This blog is based on my experience as a caretaker for my parent with dementia and the ideas I share in the book, Thirty Essential Tips to Start Managing the Alzheimer’s or Other Dementia, Your Parent, and Yourself. I hope you will find it useful.
Once when I was in my twenties, had little money, and found myself stranded in the rain on a Chicago sidewalk, a lovely couple was kind enough to stop and offer me a ride to the library where I was headed. The couple—an older African-American man and woman—were obviously from the South and had that kind and charming way about them that only Southerners have. Unusually—possibly because I was drenched to the bone—I accepted the ride. During the ride, they talked about where they came from, how they couldn’t believe people would just leave me standing out there in the rain, and the woman ended with a rather prophetic question, she said: “You are too young and pretty to be running around this city by yourself. Where are your people?” I had never really thought about that much before. My people—my family and my friends—were actually where they always had been about 600 miles due East. They weren’t here in this big city to protect me or to comfort me, and I did miss them. That’s when I learned one very important lesson and here it is: Modern life is not easy. It’s not for the faint of heart and it’s definitely not for the solo act.
Life seems to work best when you have family and friends. I’m not talking about the onlookers in your life. I’m talking about the ones willing to dive in and get their hands dirty. These are the ones who can enjoy you at a movie and dinner, but who are also willing to sit by your side, even when it’s by your parent’s bedside. These are the people around you who know how to tell a joke when things get too tense, to offer a glass of wine when it’s time to celebrate, and a shoulder to cry on when it’s not (and not the other way around). People who will are not resentful about sitting on the bench when you’ve got a long couple of weeks of deadlines and a caretaker on vacation, and who are willing to jump in and be present for you when you have the time to be there for and with them. Whether these people are friends who are also relatives, friends whom you’ve known since kindergarten, college buddies, or new arrivals in your friendship circle, these are “Your People.” And when you’re a caretaker, you cannot afford to be without them.
Think of your life as a kind of bank account. Before you can have anything to give to others, you must have something already there, deposited. You must have something first before there is anything to withdraw. You probably already think this way. Remember that person you know who always wants things from you, the person who comes around and takes, takes, takes, but gives very little? That person leaves you feeling bad, feeling put-upon, feeling taken and drained of your resources. Well that is exactly the process you are executing with yourself. Unfortunately, as a caregiver your withdrawal needs are probably high. The caregiver you is taking, taking, taking: moments away from your rest or sleep, hours away from your social life, days away from your job to care for your parent. The regular you, however, is not putting anything back to offset what you are giving out. You are not sleeping late on the weekends to renew your level of rest and relaxation lost during work week. You are not giving yourself special days off with your parent in respite care so that you can just hang out, shop, go out with friends without worry. You are not asking your brother or sister to take mom to her next appointment so that you can remain at work and easily get your assignment done without the need for early days or late evenings. You are constantly withdrawing and never depositing anything into your own account. You need to make these deposits into your life, for yourself and for your parent.
Think about it, much of your angst as a caregiver probably comes from not enough input in your friendship column. You have a dearth of those others who can support you and your caregiver life. Maybe you’ve lost touch with some of your friends, so your friendship account is low. You need to keep making regular deposits to that account, that is you need to maintain and/or create new friends in order to keep the input and outflow somewhat even.
With a friend, after you visit your mom and she doesn’t recognize you, and your friend makes the kind of joke only a friend can get away with, in 5 minutes you are both rolling on the floor in laughter and you go to sleep replaying the moment in your head, giggling to yourself. Without a friend, you go to bed upset and spend an hour tearfully writing in your journal. Life with friends is better.
If it is people that you’re missing, if it’s those priceless jokes or those soothing at the end of the day chats with the ones who love you, warts and all, then maybe it’s just as close as your old phone book. Are there people who would welcome you with open arms no matter how many miles you’ve logged since your last visit with them? Then ring them up. Start slow and rebuild a rapport. Focus around the things you’ve enjoyed in the past, then begin incorporating things from your current—perhaps more grownup, if you were friends at an earlier stage—life. Who knows, you may have even more in common now.
Start slowly and listen. Listen to the sound your heart makes in your friend’s presence (phone or in-person). Listen for what is really being exchanged between the two of you. If you feel a sense of “No thanks; I no longer want to connect with you,” emanating from your old friend, then trust it, believe it, and respect it and this other person, enough to leave them alone, to let them be. In that same vein, trust the resounding: “Yes, I want more of this,” that comes your way too.
Part of listening to yourself is listening and showing respect for the “selves” around you. Friendships, like all things have a shelf-life. Maybe it has been too long, or maybe they have changed in ways that require other, different kinds of friendships, rather than the kind the two of you once shared. You actually might not really enjoy being with them now anymore than they would enjoy being with you. Do not spend a lot of time worrying about it. Just accept the “no’s” and move toward the “yes’s.”
Do not ask your old friend whether that is how they feel, because most people will not want to hurt your feelings by answering back honestly. Trust that you will sense when your overtures are welcome and when they are not. Analyze why these invitations may not be welcomed later, when the dust in your life has settled, not now. And under no circumstance should you feel guilty about not being able to be what someone else needs. Think of this situation, if it occurs, as just life’s guiding you on to where (and with whom) you need to be.
If the possibility of old friends is out, then consider ways to make new friends. It won’t be the same as when you were a kid just starting school and sharing crayons, or a freshman at college, just happy for someone to walk into the dining hall with you. It won’t be that easy either. Still, you must be yourself. Don’t try to become an extrovert overnight if you’re not one now; introverts are quite nice people (read Gifts Differing or any Myers-Briggs publications). Don’t try to memorize great conversation starters—though if you’re rusty here, exercises like this can be good, in their place.
Why am I cautioning you? Because if you insist on joining someone else’s world rather than building your own, you risk adding the stress of being what others’ want to your life, rather than what you want. Just the opposite of what a caregiver, who may already be overly responsible, overly responsive, and stressed out, needs. You need joy in your life, not another person who needs for you to think of them first.
Instead, be yourself. Do the things you enjoy, and just wait for potential friends to present themselves to you. If you like yoga or have always wanted to try it, for instance, then sign up for a class. When you go, you will probably find that chatting with your classmates—and maybe meeting them and getting to know them better over juice and salads afterwards—will then be a natural off-shoot of an activity you enjoy. If yoga isn’t your thing, then maybe it will be volunteering for some cause that moves you. Alzheimer’s and Dementia organizations need you. Cancer organizations need you. There are thousands of other organizations that could use your active help and support. Remember, just the act of participating in an organization that supports and advocates for a particular calling, cause, or effort that you believe in puts you in touch with those others who share, at least to some degree, that belief. You may find that they also share other beliefs with you. Take the time to find out over coffee afterward, or shared time working on committees with those your find interesting.
No matter what your activity is if you enjoy it, then you will have added something to your life that is not only giving to you, but that is also filling up that deposit column you have. Not only that, but any friends you meet or friendships you begin to build will be part of your world, not a forced insertion of yourself into someone else’s world or into a place that no longer fits. You need people. Yes, but make sure they’re your people.
