What Caregivers Really Want Their Friends to Know

By Anne Tumlinson | Caregiving

Remember when your first friends entered parenthood and you thought they seemed so boring and self-absorbed.

And, then… you had a baby and you got it?

Well, that’s happening again. Only this time, it’s because some of us have started taking care of our aging parents. And others are wondering what happened to their fun friends.

The truth is, caring for aging parents is an experience that’s hard to relate to unless you’re going through it. None of us can easily imagine just what life is like with a parent who needs help doing the simplest things like eating, getting in and out of bed or god forbid, going to the bathroom.

And yet, this life experience is exactly what an increasing number of gen-xers and baby-boomers are facing as their parents — get older and frailer. We’re entering a time when about half of the over-age-65 population will need help doing many of life’s daily tasks. And about 15 percent of them will need that help for five or more years. This is help that’s overwhelmingly provided exclusively by family members; and most often by women.

But too many times, daughters feel all alone in their parental caregiving. Not surprisingly, their friends struggle to understand what’s happening. And daughters struggle to find the time it takes to maintain friendships. The end result is that too many women become increasingly isolated and cut off from the very emotional support they most need.

This is just unacceptable. We have to figure out how to do things differently. We NEED to keep our friendships strong. Caregivers, you need to be hyper-vigilant about the risk of isolation and disconnection with friends. And friends, you have to fight to stay empathetic and encouraging for what is our most precious resource – our friendships.

“Lots of people want to ride with you in the limo, but what you want is someone who will take the bus with you when the limo breaks down.” – Oprah Winfrey

And, so, that’s why I’m creating the official, albeit informal, code of conduct for daughterhood friendships…..to help guide our friends through the challenge of hanging in there with us. And, to keep us from pushing them away — we all have a responsibility here so let’s get to it.

Here are the essential dos and don’ts for friends of caregivers…

Don’t judge.

We need to 100% avoid the urge to judge. Judging is always good for a cheap and easy self-esteem boost but it’s poisonous to friendship. So, when your friend says she has to put her parent in a facility, avoid the urge to criticize at all costs. If possible, don’t even do it in your own head. Because unless you’ve chased down a person with Alzheimer’s wandering the halls at night, changed an adult diaper or given up your job to care for a parent, you really can’t evaluate your friend’s decision to seek more help. Can you?

Especially don’t judge feelings.

Particularly negative ones. In caregiving, they come with the territory. One of the most commented on articles that I’ve shared on Facebook is a HuffPost article by Ann Brenoff entitled, “No, Caregiving is Not Rewarding. It Sucks.” Based on comments, it seems this is a sentiment that is shared by many but that also causes a great deal of shame. The bottom line is — we may be doing amazing things for our parents BUT ALSO hating every minute of it. These are not mutually exclusive.

Duty does not require joy.

Don’t avoid the caregiving topic.

This topic is still too much of a taboo in our society. If you know someone who is caregiving, ask her about it. If it’s you, don’t hide it — by bringing it out into the open, you’ll find a surprising number of “me toos”, which are always so healing.

“Friendship is born at the moment when one person says to another, `What you too? I thought I was the only one.” – C.S. Lewis

My friend Lindsay Jurist-Rosner – in her 30s now – has been taking care of her mother since she was 9. As evidence that caregiving will produce finely honed executive skills —- Lindsay now runs a company, Wellthy, which helps families like hers find and coordinate care.

Her experience has been that everybody assumes she doesn’t want to talk about her situation because it’s so tough. But, she says, “It’s exactly the opposite. I always need and want to share…it’s just that I feel like I’m burdening friends if they don’t ask. Friends always say to me, ‘you don’t have to talk about it if you don’t want to.’ But, I need to and want to talk about it. I just don’t because I don’t want to be a downer.”

Don’t take it personally.

It’s really hard to be a good friend when you’re caring for an aging parent. Your friend may forget your birthday, cancel plans at the last minute, or go silent for months. She may forget to ask you how you’re doing, or complain nonstop about her situation. This isn’t much fun but it has nothing to do with how she feels about you.

Stay connected.

There are about 40 million people out there taking care of a loved one and yet they all feel like they’re completely alone. We’ve got a long way to go before every community has spaces designed specifically to bring older adults and their caregivers together the way schools and playgrounds bring parents together. But, sadly it won’t be that long until practically every family is in this situation — In fact, that day is coming sooner than most of us realize.

In the meantime, the lack of natural connecting points in the community make it all to easy to become isolated. Friends – you may be feeling shut out but it’s SO important to keep the connections flowing on both sides: keep texting, keep calling and dropping by, keep caring. You don’t have to commit to a long night out – just a quick hug to remind your friend that she isn’t alone.

Ask specific questions.

According to Lindsay, if your friend is caregiving, some good questions to ask are: “What’s the latest with your Mom? How has she been doing lately?” Lindsay explained to me that when friends ask the more open-ended question “How’s your mom?” it just reminds her that her mom is doing badly. Chances are that the news is not good so adding a “lately” to the question about how mom is doing allows the person to answer about what’s new or different, good or bad.

And, while you’re at it, ask your friend how SHE’S doing. She’ll get a lot of questions about her sick loved one but she’s less likely to get questions about how she’s holding up and what she needs. With these questions, you can take care of your friend while she’s taking care of her loved one.

Discourage perfectionism.

Let’s face it: for most of us, our primary emotion is guilt. That’s especially true when we’re dealing with our parents because very frail people have A LOT of needs…. And as caregivers, we have a tendency to feel like we’re supposed to meet all their needs, all the time.

Our dilemma is that the very same person whose approval we’ve been seeking our whole life is now asking for more than we can possibly give.

This is why it’s a good rule of friendship to always remind each other that we can’t do the impossible. We can’t fix the frailties of our parents’ body and mind. We can, however, be each other’s touchstone through it all.

Recognize the effects of grief.

If your friend’s parent has dementia or Alzheimer’s, she’s going to be feeling an especially complicated grief. Understand that she’s living in a twilight zone where her parent is here but not here. This isn’t the kind of grief that she’ll get over. It’s the kind that’ll soak into her skin and hang on for the long haul.

In the face of grief like this, Pauline Boss, author of Loving Someone with Dementia: How to Find Hope While Coping with Stress and Grief, says that the best response is “I’m so sorry.” That’s it.

Ok Daughters! Of course you realize that this is not all our friends’ responsibility. There are some rules of the road for us too…

Find mental space for your friends.

This caregiving experience is so all-consuming that it can take over all your headspace before you realize it.

It’s a well-known fact that people who are suffering become very self-centered. When I was going through my divorce, I was a nightmare to be around. I found that my bitterness was very toxic to other people. Even the very best of friends, the most patient of souls has her limit.

So, if you are the caregiver, be aware of this dynamic and make a conscious effort to be emotionally present for your friends.

Finding a place to connect with people who are going through the same thing can make this SO much easier and, at the same time, take some of the burden off your friends. We’ve set up Daughterhood Circles for that very purpose. Daughterhood Circles are small groups that get together regularly to hang out and help each other through this experience. Friends helping friends.

Having this outlet can help you avoid overtaxing your other friendships.

Set Boundaries.

Among the women I know, there’s an epidemic of “can’t say no.” But, if you’re going to have room for your friends, you have to be religious about setting boundaries. Saying no to a parent who wants to move in or to unreasonable requests from siblings or paid caregivers. Bowing out of community obligations that are just too much – all these things can help you keep your sanity and your energy intact for your closest friends.

Read: 5 Lessons in Setting Boundaries

Don’t forget to set boundaries with your friends also. Paradoxically, good boundaries make for good friends. If you can say no gracefully and without defensiveness, you’ll avoid feeling bitter and angry when your friends unwittingly ask the impossible.

Ask for Help.

The flip side of setting boundaries is asking for help. It’s 100% okay to do it. Your friends want to help but they don’t know how. Finding small things they can do will make them feel more connected to you, create empathy and give you a hand.

For All of Us; Caregivers and Friends…

Let’s Hold Space for Each Other.

So much of friendship depends on being present for each other. In her May 2016 article on upliftconnect.com “What it Really Means to Hold Space for Someone” Heather Plett describes this so beautifully when she says that holding space for someone, “means that we are willing to walk alongside another person in whatever journey they’re on without judging them, making them feel inadequate, trying to fix them, or trying to impact the outcome. When we hold space for other people, we open our hearts, offer unconditional support, and let go of judgement and control.”

This is the greatest gift we can give each other. So, in the famous words of the great Beyonce — “Okay ladies, now let’s get in formation.”