Someday someone you love is going to get sick–sick enough to need care. If you’re the one to take on that role, be ready for an unexpectedly contorted ride.
It’s not just the 24/7 nature of the effort that makes it such demanding work. Caregiving transports you into an entirely different world. That carefree, do-what-I-want-when-I-want lifestyle you had weeks before evaporates as you provide needed attention. Your priorities change. Your sleep patterns change. Your means of keeping yourself on an even keel change. Pretty much everything changes.
In particular, the person you love and for whom you’ve taken on the burden of caregiving changes a lot. Your wholesome bride of 60 years may start swearing like a sailor as she descends into dementia. Your big strong hunk of a husband may whine like a four-year old about everything in his life that isn’t fair. Perhaps the someone who was “always there” for you is barely there at all now. As you get farther and farther into the commitment, you feel less and less like you are living your own life.
And yet, caregiving can provide some of the most tender moments and incredibly rich love. Holding a hand or fetching a glass of water can be strong statements of a bond that can’t be expressed in words anymore.
But caregiving is also the quickest path to exhaustion you will ever find. It’s hard to keep your own needs in the picture, but it’s also imperative.
Get Help. Caregiver burnout is real. A week of looking after someone else may be doable. But a month? A year? A decade? It’s wise to get help for anything more than a few weeks and for some of us, more than a few days.
This may be a matter of getting other family members to come in on a regular basis so you can have some time to rediscover yourself. It may mean taking your loved one to an adult day care facility on a regular basis. It may mean searching for local resources that provide breaks to long-term caregivers. Whatever it takes, find a way to get some time for yourself. And then take it. Regularly. (Please note: A single getaway may leave you feeling more disconnected to yourself than before.)
Some patients are very good about encouraging this. Some have become so unaware of the needs of others that they will berate you for wanting it. It doesn’t make any difference. Find a way to take some time for yourself.
If you can’t take significant time for yourself very often, go on “three minute vacations” several times a day. Transport yourself mentally and emotionally to a place that’s soothing for you and let yourself experience that place for a few minutes. Beach… mountains… the mall–imagining yourself somewhere you love really can reduce your stress level.
Watch your health. Caregiver’s needs fall by the wayside very quickly and that can be catastrophic. You do not get bonus points for doing the martyr routine—you just get worn out. And then you get sick or have some sort of accident.
Respect your level of motivation. You may not want to give up any time at all of what you have left with the patient if you are deeply in love. But if you ended up as caregiver simply because there was no one else to do it, you’re going to need more frequent breaks and more extensive help.
Know when to quit. Seek good counsel on when it’s time to admit that you can’t do what needs to be done anymore. Search your heart for permission to stop carrying the whole load if your health—mental or physical–is deteriorating. Accepting this fact is extremely difficult. Setting some benchmarks early on so you know when you’ve come to that bend in the road might help.
It’s just as difficult to know when to stop if your patient is well enough to start caring for him/herself again. That might involve some resistance. When you’ve been getting all the attention, it can be hard to move on. A caregiver may need to become unavailable so the person who’s resisting that step into complete recovery has to do it him or herself. Or it may mean turning a deaf ear to whining about minor aches and pains. Sometimes it requires a blunt conversation.
Eventually, you will get your own life back. When you do, it will be richer. A stint in the surreal land of caregiving leaves you with a stronger appreciation of your personal freedom, but also with the satisfaction of having handled some hard but important work.