I recently had the privilege of chatting with Diana Denholm, PhD, LMHC, an experienced psychotherapist, and author of The Caregiving Wife’s Handbook. I learned so much from our conversation and found many applications even though I’m not (yet) a caregiving wife. Thanks, Diana, for sharing your insights with our SeniorsforLiving.com readers!
Caregivers on the Edge
“Be prepared. Don’t be the newsmaker,” advises Denholm.
Paul Gilkey was caring for his wife, Darlene, who was dying of cancer, when he reached his breaking point and found himself as a “caregiver on the edge,” as Denholm calls it. In this dangerous place where many spousal caregivers find themselves, Gilkey shot and killed his sisters-in-law, his son, and himself after they suggested he prepare something else (tea and toast) for Darlene to eat besides the peeled orange he presented.
Gilkey was a convicted murderer before the killings, but this criminal history is only part of the reason for his tragically violent response to a seemingly trivial incident. He was a caregiver on the edge, and the chiding, which led to an argument, pushed him over it, unfortunately taking the others with him.
An important facet of Denholm’s mission in writing The Caregiving Wife’s Handbook (based largely on her own experiences — over 11 years worth — as a caregiving wife) is to prevent caregivers from becoming a headliner like Gilkey. Of course, few people anticipate that they could ever go so far as murder, but spousal caregiving situations are unique. Though there are tensions, struggles, and challenges in all caregiving relationships, those between husband and wife can be especially intense. “Caregiving can destroy people and marriages,” says Denholm. The emotional and financial components of caring for a spouse is often what makes it such a highly charged dynamic; these are among the issues for which Denholm offers her advice — and practical coping tips — in the book. If you can be better prepared for the challenges to come, says Denholm, you can “come through with your life intact.”
Filling a Gap with “The Caregiving Wife’s Handbook”
Gaining some valuable context from her 35 years of experience in private practice therapy (dealing with death and dying, pain management, eating, and wellness issues) and as a board-certified medical psychotherapist, Denholm still found herself in “unchartered territory” when she became her husband’s caregiver. She realized it wasn’t just a medical or emotional issue, but a marital one too. “So many things have to continue moving forward even as a person is dying,” she explained. “Household management, finances, and every day life stuff…all these practical things are still going on, and they intensify.”
During her caregiving years, most of the literature Denholm found was focused on caring for dying parents, a dissimilar situation and role. “Your husband is a friend and lover too,” she said, a complexity which impacts what’s happening in a different way than in dealing with a parent. There are power struggles, issues with sex and intimacy, and more.
“I realized so many people needed help and guidance in these circumstances, because they were endangering their own health in the process of caregiving,” said Denholm, who had several friends caring for spouses at the same time. Though there aren’t any books for caregiving husbands, Denholm had her book reviewed and endorsed by many men. “I found that much of the information was transferrable to gender,” she said.
Denholm’s book also breaks down some of the role changes that take place when a spouse becomes the caregiver for their partner. “Too many wives want to take charge of everything,” said Denholm, but there may be others who, for example, have been left in the dark for years about finances, and have no desire — or context — for taking on the role of family accountant now.
In the early part of the book, Denholm offers a list of 24 questions that caregiving wives (or husbands) should answer as a means of sorting through their emotions about this new role, and to help them better assess what areas need the most attention. It’s also a good exercise for caregivers who need to find their voice, for wives whose husband had a dominating personality, perhaps, and didn’t often get an opportunity to express themselves. Among them: “I am angry about the following things…” “I feel guilt about…” “I don’t think I can…” “What do I do when…” and “I don’t expect anything to be done about this, but I want you to know…”
Through all of the challenges a caregiving wife and dying husband will face together, Denholm constantly emphasizes the importance of honoring the wishes of the dying, of respecting a spouse’s decision about end-of-life care even if she disagrees. Says Denholm, “The only time where a wife can really step in and have a say is if it directly impacts her.”
“Enabling is a big theme in my book,” says Denholm. And wives need to know how to avoid falling into its trap because “it brings both people down,” she says. “You need to create systems that will help things move/work more smoothly, so your environment is pleasant and amicable.”
Scenarios & Strategies
Consider this scenario: you’ve been after your husband for weeks, maybe even months now, to go to the doctor about a health issue he’s concerned about. You’ve tried to do so in a way that couldn’t be pegged as nagging or pestering, but he still refuses. Then, after a conversation with a friend — or maybe a total stranger — he says, “You know, I should go to the doctor about that problem I’m having.” Sound familiar?
Here’s another one: you’re caring for your terminally ill husband and doing your best to meet his care needs. When the children and other family members come for an occasional visit, they are quick to offer advice (with no real understanding of his needs or what your days and weeks are like) and question your every move and motive. Few of them actually offer to help and spend just a few hours with you.
Denholm breaks down these common caregiver conundrums in “The Hottest Button” and “Whose Business Is It Anyway?” chapters of her book, suggesting communication strategies to redirect the frustration and anger that understandably bubbles up as a result. Again, it is preparedness that makes a difference, as you’re less likely to explode, implode or say something you regret if you know what to expect and how to react. Denholm says you should expect your family members and outsiders to feel a need and right to information — and to suggest things. But you don’t have to act on what they say or take it as a personal affront. “You have choices and options when you realize that you do. In the caregiving life, you learn what those options are and how to use them.”
Denholm also recommends “agreements” and “understandings” between husbands and wives as the most important means of making life work. One common issue: a policy on visitors. Some husbands may want lots of visitors, others none. Talk about what will be best for both of you in advance so you don’t run into problems, say, when your husband’s former colleague stops by with a six-pack of beer during the time he gets an IV treatment. “Some visits/visitors are none of your business if it happened when you weren’t there and there was no direct impact,” says Denholm. “But if the visitor comes when you are there and it changes/impacts your schedule, then you need to do something.”
For example, some wives Denholm interviewed for the book found themselves commenting on their husband’s behavior at home (i.e. he drops food all over his lap now) in public/social situations as a way of (incorrectly) venting their frustrations. Frustrated about their role as caregiver, frustrated about their husband’s illness, or a little of both, whatever the reason, these women eventually realized they had to make an agreement with themselves to keep their mouths shut instead of saying something hurtful about or in the presence of their husbands.
Sometimes, the agreements are between a wife and herself. For example, some wives Denholm interviewed for the book found themselves commenting on their husband’s behavior at home (i.e. he drops food all over his lap now) in public/social situations as a way of (incorrectly) venting their frustrations. Frustrated about their role as caregiver, frustrated about their husband’s illness, or a little of both, whatever the reason, these women eventually realized they had to make an agreement with themselves to keep their mouths shut instead of saying something hurtful about or in the presence of their husbands.