G.J spent their early 30s as a 24/7, solo dementia caregiver for his adoptive grandfather in North Texas. When their grandfather could no longer live at home, G.J. oversaw his memory care stay while attending graduate school.
Over the decade or so since I had to start educating myself about caregiving, I’ve seen a lot of progress made toward getting caregivers the knowledge and resources they need earlier. In many local regions and especially online, there is more information out there for caregivers who are at Day 1 than ever before. But with this boom in information come generalizing trends that makes it harder to explore topics that aren’t already covered everywhere else. However far we are now along our personal care journeys, we each started with a personal Day 1 and no guarantee how many days would follow. And while I’ve seen plenty of skill sharing and condition-specific programs and pleas to take care of ourselves, one thing I haven’t seen offered yet is any preparation for the ways caregiving experiences change the caregiver. Since my adoptive grandfather passed away, I have spent years trying to process these changes – some temporary, some not – but I think with a little warning we can prepare and take these changes as they come.
Before I begin, let me make some quick caveats:
First, I’m not trying to overshadow all of that terrific work I mentioned above that prepares you for the financial, housing, and health challenges. This is intended as a companion to those materials, something to think about once in a while about rather than some kind of action plan.
Secondly, whatever resources and support you bring into the care dynamic, there will always be an opportunity to let the experience strengthen your relationship with your care partner. If you can find meaning in your care role, you may get to see a side of your care partner they’ve never shown you before. (And if your relationship was less than glowing before caregiving, you may find yourself learning to set better boundaries and let go of others’ expectations, confident that you are doing your best and perhaps always were.
Finally, while I encourage caregivers to connect and learn from each other, I don’t want anyone to assume it will somehow give you magical powers to accurately predict what happens or halt a progressive condition. Our role is not to pull off a miracle, it is to comfort, support, and keep safe. Every moment we spend worrying about things that haven’t happened or blaming ourselves for what has is another moment we could be working toward solidarity instead. (It’s quite astounding – and strangely affirming – when you have a support group of more than a dozen caregivers and each one carries a feeling they personally have failed to do enough, yet will also reassure everyone else: “You have gone above and beyond.”)
The points I’ve just shared are all commonly discussed in care training and support groups; if you haven’t checked any out yet, I highly encourage it. Now let’s get on with something original: three aspects of caregiving that change us, and the advice I have about them all.
There were so many unique qualities to my experience as a dementia caregiver – being in my 30s, having no parenting experience, caring for chosen family, etc. – that I assumed my sense of isolation and abandonment were unique, even personal. I later found out my sense of social isolation was common for caregivers (compare, for example, the struggles reported by first-time moms). Human beings are social creatures, but over time the stress and unpredictability of caregiving can make it hard to keep up with social events; our absence may or may not be noticed, but friends will eventually just stop inviting us. That’s not even accounting for when high-intensity caregivers start to experience loss of memory and executive function. Strangely enough, caregiving is a very common experience in the U.S., and the changes in social support can flow in both directions (but more on that later).
Anxiety and Grief
As I just mentioned, high-intensity caregivers can experience worse cognitive and mental health – when dementia caregivers joke about “catching it” from their care partners, they’re likely reporting that they get little sleep and even less rest, but any caregiver can find their emotional and mental limits constrict over time. Caregiving involves a complex and perpetual negotiation or our needs and our care partner’s needs. In more intensive circumstances, it can feel like we’re trying to live two whole lives; agitation, anger, and overwhelm are practically inevitable, making it that much harder to make time to care of our own physical, emotional, and social needs. This recipe for anxiety can be significantly worse when – like most of us – we don’t ease into our care role but are thrust into it by some kind of crisis (like a hospital stay, accident, or disappearance). Those early moments can set the tone for everything that follows, especially if we don’t make time to sit with it and process what happened. Anxiety is often about what we feel we cannot say, and grief is often about who we feel we cannot say it to. Some care situations put us in the delicate situation of grieving someone who is very much still in our lives; it would be unfair to make our feelings about their condition into their problem, but that does not mean we can’t find healthy ways to express those feelings with others – in fact, we must.
Eventually, we recognize that you can’t control the amount of time and energy care requires as well as you can other aspects of life. The longer we deny this, the more often priorities such as work, raising children, and maintaining social ties will collide, until every moment just feels like an interruption of something else. We may eventually have to see ourselves as caregivers first, then prioritize whatever supports our being effective caregivers, and only then can we figure out what else there’s still room for. For my reckoning, I had to give up participating in the activism that was important to me before caregiving; I had to reframe this shift as being my grandfather’s advocate all day, every day – I couldn’t advocate for him and other matters at the same time. (Your shifts may look very different, this is just one lived example.) I must acknowledge here the further shift experienced by care partnerships that are also romantic partnerships, as the care partner’s condition may dramatically change the scope and possibilities of the relationship itself. That said, the earlier a caregiver can recognize and accept the necessary shift of priorities, the easier it becomes to focus on helping a loved one accept what they are going through.
And the One Thing You Can Do About It All:
Let it happen.
Allow me to elaborate on the changes I listed above:
From isolation can come better friendships and better independence.
In place of all the friends who seemed to forget me during my care journey, I found a handful of friendships that were deeper and more healing than any I could have imagined. We get creative with social media and virtual spaces to stay close – something I couldn’t pull off during caregiving. It’s okay if our social circles look different because caregiving is for many of us a major life stage. Online is also where I learn from disabled people and disabled activists – not just about how to show up for my disabled friends but also how to socialize with limitations and accept and work with the body I have. Even while I value my friends and colleagues more than ever before, I’ve also gotten more skilled at spending time alone (which came in handy in recent years).
From anxiety and grief can come self-awareness and acceptance – we can even get better at asking for help!
As unpleasant as it can be to feel “stuck” in our circumstances, such feelings bring an opportunity to make the most of the situation – if we can accept it. As we learn, we will usually find others whose skill set is completely different; being honest about our abilities makes it easier to play to our strengths and anticipate our weaknesses. Caregiving is an opportunity for truth, because there is so little room for misdirection. The sooner we recognize our circumstances, the sooner we can let go of what gets in the way and make room for necessary changes. Sometimes the hardest part of caregiving is just recognizing the present moment for what it is – not worrying about the future, not trying to make up for the past, just being open to the needs and possibilities of the moment we are in.
From a change in priorities can come mindfulness and peace.
On a logical level, we understand that we shouldn’t get mad at our loved ones for their circumstances, but whenever we fill our brain with expectations about how a scenario “should” go, we are seeding our own disappointment. We learn to steel ourselves against surprises or annoyances that inevitably come up along the way. We know change is imminent and we may be unprepared when it arrives, but when we prepare for the wrong scenario we end up both unprepared for it and exhausted by it. Particularly when caring for someone with chronic or degenerative illness, it can be hard to accept changes that all feel like losses, but if we can reframe them or see the positive aspects as well, peace becomes much easier to maintain. Rather than preparing for either good or bad scenarios, we can learn to relax our worries; if we can remain vigilant yet open, that can be a step toward mindfulness, sometimes called simply “being present,” a state of mental flexibility where frustration is lower because we don’t try to anticipate what comes next. Most of us don’t notice how much of our mental energy we spend thinking about things we want or expect to be true until we’re in a situation of helplessness that forces us to let go. Not only is the experience humbling, but with patience it can permanently shift our focus toward the handful of things we can control and away from being upset at everything we can’t. Caregiving is a situation where mindfulness is both easier and more necessary to cultivate.
In closing, I want to reiterate that the strategies shared in this essay are intended to supplement other caregiver resources, not replace them. I’ve never met a caregiver who had “enough” support or information, but there’s a stark difference between those who have some and those who have none. Empower yourself to search for other folks who are facing similar challenges, attend a webinar or support group, find a therapist who specializes in working with caregivers, and check in with friends and family about how caregiving might change your relationships – whatever you need to do to focus on remaining present for your care partnership. The changes you undergo as a caregiver can be permanent and overwhelmingly positive – you just have to let them.
G.J. Hodson (he/they/she) facilitates programming and research at the intersections of care and identity. Possibly the only dementia caregiver who studied statistics to recover from burnout, G.J earned a Master’s Degree in Sociology to understand the isolation and inequality experienced by caregivers. His academic research has explored generational variations affecting our care experiences, and their innovative programming highlights the growing contributions of young, LGBTQ+, and chosen family caregivers. Last year, G.J. was honored as a Caregiving Fellow by Caring Across Generations. They have previously presented for the Alzheimer’s Association, The Social Breakdown Podcast, the Pima Council on Aging, and several undergraduate and graduate classrooms. Learn more about G.J. and her work by searching “theoriesofcare” on LinkTree or social media.
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