Written By: Malissa Carroll, Web Content Specialist
Rudi Lamy, MLS, MAS, consultant to the Peter Lamy Center on Drug Therapy and Aging at the School of Pharmacy, understands all too well the many challenges caregivers can encounter in their role as a health care decision maker for their loved one. As the primary caregiver for his wife, who was diagnosed with dementia nearly a decade ago, he has had to make a number of health care decisions on her behalf as her illness progressed, leaving her unable to manage her care alone.
I interviewed Rudi about his role as a health care decision maker for his wife, including the numerous factors he takes into consideration each time he makes a decision on her behalf and how his dedication to maintaining her health has affected his own well-being. Below, he shares his experiences and offers advice to other caregivers.
What impact does your wife’s illness have on her ability to play an active role in the health care decision making process?
When she was first diagnosed, her illness wasn’t a problem. But, the farther her illness progresses, the less she is able to help me make decisions about her health. We are 10 years into her illness now, and she is no longer able to make decisions that affect her long-term health. Decisions about her short-term health are not a problem, but she doesn’t remember certain elements of her care well enough to allow her to have an impact. I could share information with her or ask her a question at 9 a.m. on Monday, and by 3 p.m. that afternoon, it’s gone. So, while I do try to talk to her about everything, and I try to involve her as much as I can, the actual decision making is on me.
What factors do you take into consideration when trying to make the best health care decisions for your wife?
I have to take into account what makes her happy, what makes my life easier, what makes her healthier, and what is going to cause the least amount of adverse reaction. I want to make decisions where adverse events – such as side effects and hospital stays – will be minimized, but I also have to consider the financial aspects.
For instance, my wife has not had a full set of teeth in the 30 years that I have known her. A couple of years ago, we changed dentists, and the new dentist suggested a potential treatment that I had been previously told was not a good idea. But, he convinced me that we could do it. This dentist was aware of our financial situation, and he made an effort to help us. He also developed a plan that outlined exactly what techniques he planned to use and how much time he would need to complete the entire procedure. Once the process was completed, my wife would have a full set of teeth. Hearing that made her really happy – she was ecstatic. So, when all of the information was presented, I decided that I would spend the money not only to improve her quality of life, but also to make her happy.
How does your role as a caregiver impact the health care decisions that you make for yourself?
When you visit a support group, social worker, or psychiatrist, they will all share the same mantra with caregivers: care for yourself or you cannot care for others. But, it is amazing how many people ignore caring for themselves to focus on the person(s) for whom they are caring. And, I am no exception.
But recently, there have been times when I couldn’t avoid taking care of myself. Last winter, I had nasal surgery to help resolve some headaches, dizziness, and nausea that I had been experiencing. When my symptoms are that severe, I have no choice but to care for myself, because if I don’t care for me, then I can’t care for my wife. But, taking care of myself requires a lot of different decisions to be made and questions to be asked. For my nasal surgery, my wife’s daughter stayed with us to help ensure that my wife had someone familiar to care for her while I was in the hospital, which is critical for her psychological/emotional well-being. However, there isn’t always time to plan for that. In March 2018, I collapsed and ended up in the hospital undergoing surgery for a bowel resection. In that instance, all I could do was arrange for an outside service to provide 24/7 care for her, which wasn’t ideal, but that was the position that I was thrust into. You just do what you have to as each case presents itself.
When health care decisions must be made – both for you and your wife – how do you have those conversations with her?
You must have those conversations very carefully. In my case, I have to be sure that my wife is lucid – that she isn’t in a delusional state, feeling sick, or in any pain. I try to stick to the old KISS principle – keep it simple, silly. I look for the moment that she’s at her best, and keep the conversation as simple as possible. I stay calm. I show no panic, no worry, and I just say, “Look, this is going to happen. We’re going to take care of it, and it’s going to be okay.” You just have to stay calm, cool, and collected.
Are there any resources or tools that you have used to help you have these conversations with your wife?
I’ve been fortunate to have a lot of help over the years. Not only have I worked in the health care arena myself, but I have also had some family members work in that field. There have been a lot of people to whom I could turn and say, “Help me.” We have a primary care physician, pharmacist, neurologist, neuropsychiatrist, and social worker that I can contact and say, “I’ve got a problem.” And, they have all been great about advising me in different situations, laying out the problems and possible solutions, and allowing me to take in all of the information and decide what is best for my wife.
I have also used libraries and online resources. My career taught me how to discern the difference between reliable and unreliable resources. I know that if I’m reading an article from the Mayo Clinic or Harvard Medical School, then I have a reliable source. I know that I can go to the National Institutes of Health (NIH) database, look up some journal articles, and get the public library to download them for me. I have also used resources from Baltimore County, because it has a Department of Aging with resources that are tailored to the needs of the average caregiver.
It’s also enormously helpful to ask your pharmacist. Truthfully, I’ve never met a pharmacist who didn’t know more about medication than any other health care professional, and you can ask them for advice about pretty much any topic.
What suggestions do you have for other caregivers who might be in the same place as you right now?
I have three pieces of advice:
- Don’t let yourself go completely. Back to the mantra: you can’t take care of others if you’re not taking care of you. When you are making decisions for your loved one, you are also making a decision about your own health care – the stresses involved, the travel involved, the late nights and early mornings. You are taking care of two people at the same time. The person you are taking care of might be more important to you, but if you’re not there to take care of them, who will?
- Never be afraid to ask questions. Don’t be shy. Don’t be embarrassed. Just ask. You cannot make an informed decision without having the proper information. You cannot hold it in and try to figure it out yourself. Look for resources that can help you both, such as support groups – places that can help you relax and provide you with somebody to talk to. There is a reason that such places exist. Find someone you can talk to – whether it is a health care professional or someone in your family. You need someone in whom you can confide.
- Cultivate a good relationship with your health care providers. Don’t think of your health care team as people who will tell you what to do. You need to treat them as though they are your best friends. As you do that, also make sure to develop continuity of care for your loved one, so that when you have a problem, you always go to the same sources for advice or treatment. You want to go to one primary care physician, one neurologist, one psychiatrist, and one pharmacy. Try to address all of your health care needs with the same people, so that they get to know you and your loved one, and you can speak to them easily, without any additional stress attached to the conversation.