From Dana Reeve

Caregiving duties cannot be skirted and cannot always be delegated. However, it is important to remember that the job does not have to be performed in isolation and it is vital to reach out and connect to others with similar situations.

Dana Reeve was known for being a model caregiver, supporting Christopher Reeve and their family after he sustained a spinal cord injury in 1995. It was her vision, to provide resources for the entire support system, that led to the creation of the Paralysis Resource Center (PRC) and many other Reeve Foundation services.

Below is a letter from Dana to fellow caregivers:

Dear Caregiver,

After my husband Christopher was injured, it became obvious that paralysis is a family issue. Taking care of our family's' physical, emotional, social and economic needs can be fulfilling and rewarding. But providing care to a person who is paralyzed is a job we don't always expect to get.

We mourn our loved one's loss of mobility and independence. We also mourn our own losses: We feel isolated; we have no personal time; we feel exhausted, overwhelmed. And we feel no one else understands the demands placed upon us.

A caregiver must deal with medical concerns, hygiene, transportation, financial planning, advocacy, and end-of-life issues. Being an effective caregiver means gaining some sense of control over the situation. One way this is done is through information, and by sharing experiences or solving problems with other caregivers.

Please know that you are not alone, that you are extremely valuable, and that you and your family can lead active, fulfilling lives despite the challenges of paralysis. Don't ever be embarrassed to ask our Paralysis Resource Center for assistance. Just call toll-free 1-800-539-7309.

Best Wishes,
Dana Reeve
(written in 2005, a year before her passing)

The role of a caregiver

Helping someone you care for to continue living independently at home is valuable work. Caregiving can be a satisfying experience; it demonstrates fulfillment of a commitment to a loved one. True enough, though, caregiving is not a role anyone really chooses. It seems to choose us, emerging from events and circumstances outside our expectations, beyond our control.

Family members provide the vast majority of care for people who are chronically ill or disabled. According to the Caregiver Action Network, family caregivers underpin our healthcare system in a profound way. More than 50 million people provide some level of care for a loved one, which would translate into annual wages of $375 billion – almost twice as much as is actually spent on homecare and nursing home services combined – if it weren't done for “free.”

As the population ages, as medical science keeps people alive longer and as healthcare policies send people home from hospitals sicker and quicker, the number of family caregivers can only grow.

Caregiving can be frustrating, physically and emotionally draining. It can steal our dreams or break our hearts. It makes us sad for our loved one's loss, and for our own loss. While caring for loved ones can be enormously satisfying, there are days, to be sure, that offer little reward.

The job takes its toll. Caregivers suffer far more depression, stress and anxiety than the general population. Surveys show that up to 70% of caregivers report depression, 51% sleeplessness, and 41% back problems.

Nearly three quarters of family caregivers do not go to the doctor as often as they should, and 55% say they skip doctor appointments; 63% of caregivers report having poor eating habits.

Caregivers feel isolated and often report that their lives are not “normal” or that no one else can possibly understand what they are going through.

There is a financial impact, too. Families helping a person with a disability spend more than twice as much on out-of-pocket medical expenses than families without a disabled person.

Frequently the caregiver must make sacrifices at work to attend to duties at home. But this is your family, your loved one. What are your choices? You can't just walk away. You learn to deal with the frustration while learning how to best get the job done.

The lessons are often learned the hard way – for the most part, caregivers learn by trial and error on how to manage daily routines for food preparation, hygiene, transportation and other activities at home.

"After Chris was injured, we sort of operated as if it was like landing on another planet. It can look very bleak and overwhelming. There's a tremendous amount of adjustment that needs to go on mentally. And facing the new normal, facing the adjustments, the loss…you have to grieve for the loss. Because it's true - the only way for grief to be alleviated is to grieve. You need to acknowledge the loss. But at the same time, once you do that, you're opening up a whole new area where you can have tremendous hope." – Dana Reeve

Some Things Are Unbreakable

Like Dana Reeve, Kate Willette is both a wife and a caregiver. Her husband sustained a spinal cord injury as a result of a skiing accident in 2001. She chronicled their experience in the memoir Some Things Are Unbreakable. Below are a few thoughts from Kate on how she started to navigate her new life as a caregiver.

Your partner gets hurt, and your life is changed because of something that happened to him. That is the hard truth. I remember saying to him, “Come back. Please come back.” And he would say, “I'm trying.”

A caregiver-spouse has to say at some point, “I freely choose this,” in the same way as before the injury happened. And, if you don't freely choose this with your whole heart, I don't see how you can make it, because there's going to be some part of you that is always mad, that always somehow resents this other person for what they've taken away from you.

Being a family caregiver is relentless. You can never, ever really get away from it. It really helps to have a sense of humor; but, I think the most important thing isn't really how you communicate. It's the very basic choice and knowing that no one's making you do anything. If you can accept this, you'll find ways to work it out, whatever it is.

Caregiver: Amy Poullos

Amy Poullos, who lives in Northern California, returned to school and became a nurse. Diving into a new career and competing in triathlons has helped her cope with the accident that caused her husband's disability.

This project was supported, in part by grant number 90PR3002, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy.