Panel Moderator: Robin Riddle, CEO of Brain Support Network and Coordinator, Stanford Parkinson's Community Outreach
Lyn, former caregiver to his wife
Gene, current caregiver to her father
Sybil, current caregiver to her husband
Jeanne, current caregiver to her husband
Linda, former caregiver to her father
Video Apologies - the video quality is rather poor!
In mid-October 2023, Stanford's Lewy Body Dementia Research Center of Excellence and Brain Support Network co-hosted a hybrid symposium on Lewy body dementia (LBD) caregiving. The symposium concluded with a panel of five LBD caregivers. As a group, the panelists had years of experience caring for parents and spouses with LBD. They shared their thoughts on the value of caregiver-only support groups, hiring in-home care, placing a loved one in a care facility, hallucinations, delusions, intimacy, medication management, and coordinating care among multiple friends or family members. Below are my paraphrased notes on each question posted to the panelists, and their responses.
-- By Jordan Dagan, Stanford Parkinson’s Community Outreach
Lyn was a caregiver for his wife, who passed away several years ago. He highly recommends caregiver-only support groups.
Gene’s mother is the primary caregiver for her dad, who is diagnosed with Lewy Body Dementia (LBD). Gene and her husband help her mother with multiple daily activities, and Gene finds herself caring for both her parents. Gene and her mom are currently processing their grief over Gene’s father’s declining health.
Sybil’s husband was diagnosed with LBD in 2014. Around 2018, he lost his driver’s license, and his care needs increased. During the 2020 pandemic, she couldn’t get help to care for him, especially since she was not comfortable with other caregivers in their house. In 2021 Sybil enrolled her husband at an adult day care facility, and he loved it there! It was still difficult to find in-home help for the times he was at home, and Sybil’s daughters advised Sybil to place her husband in a care home. Sybil did this, and it was a good decision in the long term, partly because she was diagnosed with cancer some months later. Her husband likes the care home so far.
Jeanne was most challenged by her husband’s delusions, especially when he felt as though she was an imposter, and that his house was not his own. He hallucinated people trying to steal his wife’s wallet, and tried to keep her cards safe from thieves by taking her cards himself. Jeanne tries to be supportive and validating, and to remember that “this is not him, it’s the disease.” She’s taking it day to day, and placed him in a care home early in this year.
Linda’s father had LBD, and passed away several years ago. Her father’s hallucinations caused her mother huge amounts of stress, but over time she adapted. At one time, Linda’s mother called her to say “apparently I live at the zoo, because there’s a zebra in the bedroom!”
Question for Lyn: How was your wife diagnosed with LBD, as opposed to PD?
Lyn: We talked to a neurologist about the cognitive issues my wife was experiencing, since PD is a movement disorder. My wife’s dementia symptoms coincided with motor symptoms. She used to be very good at functioning in stressful situations, but because of her cognitive symptoms she couldn’t do that anymore. She left work because of that struggle, long before we asked a neurologist for their opinion on her cognitive impairment.
Question for Gene: What can you share about hiring in-home care?
Gene: For my mom, thinking of a stranger in the house was extra scary, on top of the stress she experienced from being a caregiver. My mom wanted to carry the strain for her husband, and the grief she’s processing makes it difficult for her to accept help. It’s hard for me to see her struggling on her own. She currently has in-home help a couple of hours per week, and she’s still struggling. I’m trying to keep my mom afloat.
Question for Sybil: Can you speak about your experience with support groups?
Sybil: Attending support groups was the best thing I could have done! It’s a huge comfort to know people who have been through similar experiences, and to be able to share my experiences with those who are new to caregiving. It feels very discombobulating to be a caregiver. I started attending a support group for caregivers of people with PD first, then added an LBD support group to my schedule. Then I collaborated with a group of my friends from church to start a book group, which became its own kind of support group.
Question for Jeanne: Can you speak on intimacy with your husband?
Jeanne: Since placing my husband in a care home, I’ve been very sad not to have him close by. After decades of marriage, my love for him is strongly rooted, and it’s hard to be separated from him. It’s hard to deal with my emotions around lack of intimacy, and it adds another layer to my stress as a care partner.
Question for Linda: Tell us about your experiences finding culturally appropriate persons to provide in-home care.
Linda: My family went through many in-home care helpers. Because of the culture they were raised with, my parents' expectation was that I would take care of them personally. It was better for my mom and dad, who were native Spanish speakers, to have a nursing assistant who understood them and their culture. My mother trusted the caregivers more when she could talk to them fluently and relate to them. One nurse became like a granddaughter to my father.
Question for Lyn: You’ve had lots of experience with medication management. Can you speak on this?
Lyn: My wife was diagnosed with PD in 2000, and died early 2020, so I have about two decades of experience managing her medications. One dopamine agonist called Mirapex produced lots of problems for my wife. She experienced lots of side effects, including edema, skin problems, and irritability, each of which was being treated separately, leaving her with a seemingly endless list of prescriptions. Later, she was placed on an antipsychotic sedative, Seroquel. It helped for a few months, but then stopped working. It also had a paradoxical effect on my wife, and she became very combative. At one point, I had to get my wife downstairs using the stair lift, and she fought me, and I got hurt. I advise caregivers to be suspicious of medications, and to write down any symptoms or side effects your loved one experiences. I started a log of my wife’s symptoms and medications, which became extremely valuable to her care.
Question for Gene: You’ve previously mentioned that, “the whole family can’t be overwhelmed.” What do you mean by that?
Gene: Our family is a delicate ecosystem. My husband’s father had PD too, and died a few years ago. That was a different ecosystem from how we're now dealing with LBD. The fluctuations that come with my father’s LBD are intense, and my father also has age-related physical conditions that aren’t related to his LBD. One person can’t do all of it, either mentally or physically. We patched together a schedule.
Question for Sybil and Jeanne: Please speak about your role as a caregiver not being over, even with your husband in a care facility.
Sybil: I have to have my husband’s medications mailed to me, instead of the care facility, so I have to take it to them. I get calls at all hours, and am always unsure what is an emergency and what is not. I have to make quick decisions based on what the staff at the care home tell me. Recently, I planned a week-long trip, but received repeated calls from the care home; my husband fell twice during my trip, and was in and out of the hospital. During this time, he sometimes had nothing to eat or drink for hours at a time, and was not receiving adequate care. He’s in a good facility, but I am still his caregiver. Taking even a short trip or break comes with lots of uncertainty.
Jeanne: I receive frequent calls. The care home staff can’t figure things out on their own, even for seemingly simple things like when my husband is reluctant to take his medication. I am continuously on-call to deal with emergencies. The stress I feel as his caregiver isn’t ever really gone.
Question for Linda: Please talk about the changes to your relationship with your mom as you cared for your dad.
Linda: I wanted to keep Dad engaged with life, but my Mom was afraid he would fall and get hurt. I had trouble physically supporting him when he was unsteady. My mom was very hurt by people’s assumptions that Dad was drunk, and wanted to protect him from other’s perceptions. It became a battle of wills. We decided to sell their home and have them move in with me, which caused its own complications. After struggling at my home for a while, Mom and Dad went back to their unsold house, but they called me daily for help. Then I moved in with them, but was emotionally exhausted being there. Eventually, I came to some agreements with Mom, but we definitely would have benefited from therapy, and a mediator.
Question for Gene: How has fluctuating cognition affected your father?
Gene: My dad’s memory of the past is fine, but his current memory doesn’t function well, and he can’t sequence any tasks. He struggles most with communication; his speech varies so much that at first we thought he’d had a stroke, but he was otherwise “there” mentally, so we knew it was his LBD. His hallucinations are frequent, but they don’t bother him. We’ve just had to adapt.
Question for Sybil: How have you found resources for coping with emotional and physical exhaustion?
Sybil: Caring for him was especially hard when he was at home. I found no resources during covid. I would recommend asking various agencies for help. There are professionals who can help you find care homes with traits that you’re looking for. It was very hard for me to find a care home that offered activities that might appeal to my husband. Athletics were very important to him, so I tried to find caregivers who could engage him in sports. At a caregiving support group, I learned that boxing was a good form of exercise for people with movement disorders.
Question for Jeanne and Linda: What were your loved one’s first symptoms?
Jeanne: My husband had heart surgery, and back surgery the year after that. My daughter said something wasn’t right, but I wanted to wait until he recovered from his surgeries to make a decision. My husband’s neurologist offered testing, and found he’d had cognitive decline. The hallucinations came first, and then became more frequent. Memory changes came later. In hindsight, I realize he had apathy that prevented him from helping around the house. He had no incentive or drive.
Linda: My dad had behaviors like wandering that my mom found disturbing, and wasn't being considerate. When we asked dad why, he couldn’t explain his behavior. He also showed no interest in what he loved. For a while, Mom didn’t share what living with him was like, but eventually she broke down, begging me not to put him in a care home. We didn’t believe it was LBD until we got a second opinion. The doctor we saw at the time said, “you’re losing him,” and at first we thought that meant he was dying.
Question for Sybil: What will happen if the memory care facility cannot care for your husband?
Sybil: When looking for a care home, I wanted one that was approximately halfway between where I lived and where my daughter lived. I wanted a care home that offered activities that my husband would enjoy. The first care facility we tried to get him into couldn’t take him because he had a CPAP machine. Even though my husband’s doctors hadn’t heard of any restriction on care homes’ use of CPAPs, the staff wouldn’t budge on that limitation. The next care facility we approached had no problem with my husband’s CPAP machine. My husband is ambulatory, but he falls a lot, and I know that it takes a lot of time to monitor and guide him. His current care home is nice to him, and offered resources to help manage his falls. He thinks he’s their mentor at work, and has answered the phone at the nurse’s station! They’re great sports about it.
Question for Lyn and Linda: Please tell us about your experiences with end of life care and hospice care.
Lyn: Long before I felt hospice was appropriate, an in-home caregiver said my wife should be evaluated for hospice. The evaluation indicated that my wife was not ready for hospice, but she was signed up for a volunteer program intended for people who will go into hospice. Volunteers visited frequently, and provided great social time for my wife. When it was time for hospice, they were very supportive.
Linda: I received a hospice referral for my father from his physician. Dad graduated from hospice twice, and we had a great experience with hospice! The hospice workers were loving and caring people, and they also spent time with Mom. Dad lost all his muscle tone and became very gaunt towards the end of his life. It was sad to see it happen, and it’s still sad to see old pictures. Dad died at home. He had previously been in a care home, but he didn’t receive his meds correctly, which led to renal failure. My father’s medications not being administered properly made a huge difference to his functioning and well being.
Question for Jeanne: An attendee’s spouse has LBD and doesn’t want home help, but the caregiver needs hip replacement surgery.
Jeanne: I had a knee replacement, and while I was recovering my husband escaped from the facility. I was prepared to cancel the knee replacement, but my daughter stepped up to take care of him so I could have my surgery. Every child plays a different role in how they’re dealing with it, and how they are able to help. My son is a plumber and helps his dad by completing tasks around the house.
Question for Gene: Many attendees want to know what activities are still possible for someone with LBD.
Gene: That depends on how mobile they are. My dad is generally mobile as long as he has a spotter, and doesn’t have a history of falling. My father and I exercise together, go to our favorite cafe, and more. We align our activities with what we both want to do, so I don’t get burnt out. I place lots of value on getting him outside and trying to integrate him with the surrounding community, because I’m aware that he would otherwise be ostracized. I dream of villages where people take care of each other, and don’t isolate those with neurodegenerative diseases.
Question for Gene: Do you show your father old photos or discuss the past with him?
Gene: My Dad can go back to tiny details of the past, and takes pride in holding those memories. He feels he doesn’t have a sense of purpose, so we play to his strengths. Our activities often focus on his interests: plants, sports, technical details, and old memories. If I also enjoy the activity that we do, then we both get further when maintaining our connection as father and daughter.
Question for Lyn: Was your wife at adult daycare at any time? Please share more about that.
Lyn: My wife was at adult daycare while she was still recovering from her bad reaction to the medication Mirapex. She found that the people at adult daycare mainly had Alzheimer’s, which has very different cognitive symptoms to LBD. She had trouble interacting with those who weren’t staff. She took the initiative to do exercise programs and volunteer in the community.
Question: Has anyone traveled by airplane with their loved one with LBD?
Jeanne: Airports are difficult to manage. Traveling is difficult even when a person is at 100% functionality, so it is terrible for the person with LBD.
Editor's Note: Here are two posts on the Brain Support Network blog written by Lyn --