How Do You Perceive Your Caregiving Role?

An excerpt from The Spiritual Journey of Family Caregiving:

On the assessment form we use to judge a caregiver's level of stress, there's a section about how the person perceives his or her caregiving role. As that section is written, I find it fairly useless for my purposes as a family consultant but it occurred to me the other day that the topic in general is actually quite significant. You see, how a person thinks of themselves in relationship to family caregiving determines how they interpret what happens in that experience and, subsequently, how they respond.

For example, when you think about your caregiving situation, do you think of yourself as a prisoner? If so, your patient or the other family members you think cast you into this role must look like jailers. Within such a perspective every additional caregiving task becomes a symbol of oppression, family interactions become battlegrounds, and caregiving is nothing more than a nightmare to somehow survive.

But what would happen if you changed your perspective? I've met other caregivers who thought of their caregiving as a mission from God. One person even told me that he believed his life was saved from a near fatal heart attack so he could come back and provide assistance for his wife. For him, every new caregiving task was further evidence of how important and needed he was and provided him with yet another opportunity to show his love and devotion. He was proud of his mission and was doing everything he could -- including calling me for respite assistance -- so he could do God's work and be of service to his wife until the day she died. What a contrast!

Most people I meet fall somewhere in the middle of these two ends of the spectrum and many change their perspectives from day to day depending on how they feel or how well their own needs are being met. It's become really clear to me that I can't work with a caregiver well unless I know what mindset they are living in.

My greatest joy as a family consultant is when I can help a person step outside of a life-limiting perspective and choose a more empowering approach. Nobody has to be a prisoner -- on some level caregiving is always a choice. When someone feels like a prisoner it's because they don't want to face the consequences of breaking out of jail. Someone will be mad at them or they might feel guilty if they back away from the job, they might have to put their relative into a nursing home or use resources to pay for in-home care the caregiver was hoping to keep for themselves. There's always something the person doesn't want to face. . . but it's always a choice!

Very often, there isn't anything a caregiver really wants to do to change their situations when they consider the alternatives but they can always change their point of view. "I'm not a prisoner --I chose this life and if I want to change it, I'll just face what I don't want to face and do it !"

Gratefulness and Family Caregiving

Is the glass half full or half empty? It depends on what you choose to focus on. When times get rough you can't ignore the empty part because that's information about what needs to change, eventually, as time goes on. But neither should you ignore what you have left because that's what makes life worthwhile. Who do you love? Who has loved you? Do you have a roof over your head? If things get really bad will you have the family, friends and community support to survive?

Most of my clients are very focussed on what they've lost, as is normal and natural when life is filled with loss and change. But I had a conversation with a friend yesterday that changed my perspective. He's been given a death sentence -- he was diagnosed with an illness that, theoretically, at least, only gives him a few months to a year to live. Of course, he wants to beat those odds and live a long healthy life but he knows -- like all of us -- that he could die in his sleep at any time. He feels healthy enough now so he was trying to decide what to do with his life. Should he take on a long-term commitment to make a particular dream come true? What if he doesn't have enough time left to accomplish his aims? Or should he take the next flight out to the Bahamas and live the rest of his life on a boat in the Caribbean, fishing, drinking rum, with his feet up in a hammock? The answer, for him, was to live with the paradox. To live as if each day was his last while continuing to do the long-term things that those of us who think we have forever would choose. On his deathbed he didn't want to think that he could have accomplished his dream but threw the opportunity away because he was so afraid he might die. AND he wants to enjoy the time he has left. He wants to be grateful for the time he has left and use that time to work towards his dearest life dreams.

That's the paradox we live with as caregivers, too. Yes, we want things to be different and need to plan for and make changes as time goes on. AND we need to find things to appreciate every day because every day COULD be our last. What do you appreciate within the context of being a family caregiver?

This blog is an excerpt from The Spiritual Journey of Family Caregiving.

Give Yourself to Love

"Give yourself to love
If love is what you're after.
Open up your hearts to
The tears and laughter.
Give yourself to love,
Give yourself to love."
--Kate Wolf

My clients have been teaching me some important life lessons. While I consider my job to be about helping people learn to set limits and boundaries so they can take care of themselves better, I've recently had a spate of caregivers tell me the importance of risking it all for a cause you believe in. When the universe sends me the same message over and over I sit up and take notice, so when three caregivers in a row told me about how important it was for them to have made family caregiving the center of their lives despite the toll it took I decided it was time to write about that.

I sometimes have clients who are literally killing themselves to keep loved ones at home. I beg and plead with them to get some rest, to take time off, to let more people help and they refuse. One person explained it to me like this: "I made a commitment to my husband to see him through this time in his life and, by God, I'm going to be there!" Another recounted the story of how her concerned children actually slipped her a sleeping pill without her knowledge to make her get some rest while they watched her husband. Something happened when she was asleep that she wasn't able to be there for and she has resented the interference ever since. She wanted to be there. It didn't matter that other people were there to take care of things for her -- this is what she wanted to do with this time of her life, period!

Many clients have told me how precious they consider the time they spent with their ailing loved ones to be. It's hard, almost unbelievably challenging, and yet something they would not have missed for the world. The studies that worry me about family caregiving show that elderly caregivers over the age of 65 taking care of someone with dementia have a 60% higher mortality rate than elderly people who are not caregiving. However, the latest studies show that family caregivers in general (all ages, all kinds of illnesses) score higher on tests of physical and emotional well-being after their caregiving days are over than those people who have not done family caregiving. The emotional satisfaction and self-esteem that come from having seen a loved one through a difficult time of crisis and transition appear to far outweigh the negatives (if you survive).

What this information has meant for me as a caregiving consultant is that I am far more reluctant to tell a client that she "can't" do what she is trying to do. I still want my clients to take breaks, get other people involved and make taking care of themselves their highest priority because I want them to survive their caregiving experience and actually succeed at doing the best job as caregivers that they possibly can. But I also have to respect that sometimes love demands a person to make sacrifices that seem over the top to those of us who are not in similar situations. Caregivers put in superhuman efforts to keep their loved ones at home, parents stay up round the clock with sick children, lovers leave promising careers, family and friends to be with their beloveds. I, myself, still grieve the loss of having left my native New England to be with my husband, now ex-husband, in Santa Cruz. I grieve my losses but I don't regret the decision because when loving someone means so much you do what needs to be done and, no matter how it ends up, the loving was not in vain.

This was an excerpt from my book The Spiritual Journey of Family Caregiving. Buy it directly from me, autographed, for $14.95 plus shipping.