Breaking the Isolation of Caretaking

Three Ways to Help Clients Cope with the Challenges of Alzheimer’s

Nancy Kriseman

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.

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.

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.

Ambiguous Loss

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? 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.

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 Dilemmas of Divorce.

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Topic: Anxiety/Depression | Aging | Couples

Tags: family | grief | loss | psychotherapy | therapy | coping | Alzheimer's | memory loss | old age | elderly | AD | Alzheimer's Disease | dementia | violence | spouse | chronic disease | personality changes | confusion | paranoia | helplessness

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