less of a caregiver, but it made me different than a friend of mine who moved her mother into her home.

Caregiving situations are simply too diverse and complicated for others to pass judgment on the way one family caregiver copes with a situation. It's important to bear in mind that there are certain things not to say to a caregiver.

Being human, I suppose we all second guess others to some degree, at least in our thoughts. However, when we do that, we should have a way of reminding ourselves that we don't have the same life situation as the person we may be criticizing.

Not everyone is cut out to be a hands-on caregiver

There are people who simply don't have the emotional skills to be a caregiver.

If empathy, patience and a degree of willing self-sacrifice are not in a person's makeup, they are not bad people. They simply may not be the best hands-on caregiver for their aging parents. Many of these people wisely hire help for their parents' daily needs, while they work as advocates and managers.

This same approach holds true for many adult children who live at a distance from their parents. The parents still have friends in their home town and don't want to move to a strange location. Few of us can give up a good job and move to our parents' community in order to care for them. Therefore, often, much of the parent care must be delegated.

That does not mean these people don't love their parents. They are simply working with life events as best they can.

On a much more dramatic note, I've had many adult children who grew up in abusive homes ask me what their obligation is to their parents. For some, when I hear the horror of their childhoods, the fact that they are even thinking of their aging parents at all is amazing.

What I tell them is that they only need to do what they can without further damage to themselves.

They may decide that they can hire help for their parents, but can't give hands-on care. Or they may feel that they can visit once a week and manage the bills, but need to hire others for the rest of the care. There are some, of course, who simply walk away.

Who are we to judge if we haven't been through what they went through as children?

Some will quit a job and give up financial security

Even though people lose out on retirement benefits and Social Security earnings, as well as the obvious lack of salary, some people quit their job to care for their parents or have their parents move in with them. They become a full-time caregiver. They may struggle financially, but they are doing what they feel is right for them and their loved ones.

I feel strongly that caregivers who stay in the work force and find other ways to care for their elders shouldn't criticize those who stay at home. Conversely, neither should people who make the sacrifice to stay at home criticize others who hire help.

My caregiving involved both scenarios.

For many years, my main job was racing from place to place taking care of my aging loved ones who lived in various housing situations. However, during a number of my later caregiving years I was working a full-time job as well as caring for my three remaining elders, though they were then together in the same nursing home.

Both situations involved considerable sacrifice on my part, and the later situation involved substantial changes for my care receivers. But there was no other viable solution, so the choice was made. I went back to a full-time job and altered my caregiving, though I didn't, by any means, abandon it.

Amazingly, both choices drew criticism from others who thought – the operative word is "thought" since they weren't in my shoes – that they would have made better choices.

I had to learn to tune out criticism and do what I could.

My best had to be good enough.

If we've never walked their path we shouldn't criticize

One of the saddest stories I've heard was from an elderly woman who'd cared for her Alzheimer's stricken husband at home for years.

Eventually, her husband became violent and impossible for her to handle. She was frail herself and worn down. Her husband was accepted by a very good nursing home and she visited daily. Yet she was told by some of her contemporaries who had not endured anything close to what she had that she was disloyal to her husband and had given up on him. Understandably, the woman was devastated by the attitude of some of these people she considered friends, and she was consumed by guilt.

I told her she was doing the right thing for herself and for her husband. He was safer in the care of younger, stronger caregivers, yet she could visit and interact with him to the degree she was capable. She said it helped to hear me tell her that, but I know I couldn't negate the harm done by her so-called friends.

We can never know all of layers of someone else's personal life. We can never know their heartbreak and their exhaustion. We aren't living with their physical, mental and emotional pain.

Therefore, we should respect and support their individual method of providing care to their spouse or parents, only giving advice when asked or when, if we know them very well, we can truly be non-critical and helpful.

Most family caregivers go over and above the call of duty. They do what they can with what they are given.

We need to support one another as equals, sharing our pain, our experiences and our caring advice when asked.

Supporting someone doesn't always mean that we understand or agree with their choices. Supporting others means that we are there to help them along their journey with encouragement and hope. We give advice when asked and information when appropriate.

Family caregiving is a fellowship that provides us with the honor of offering support to human beings who are doing their best to care for their vulnerable loved ones.

Carol Bradley Bursack

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Over the span of two decades, author, columnist, consultant and speaker Carol Bradley Bursack cared for a neighbor and six elderly family members. Her experiences inspired her to pen, "Minding Our Elders: Caregivers Share Their Personal Stories," a portable support group book for caregivers.

Minding Our Elders

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Thank you for this article. As I read it, I was thinking about my siblings not wanting to help at all with the parents, and also in my mind - me. I still resent it but I need to remind myself that we all had gone thru a dysfunctional childhood. And that majority of them fled the home as soon as they reached adulthood- even if it meant getting pregnant and be forced to marry. And I think of some posts here on this site where others have straightforward been very very very unhelpful with other posters. And I remember how I would recommend my thoughts... It's a very fine line that we need to walk among us caregivers. Very nice reminder...
Amen! I love the term "diverse" to describe our various situations. Another word I would use is "unique"....Every situation is unique. I use the term "peanut gallery" to denote the "sidewalk superintendents". I've noticed that as time goes on, people are becoming more supportive of one another. I have always felt that how I care for my elderly parents has been a private issue between me and God.
OH MY! Did I need to read this article right at this time! I am just so stressed by being 'only' a long distance 'care giver'....more of a care coordinator...that I read here what others are dealing with; have given up of their own lives; and the lack of support so many of them seem to have....and I do have my moments of guilt because I just cannot take my parents into our home, due to a lot of personal issues....but ending with there has never been a great relationship between them and my husband and HE deserves the most consideration, since he is my best friend, my strength and I married him forever! My parents fought, and drank too much and invaded (and still do) our space when they did had to be 'all about them'. My husband tolerates visits, but NO WAY could I take them in! And now, Dad is placed in a memory care unit; mom is home alone with her own early diagnosis and my husband is being worked up for possible Parkinson's. Obviously, if his diagnosis is positive...HE becomes my first priority, and mom #2 because she is still home alone and dad #3 because he is in a safe situation now. It's Mom who my 'fight' about this is with she is narcissistic and the world is all about her. She thinks the only answer to her happiness is 'family' should be there for her; family should make her happy; family should be at her beck and call for all needs, complicated or easy, and the more 'family' is around, the more of a victim she becomes and the more needy she becomes. She basks in the attention, with no regard for how she may be interfering with 'family's other life! And, basically the only 'family' is ME! We have two daughters, both married with their own families and living out state. Both are quick to drop all on their plates an fly in to help me in an emergency, but I refuse to be demanding towards them of needing their help too. They have their own responsibilities and their time will come when they have to help their own parents too. It is SO true, that we all need to remember that we haven't walked in the other people's shoes and don't know their history, their relationships and their current as the article says, we should be supportive even if it's not what we might choose to do ourselves. And I loved the comment, "It's really between me and GOD, what decisions I've made about caring for my parents'. I am going to remember that one and quote it to others as I might need to.