My friend John was recently diagnosed with a progressive, degenerative illness. This kind of news is startling, heartbreaking and reminds us of our own vulnerability. It's so difficult to know how to help. Our friends take turns visiting and pitching in wherever we can. His wife, Nina is trying to work, care for John and take care of the kids. She's not sleeping and has developed regular stress headaches. After looking into some resources for Nina, I decided to put together some info for caregivers and their supporters when dealing with a lengthy illness.
We all know that the primary caregiver is in it for the long haul. It's hard to pace yourself when you don't know how long that's going to last or how intense the situation will get. "Take care of yourself " is not always welcome advice. I've watched other friends try to keep the house going, take care of the kids and work while dealing with a spouse or family member who's ill. Self-care is the last thing they're thinking about or think they have time for. But caring for others is impossible when you're running on fumes most of the time. Lack of sleep and exercise coupled with bad eating habits can lead to an increased risk for depression. And it's very easy to let these habits creep into your life when your daily routine centers on meeting someone else's urgent needs. So how do you find time to meet your physical and emotional needs?
Ask for help and take people up on their offers of help. In a recent HuffPost piece, Lisa Bonchek Adams offered some great, concrete suggestions for how to help a friend who's sick. One that really stood out when you want to help is to text or email when you're headed to the store and see if your friend needs anything. It's simple and practical and usually easier than a phone call.
For Nina, family and friends have said, "Tell me how I can help." She doesn't always know what she needs. Friends who approach with a couple of suggestions really open the door -- "Can I pick dinner up for all of you? Let me come by and take the kids out for ice cream. I've got some free time to come over, if you want to get out." Even if none of these suggestions is great in that moment, your friend knows that you're thinking of her and if you keep offering, eventually the timing will be right or it might remind her of something that she does need.
Asking for help can be hard, but try to remember that you're not just asking for yourself. Your friends who offer, really do want to help. It's okay to be specific. Some people don't do well with the heavy emotional moments, but can get your car washed, pick up your dry cleaning and quite happily take your dog for a walk. I will always help clean the kitchen because it's much more pleasant to do someone else's dishes than my own. And I don't always know what to say.
When you're caring for a spouse or family member who's ill, there are physical and emotional factors that cause stress. Recognize that the little things you do to relieve stress and care for yourself add to your overall stamina. Take a bath. If you can't get out to the gym, do some simple stretches at home, even 20 minutes makes a big difference. Sit and breathe slowly for one full minute. And get some sleep. Get as much sleep as you can. I know Nina's hit the full impact of sleep deprivation and she's realized that she's just got to lie down for a little bit each afternoon because in caring for John, her nighttime sleep is broken up. Sleep isn't a cure-all, but it makes an enormous difference in your ability to cope.
You may reach the point where you need regular help whether for medical or non-medical support. Home Health Care refers to a skilled nurse or other professional who provides medical care at home. A doctor may prescribe this and insurance such as Medicaid or Medicare may pay for it. A good resource for finding this kind of help is the Family Caregiver Alliance. This non-profit was started in 1977 specifically to support family and friends providing in-home care.
Home Care consists of a non-medical professional who comes in to assist with the patient's personal needs, such as bathing, dressing or cleaning. This is generally paid for privately. Agencies like 24 Hour Home Care in California have a Better Business Bureau accreditation and have been recognized nationally and locally. Look for indicators such as these in choosing someone to work with. It's worth the extra research because there isn't an oversight agency or credentialing board. Also, consider what your needs really are. Some agencies have a minimum number of hours you have to book for each visit. You may need the flexibility of an agency like 24 Hr Home Care that doesn't have a minimum because family members and friends can come in sometimes as well.
Reading this article over, it feels woefully inadequate. I know that stopping to breathe intentionally for a moment is a good thing. But it sounds a bit thin. I wish I had something much more profound and life changing to offer. Something like a miracle. Instead, I'm going to let Nina know that I'll be on her side of town tomorrow and see if she needs groceries. Or a latte. Or someone to vacuum her living room.
Names in the story have been changed.
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