More Than a Hug – How Caregiver Peers Can Support Each Other
Friends arrive with extra meals or share a coffee when you meet them for a stolen hour, somewhere close to home in case of another emergency, another fall. You part with a hug and the friend offers words of encouragement. “Hang in there.” You hope you can.
The next long nights and days of managing caregiving on top of the rest of life’s responsibilities go by in a blur. You are hanging on, but barely. While friends are essential, it turns out that other primary caregivers who share your emotional and physical roller coaster ride may offer the best source of help. And even on your most frazzled days, you may be a source of help to them as well.
If you need more than a hug, read on.
Asking for help is not easy for family caregivers (or many of us, really). When we understand that we don’t have to be the expert in this thing called “family caregiving” we can transform our role as a family caregiver.
Taking care of family is generally ripe with guilt. Guilt of not doing enough, not spending enough time, not having the right tools, not being able to juggle all the many hats one wears. When the weight of playing this role becomes all consuming, the family caregiver isolates themselves—turning down coffee invitations, date nights and workouts at the gym. “There’s no time,” the dutiful family caregiver cries. But the moment you surrender the notion of being “The One” to handle it all and ask for help, you are becoming a less stressed-out caregiver.
We are not trained to care for our parents. We don’t know what to do when the people who were the ones in charge become the ones who need care. And while many of us may feel strongly that it is our duty to care for them, that doesn’t mean we have the knowledge or heart to handle the myriad of roles caregiving demands.
Knowledge is one thing: We can learn about a disease or how to set up a medication box. But taming our emotions requires a strong support team. How do we deal with caring for a father who may have abused us or simply been absent in our lives? Or a mother who was an alcoholic and now needs our care? Or how do we convince our siblings that they need to help, too?
That’s the worst-case scenario. It may also be that you love your parents and get along famously with your siblings, but still feel overwhelmed and underprepared to step up to the role of caring for Mom or Dad.
Today there are more people over 65 than teenagers and a higher number of people over 85 than under five years old (Lamm & Lamm 2002). Demographics don’t lie: We are becoming an older nation. It shouldn’t be news to anyone, but because we strive to put off, ignore or hide aging, we tend to also turn a blind eye to the aging around (and within) us. Because of this, we are “unexpected” caregivers. We either say our parents are “just aging,” or we blame all their issues on aging. Aging, in and of itself, is not the problem; rather, it’s the diseases that can accompany us into older age that cause loved ones to need care.
Americans, like many nations, will be forced to depend on family, friends and other potential caregivers. In 1990 there were 11 potential caregivers for each person needing care. In 2050 that ratio will be four to one (“Chronic Care in America,” Journal of the American Medical Association, Dec. 15, 1999, Volume 218, no. 23).
This trend will lead to the need of informal caregiving networks, such as churches and local communities, to offer information, support and care to those providing care to aging adults. Instead of the organizations leading the support, however, I encourage caregivers to consider hosting peer-to-peer caregiver support groups. Peer-to-peer support groups provide so much more than other caregiver resources. Other caregivers have valuable insights, can empathize and let us all know that we are not alone in our struggles. A couple years ago, the Lutheran Endowment for the Elderly at ELCA Foundation provided funds to Northfield Retirement Community in Minnesota to help start some peer-to-peer support groups. Several groups ran simultaneously and we were able to gain valuable insights and evaluation from the groups. But worth their weight in gold were the comments from members:
“My dad is widowed and lives by himself,” said one participant. “The group is a great way to share my concerns and fears as I encounter different issues in caring for him.”
“Other caregivers have valuable insights,” said another. “They share practical information about a variety of subjects, including transportation, health care and taking care of myself. These people help me to maintain equilibrium at all times. We all share many issues and feelings. We can empathize with each other. It’s a safe place to express oneself, even to cry.”
Following the format these groups used, we were able to develop an easily replicable peer-to-peer caregiver support group program. Any caregiver or past caregiver is a candidate for starting a peer-to-peer group. Groups can be set up at colleges, hospitals, senior centers, senior housing, church and community groups, workplaces or even at an individual’s home. Group members are each given a turn to check-in and express how they’re feeling in relation to their caregiving, without interruption or feedback. They can also pass. A discussion topic is provided to facilitate informal sharing. All information that is shared stays within the group, creating a sacred space. If you’re feeling alone, I encourage you to consider starting a peer-to-peer group. Chances are you won’t have to look far to find someone who knows how it feels to be in your shoes.
How to beat the Not-Enoughs
Me and Grandma Gladys, ca 1989
“When will I see you again?” my Grandma Gladys would often ask as I was getting ready to leave. Instead of giving her a time and date I would answer with, “Well you know I’m awfully busy at college.” Part of that answer came out of frustration that my current visit didn’t seem to count. The other part was sheer ego. I wanted her to know that I was important and had a life. I rarely felt good after a visit that ended like that.
Was I doing enough? Could I have visited her more? I loved my grandma dearly, but had a lot of guilt about not doing “enough” for her. It’s hard to say what is enough and feeling of guilt only fuel your uncertainty. The third letter in my S.A.N.E. Method™—N is for Not Guilty. “Not Enough” thinking is guilt trying to get the best of you. Here are a few things I do when I’m feeling guilty:
1. Put yourself in a rational state of mind. (You may have to do math problems to move your brain from an emotional to a logical place. Try it. It works!)
2. In that logical state, write down all that you do for your loved one. (Make no judgments as you write.)
3. Stay in that unemotional place and look at your list.
4. Ask yourself, “Could I do more? What would I do? How would it affect my life?”
5. If it makes sense to do more, add in the time. If it doesn’t, look at your list again, but this time with a sense of gratitude for the time and energy you give.
Guilt will be a constant companion on our journeys as a caregiver, but you’re in control, even though you may not always feel that way; I get it. Sometimes doing less is better for both you and your loved one.
How to Help your Parents Engage in Life
I don’t usually subscribe to “busyness for busyness sake,” but at times there is value in simply getting out and doing something—anything. This won’t sustain me in the long run, but it works to move me through to meaningful activities.
Engaging in a lifelong hobby
Family caregivers can easily fall into variations of a similar trap: thinking that the appearance of their parents being busy trumps the actuality of being involved in an activity that’s engaging and meaningful to them, or thinking that — like some impromptu cruise directors on the Good Ship Getting Older — it’s somehow now up to the children to constantly be planning activities for mom and dad.
Don’t get me wrong. There’s plenty of value, mental and physical, in spending time with your parents to help them stay active and busy. But I believe it’s the “slow times” and the hours when your folks are on their own, pursuing their own interests in their own ways, that provide the greatest payoffs for their emotional and bodily health.
Just as is true with yourself, the goal is to help your parents get into things they will find enjoyable over the longer term — including activities they might do solo and under their own direction — because those are the ones they’ll do regularly and sustain by themselves.
If you notice your parents isolating themselves more and more, try opening a conversation about what brings meaning to their lives. And ask them how you can support them. Your support — whether is be simply listening to them or assisting them with ideas — can be one of the single most important things you do for your parents.
The shame that comes with Alzheimer’s disease and other dementias
Shame is described as a painful feeling that we are somehow flawed and unworthy of being loved. It can be triggered by our own unhealthy mind chatter or when someone says something nasty to us, and we take it in as truth. 
We attach shame to situations and diseases, as if it was our inadequacy, or wrong doing, that caused these events to come about. We believe that we failed to “keep ourselves healthy,” or “do the right thing,” and so in turn, so “made” ourselves sick.
Lori La Bey of Alzheimer’s Speaks and I had a conversation about the shame that comes in the caregiving journey when one has Alzheimer’s disease or another disease that causes dementia.
Please listen and share. The more we talk about this, the less power it has in our minds and in our hearts.
The Boiling Frog and the Caregiver
I think most of us have heard about the fable of the boiling frog: If you drop a live frog into boiling water it will jump out. But placing a frog into tepid water and slowly increasing the water temperature, and the frog perceives no danger and is slowly cooked to death.
This is often a fitting metaphor of what happens as we start down the caregiving path. We can’t imagine putting an adult diaper on our husband, but incontinence creeps up and soon we find ourselves searching YouTube videos on how to change adult depends. Incrementally, the barriers are being broken down, and what we once said, “I draw the line at,” we find ourselves doing. We never dream we’d be cutting up our loved one’s food, let alone feeding them.
The truth is, much like the frog in the fable, these changes don’t all-of-a-sudden happen. Over time, we adapt to many changes and we enter into a series of “new normals.” What once was unthinkable has now become “just how it is.”
At the same time we are adjusting to the new normal, our stress levels slowly increase. We may be eating more often and less healthy food, exercising less in favor of another hour of sitting in front of the tube. We stop dining out because it’s embarrassing or just too difficult. We don’t invite friends to visit and we stop reaching out. Isolation creeps in and we just can’t put a finger on why we’re feeling gloomy.
I wish I had a magic pill I could give to the thousands of family caregivers who are beating themselves up because they feel they need to handle all the care on their own.
This pill would do two things: First, it would engage the left-side or logical side of your brain, sending you the clear message that you are doing everything you can, to the best of your abilities.
The second thing this pill would do is ignite your inner self-worth and trigger the message that self-care is vitally important. How can you be prepared for the emotional toll and strain of witnessing your loved one fade?
Unfortunately, I can’t offer a magic pill, only my encouragement to be both gentle with yourself and to ask for help. You are The Unexpected Caregiver. Learn all that you can, lean on others, and understand that small changes will creep up on you. Be prepared to have someone close to you point out that the time has come for you to seek professional help. Don’t be the frog who unknowingly drowns because it got used to the heat.
College and Caregiver: When do they come together?
Five college students filled my kitchen with laughter and conversation over a leisurely summer breakfast. Only one of them was non-American, the other four were studying at the same college in Minnesota. I asked each of them what they would do if one, or both, of their parents needed care. The non-American, a lovely Russian woman who happens to also be an only child, said she would absolutely live with and care for her parents; “That’s how it’s done and I’m very close to them.” The other four were less certain: Would they have their parents move in with them, or find some type of senior housing? “We haven’t thought of this.” Why would they? They’re 20-something and their parents are “still young.”
I’ve been presenting on the topic of family caregiving and aging for nearly 30 years and still, family caregivers wonder why “no one” is talking about it.
The press reports on the critical need to prepare more people to be caregivers, but the subject of providing care to an elderly loved one remains a subject swept under the carpet, or generally ignored.
Growing older is not a sexy subject and hence, doesn’t get the press it needs. Yet aging happens to all of us. If you don’t like it and try to avoid everything about it, how will you give care to an older parent?
You have to love your own aging self in order to be loving towards an older adult. It’s way past time to think about caregiving and aging.
Maybe we need to introduce aging and family caregiving into our public school system. Without some major change, I fear the impending silver tsunami will drown us all.