The TV ads for a new dementia drug make it look so easy. “He’s been my everything, so now I’m his.” Everyone is smiling. The caregiver bestows a loving kiss. The person being cared for looks content. The message? “Take this pill and everyone’s pain and stress will evaporate.” I wish.
However much we love someone who is chronically ill or suffering from dementia; however grateful we are for the years of love and companionship; however much we want to be there — “there” is a very difficult place to be. Most of us can manage a few days of emergency but when we know the emergency will extend far into the future, it’s difficult to keep up the energy and optimism we need to manage. What those ads don’t show — and what a pill can’t fix — is the stress of it.
Stress: You don’t know exactly what you’re supposed to do to keep your loved one healthy and content.
What to do: Recognize that caregiving is a job. It takes time and attention and skills. You needn’t feel guilty that you haven’t yet learned what to do or how to do it. It’s one of those areas of life that no one is adequately prepared for and no one knows how to do exactly right. Search the Internet for hints. Talk to people you know who have been there and done that. If your community has a senior center, see if services include a consultant or counselor to help you understand how to provide good care.
Stress: If your partner has become disabled, you now have to do double duty.
Every couple divides the turf. “You clean the bathroom. I’ll take care of the yardwork.” “You pay the bills. I’ll do all the shopping.” Now you have to do everything solo to keep your household in order. If you are caring for a parent or elder relative, you now feel like you have to keep up both households. It can be daunting.
What to do: Assess which household tasks you can let go of for now. Real friends won’t judge less than perfect housekeeping. Neither should you. Maybe you won’t tend a garden this year. Maybe frozen dinners will do. Make things easier for yourself wherever you can.
Your health insurance may cover some or all of the cost of a visiting nurse or a personal care assistant. While they are tending to your partner, you have time to do other things.
Delegate what you can. If there are family members and friends who offer to help, by all means let them. The key to keeping this kind of support is to ask for specific things that can take a specific amount of time. You might, for example, ask a friend to do grocery shopping or to pick up prescriptions for you. Someone who has more time may be willing to straighten up your kitchen or do a load or two of laundry. Someone else might be able to take you and your loved one to a doctor appointment. By spreading tasks over many people, no one gets burned out.
Stress: Your feelings may sometimes get the best of you.
You get tired — and tired of it. It may be normal to feel angry, sad, guilty, and resentful that life has handed out such a difficult challenge. Knowing that doesn’t make it easy to manage it. Sometimes you may even feel angry, sad, guilty and resentful that you feel those feelings.
What to do: Acknowledge your feelings. It’s okay to wish things were different; to long for the ease of former days; to be resentful that this is where you find yourself now. But don’t stay stuck in that place. Find a way to move on. Prayer, meditation, a gratitude journal and reflection can provide the deep breath you need to keep going. If you don’t have a good friend who can be a sounding board, consider talking with a counselor or pastor.
Stress: Having trouble finding time for yourself.
Once in the caregiving role, it’s hard to find the time to do the many personal activities, small and large, that nurture the body and heart. It seems impossible to fit in a long bath, a few hours in nature or a solid workout.
What to do: Take care of yourself. It’s just true that you can’t take care of someone else unless you take care of yourself. You really can’t live on coffee and four hours of rest a night. Eat a balanced diet, get out for a bit of exercise now and then, and make sure you get some quality sleep. If someone asks what they can do, ask them to give you an hour or two off so you can get to the gym or so you can take a nap. If someone offers to bring over a meal, welcome it.
Stress: Figuring out complicated medical decisions.
You may have agreed to become your loved one’s health care proxy because you thought you knew what he would want for himself. But the two of you probably didn’t talk about the many available treatments. The treatments may not have even been available to discuss when your partner was healthy.
What to do: If a doctor’s conversation leaves you more confused than helped, say so. Ask questions. Don’t be embarrassed to ask for a repeat. Write things down. If at all possible, take a friend with you to appointments. Someone less emotionally involved can sometimes be a better listener. You’ll then have someone to talk to about what you heard.
As exhausting as it can be, caring for someone you love can also be a fulfilling time of life. But — despite what the ads say — you don’t have to be someone’s “everything.” In fact, it’s healthier for you both if you share the care. By marshalling and accepting help, you will free yourself to do what only you can do: Provide the love and constancy that the person needs.