Caregivers Face Transitions with Loved Ones

Daughter and Father
AMES, Iowa – One of the many challenges faced by people in caregiving situations is dealing with changes that occur in those relationships. Spouses who enjoyed traveling together over a lifetime now may be home-bound. Adult children who enjoyed mom’s home-cooked meals for holidays may find themselves arranging for her daily nutritional needs. These changes and many others lead to transitions that mark the progression of illness or aging, says Cheryl Clark, a human sciences specialist with Iowa State University Extension and Outreach.

“Often the transitions, and the decisions that must come with them, are difficult because they lead to some type of loss. It helps to understand the process we go through when we deal with the transitions,” said Clark, who specializes in family life issues.

Learning to deal with transitions is part of “Powerful Tools for Caregivers,” a series of classes designed to empower family caregivers to take better care of themselves, whether they provide care for adults with chronic conditions or children with special health and behavioral needs. ISU Extension and Outreach offers the six-week series in which caregivers gain “tools” to reduce stress, improve caregiving confidence, establish balance in their lives, communicate their needs, make tough decisions and locate helpful resources.

For information about “Powerful Tools for Caregivers” classes offered locally, contact an ISU Extension and Outreach county office.

“The Caregiver Helpbook, Powerful Tools for Caregivers” explains three stages in dealing with transitions, Clark said: the ending, the wilderness period and the new beginning.

“The transition starts with the ending, the ‘letting go’ of what has ended. You may not want to do this, but you must so you can move on to what is next,” Clark said.

Grandma no longer can grow a garden after years of canning, freezing and sharing her produce with the family, for example. This is a loss for Grandma, who may miss the activity, the joy of sharing and the idea that she can provide for herself.

“It’s also a loss for you, for the image you had of Grandma as hail and healthy, and the product itself, which represents much more than mere food to you both,” Clark said.

Because of a gradual but steady decline, those with chronic, progressive illnesses must cope with a series of ongoing endings. This happens when Dad, who is experiencing signs of dementia, is no longer a safe driver.

“You will manage the change – sell the car, cancel the insurance, arrange for alternate transportation. But the ‘letting go’ may never happen, because Dad’s increasing dementia makes it impossible for him to remember that he no longer drives. It may result in disbelief, sadness or anger each time he hears the news,” Clark said.

During the wilderness period both caregiver and care receiver come to grips with the change and loss.

“You may experience confusion, emptiness, depression, uncertainly and anxiety. This is a difficult stage because most of us want to ‘solve’ situations right away. We don’t like to wander! Give yourself time and be patient with yourself. This period cannot be rushed,” Clark said.

Clark suggests asking some of these questions:

  • What has changed? The person? The situation? Me?
  • What has ended? For my loved one? For me? In our lives?
  • How do I feel about this loss? Sad? Angry? Relieved?
  • What can I do now? Try to change things back? Accept the challenge?

During this time, it is important to maintain routines and structures as much as possible. This gives a sense of predictability.

“Take care of yourself as well, by eating well and getting plenty of sleep. Stay in touch with supportive people. Look for the positive in the change and avoid doing something just for the sake of taking action,” Clark advised.

The new beginning comes after the wilderness and may start as vague or unimpressive.

“You may wake up one day to a subtle feeling that you are ready for something new. You may feel more refreshed and find that you are looking for opportunities. You have begun on a new and still-changing life,” Clark said.

“If you provide care for a loved one, you’re not alone. More than 65 million people in the U.S. provided care for a chronically ill, disabled or aging family member or friend last year alone. That’s nearly 30 percent of our population. Many of these people spent more than 20 hours per week giving care, according to the Caregiver Action Network,” Clark said.
 

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