Recently, an elderly gentleman (Jack) came in to see me. Because of his high energy, his positive outlook and his obvious fitness, I was surprised when Jack told me he was near 90 years of age.
Jack was in my office because his wife has Alzheimer’s and is in a nursing home. He had been paying for her care for several years. His financial adviser came in with him, and he was concerned because of Jack’s dwindling assets.
During our conversation, I learned Jack is the sole caregiver for his wife. He checks on her every day. I asked Jack, “How often do you see your wife?” Jack looked incredulously at me. He answered “every day,” as if there could be no other answer. When I asked how many hours he spends with his wife each day, Jack paused and looked down. His financial adviser said, “seven to 10 hours a day.”
One of the concerns we have in elder care is the caregiver. Caregiver burnout frequently occurs, whether the caregiver is providing care in the home or even overseeing someone’s care in some type of facility. So with Jack, I felt my “caregiver burnout” lecture coming on.
Caregiver burnout is a real problem; none more so than dealing with a family member with Alzheimer’s or other dementia. The numbers are strikingly high on the number of caregivers who actually die before the person they are caring for.
Avoiding burnout is critical. As one burns out, not only does the caregiver’s health fail, the caregiving becomes less effective. As a result, the chronically ill person care slips, which causes a need for more care, which causes a greater load on the caregiver, and thus even more caregiver burnout.
We have staff members in my office that are specially trained to work with families to be sure the chronically ill person is getting good care, and is staying as independent as possible. However, the care coordinator knows the key to good care is properly equipping the caregiver. I have learned a lot from our care coordinators. They helped me when I was caring for my own grandmother.
In caring for my grandmother, there were times when I felt like I was drowning trying to address her issues: health care, Medicare, social issues, financial issues, and as well where she could/should reside safely. The care coordinators helped with a road map, as well as with objective feedback.
Some of the things I learned were: everyone needs help; join a support group; use outside resources; take a break; keep my own life outside caring for my grandmother; don’t spend all of my time caring for my grandmother; keep working — it is good therapy; and I don’t have to go it alone. There are going to be transitions. I need to accept them, and there is a time I must let go.
One big issue is when there is a transition of a chronically ill person from their own residence to a facility of some sort — assisted living or a nursing home. Many times, there is a real sense of loss or disappointment experienced by the caregiver.
For six years, I was able to keep my grandmother in her home in Fort Worth. Then after two spells of hospice care, I moved her to assisted living in Hays. It was a long nine-hour drive from Forth Worth to Hays with my grandmother. It was a moment she always wanted to avoid, but in my mind I knew she was too at risk at home.
I remember that day I got her into her room at the assisted-living facility. I had to leave her for the night, sleeping in a place she had never wanted to be. I felt like such a failure as a grandson. Did I really explore every option?
Two things came out of this, things I keep close to my heart. First, my grandmother not only adjusted, but she actually liked the assisted-living facility. She was the Southern belle of the building — everyone loved her and she thought she was being waited on hand and foot. Her health stabilized, and then actually got better.
Second, I discovered I still had a significant role. As my grandmother grew older, she really leaned on me to advocate for her. I was her eyes, ears and nose. With the aid of our care coordinator, we made her a unique individual at the assisted living facility. She was not just another resident.
Whether you are a caregiver for someone in the home or in the nursing home, take care of yourself. By taking care of yourself, you are really taking care of your own family member.
So, when I learned Jack was spending seven to 10 hours a day with his wife, I was going to give him my “take care of the caregiver” talk. Before I did, I asked him why he spent so much time with her. Jack’s response brought tears to my eyes.
“Sir, my wife and I have been married over 60 years. Sometimes she knows me; sometimes she doesn’t. One day she won’t know me, and I know that. But until then, I want every opportunity to spend time with her while she still knows me.”
Jack taught me another lesson.
Randy Clinkscales founded Clinkscales Elder Law Practice in 1985. He is a 1980 graduate of Washburn Law School and has represented clients at the administrative, county, state and federal levels.