James*, a tech CEO in Boston, first contacted Better Health Advisors after his wife, Lynn, was diagnosed with dementia. He retired from his job to take care of her, and initially, he was able to manage on his own. Gradually, her needs became greater, and we helped him recognize that Lynn needed a private aide to assist with her care. We connected him with a great aide that Lynn loved.
When Lynn needed more support, the BHA team helped James come to terms with this. We worked with him to find a memory care facility that felt like the right fit for her. We continue to work closely with James to make sure Lynn gets the best possible care.
James has been actively involved in his wife’s care throughout her illness, and Lynn is still a big part of his life. We interviewed him about his experiences as a caregiver in the hopes that his insights will be helpful to others.
How has your role as a caregiver changed over time?
James: My role as a caregiver has changed as my wife’s dementia progressed. At first, we didn't really understand it. We thought she was just becoming forgetful. Looking back on it, I didn't have the tools to know what to do, or how to handle it. But I tried to be observant and understand what's happening to her. I tried to be supportive without having her feel insulted.
Over the last dozen years, Lynn has lost functionality. I had to do more and more for her. But it was a very slow, long process. After the initial surprise of all of this, I said, “No matter what happens to her, I want her to have dignity and I want to respect her, because if it happened to me, I'm sure she would do the same for me—or more.”
If Lynn asked me the same question twice, I had to learn to be patient. But if you raise a child, you also learn you need to be patient, right? It's an exercise in self-reflection and self-control, and trying to be thoughtful and putting yourself in their shoes. I'm still learning to this day, but it's been a life-changing experience.
How did you and your wife approach treatment?
James: Dementia is such a complicated problem. You don't know what doctor to go to. Do you go to a psychiatrist, a psychologist, or a neurologist? At first, she saw a psychiatrist who prescribed medication to help prevent further deterioration. The medications don’t alleviate the short-term memory disorder, but they can keep anxiety down, which has been helpful, and keep her on an even keel.
Lynn moved into an assisted care facility about a year and a half ago, when I realized I could no longer take care of all her needs. It was just too hard—on her and on me. I had no life for a while; I was just taking care of her. One of the hardest days of my life was when I dropped her off at the assisted care facility. It was just so emotionally difficult. Fortunately, I had great support from my family, friends, and the folks at Better Health. Building a support network is really important in dealing with a problem like this.
What are the biggest challenges of being a caregiver?
James: As I've learned to manage it, it's become less challenging. But what's challenging is that you’ve got to watch this person, and if they're having trouble eating, you can’t dive in and just do everything for them, because then they lose more functionality.
I'm a part-time jazz musician. Jazz musicians improvise, and it's a creative process. As a caregiver, I try to go with the flow and be sensitive to the moments. I think you have to open your mind and say, “Well, if this isn't working, what else can I try?” I think to understand managing someone with dementia, you have to understand who the person is. Lynn is still the person she was; her personality hasn't changed. She’s a charming, intelligent, caring person, but she might ask you the same question three times.
Sometimes in the late afternoon, she has sundown syndrome, which is very common for people with dementia. They get a little agitated, and you have to stay calm and centered, loving and supportive. It tests your patience, but the important thing is to be aware of the different phases of the disease. I'm sure the challenges are different for people with different versions and different levels of dementia.
What is your relationship with Lynn like now?
James: I visit her two to three times a week. I think routine is a good thing to have. I usually visit her around 11:30, have lunch, spend some time chatting after lunch, and leave early in the afternoon, because it's easier for her and for me. It's still hard at times, but I have my wife. I have my own life, and I have life with her. It's important for me to stay connected to her. She's very important to me.
How have you balanced caregiving with finding time for your own needs?
James: After I retired, I was home with Lynn a lot. She encouraged me to go out and do things. I would go for two hours to play golf with my friends and come back refreshed, because I got some stress out. I also practice guitar. I've been playing guitar since I was 12. I played professionally for a few years, and I’ve never stopped playing and practicing. You’ve got to keep your perspective and try to enjoy life.
What advice do you have for other people who find themselves in this situation?
James: Look for answers. Don't give up. There are a couple of things that I've been very fortunate with. I have a great family. My family gets along very well. Everyone loves Lynn and has been totally supportive. If you have a brother, sister, or parents, or people who you're close to, bring them into the process and talk to them. Sometimes you may feel like you're lost and you don't know what to do, and it's important to have someone to talk to. If you don't have someone to talk to, then get a psychiatrist or psychologist. You need support to do this, because it's emotionally draining. It's tough.
The main thing is to remember that despite the dementia, the person that you love is still inside that body. Don’t give up on people who have dementia. People sometimes don’t want to face difficult problems in life, but my philosophy has always been to run towards the problem. Don't run away from it.
*For client confidentiality, all names and identifying details have been changed.
If you need help managing a loved one’s care, reach out to an expert health advisor. In matters of health, having someone outside the family to assist and provide decision support is invaluable. Whether you need support selecting the best insurance plan, finding great doctors, or arranging for long-term care, a health advisor can help your family adapt as loved ones’ needs change.
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