I have been a caregiver for my mother since I was 12 years old.
Sometimes I think it will kill me.
This is not metaphor. Caring for aging parents is a well-recognized health risk. In my own family, a stretch of intense caregiving precipitated a life-threatening health crisis in a young and previously healthy person I love.
November is ‘caregiver month,’ and smiling ad campaigns of well-dressed middle-aged children gazing warmly at Mom while they dispense medication have prompted this post – an honest look at what caregiving has been like for me, and things that have helped me survive it. I hope they’ll help you survive it too.
To anyone who hasn’t walked this path, some of the things I write here may sound ruthless. But caregiving is ruthless – especially when you may be doing it over and over again, or concurrently, for two or four (or more) parents. The research on what caring for an aging parent does to the caregiver is grim. The studies report an arc – the caregiver’s health and quality of life decline as the recipient’s need for care increases (even if the recipient is in a facility). As we have given care in varying intensity and duration to Anthony’s parents and to my mom, I have found this to be true. If you allow it, caregiving can be a destroyer of health, relationships, and sanity.
The crushing nature of caregiving is not the fault of the person needing care, though planning and financial resources can mitigate the worst of the strain. It is, among other things, our tragically broken healthcare system. It wasn’t always like this; as I’ve noted elsewhere, ours is the first generation in which caring for an aging parent is something that can go on for decades. It’s also the first generation in which the medical establishment seems to have completely checked out – where family is routinely expected (sometimes with breathtaking callousness) to perform complex medical procedures and the kind of intense care that was once only done by professionals in a healthcare setting. These days, unpaid/family caregivers provide 90% of long term care.
There’s plenty of advice available, and some of it even works – when you have adequate financial resources and stable, emotionally healthy parents who are cognitively intact and still able to understand how their choices impact others. When you don’t, then most of the advice falls on a continuum from merely useless to outright infuriating. Here are eight things I’ve actually found helpful.
- Understand that you are the only one looking out for you, and act accordingly. At some point, your parent will be unaware of or unconcerned about the impact of their needs on you. If they have a history of being emotionally unhealthy or abusive, or you have a difficult relationship, this might be the case from the beginning. If it’s solely due to their worsening health it might be much later. Whenever it happens, facing it is not easy. It’s also not easy to comprehend that health professionals, who we’ve been taught to view as the people with the answers, don’t actually have answers, or time to care about you. They are there only to manage an immediate medical crisis; the system doesn’t allow them space to wonder how close you are to the breaking point or how everyone is muddling through at home. You have a responsibility to the family you created (your spouse and children), and to yourself, to come out the other side of this OK. This means you are going to have to say no sometimes, even in the face of judgment or disapproval. Destroying yourself, especially when you can’t change the ultimate outcome, does not serve anyone – and if your parents were able to be their best selves, they wouldn’t want that either.
- Decide what you can give. We all have strengths, weaknesses, and limits. You might easily be able to do something (a medical procedure, intimate care) that I could not do, and vice versa. Think about what you can reasonably do, and say no to the rest. I know, for example, that one of my limits is that I cannot give my mom care in my home. I need my home as a place of retreat, a place to be with the family I created, to regroup so I can stay healthy.
- Just because you did it once doesn’t mean you have to keep doing it. Sometimes the only way you know you can’t or shouldn’t do something is after you’ve done it. You can still say no when it comes up again. I recently spent three days and nights providing intense care for my mother in her small apartment. Given my difficult history with her, I found this to be immensely triggering and it pushed me to the breaking point. If anything like that comes up again, she will have to have home health care.
- The person who gives the help sets the terms. If you’ve decided you can help, by all means, give what you can. But you set the terms, not your parent. This is especially true if you have a toxic or abusive history with your parents. Mom can afford help with household chores but wants you to do it so she doesn’t have ‘a stranger in the house?’ The senior center offers rides to the doctor but Dad would rather have you take time off work to drive him? Say no, and be willing to weather their disapproval (see number one). This is most definitely a marathon, not a sprint, so you’ll need to stop and breathe wherever you can – and save your energy for the things you can’t outsource. It’s better for you, and better for your parent, if you’re not exhausted and resentful.
- Self-care: maybe it’s not what you think. Self-care is often framed as doing things like getting a massage or taking a hot bath; seeing friends or going to yoga class, and it can certainly be all those things. But I’ve started to look at it as taking care of tomorrow’s me. I’ll do a load of laundry when I don’t feel like it, because then tomorrow’s me will have something nice to wear; I’ll keep my chiropractic appointment even when everything in my life screams CANCEL, because then tomorrow’s me will feel better.
- Nobody gets to judge you. I mentioned I am my mother’s sole caregiver. However, there are plenty of people that, while they are not interested in doing the heavy (or any) lifting, are perfectly willing to criticize me for the things I do or don’t do. The only sanity-saving response to this (credit Anthony) is, “If you’d like that done differently, go ahead and take it on.” Delivered with warmth and a smile, of course. Or not – you choose.
- Make the social worker your best friend. In the pac-man maze of aging care, social workers are the power pills – they help you slay the monsters. Wherever you encounter a social worker attached to your parent’s care – at a hospital or facility, at your local agency for the aging – use their resources to the fullest extent. Treat them as though they’re made of gold. This is the person with the knowledge and ability to get you and your parent real support.
- Second guessing: just don’t. It’s possible to scrutinize every single thing you did or didn’t do, looking for mistakes, reasons for self-loathing, and speculation on whether a different choice would have changed the outcome. Here’s the thing: you’re looking back at a situation knowing how it turned out. That’s information you didn’t have when you were in it up to your neck. This way lies madness. When those thoughts come up, I rely on a mantra: “Oops, I don’t go there,” or “We all did our best.” I’m sure you can come up with a mantra that sounds cooler and more Zen. When I need extra help with this, I use tools like cognitive-behavioral therapy, Emotional Freedom Technique, or Byron Katie’s Loving What Is. Or, well, Netflix.
As a caregiver, you’re doing one of the hardest jobs there is, so cut yourself some slack. Give yourself permission to make mistakes, to be human. And most of all, take good care of you – you’re the only one we’ve got.