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  • Writer's pictureWendy Rolon

Caregiver Support

How to stay healthy when caring for an aging loved one.

Patricia and Dell’s Story

Patricia was overwhelmed. It had been six months since she stepped into the role of caregiving for her mom, who had congestive heart failure. She and her mom had always been close, and her other siblings did not live nearby, so taking care of mom seemed like the natural thing to do, and Patricia wanted to help, but lately, between the constant worry about money, the panicked hospital visits due to high blood pressure or diabetic scares, the many doctor’s appointments, and Patricia’s mounting insomnia, it had become really hard to carry on. 

Patricia’s mom Dell, was 78. She’d grown up in the South, the youngest of three sisters, and by now,  the only one left living. Dell used to joke that she’d “escaped my fate as a southern belle” by hitchhiking out of her small town in Georgia and making her way to Chicago, where she could “finally take a load off.” For Dell, that newfound freedom involved quite a bit of chain smoking, drinking and eating fast food, all habits she was paying the price for today. 

When Dell arrived in Chicago, all those years ago, she waited tables and went to night school, eventually earning her teaching credential, marrying and becoming a mother. She was proud of her children, Patricia, an accountant, Bobby, a lawyer and Tiffany, a speech pathologist. She called them her “pride and joy,” and her focus on them only increased after her husband Robert died of a heart attack, seven years back. Of the three, only Patricia lived nearby, the other two having remained in California, where they went to college. Dell would mail them little gifts and cards, and doted on her grandchildren as best she could from afar. Patricia had never married or become a mother, her professional life keeping her too busy for much else, till now. 

Patricia cursed under her breath as she crept forward in bumper to bumper traffic on the way to mom’s house. How long would mom be able to live there on her own? Was she remembering to take all her medications? What if she fell? It would take Patricia at least 20 minutes to drive to her. As her car slowed to a halt, Patricia looked down to notice a large oil stain on the front of her rumpled blouse. She really needed to do some laundry. Balanced beside her on the center console were empty take-out containers concealing dried up remnants of burgers and fries that were starting to give off a rank odor. A glance at herself in the rearview mirror gave Patricia a fright.

Thankfully, the doctor’s office was not in the direction of the traffic. Patricia helped her mom get hold of her walker and they made the slow trek through the parking lot. Inside, the staff was polite but perfunctory, as if Dell was just another statistic, an older woman who could have taken better care of herself and was now facing the consequences of a lifetime of bad habits. Patricia had meant to ask the doctor so many questions- Was mom still safe on her own? Was she a candidate for hospice? Were there exercises she should be doing? But once mom’s vitals were taken and she was deemed “stable,” the nurse said they were “free to go.” 

As Patricia helped her mom round the corner with her walker, a part of her wanted to turn around and scream at the staff. “Don’t you see how hard I’m working? Can’t you see how scary this is?” She had such a tight hold on her bag that her knuckles turned white. Dell noticed her daughter’s upset mood. Without looking her in the eye, she said,  “Patty honey, you seem real stressed. Why don’t you call up a girlfriend and go out for cocktails?” Patricia drew in a deep breath and slowly exhaled. In the past months she’d had very little energy for her friends, and was to the point of worrying that they no longer cared about her. She was never great at asking for help and by now she felt too embarrassed to start. Thinking about that made her feel even more stressed, and she fought back the anger that was bubbling inside her. Where the hell were her siblings? Why did mom have to be so cavalier with her health when she was younger? 

This anger was soon taken over by worry. What would she do when things got even more difficult? Her siblings were so busy with their own lives, they didn’t seem to really understand how taxing all this was getting. The few times she’d tried to discuss it with them she was met with resistance and what Patricia thought of as excuses. “It’s Ryan’s last semester before graduating high school.” “Mindy isn’t taking to middle school as well as we’d hoped.” “Looks like my father-in-law might have a drinking problem.” It seemed that everyone else was prioritized above Patricia’s mom. A wave of grief rolled over Patricia as she remembered her father and wished she could talk to him. She pulled herself back into the present and anxiety reminded her that she had been falling behind at work and tax season was almost here. 

Patricia fumbled with her mom’s walker, pinching her finger as she struggled to fold it up. She felt a pang of guilt that she wasn’t doing nearly enough and then the ocean of dread descended, knowing that no matter how well she cared for her mom, there was no cure for what ailed her. Mom was going to die anyway. She hefted the walker, shoved it into the trunk, gritted her teeth, and put on a smile for mom as she slid behind the wheel of the car.

Patricia and Dell’s story is not at all uncommon. Even the most well organized and capable of adults can find themselves feeling steam rolled when caregiving for an aging parent. And no matter the life history of your parents, they will of course eventually die. In our individualist, death denying, youth obsessed culture, elders and their caregivers are often swept up in a bundle of invisibility, dysfunction, overwhelm and isolation. 

If Patricia’s story resonates with you, please know you are not alone and there is help available. 

Caregiving for an aging loved one is taxing. It can also be very rewarding. If you’ve raised children you’ll recall that parenting can sometimes be extremely taxing as well, but likewise worth it. In either instance, getting support makes a big difference. But how do you know when you need to get help? It really depends on you, but there are signs to consider.

Here are some signs that caregiving is becoming unmanageable:

  • You feel tired all the time. 

  • You keep needing to fight back tears.

  • You’re having a hard time sleeping.

  • You’re not taking care of yourself as well as you used to. 

  • You often feel frustrated.

  • Your other relationships are suffering.

  • Your professional life is suffering. 

  • You’re feeling sad and/or angry.

  • You’re feeling anxious.

  • You're forgetting things.

  • You feel numb.

  • You’re wishing someone would notice how hard you’re working.

  • You’re wishing someone would offer you help.

  • You’re feeling guilty, like you’re not capable or not doing enough.

  • You feel panic about what you'll do when your person dies.

Getting the Right Kind of Help

Getting support can help you in many ways, physically, mentally and spiritually. Sometimes as caregivers, we put our wants and needs so far down the to-do list that we actually have a hard time figuring out what would be helpful to us. You might just need to enlist the help of friends and family. Perhaps you’d benefit from a support group. Maybe caregiving is bringing up intense feelings, in which case it might be the right time to connect with a therapist. 

Here are some ideas for getting the help you need while you support an ailing loved one: 

Enlist the help of friends. Sometimes it’s easy to seek support from your friends and neighbors and sometimes it can feel awkward or embarrassing. You might be experiencing a bit of denial about just how hard things have become, which can make caregiving more difficult than it needs to be. Realizing that you need help and then asking for it is the first step toward catching up with the reality of your situation. In our modern culture of individualism, we get a lot of messages around being independent and self reliant, that these are the qualities of a strong person. Needing help is often characterized as being “needy” which in some circles is practically a dirty word. In truth, we are inter-relational creatures, designed to live in groups and support each other through life’s stages, whether that’s childbirth, raising children, finding one’s work in adulthood, caring for each other when we’re sick, celebrating life’s milestones or supporting those who have reached the end of their life. What is strength? I believe strength is the ability to show up to life’s challenging moments with compassion and an open heart. In our modern world of “looking out for number one,” asking for support from our family, friends and community can be a bit of a revolutionary act, taking back our right to support one another through overwhelm, loneliness, silence and suffering. I say, let’s make that the norm.

Caregiver support groups are a good way to meet other caregivers, share stories and find easy support from folks who really get it because they're going through it themselves. Sometimes we reach out to our friends and family and they just don’t know how to respond, or perhaps, for whatever reason, they’re not able. This can cause resentment and a feeling of abandonment. Finding like-minded people who understand first-hand what you’re going through can be invaluable. These are the people who will listen compassionately, share their own stories with you and thereby normalize what you’re going through. For more information on caregiver support groups, check out The Bay Area Caregiver Resource Center, The Institute on Aging, California Caregiver Resource Centers (in California), and Administration for Community Living (national). For an online groups supporting those who care for someone with dementia, check here- We Are HFC. For info on family support after a significant diagnosis, check out Mettle Health.

Schedule self-care. Try not to forget that this is an extraordinary time. The beginning of a life and the end are similar in that both these time periods require extra help, loving kindness and plenty of self-care. Consider ways to soothe your nervous system. Massage, journaling, mindfulness meditation, sensory deprivation tank therapy, walks in nature, and swimming are a few ideas. Think about what works for you and actually schedule these things for yourself. Put them into your calendar as priority items. Taking time out for yourself is like putting your own oxygen mask on in the plane before helping anyone else with their mask. You’ll be way better equipped to provide support if your own base is steady and stable. Also, you’d be surprised at how just a little bit of regularly scheduled self-care can re-energize you.

Set up a rota. When things get intense, it can be enormously helpful to set up a schedule of folks who’d be willing to help out with tasks like doctor appointments, food shopping and prep, laundry, pet care, etc. Friends, family, neighbors and paid helpers can all chip in to provide respite companionship and household support so that you can get the much needed breaks that will keep you healthy.

Talk about it with a professional. Caregiving can bring up lots of different griefs. Core wounds can surface as you work to support an ailing or dying parent. Sometimes you’re supporting a parent you have a wonderful relationship with and other times you find yourself caring for someone you don’t want to be around. Regardless of the exact relationship you have with the person you’re caring for, things can get intense and you deserve to feel supported and witnessed.

Finding a therapist who specializes in grief and knows how to support caregivers can provide you with not only relief but also deep healing that can be transformational. Your therapist can help you create a practical plan for caregiving and also explore the ways your grief is showing up in the caregiving process. This exploration can be healing for you individually and also deepen the relationship between you and the person you’re caring for. 

How do you know if therapy would be a benefit to you? Here are some of the things a therapist can help with: 

  • Explore shifting roles between you and the person you’re caring for, especially if it’s a parent

  • Learn to identify and attend to your own needs while you’re simultaneously taking care of someone else

  • Learn how to set boundaries for sustainable care

  • Learn how to establish self-care routines for ongoing stamina 

  • Practice being vulnerable and asking for help

  • Teach others how you’d like to be appreciated

  • Explore how to relax into what’s happening instead of adding to the suffering by fighting it 

  • Learn how to communicate with friends and family and to cope with those who don’t get it and won’t help

  • Learn how to support yourself if you’re feeling guilt for not doing enough

  • Explore how to achieve balance in this intense time

  • Explore the ways you can be a boon companion to the person you’re caring for

  • Explore how to acknowledge any anticipatory grief you may feel around your own expectations, sacrifices and contemplation of the death of the person you’re supporting.

  • Help with gently exploring what your life will be like after your loved one dies

If you’re a caregiver and would like to talk more about counseling, please reach out to me. I’m here to answer any questions you may have. ❧

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