“Doing Good” What Services Does A Caregiver Need?

Melanie became a caregiver “all of a sudden”.  It started two years ago when her tech savvy husband couldn’t use the TV remote control. At 77, he was diagnosed with Alzheimer’s Disease. Things have changed dramatically since then. Now, much of what he says doesn’t make any sense. In addition, he fractured his hip and is unsteady on his feet.  He can’t be left alone.  It has been a huge adjustment for Melanie. She was desperately looking for hired help at home and found a person who was compassionate, skilled, and dedicated.  She was thrilled. But then that person had problems within his own family. He told Melanie he wouldn’t be able to continue the role. She was devastated.

To me as a geriatrician, it’s very important that Melanie is doing well. I’ve previously discussed the importance of “doing good” for frail older adults. Doing good means more than diagnosing and treating a disease. It means providing services that meet the needs of the patient. But what does it mean to do good for Melanie?

If she isn’t doing well, her husband will not do well either. He is dependent on her for both his daily health and overall quality of life.  What are Melanie’s needs?

I’ve looked at many surveys that measure caregiver stress and burden. In addition, much of my time is spent talking with caregivers. But I have little experience as a caregiver. Experience is very different from knowledge. I decided to ask Melanie and other caregivers what services they needed. These are the answers I heard:

I Need Help

Melanie is a solo caregiver. She gets very little help. She describes her previous hired caregiver as having “holy” qualities. He enjoyed talking with her husband and keeping him company. He also had the skills to provide excellent personal care and to communicate well. He became “like a family member”. Not only did he help provide care, he was supportive of Melanie. Melanie is now looking for another person who has those skills. In the meantime, she turns to friends to help. Her family has also come to stay for short visits to provide respite.

I’m Stressed Out

Melanie hasn’t been eating well and is losing weight. She also doesn’t sleep well. She started to attend a support group and states that it is starting to help. There is never enough time. She now prioritizes and schedules time for specific self-care activities. She is developing awareness of what she can and can’t do. She has friends to chat with.

Another caregiver said: “Arghh!!. My husband wants only me to help and no one else. I’m totally stuck”. This caregiver needs to make her own emotional needs as important as her husband’s.  This is like the instructions regarding an oxygen mask on an airplane.  Put on your own mask before you help someone else. You can’t be a great caregiver if you are struggling yourself.

I Want Him to be Happy

Melanie’s husband is restless and feels trapped in the house.  At the same time, he gets tired and disinterested quickly. Melanie sees this and it depresses her. She has tried various crafts with him without much success. She notices that he enjoys going out on rides.

I’m Not Prepared. I Never Know What to Expect.

Melanie was suddenly put into a new and jarring reality. She needed to learn a new way of being around her husband. She is constantly put off balance by unexpected challenges. The Teepa Snow course helped. In addition, she learned skills from watching the hired caregiver. Healthcare systems increasingly use “cancer navigators”. These are people who assist patients who have a diagnosis of cancer.  Unfortunately, we do not have caregiving navigators. The Caregiver Action Network and the Family Caregiver Alliance are national organizations that provide educational resources for caregivers.

I Want Him to be Safe. I Want Him to Get Good Care.

Melanie had a rude awakening when her husband was discharged home after hip surgery. That night he drove off in the car. That was the major mishap but there have been others. Home safety became an immediate priority. Melanie set up an alarm system and other modifications to make the home safer. Melanie specifically mentioned that her husband’s medical care is good. He sees a geriatrician who provides expert medical care and sound guidance.

I’m Worried About the Future

Melanie does not have a strong support system. Family and friends provide intermittent support, but she is a sole caregiver. Finances are a major challenge. She has no backup plan should she become sick. She is worried about the future.

Am I Missing Something?

I’m currently very much involved with addressing caregiving issues in Hawai’i.  I haven’t offered a clear solution to the question: What does "doing good" mean for a caregiver? But we can’t let caregiving be just Melanie’s or her husband’s problem. It is a societal issue, and we must solve it as a community. Please write a comment in the comment section below. Let me know if there are other important needs that I haven’t briefly reviewed.  What else is needed to support the caregiver?

Are you a caregiver? Look at the below diagram. Are there areas in which you need support?

Warmest Aloha,

Dr. Warren Wong

PS: I say it over and over again: There's no one more important than the caregiver in the daily life of a frail person.