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,
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.
When I was a caregiver for my mother I discovered that she didn’t need to be entertained or be active. I sat in the same room and wrote or read. She sat there and occasionally would look to see if I were still there. I had the tv on at times. It was good to be a friend with silence.
Giving a caregiver a few hours of respite care is a joke. Caregiving, more than being a physical task is more emotional, psychological and mental so respite care means days of respite.
Here’s my wish list (from reasonable to utopian): have a meal delivered to my home at least once a week so I don’t have to cook that day; deep clean my mom‘s apartment (all the cat hairs!) every other week; come stay at my house to caregive for one week every 3 months (that’s about my breaking point) so I can run away and re-energize (my kids all live off-island but do come home to help when possible); have extra $$$ to hire respite workers when needed or to send mom to day care; having a sister who isn’t awol and is responsible and actually cares.
I have been a caregiver to my parents for 10 years. My brother was unable to help as he had MS. He passed three years ago. There is no other family support except occasionally. I retired when I knew my parents needed more help. My mother was unable to drive safely outside of our small town and my father was blind and could not be left alone. There was ten years difference between my mom and dad.
The VA, office for the blind and visually impaired, and the office for the aging were very helpful. The focus started on my dad, but as time wore on, it became evident that my mom’s judgement and ability to be a caregiver was decreasing . She was very much in denial about dad’s abilities and her own and there were increasing safety issues. This seriously impacted our relationship and dad told me I was going to just have to do what I thought was right. Luckily my dad was a very successful business man and had invested wisely over the years so money for their care was not an issue. The issue became the lack of caregiver resources in our area. After my father died, the caregivers I had set up through a local agency were removed and we have been on a waiting list for 3 years. My mom is now unable to care for herself. Her dementia/Alzheimer’s increases daily. We went against the advice of our lawyer and accountant and hired two caregivers on our own. We pay them 25.00 an hour. One comes for an hour and a half in the morning and evening to provide meds , breakfast, and personal care Mon. through Fri. The other comes at noon to do meds and lunch and cleaning. Mon through Sat. I come down daily with the mail, to manage the cameras, check the caregiver communication notebook, and check on mom. I pay her bills, manage finances, get her groceries and take her to dr appointments. I take her to get her hair done and out to lunch and to church weekly. Recently she has episodes of verbal aggression and refuses to cooperate with me, even refusing to eat if I provide the meal. Often she will feed it to the cat. We don’t get away much and the caregivers have no extra time to give. We are fortunate in so many ways. But Our concern is if we get sick….no back up. And as needs increase, no additional caregiver time. She refuses to consider living with us.
Being a caregiver is tough, Please remember to care for yourselves. In difficult times such as these, it is often very easy to forego self, please try to take a few moments daily to love and care for yourself. Remember you are important and need love and care too!
Lifting my mom out of bed, getting her in and out of a vehicle is a challenge on my body. Even though I think I know the proper way to do it some days are difficult. Circumstances change according to how much she is able to cooperate and also depends on how my body feels for the day! Acupuncture treatments and massages are necessary. Yoga, qigong, aqua exercises and a proper diet are all important for me to maintain fitness for caregiving. Finding a balance and schedule to do these things for yourself is as important as the time you give for caregiving. It’s not a perfect world for caregivers and we rely on God’s grace and guidance!