Taking Care of the Caretaker

For Caretakers and Friends - February 28, 2013

Being a caretaker for a loved one who is coping with a major illness is one of the most important roles we can ever play in life. Unfortunately most of us fall into the trap of thinking that role requires us to wear ourselves out and neglect our own needs. I learned (the hard way, unfortunately) that it just doesn't have to be that way. Furthermore, it's better for the patient in your life if you take care of the caretaker too.

It's difficult to balance your needs as a caregiver and the needs of the patient. You may feel that because you are healthy, you have an obligation to defer or even neglect your own needs. Taking care of your patient may sometimes force you to put off taking care of yourself, but I caution you against doing this too much.

When a patient is first diagnosed with a major illness, you will probably find that it is not very difficult to be available as needed for your loved one. You may have to sacrifice a bit, but at first it's manageable. However, as time and the illness progress, you often find that it becomes more difficult to accomplish the things that you need to for yourself while also taking care of your loved one. At some point you typically hit a wall of exhaustion and frustration. Once you have reached that "tipping point," you're overwhelmed, overwrought, and possibly resentful. In other words, when you've hit that wall, you're in no fit state to care for your patient. That's why it's so important to start thinking of your own needs long before you reach this critical point.

These are some things that I learned to do to support myself while caring for my husband.

Get Over Yourself. If you think you cannot ask for and/or accept help from friends and family members, you're wrong. You need to get over that. Just accepting the fact that you can't do it all is a crucial step for a caregiver, and usually a difficult one. I know firsthand how challenging it can be. However, when you refuse help or stop yourself from seeking it out, you're doing a disservice to the patient in your life. Understand that taking care of yourself and accepting help is the most generous thing you can do for everyone involved.

Do Something For Yourself. Create a ritual that requires you to do something that you enjoy on your own at least once a week. It may be meeting a friend for a walk or conversation, having alone time at the library to read or going to the movies or watching a favorite TV show solo. It is vitally important that a few hours of each week is allotted just for the caregiver. This time should be treated as sacred, so have back up plans ready in case a scheduling conflict interferes with your "me time."

Be Real. The emotional issues that may come up around the illness may cause you and/or the patient to set unrealistic expectations. It's very common for a patient to insist that s/he only receive care from certain individuals. They may refuse to have professional caretakers in their home, or demand that only particular family members or friends stay with them. This is one of the most challenging dilemmas you can face as a caretaker. It is natural to want to agree to all your loved one's requests; you want him or her to feel comfortable and well cared for at all times. But sometimes these demands can exhaust you to the point of being an ineffective caretaker. Also, it's inevitable that over time you will become resentful of the situation—of the illness, of your responsibilities as a caretaker, perhaps even of your loved one. When this happens, no matter how hard you may try to cover up these feelings, your resentment and frustration will be obvious to the patient and potentially detrimental to their care.

This is why it's so important to set realistic expectations. There is nothing wrong with saying no to unreasonable demands, or insisting on additional help. While your patient may express unhappiness in the moment, remind yourself that it's an expression of love if you get all the support your patient needs. Setting realistic boundaries and limits will, simply put, lead to better care for your patient.

Do other things. When you are caring for someone with a major illness, you may start to feel that everything in your life is focused on the illness. My husband and I found that after a while nearly all of our conversation was about symptoms or treatments or doctor's appointments. We made a conscious effort to limit this: we would talk about it for a set amount of time each day then change the topic to other things. Even when he was in the hospital or recovering from surgery, we made sure to watch our usual TV shows and talk about politics and other everyday things. This happened right up until the very end of his life, and it made things so much better for both of us. Maintaining some sense of normalcy, no matter how minor, is incredibly important to your emotional and mental well-being.

Talk To Someone Who Gets It. Many people suggested that I participate in a support group for caregivers. Foolishly, I ignored this excellent advice. I thought I wasn't a "support group type" of person. Later, though, I attended a caregivers' support session at a conference, and instantly wished I had sought it out sooner. There's something amazingly valuable about talking to someone who just understands what you are going through because they too are going through the same thing. You may receive invaluable tips and advice; sometimes just listening to someone else share about facing the same problem gives you tremendous stress relief. There is something particularly powerful about connecting with others who are walking the same challenging path as you. If you don't know where to find a caregiver support group, ask the nurses or office manager at the physician's office where your patient is treated. They should be able to connect you with the right local group for your situation.

I know that these suggestions may be very difficult for the caretaker to accept. I know because, at first, I resisted everything I am now recommending you do. I understand the impulse to wear yourself out when you're a caregiver. It seems like an expression of love, and you might feel guilty if you put your needs first. When those feelings arise, pause and remind yourself that doing what's best for your own health is also doing what's best for the patient in your life.