A Guide for Family Caregivers of Loved Ones with Rare Diseases
When Caregiving Is Lonely
Marilyn’s husband of forty years has been in hospice for fifteen weeks. She’s lonely, exhausted and a bit shocked that he’s still hanging on.
Marilyn’s only daughter flew in for two weeks, but had to return home. To bridge the miles, Marilyn took her husband’s picture and emailed it to her daughter. However, the grim image of her Dad’s deterioration had the opposite effect when her daughter recoiled.
Marilyn felt completely abandoned. To her, she is now alone to face her husband’s death.
I had a similar experience when my Mom’s situation lead to years in hospice. When describing my anguish to a friend, she refused to look at a recent picture of my Mother. I put the photo away, deeply hurt and angry that she wouldn’t look. I desperately wanted my friend to “stand with me” in witnessing the painful reality of Mom’s wasting away. I felt deserted by my friend. I had never felt more alone.
As a caregiver, I’ve struggled to find healthy ways to handle loneliness. Some of the lessons I’ve learned include:
Take comfort in knowing that though you feel lonely, you’re not alone. Millions of other caregivers feel this way. It’s the nature of this experience. The only way out of it is through it.
Figure-out what’s causing your sense of aloneness. Like Marilyn, it could come from facing overwhelming or painful situations. Or, you may feel alone because you lack information, professional guidance or hands-on-help. Naming your need is the first step in getting relief.
Reach out for help. When you’re feeling lonely, don’t stay secluded in your own world. Even if it’s hard, connect to others via phone calls, emails, notes or friendly visits. Though it may be difficult, ask others to help with tasks, give advice, share contacts or simply listen. When others give help, they share your burden and you’ll feel less alone. Stretch beyond your immediate circle of family and friends. Online communities, support groups, condition-related organizations and faith communities are examples of the network of people who understand and support caregivers.
Don’t stop when someone doesn’t support you. Turn to others when you’ve been turned down. Don’t be discouraged. Help could come from unexpected friends, relatives, neighbors, co-workers or acquaintances.
Be inspired by the story of how Vietnam POW’s survived three years in solitary confinement. This video: http://bit.ly/gaHUek describes their creative approach to overcoming isolation and loneliness. As a caregiver, have confidence in your resilience and in knowing that all things pass… including lonely feelings. Find ways to communicate when you feel alone.
Whatever you do to connect with others when caregiving is lonely will be good for both you and your loved ones. As you do so much for others, remember to take good care of yourself, too.
Jane Hamilton has been a nurse for 40 years and a family caregiver for 20.