In her recently published memoir, Amy Bloom talks about her delay in having her husband tested for early-onset Alzheimer’s disease. She copes (or not) with his new behaviors that don’t make sense for many months until a neurologist sees him and the diagnosis is made. She says she wishes she had known months earlier why he was acting as he did. Presumably, it might have eased some of her confusion and misunderstanding of his behavior and emotional state. Perhaps she could have reached out to the many support groups for family members of Alzheimer’s patients for help.
What she needed was support in helping her learn her new role as a spousal caregiver. She had instinctively taken on this role to ensure that the memory and cognitive deterioration of her spouse would not put him in any physical harm months before his diagnosis. But until the diagnosis was made and a road map of what to expect, more or less, was offered by the neurologist, she, like any other newbie caregiver, was given no help at all. (And indeed, very little at the time of the diagnosis.)
Often, changes in the behavior of a spouse may not be due to one medical problem, but rather the piling on of medical issues that may result in impaired sight, hearing, mobility, and chronic pain. A friend of mine found herself suddenly needing to alter her own lifestyle when her husband became partially paralyzed due to a spinal injury. Social interactions with other couples became limited, and her volunteer activities stopped because she was “on call” much of the day and night. Her daughter relieved her a few hours a week. That, at least, gave her time for her own appointments.
“There is no one to tell me what to expect or how to cope,” she told me when I bumped into her in the supermarket. “And I can’t really complain because at least his mind is still fine. I look at my friends whose spouses have Alzheimer’s or a stroke and they are unable to communicate. How can I complain? But I feel so isolated.”
There are support groups for just about every type of medical problem, and they are often available both for the patient and her family caregiver. The advice offered to the caregiver is sensible and necessary: make sure you take care of your emotional and physical needs. However, the novice caregiver may need more individualized help. He is like someone learning to ride a bike. Someone has to be there to hold the bike and run with it until the new rider is balanced and able to stay on and pedal. So too, someone from a support group should be available to offer personalized emotional and practical support. This may include helping the new caregiver anticipate problems that will arise, such as dealing with medical insurance, finding home aides, dealing with the emotional fluctuations of the patient, and the caregiver’s own emotional needs. Someone has to assure the caregiver that her own emotional responses to this new situation are normal, because love is now mingled with anger, optimism with despair, and frustration sometimes overwhelms the caregiver’s patience. Bloom finally seeks help from a therapist, and is relieved to learn that her anger at the situation—and sometimes at her husband—is normal.
The new spousal caregiver is in some respects like a new mother contending with every aspect of infant care for the first time. It really doesn’t matter how many books are consulted before the baby is born. Nothing really prepares the mom for the crying, the early morning feeds, the mental confusion from lack of sleep, or the inability to figure out what the infant needs. Many new moms and dads benefit from advice (often given without request) from grandparents or friends and relatives who may have children a few years older. They will tell the new parents what to do now, and what to expect in the near future.
The new caregiver needs a similar kind of help. In an ideal situation, someone like the experienced mother could guide, inform, reassure and help with problems and remove the guilt the caregiver may be experiencing because of his negative feelings toward the patient. My friend told me that when her husband’s medical problem was identified, a nurse warned her that when he was in pain, he might become angry, and angry with her, specifically. “I thank her silently every time this happens, and it does,” she told me. “It makes his change in mood understandable.“
Sometimes, serendipity provides an experienced caregiver to help a newcomer in this role. A neighbor, relative, or someone in a Yoga or meditation class will come forth to offer help. This happened in my small neighborhood when two women who were already taking care of their spouses offered to have coffee with a third whom they knew was having a hard time taking care of her husband. Sharing experiences, information about sources of professional help (such as an occupational or physical therapist), laughing together over situations that privately may have brought tears, and being willing to hear each other’s complaints had a significant effect on reducing stress for all of them.
Their support was invaluable to the newcomer, and they voiced their frustration that they did not have access to similar support when their spouses first needed their care. Support groups are, of course, helpful, but going to a meeting is often just one more thing the novice caregiver has to figure out how to do. One would not expect a new and exhausted mom to attend a mom-baby playgroup or feel comfortable leaving her infant in someone‘s care.
Virtual meetings are one answer. A pre-pandemic study showed that caregivers living in isolated rural areas were helped by interacting with nurses digitally. Perhaps we will see, in the near future, websites that offer virtual caregiver support specifically for the new caregiver. Obviously, such sites should have safeguards to protect the privacy of the advice-giver and the advice-receiver. But wouldn’t it be nice if the mentally and physically exhausted caregiver could click on a site and be able to chat with someone who is empathetic; who can say, “I know what you are going through?”