A few guidelines for family and friends

by mymothersbrain

Being with my mom always reminds me of the heavy burden my sister bears as the daughter who is in charge of our mother. I haven’t a clue how she manages different caregivers’ schedules, Mom’s doctor appointments, finances, and grocery shopping, not to mention her own life. Because she, too, has a family and career of her own. Never are the issues of juggling all of these things more clear for me than when I am the one dropping balls. Monday was frustrating due to a well-loved but unexpected guest who had all sorts of advice that was well-intended but mostly inappropriate. If you’re not a caregiver it’s difficult to understand the rigors of being someone else’s brain. It’s difficult to understand how tightly choreographed a caregiving schedule can be; I’m not kidding when I say that some things have to be timed down to the very second. For those who want to be helpful to caregivers but don’t know how, I offer these few words.

1) When we say that mom’s routine is important, please believe us. If we keep her away from home a few minutes too long, she can get agitated and frightened. If we keep her out too long, she risks missing important medicines, as well. We can’t always take them with us. We know you want her to be like she always was, where pushing back our leave-taking a few minutes wouldn’t matter. But how much would you enjoy yourself if you were forever wondering who, exactly, are all the folks around you, and why they’re so loud, why they laugh so much? Might you not be frightened and uncomfortable?

2) Please understand if we can’t take her to see you as often as we used to do. It’s easy to take for granted the many small tasks that are involved simply in getting out of the house because you don’t have to think about it if your mind is working well. Taking her out means making a pitstop first, packing up the disposable underwear in case of accidents, locking the door, walking her to the car, helping her in the car, making sure she is buckled in. As her disease progresses, it will be easier for you to come see her — and we would love to have you come visit in her home, where she feels comfortable and safe.

3) If you do want to visit, please let us know in advance so we can prepare. Just dropping by means that we may be in the bathroom cleaning up after her, or may be feeding her or otherwise caring for her. Walking away from where we can see her even for a few seconds can be dangerous for her.

4) If you want to help, the best thing you can do is ask how you can help. Unless you are a caregiver yourself, unsolicited advice can add to our frustration and we might even lash out at you unintentionally.

5) Finally, if we seem exhausted, out of sorts, or unable to return your phone calls or e-mail messages, know that it isn’t personal. Caregiving is an exhausting job, and sometimes it literally is impossible to answer your e-mails or return your calls in a timely manner — or at all. Sometimes, these things drop to the bottom of our priorities list, eventually fall through the cracks and disappear. We ask for your understanding when this happens.