Q: I have an elderly client whose husband is in the early stages of Alzheimer’s disease (AD). He’s in denial, and she’s having a difficult time planning for his care. How can I best support her?
A: The Alzheimer’s Association estimates that 5.2 million Americans affected by dementia are over the age 65, which makes the vast majority members of what’s called the traditionalist generation. Understanding this generation’s entrenched values and how they can affect their coping and your intervention can facilitate better outcomes.
Working with the Traditionalist Generation
Nettie is a 76-year-old client who reluctantly contacted me at her daughter’s insistence. Nettie, who’d been married for 50 years, was struggling with how to cope with her husband’s AD. The old phrase “in sickness and in health, till death us do part” is a strongly held value about marriage within the traditionalist generation, and Nettie took the oath literally. She was focusing only on her husband, Sam, and neglecting her own health and well-being.
Traditionalists rarely seek out professional help, so when they do, therapists should immediately acknowledge their willingness to reach out and encourage them to accept that they shouldn’t see themselves as being solely responsible for their spouse’s care. For example, I helped Nettie obtain a more objective understanding of what she could and couldn’t do, which allowed her to begin to set limits.
Additionally, traditionalist spouses often need help identifying what kinds of support they need, such as getting a family member to come over for a few hours so they can run errands or do something by way of self-nurture. They need to be reminded that “sharing the care” can provide a positive benefit for the ill spouse as well. Thus, I helped Nettie forge a circle of support—friends, family, and colleagues willing to help both her and Sam.
Therapists should also explore whether there might be other ways to help nourish the spouse’s spirit. Since caregiving can be depleting, the well spouse needs encouragement to find ways to replenish. With help, Nettie decided to enroll in a tai chi class, set up a weekly lunch date with her daughter, and joined an AD support group.
Coping with Disenfranchised Grief
AD is different from other chronic diseases because a person with AD loses cognitive as well as physical capacity. The cognitive changes can include memory loss, personality changes, confusion, paranoia, and a decline in judgment and reasoning. Additionally, the cognitive changes associated with AD can be accompanied by behavioral changes, including cursing; hitting; removing clothes; defecating in public; and even physically, emotionally, or verbally abusing a loved one. These issues are physically and emotionally depleting for the well spouse.
If this isn’t difficult enough, there’s the issue of disenfranchised grief, which involves feeling sorrow, angst, and worry without receiving recognition or validation from others or society in general. For the traditionalist generation, disenfranchised grief can often be magnified, as its members believe they have to tough it out. Because they tend to be private about personal matters, they hide their feelings and don’t share the challenges they face. In Nettie’s situation, her husband’s personality had changed since he was diagnosed with AD. When she’d try to address their overdue bills, he’d become irate and yell at her. When she’d encourage him to take a shower after a couple of days of not doing so, he’d tell her to mind her own business and leave him alone. She rarely shared her feelings about these experiences with anyone, but when she did, friends and family members minimized how much he’d deteriorated and didn’t seem to understand what she was dealing with on a daily basis.
One of the most difficult aspects of disenfranchised grief can involve spousal abuse. In most cases, this abuse only occurs after the ill spouse develops AD. It’s vital to be aware that some well spouses are reluctant to share that they’re now afraid of their partner, so they keep it to themselves, which fuels their anxiety and heightens their stress. Therapists should therefore make it a point to ask whether the client is being physically or verbally threatened by the ill spouse. When I asked Nettie about whether Sam was abusing her, she meekly said yes and started crying. Allowing her the space to cry and share her feelings was extremely liberating for her. It encouraged her to share that there was a gun in the house and that she was afraid Sam might use it in one of his fits—something she hadn’t previously disclosed.
The traditionalist generation tends to believe they simply have to cope with whatever comes their way, so it’s critical for therapists to remind clients to be proactive when it comes to safety. If there’s a gun or other weapon in the house, it has to be removed. Additionally, clients need to be informed of options if the ill spouse becomes violent. If a cell phone is available, remind clients to keep it nearby so that if they feel threatened, they can call 911. If there’s an alarm system in the house, remind them they can use the panic button. Also, therapists can encourage clients to speak to their spouse’s physician for support.
When we educate clients about how disenfranchised grief can affect them, we begin to find solutions for new ways to cope.
Another major issue that caregiver clients commonly experience is ambiguous loss. Even though their life partner is still alive, well spouses suffer the loss of the person they knew, in addition to the uncertainty of how the ill spouse will be each time they interact. Will he remember who you are? Will he be agitated by your presence? Will he let you take care of him? Will he be nonresponsive or suddenly accuse you of having an affair or stealing his money? Having to constantly consider these kinds of questions can be devastating for well spouses, who often report that they feel like they’re on a roller coaster. Therefore, therapists should try to discover whether their clients are experiencing ambiguous loss, and if so, they should name it and explain what it means and how it can affect them, giving them permission to express their sadness and grieve these losses.
Clients may also need help in finding new ways to accommodate themselves to their losses. In Nettie’s situation, she was holding onto the old Sam, as she called him, and expecting him to communicate the same way. She needed to understand that because his frontal lobe wasn’t functioning, she should stop trying to reason with him. I’ve found that clients experience great relief once they grasp how common ambiguous loss is and have the opportunity to express their feelings. This, in turn, helps them recognize why they feel so stressed and anxious.
Working with clients caring for those with AD can be quite challenging, but therapists can make a huge difference in helping penetrate the veil of silence that often shrouds the grueling struggles of day-to-day care. It’s important never to underestimate how validating and normalizing the caretaker’s experience—especially the underlying embarrassment, guilt, and sense of helplessness—can foster resilience and inspire hope, counteracting the terrible sense of isolation that too often adds to the seemingly all-consuming burden of looking after AD sufferers.
This blog is excerpted from "When a Partner Has Alzheimer’s," by Nancy Kriseman. The full version is available in the July/August 2015 issue, Should This Marriage Be Saved?: Therapists and the Dilemma of Divorce.
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