I have driven by the orange “No Merge Lane” sign on my commute to work hundreds of times. The drivers who join the heavy stream of traffic have to come up to speed instantly — and stay there. One morning I was thinking about caregivers as I zipped past the sign and realized how often there is no merge lane in the caregiving journey. A health or medical crisis can make any one of us a caregiver overnight. But the good news is that coming together to learn about resources, getting the latest information on caregiving, and offering our peers support, we can stay up to speed and take care of our loved ones as well as ourselves.
Below you will meet Vickie, Judy, Dave and Norris, who are currently caregivers or who have had recent past experiences with caregiving.
Vickie is a long-distance caregiver who lives in northern Virginia. She helped her father take care of her mother, who began showing signs of Alzheimer’s in 2004 and died from the disease at age 82 in 2012. In 2010 her parents moved to Southwest Virginia from Tennessee, close enough for Vickie to more easily split her time between her home and her parents’ home.
Judy has a sister in Texas who is sole caregiver of her mother, who has Alzheimer’s. Judy’s mother wanders during the nighttime making it difficult for her sister to get enough sleep. Judy feels that it is hard to give her sister the support she needs.
Norris is a retired surgeon who was the primary caregiver for his wife of 38 years, who died in 2010. His wife was his surgical nurse. He struggled to get her the medical care that she needed, and is continuing to cope with the grief of her death.
Dave was the primary caregiver for his mother, a fiercely independent woman who died in 2009 at the age of 96. He is now caring for his wife who was diagnosed with stage 4 lung cancer in April 2012.
Carole Todd is director of communications and marketing, aspiring harmonica player, and product of the Garden State.
What was the hardest thing about caregiving?
It is difficult to live well and fully in two different places, and you have an ever-present anxiety that you are not available to provide on-site help if an emergency were to occur. You must anticipate, plan ahead, and outsource for help when you see that it will be needed. It is also so very important to build good relationships with all the people that help care for your loved one. The quality of care is directly related to the bond of a strong team effort.
Not seeing and experiencing the situation for myself. Having to view everything through my sister’s filter. Not being close enough to help out my sister in my mother’s care and the guilt that comes with that.
Three things are extremely hard: 1) Watching my wife lose all of the abilities and talents that she had and losing her ability to know me and eventually losing her own identity. Along with that having to review all of this with the visits to the University; 2) Being unable to accomplish anything in the way of improvement or cure along the way in spite of contact with the university; 3) Near the end listening to her repeat many times a day, “All I can do is sit and wait to die. Why doesn’t someone do something about it?” Hallucinations are very difficult to deal with, and it would be nice to know more about coping with them.
For me the hardest thing about caregiving is patience. “Situations” never, realistically, resolve themselves quickly. They have to play out in their own time. I am, by training and nature, a “study, analyze, determine a course of action, and carry it out” person. In a caregiving situation, you don’t have that luxury. The person being cared for has his or her own pace, and your own may or may not mesh well with theirs. But, you have to recognize that YOU can change YOUR pace far easier than they can change theirs. So, you must be patient and adapt. That, for me, has been the hardest thing.
Our group shares more about caregiving here.