Caregiving can be challenging, exhausting and emotionally draining. It can generate anger, guilt, and grief. Sometimes you’re glad to do it, sometimes you want to quit.
“Sometimes I feel pity, and five minutes later I’m angry,” says Stella Langford, 85, of Tinley Park, Ill. Her husband of 40 years, Bruce, has advanced dementia, but still lives at home – as she wishes, despite the challenges.
“In one day I’ll go through many emotions. It’s like dealing with children. It’s exactly the same,” she adds. “It definitely tires you out. I resent that my body has run down. I can’t do what I used to do. That bothers me.”
One aspect of the constant care that really gets to her is the lack of “solitude.” She can’t sit down with a cup of tea and just enjoy the quiet because there’s constant action, some of it bizarre. She’s cried – a lot.
Langford’s situation isn’t unusual for a caretaker. The range of emotions is similar to that described by Elizabeth Kubler-Ross in dealing with grief. It’s not a smooth transition from one to the other until you come out the other side. It’s more like a roulette wheel with many possible outcomes on any given day.
One constant is that “whatever your situation, it is important to remember that you, too, are important,” says the Family Caregiver Alliance (FCA). “All of your emotions, good and bad, about caregiving are not only allowed, but valid and important.”
The “seven deadly emotions” of caregiving are guilt, resentment, anger, worry, loneliness, grief, and defensiveness, the FCA says. They arise from trying to do it all, felling slights from others who don’t do enough, unfair criticism, lack of sleep, the “what-ifs,” loss of time with friends, losses of ability (as in dementia), and bristling at suggestions of “better” approaches.
The first thing you have to realize, Langford suggests, is that you can’t juggle all the balls successfully all the time. You’ll make mistakes; you might fall short on one goal over the course of one day. You have to realize that you’re doing your best — and that you deserve time too.
“One of the frequently unknown roles a new caregiver must take on is the one in which they commit to becoming a lifelong learner,” caregiving expert Elayne Forgie writes in the Huffingon Post.
Although she’s speaking specifically in the context of being an Alzheimer’s disease caregiver, her advice applies universally to anyone in a caregiving role. You are constantly learning how to “manage and cope with the many emotions” you will feel on a journey that is anything but linear.
The key is to remain open-minded. Besides learning as much as you can, seek out other caregivers to give and get support. That can go a long way toward alleviating the loneliness and isolation you may feel.
You should encourage you’re loved one’s independence to the extent possible. You don’t have to do everything – and they may not want you to do everything. Today there are enabling tools and technologies that allow a person who needs help remain more independent.
Know your limits. “Be realistic about how much of your time and yourself you can give. Set clear limits, and communicate those limits to doctors, family members, and other people involved,” says HelpGuide.org.
Get professional therapy if you get stuck on specific aspects of caretaking or have recurring negative feelings that have you in a rut. Sometimes all it takes is an objective listener who understands when and how to give advice.
Perhaps most importantly, accept all those feeling and don’t beat yourself up. These are difficult emotions to handle, so give yourself the right to feel them and accept them. It’s okay to feel angry sometimes. Sometimes it’s even helpful.
“You can’t look back much,” Langford adds. “I’ve found that a lot of (caregivers) do that. You have to look forward and stay in the present. As they say, one day at a time. I’ve made a lot of friends, and many are pretty darned amazing. It’s not a time to lay down and die.”
April 12, 2016
Janet O’Dell, RN