Caregiving can be overwhelming and isolating. Here are simple ways to offer support.
Last posted by Brenda Avadian | health.usnews.com
Family and friends are supposed to be our closest allies. We rely on them for support and enjoy celebrating life’s joys with them. But there are two times when we feel alone. One is at the end of our lives, because people stop visiting; the other is when we become a caregiver.
There are moments when a caregiver wants to shout, “You just don’t get it!”
Twenty years ago, with myopic vision, my husband and I agreed to care for my father after he was diagnosed with dementia. We moved him from his Wisconsin home of 45 years into our California home, and then tried to involve as many of our family, friends, business colleagues and neighbors as possible.
What a pleasure to observe our business partners welcoming my father as he enjoyed life’s simple pleasures, like a backyard swing. We often held business meetings at someone’s home and he delighted in their attentions as they relished in his innocence and kind-hearted comments.
After notifying our neighbors that my father wandered – he left the house several times without our noticing – we were thankful the two times an observant neighbor called to say she spotted him walking past her home in our cul-de-sac.
As the weeks passed and my father’s care needs increased, our circle of supporters dwindled to just a handful. When my father could no longer interact in a way that made sense, people felt uneasy, not knowing what to do. Increasingly, I felt alone.
Meanwhile, an internal tug-of-war raged on. What do I do about this person who raised me, disciplined me, instilled in me a foundation of values to last a lifetime? Why can’t he continue to make his own decisions? I have to make medical decisions for my father. What if I’m wrong? I discovered that caring for dependent human being requires a totally different skillset than those I drew on to care for our cats.
As his dementia progressed into Alzheimer’s, I had to keep an eye on him all the time. I had to listen closely to what he said in public places. In his own world, he’d say inappropriate things. I even had to watch how he behaved. At a birthday party, he began unzipping his pants. He even tried to flirt with an underage but mature-looking teen.
Dementia destroys brain cells. Judgment disappears and one’s youthful years come to the forefront; in my father’s case, it was the years he lived as a handsome eligible bachelor.
Today, thanks to more people with diseases and illnesses speaking publicly, we’re more aware of what to expect.
Still, it’s hard to wrap your mind around someone appearing so well-put together and seemingly lucid one moment and then totally disoriented, forgetful and even helpless, the next.
How Will I Survive As A Caregiver?
There are not many life experiences as isolating as caregiving. To preserve sanity, one needs the company of people who walk the same path. The following are some ways family caregivers connect with others in order to survive.
1. Caregiver support groups. At first, I resisted the idea of attending support group, but we all have our breaking point. Not only did I learn things I didn’t even know to ask about, I departed the meeting feeling heartened after being among people who truly understood what I was going through.
2. Caregiver conferences. These offer a welcome change-of-pace filled with information, fun and opportunities to meet new people, while discovering resources in the community. Some conference coordinators even build in respite care so you can bring a loved one who will be engaged in separate activities while you participate in the conference.
4. Monthly luncheons or hosted holidays. Caregivers find out soon enough that fellow support group members become family. A care group I attended decided to meet once a month for lunch. These gatherings in a new setting were welcome while our loved ones participated in adult day care activities or lived in residential care. Because I was one of the younger caregivers and had more energy, I decided to host a few holidays and birthdays at our home where we shared laughs, learned about different family traditions and created memories.
Spending time with fellow caregivers helped preserve my sanity and gave me the strength to go on.
What Not to Say to a Caregiver
As fulfilling as it is to spend time with people who understand, we exist in a larger society and will run into well-meaning family, friends, colleagues and neighbors who say the wrong things, such as these four biggies.
1. “Let me know if you need anything.” A caregiver will never let you know. Life is too overwhelming, with a thousand needs, which are a blur when you offer to help. Instead, visit and observe. If you see the caregiver pouring a glass of whole milk from a half-gallon carton, keep this in mind the next time you go shopping. If you live close by, let the caregiver know you’re going shopping and ask if you can drop off a half-gallon carton of whole milk. Don’t bring a plastic gallon container of skim milk thinking it’s healthier and twice as much. Bringing exactly what the caregiver uses maintains the routine and reduces stress.
3. “Why do you do that when you can do this?” Instead of judging the caregiver, try to understand the reasons behind the actions. For example, don’t ask, “Why do you watch DVDs when you can have a wide selection of on-demand streaming video?” Instead, try to understand with an open-ended question or two.
“I see you have a pile of DVDs. Which one did you watch, last?” You might learn that the caregiver hasn’t been able to watch any DVDs in a while and that the care recipient is frustrated by not being able to operate the DVD or TV remote. Curious, you take a quick peek and find that the cable connecting the TV to the DVD player is disconnected. This simple fix could mean the world to the caregiver who used to take a little respite while her husband watched TV, for example.
4. “You’re a saint.” Years ago, while caring for my father, I noticed some caregivers’ limits went far beyond mine, bordering on sainthood. I’d pay them a compliment: “You’re a saint.” They didn’t respond the way I expected. I still hear others say it and one day I asked and a brave caregiver explained, “I’m doing all I can to care for him. I wonder if I’ll survive. When I hear that I’m a saint, it puts pressure on me to try harder.” YIKES. I didn’t see it that way.Caregivers give until they can’t give any more and no one wants to add any more pressure. Instead of a general comment, I began sharing what I observed. “Wow, day after day, you care for [care recipient], sometimes 24 hours a day. How do you feel?” Depending on whether the caregiver is joyful or beat down, I may ask, “How do you keep up?” or “What’s the hardest part?”
It’s the little things that add up and overwhelm. Yet, helping with the small details will only take a few minutes out of your day or a couple of hours each month and be greatly appreciated by the stressed-out, overwhelmed caregiver.