There are amazing heroes among us. Perhaps you know one or more of them. You may be one yourself. But I’ll bet most people aren’t aware of these heroes – and wouldn’t know about them unless they were involved. I’m talking about Caregivers – men and women who spend their days and nights caring for a loved one, family member or truest of friends who needs personal care for a debilitating physical or neurological disease, often a terminal disease. Many caregivers – perhaps most – are giving up all or a significant part of their own lives to assist their loved one with basic physical needs, emotional support and logistics of everyday living. Since I don’t walk in their shoes, I can’t begin to imagine what it’s like to give their lives for another person. They are uniquely and concretely living out God’s command that we love one another as we love ourselves.
I worry that Vicki doesn’t have a full-time caregiver. Her disease is taking a toll, but miraculously she’s still with us and still living at home. There are a handful of people who stop by and take care of some of her practical needs – sharing a part of their lives with her. A few others call once in a while, but Vicki increasingly feels anxious about telephone calls. The disease is doing that. Her main connections with people pretty much happen through Facebook games – and over time she’s finding it harder to play most of the games she used to.
This past January her kids gave Vicki a puppy – an energetic little Morkie that’s given her so much unconditional love and companionship that in many important ways Vicki is doing better than she was last year. But I still see that the disease is progressing.
Vicki has referred to me as a “part-time caregiver” for her. To part-time I’d add “long-distance” since I live a few hundred miles away. But compared to full-time caregivers I mentioned at the beginning of this post, I feel that I’m a far cry from being a real “caregiver.” I do try to visit whenever I can, but I know that she doesn’t want to be a burden on anyone and sometimes has discouraged me from coming. We occasionally talk on the phone and I watch her activity on Facebook (not in a creepy way) to try getting a sense of how she’s doing. When I do come and visit, I’m able to help take care of some practical things (for example, I recently called her cable company to solve a problem with her TV system). And we spend a lot of time talking – about little things and about bigger things like what she’s not able to do so well anymore. And sometimes we just watch a movie on TV. The “agenda,” unfortunately, is simpler now. But spending time together and doing practical things for Vicki are as important as ever, maybe even moreso.
But the time comes that really separates me from a real Caregiver. My visit with Vicki comes to an end and I drive away, back to my “normal” life with my family and my work, leaving Vicki to cope with the reality of her disease minute by minute, day by day. To be sure, as Vicki and my family know, I love my family and enjoy (most of) my work. But I do wish I could do much more for Vicki. I see that praying for Vicki as often as I do has helped my prayer life, and it’s good to hear about other people that are helping her too.
But the drive home after visiting Vicki is a tough one. Even though I’m driving home to a good place and a great family, I’m leaving Vicki behind, alone. It’s really hard to be a part-time, long-distance caregiver for someone who needs and deserves support and care all the time. Right there.
Jim Coyle
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Don’t get discouraged, Jim. Any moment spent with a loved one is worth so much, even if it isn’t EVERY moment. You are doing a great job. And as the disease progresses, she will still know you and have moments of clarity, even if she can’t voice them. I know because my Dad had this same thing. He knew his family and friends until he left. Every little thing is precious.
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Thank you for your encouragement, Rebecca. I’m so glad I do have chances to visit Vicki and I know these times are good for both of us. Even though I’m back home from a recent visit, the connection is still there.
Jim said:
‘It’s really hard to be a part-time, long-distance caregiver for someone who needs and deserves support and care all the time.’
I understand what it feels like. It’s heartbreaking to leave, and impossible to stay.
My new post about caregivers on Vicki's Voice blog: Everyday Heroes Among Us http://t.co/ucTq3ZUt #dementia #FTD #Alzheimers
My new post about caregivers on Vicki’s Voice blog: Everyday Heroes Among Us http://t.co/ucTq3ZUt #dementia #FTD #Alzheimers