The Caregiver’s Manifesto

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How many patients have I known over the years who’ve found themselves caught in the quicksand that is caring for a chronically ill loved one? Too many to count, so I’ll recount just one. Mrs. S is an elderly woman married to a retired university law professor, who has been slowly losing a battle with dementia. Once a witty, intelligent, and self-deprecating delight of a man, over the years I’ve been caring for him, he’s gradually changed into a cantankerous, vitriolic, shell of his former self, now barely able to remember the day or month, much less the year.

He still knows his wife, though. And me. His ability to care for himself, however, has steadily deteriorated. In addition to now requiring help dressing, bathing, and feeding himself, he needs help remembering to take the multitude of medications he requires for his several other serious medical conditions. Unfortunately, not only doesn’t he remember to take them, he often angrily refuses even when his wife remembers for him. He’s 6’2″ and 185 lbs. His wife is 5’3″ and 110 lbs.

Mrs. S is one of the sweetest patients I have. So appreciative. So consistently optimistic. But she’s been steadily bending lower and lower under the weight of caring for her husband for years, and recently, when he was admitted to the hospital for a stroke that left him even more dependent on her for care, has seemed about to break. She’s accepted some home care services but has consistently and adamantly refused to place him in a nursing home, despite what now amounts to having to provide him near 24-hour-a-day care. I worry about them both all the time.

I’ve had extensive discussions with Mrs. S about the joys and burdens of caregiving and have dispensed all the support and advice I know to give. Some she’s accepted and some she’s not. Given the increasing likelihood that many of us will find ourselves the primary caregiver for a chronically ill loved one at some point in our future—if we haven’t already—I wanted to offer my thoughts on what I’ve come to think of as the Caregiver’s Manifesto.

  1. Care for yourself first. Caregivers routinely make their first priority taking care of someone else—which is why they often need to be reminded to take care of themselves. Caregivers, I’ve found, often have a difficult time choosing their own needs over those of others, sometimes finding themselves even incapable of it, having somewhere along the line inadvertently signed a Good Guy contract. But caregivers ignore their own needs not just at their own peril but at the peril of the people for whom they care. Typically what happens if such willful self-neglect goes on long enough is that caregivers begin to experience periods in which they feel overwhelmed (which, of course, they may feel even when not ignoring their own needs!)—and find themselves suddenly and even violently resentful and opposed to doing any caregiving at all. These feelings tend to come in bursts and are often followed by intense feelings of guilt, especially if in an angry moment they were actually expressed. It’s often hard for a caregiver not to project their frustration onto the very person for whom they’re caring even though the frustration they feel is often with the experience of caring for their loved one or even with themselves (for being unwilling, or feeling unable, to care for themselves). But caring for yourself isn’t selfish: not only are you, as a caregiver, a person, too, who struggles and suffers with life like anyone else and who deserves to be happy like anyone else, but if you allow yourself to become miserable in the act of caregiving your capacity to provide good care to anyone will become significantly impaired. When you’re a caregiver, caring for yourself is part of caring for another. Further, few people who require the care of others want to require the care of others and often feel guilty as a result.  Making sure to take care of yourself can often go a long way in assuaging the guilt your loved one may feel over requiring you to care for them.  So figure out whatever you need to do to maintain balance—a daily walk by yourself, a good book to enjoy at the end of the day, an occasional movie—and do it.
  2. Preserve whatever you can of your original relationship. Just because your spouse/sibling/child/friend requires your care doesn’t mean either of you want to change the nature of your relationship from its original state—but that’s still often what happens. It’s extremely difficult when your spouse, for example, requires help with basic self-care tasks for the balance of power that exists in all such relationships not to shift toward the caregiver, a shift that can’t help but alter the way you relate to one another. But both of you retain the power to create moments in which your old ways of relating are recaptured. Spouses can still find ways to connect romantically or intimately with their partners in creative ways—if not sexually, then at least physically (just by holding hands or snuggling) or even through intimate conversation. Children can have discussions with parents about their hopes and fears. Exhaust your creativity to retain whatever elements of the way you previously related to your loved one you can, not just for your loved one but for you. The way you used to connect to your loved one isn’t the only way possible. Find new ways that work for you both.
  3. Laugh at everything you can. Some psychologists consider laughter an adaptive defense mechanism that helps us withstand unpleasant experiences.  While that may not fully explain why we laugh, it’s certainly true for many people in many circumstances. So, seek to create experiences designed to make you and your loved one laugh. Seek humor in even the most grisly circumstances. The act of laughing itself, of being able to laugh, both creates and is created by a high life-condition, a state that most decidedly makes everything easier to bear. A recent study of patients with dementia showed that even when people with an impaired ability to remember things forget the experiences that affected them emotionally, the emotions of those experiences (whether good or bad ones) remained stirred up. So even if they don’t remember why, after laughing, even demented people still find themselves feeling good, as humor, when heartfelt, always provokes joy, even if only a little. Never forget that most important of equations:  humor = tragedy + time.
  4. Get as much help as you can. Most caretakers only think to ask for help long after they actually need it. Additionally, most caretakers lack sufficient training for the caregiving they’re required to provide. This is a recipe for disaster. Learn what you need to learn in order to be a good caretaker however you can and seek professional support as early as possible. Certainly, health insurance is often a limiting factor, but do your best to work with whatever you have.
  5. Know your limits. If you constantly allow your limits to be exceeded without sufficient rest in between episodes you’ll almost invariably become used up. I’ve watched numerous caregivers allow their entire lives to be taken over by their caregiving responsibilities—watched them abandon jobs, other relationships, and any semblance of an enjoyable life all in the name of caregiving, insisting on shouldering all the caregiving duties themselves. While such dedication is admirable, it is neither sustainable nor healthy. When this occurs, it ruins two lives instead of one. Often this state of affairs is reached without the caregiver’s even realizing it, their loved one’s needs often growing slowly like grass—without being directly recognized. A sick loved one’s illness is their caregiver’s illness, too, just one experienced in a different way than if they were the one who was ill. It is neither selfish nor weak for a caregiver to acknowledge their limits and act accordingly.
  6. Embrace your new life. Life is change. Everything is impermanent, the original Buddha taught. Everything—and there is nothing we can do to change this fact. Rather than rage against a change we don’t want but can’t stop, we must embrace it, fully discarding our old lives and seeking to create meaning and value out of our new ones. It’s amazing how simply accepting adverse circumstances we can’t change can free us from some of the pain of experiencing them.
  7. Value yourself for the care you provide. Even if your loved one doesn’t express their appreciation, or expresses it so often it ceases to have meaning, recognize and value your own achievement in committing to the care of another person.  It’s a great gift to give—perhaps even the greatest—and it makes all who choose to give it truly worthy of the word noble.

All caregivers are heroes. It’s impossible to be a caregiver without making some sacrifices. Then again, most relationships, to be sustained, require some sacrifices. Perhaps not as many as the caregiver of a chronically ill person find themselves having to make, but the joy you can experience in the relationship need be no less. Reflect on the guidelines above and on whatever other ones help you to feel you can handle the responsibility you’ve accepted in a way that doesn’t ruin your life or prevent you from enjoying the relationship you now have. Because no matter how one-sided that relationship may now seem, it most certainly is not.

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