Barry J. Jacobs knows something about caregiving. Not only does he regularly work with caregivers as a clinical psychologist, he also cared for his mother after she became ill with dementia and osteoarthritis.
“I didn’t enjoy it,” he admits. “But on balance, I’m glad to have done it. I think I did the right thing, and I got my mother into a much better place, living with a level of comfort that she didn’t have otherwise.”
Living with those two co-existing realities — that caregiving can be incredibly hard, but that the right mindset can make it bearable, and even gratifying — is the premise of Jacobs’ new book, AARP Meditations for Caregivers: Practical, Emotional and Spiritual Support for You and Your Family, published earlier this week. The easily digestible volume consists of 152 brief stories from real families who have experienced caregiving challenges.
Jacobs, who wrote the book with his wife, fellow psychologist Julia L. Mayer, recently spoke with Next Avenue about it. Our interview, edited for length, is followed by an excerpt from the book:
Next Avenue: What did you hope to accomplish with the book?
Barry J. Jacobs: In my opinion, a lot of the writing, movies and publicity about family caregiving in this country has been negative. There are a lot of stories about caregivers at high risk for burnout and even their own physical health problems.
People who feel like they have no choice have a much greater tendency to be depressed.
— Barry J. Jacobs, author of AARP Meditations for Caregivers
I think there is a portion of the caregiving population that’s at risk for those things. But often the advocacy organizations for caregivers have done such a good job of publicizing some of these risks in order to attract public attention that it’s created this perception that caregiving is this unremittingly horrid and negative endeavor. And I don’t think that’s true for the majority of caregivers.
As a country, as a society, we need people to step up and care for their loved ones. I really do believe that caregiving can be a very positive experience and a real growth experience in people’s lives, and I want this book to demonstrate that.
None of these stories are about people who are having cakewalks. It’s hard. But the idea is that people find ways of deriving greater meaning and greater family closeness [from caregiving]. What I want from this book is the same thing I want clinically when I work with family caregivers: I want at the end of the day when people are finished caregiving, or finished reading this book, that they can look at what they’ve done and say, ‘I’ve done a pretty good job,’ or ‘I’ve done the best I can do and I’m glad to have done it.’
You say that caregivers’ perception of their work is critical to how they experience it. Can you elaborate?
I think that the mindset that people approach caregiving with matters a lot. If they are braced for terrible things happening, as difficulties arise, they’re going to react strongly. On the other hand, if they approach caregiving with the idea that this is good, valuable work — work that they may have very strong moral or spiritual feelings about — they will better endure whatever hardships come up. It’s not just perception, but one’s entire stance.
I don’t want to whitewash the difficulties of caregiving. It’s hard. I know firsthand how hard it can be. But I also don’t want people to feel that it’s a completely dreadful experience that they want to avoid.
How common is it for caregivers to feel that they are not being recognized by either the care recipient or their siblings?
It’s a big problem. We all want acknowledgment when we’re making big sacrifices on behalf of someone. We want the person we’re caring for to acknowledge what we’re doing and hopefully thank us. It’s one of the most difficult parts of caring for someone with dementia; they’re often unaware that they’re receiving as much help as they are, particularly in the latter stages of the disease. Or they lose the capacity for empathy, so they can’t put themselves in the caregiver’s shoes and think about what they’re going through.
There are also lots of situations where the care recipient feels so diminished by having to accept help that they’re actually antagonistic toward the caregiver. Rather than acknowledge what the caregiver is doing, they grudgingly accept it, but resentfully — then lash out at the caregiver at every opportunity.
I went through this with my mother for years, where I would do things for her because she needed them done, and she didn’t want to admit that she needed them done. Then she wouldn’t thank me; mainly she argued with me and criticized me, and that made me livid. That’s a very common dynamic.
Also common is the primary caregiver wanting some kind of acknowledgment from siblings or other family members. Because if it’s a case of caring for an aging parent, one person may be taking on the lion’s share of the work, but the other siblings are all benefiting from it because it’s their parent who’s being well cared for. What ends up happening is that those sibling relationships are sometimes irreparably harmed.
What can the caregiver do in that situation, when he or she is not hearing “thanks?”
It’s very hard. Part of it is acceptance that the person they’re caring for may no longer have the capability of providing acknowledgment, for instance, or maybe for their own emotional reasons, is unable to provide that acknowledgment.
I also think that the caregiver may just have to accept that their siblings don’t want to have to deal with the situation and don’t want to feel guilty for what they’re not doing; they’d rather just minimize the caregiver’s contribution, rather than appreciate it for what it is.
But then caregivers need to get acknowledgment; maybe [it can come] from other caregivers. That’s one of the great benefits of caregiver support programs is that people there know what it is to walk the walk. They can acknowledge one another even if other people who are not caregivers can’t quite understand.
Ultimately, caregivers have to acknowledge and pat themselves on the back because they know that whatever it is they’re doing, they’ve chosen to do it for a certain set of reasons. It may be because they think it’s the right thing to do, or they think they’re doing God’s work in this world or they think that the person they’re caring for is someone who cared well for them and they want to give back to that person.
In my clinical practice, I often do sibling meetings without a parent present. Fortunately for some sibling groups, they come out of caregiving with stronger relationships and greater appreciation for one another as mature and caring adults than they ever had before.
Do you see a difference in your practice between caregivers who take a more negative view of their work and those who are more positive?
Yes. I see people who come in and tell me that they feel they are trapped. They feel they have no choice but to do what they’re doing, and that this is a kind of unremitting hell for them. Those are very depressed people.
That’s a very different situation from someone who might have some arduous caregiving to do but has a basic sense that what they’re doing is the right thing, that they’re making a positive difference and that they can endure. They’re consciously aware that they have made the choice to do this. They’ve said, ‘Dad is hurting at this point in his life, I want to be here for him.’
It goes back to the old research from years ago about learned helplessness: people who feel like they have no choice have a much greater tendency to be depressed. One of the main things I do is stress to people that even when they don’t think they have a choice they’re actually exercising choice. When they look at the choices they’ve made, and even more importantly why they’re made them, that’s when people start to realize the values underlying their caregiving.
What is the difference between those two groups of people?
It’s complicated. It depends on how they grew up. If you’ve had a good, loving relationship with parents who gave you all sorts of advantages in life, you may feel more inclined when the time came to step up and care for them. Giving back is a really powerful motivator for folks, especially if those folks saw their own parents caring for their grandparents.
Folks who had very poor relationships with an aging parent when the parent was younger — who may have felt that the parent was abusive or neglectful or the parent was an alcoholic — it’s much harder to make sacrifices on behalf of that parent because they feel like they were being kind of newly victimized by the parent.
But I have also met with many caregivers who see in the caregiving relationship the opportunity to have a different relationship with the parent. And at least some of the time I’ve seen those folks be successful, which is very gratifying for them at the end of their parents’ life.
The following passage is excerpted from AARP Meditations for Caregivers: Practical, Emotional, and Spiritual Support for You and Your Family by Barry J. Jacobs, PsyD and Julia L. Mayer, PsyD. Copyright ©2016. Available from Da Capo Lifelong Books, an imprint of Perseus Books, LLC, a subsidiary of Hachette Book Group, Inc.
Now that Olivia’s father was dying and she was sitting by his side, she couldn’t help thinking about what kind of life he had led.
It had taken her years of therapy to admit that he’d been an alcoholic and to recognize how that had affected her. At this point, he’d had dementia for some years and was in the final stages of liver disease. He was no longer the sometimes unpredictable, unreliable, and frightening drunken man of her childhood. He was an old man in a hospital bed receiving hospice care.
Despite a slew of bad memories, Olivia found herself focusing on the good ones. Her father had been so much fun at times. He’d breeze into their childhood home and suddenly there would be energy, joy, and activity. At those times, he would be interested in his three children and what each was doing. His encouragement made them feel as if they could do anything. He was a wonderful dad on those occasions.
Olivia could see what her father’s addiction had done to him and to all his important relationships. She felt deeply sad about that. Yet, as she looked at him wasting away, what she ultimately felt was her deep love for him and a big wave of compassion. He had done his best. He had loved her.
When we choose love, compassion, and forgiveness, we can let go of pain and bring a sense of peace to our lives.