Posted in after the diagnosis, Caregiving, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

Caregiving Can Be Lonely

Welcome to Caregiver Friday!

Over the past couple of weeks I’ve attended many conferences on specific diseases.  At each conference I’ve had the opportunity to speak with caregivers of all ages, both male and female and the theme that seems to be universal is loneliness.  Caregiving for someone who is sick or injured is very different than the care parents provide for children.  We attend to every need of an infant because they haven’t learned to care for themselves and developmentally they aren’t capable of caring for themselves.  It’s a different story for someone who is ill.

When caring for someone who is ill your caring for someone who knows and understands that there has been a change and not for the good.  They battle the feelings of sadness and grief as a result of their diminished capacity to care for themselves.  It’s very different when someone is conscious of their dependency and an infant who relies on it because they don’t know any different.

As the caregiver your stuck in between two worlds, the land of the sick (the person you’re caring for) and the land of the well (hopefully the place your dwell).  How do you reconcile these two worlds?  We know that friends and family will support us in the short haul, but what about the long haul?  What if an illness isn’t curable and you’re going to be providing support for many years to come…who will hang out with you that long?

Caregiver networks are crucial because they will be there for the long-term.  Finding ways to connect with someone who will understand the dilemma of being torn between two worlds validates your experience and helps with perspective.  On a personal note, my father-in-law had a massive stroke following open heart surgery 19 years ago.  My mother-in-law cared for him at home for the first nine years and then out of necessity we as a family found a nursing home that would more adequately tend to his health needs.  Why am I sharing this with you?  My mother-in-law has never found a network.  Aside from her three children, she has shouldered this burden on her own.  Her life literally stopped the day he had the stroke.

As the years have gone by my mother-in-law has increasingly retreated into a world of one.  She didn’t create a network and over time her world has become smaller and smaller.  It’s been a devastating things to witness because she has so much to offer the world and the world will never benefit from her gifts and talents.  She’s lonely on many levels.  Her expectation of what her life would be when she married my father-in-law hasn’t worked out the way it was intended.  She never expected to spend the last twenty years with someone who is so different than the man she married.

My hope for you is that you don’t retreat into a world of isolation.  It’s important to your own well-being to keep connected to the land of the well.  It’s vital to your health that you still find joy in the world even when the person you’re caring for isn’t at their best.  I’ve tried to talk with the family about the self-imposed prison my mother-in-law has created for herself.

How do you combat loneliness?  How do you stay connected?

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