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Caring For the Caregiver

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Why Do I Feel So Lonely?

If you're reading this, chances are you or someone you know is providing unpaid care to another person, possibly a family member, a friend, or a neighbor. For many of these family caregivers, who often come to this work suddenly and with very little training or preparation, caregiving can become a central focus of their lives. While many family caregivers, particularly those caring for elderly parents or spouses, find enormous satisfaction in their caregiving duties, most find it extremely challenging on a physical, psychological and emotional level. And one of the biggest psychological issues faced by family caregivers is feeling lonely and isolated from the life they once knew.

Rose is a 54-year-old elementary school teacher. She quit her job last year to move in with and take full-time care of her mother, Edna, who has had two strokes over the last two years. Edna's first stroke was relatively mild, and did not impede her ability to live independently. In fact, once Rose turned the small den off the kitchen into a bedroom, Edna no longer needed to climb the stairs, and she was quite content living on her own.

The second stroke, however, which occurred almost a year ago, changed things dramatically. Edna now needs assistance with almost all activities of daily living. She walks haltingly with a walker, but finds it difficult to move in and out of bed and get to the bathroom, and has not been able to do her own shopping, cooking, or housekeeping. And it seems to Rose that the less she can do on her own, the more anxious she becomes about being alone. "What started as a physical problem has definitely become a psychological one," says Rose. When Rose saw that Edna could no longer manage her own finances and was getting increasingly confused about her medications, Rose decided to let the lease expire on her own apartment and move in with Edna.

Now that Rose no longer has a monthly rental payment, she and her mom have been able to make ends meet with her teacher's pension and her mom's social security. Plus, she considers herself lucky that she has always had a good relationship with her mother, and they continue to get along to this day. However, Rose is constantly conflicted. She feels good that she is there for her mother and knows that her mother appreciates all she does, but she often finds herself feeling alone.

"When I was working, I had so many interactions with students, parents, and co-workers, and I had a close group of friends that I saw on weekends." At home now, Rose misses the professional relationships she had, and even her friendships have taken a backseat to caregiving. "My friends are always there for me, but I can't get out of the house long enough to spend time with them. I try to do phone calls and keep up on Facebook, but it's just not the same. None of my friends knows what it's like to be a full-time caregiver. Gone are the days when we casually meet for dinner or a movie, or take a weekend trip to Atlantic City."

Many caregivers report that the full-time demands of their work are extremely isolating. Leonard, who has been caring for his 97-year-old mother for the past 13 years, wrote in response to last month's blog: "In the 13-year process I have lost myself. I began to think my name was 'How's your Mom?' People quit calling me to socialize as too often I had to back out."

If you find yourself having increased feelings of isolation or loneliness, please know that these feelings are shared by many others. In the program we run for family caregivers of patients at the Visiting Nurse Service of New York, we propose the following tips:

  1. Try to connect with other caregivers, as many family caregivers report that only other caregivers can truly relate to the difficult situation you are in. Many organizations offer caregiver support groups. At the Visiting Nurse Service of New York, we offer a weekly telephone support group, because we have found that so many caregivers have trouble leaving the house. We have found that one phone call can go a long way in helping people feel connected.
  2. Consider the psychological benefits of continuing work outside the home. As Rose says, "If I had known how lonely I would feel each day, I may have tried to keep working, even if it meant using my salary to pay for nothing but care for my mother while I was at work."
  3. Open up to your friends and family about how you miss your connection with them, and take them up on their offers to visit. Though you may not think they want to come spend an evening with you in the place you're so busy providing care, they may surprise you. And an evening over a cup of tea or a game of cards could make a world of difference.
  4. Look into respite care. Some states and non-profit organizations offer programs in which a volunteer caretaker visits with your family member so you can have some time off to focus on your social life. Though many caregivers are reluctant to trust another person at first, many get comfortable very quickly after meeting the person and seeing the facility with which they handle their family member.

This blog offers a unique opportunity to discuss the issues we caregivers face and to offer each other understanding, advice and fellowship. I invite you to write in to share your experiences and to offer any innovative solutions you may have to combat the loneliness and isolation that so often affect the caregiving community. Check out this Caregivers Unite blog post for more inspiration: http://blogs.vnsny.org/2010/03/17/caregivers-unite/.

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