Why I LOVE people living with dementia

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Welcome back to Ask Dr. Mia podcast. And I'm very excited to tell you that this is going to be the last episode of season three. Ask Dr. Mia podcast has been in existence for a year and a half now, because I started in June of 2022. And thank you for all of you who have listened along the way and have shared this podcast with other folks. Just wanted to share some statistics with you all in terms of how the podcast has been going certainly has been a labor of love for me and I have learned a lot along the way in terms of how to record market as well as branching into YouTube video podcast format recently. And even though there are a ton of podcasts out there, over 90% of them don't make it after a year. So I'm very proud to say that we are in the top 10% and that so far there has been nearly 3,000 downloads of the podcast overall with a total of 35 different countries in terms of where people are listening with the majority of them being in the United States, which is not surprising. This is going to be episode number 34, even though it's broken into three different seasons. And today I'm going to talk to you all about why I love working with people living with dementia and their caregivers and family members. A lot of times people have asked me, oh, I'm not sure how you could do this work. And I am no angel on earth, but I do want to share with you kind of how I got into this work, my inspiration, and some very powerful poems that have captured a little bit of what I am excited about and why I keep coming back to the relationship with folks who are living with memory loss and their family caregivers. Let's start from the beginning. I think I may have mentioned in a previous episode that I love doing house calls. And one of the couples who really inspired me was when I was a second year resident at Johns Hopkins Bayview, taking care of people who are homebound, who have difficulty leaving the home independently, either because of physical or cognitive difficulties. And the story of Bill and Pat have really left a strong impression in my mind. And I think of them often because not only are their story. Particularly, you know, heartwarming, but I also see it replicated in a lot of families and a lot of caregiving relationships. And I think the work. that I do is to really honor the ordinary, extraordinary-ness of what people put into caregiving for someone who has memory loss. So Pat and Bill lived in a real home that's pretty typical in Baltimore, where there are two stories, and their home was always meticulous. ended up in Baltimore because he worked for the steel industry, which was very popular, um, back in the sixties and seventies. And Pat, um, was the person who was living with dementia at the time and Bill took care of her in their home. And they also had a dog, um, a Shih Tzu who always barked whenever I came by and sniffed my leg and my house called bag. And Bill, in particular, like many other caregivers, took care of Pat's many needs as the years progressed. As her decline deteriorated, Bill took on more and more hands-on care, including even helping her go into the bathroom and toilet. Pat sometimes had difficulty having a bowel movement or didn't. didn't quite know how to push using her stomach. And Bill would tell me that he would actually help squeeze her tummy when she's going to help her go, not because she was constipated, but just because that was something she had difficulty doing. And their love was so powerful that He really didn't even think of this as something extraordinary, even though I did. They slept in the same room, but in two different beds. And Pat oftentimes liked to sleep in the morning. So when I went to see them, she was oftentimes still in bed in her pajamas. And sometimes when Bill came and, you know, showed me to their room, Pat would get confused. about who he is and ask, Daddy, who is this? And he would lovingly reassure her that I am her doctor and here to see her. As time went on, Pat became more and more confused, but there were also some moments where Bill could see the person inside of her, even if her memory was declining. The passing of their dog, the Shih Tzu, preceded Pat's death by only a couple of months. And even after Pat passed away, I still kept in touch with Bill. When I became a geriatric fellow, I had the opportunity to teach a course to the Johns Hopkins medical students who were just about to finish their medical school curriculum and about to go into... internship and residency. We talked about dementia, delirium, and depression, the three D's, and I invited Bill to be a speaker to share with them his experience in caregiving and how the home-based primary care helped him keep Pat at home longer. At the time, I was pregnant and quite hormonal and emotional. And Bill really just pointed to me during the talk with the medical students and said that the main thing that he wanted the students to take away is to care. And he read the following poem called Do Not Ask Me to Remember by Owen Darnell. and you can find this on Google and I'll link it in the show notes. And when he finished reading this poem, I burst into tears and had a hard time collecting myself to continue with the lesson. But I think it was a really powerful lesson to new doctors because there's so much that we cannot cure in medicine. And also there's a lot that we cannot necessarily treat in dementia care. There's a lot we could treat, but there's also a lot that we cannot. But something that we could always do is to care. So I will now share with you the Do Not Ask Me to Remember poem. Do not ask me to remember. Don't try to make me understand. Let me rest and know you're with me. Kiss my cheek and hold my hand. I am confused beyond your concept. I am sad and sick and lost. All I know is that I need you to be with me at all cost. Do not lose your patience with me. Do not scold or curse or cry. I can't help the way I'm acting. Can't be different though I try. Just remember that I need you, that the best of me is gone. Please don't fail to stand beside me. Love me till my life is done. So I think this highlights a lot of what we try to teach caregivers to do for people living with dementia. As their brain changes, the part of their reality and their language abilities change. I like to say that they're entering a different reality. That's not our reality. and that their ability to explain what's happening to them also change. And this is where I like to share a strategy in terms of communicating that I have really borrowed from the work of psychologists in dealing with children. And I think this actually also is really applicable for everyone, even adults. And it's really the concept of A, V, R. A is for acknowledge. V is for validate. And R, which it's particularly important in people with dementia, is to redirect. So an example of what this means is that when you see a person with dementia, being very anxious or fidgety, one of the first things you can do is to acknowledge how they're feeling and to really try to address and name the feeling underneath their behavior. Oftentimes it's fear. I don't know what I am supposed to do and so I am pacing or feeling anxious or fidgeting. V is to validate. All of us really love to be validated because it makes us feel heard. So a way of validating would be I can see why you would feel afraid because you can't remember what it is that you're supposed to do. I would be feeling afraid as well. And then finally is So after you have acknowledged a feeling underneath the person who's living with memory loss and validated their feeling by putting yourself in their world, then you can redirect them to something else, another activity, or listening to music, eating some ice cream, doing some art, singing a song. All of these non-verbal or non- speech type of way of expression is particularly important for people who are losing their ability to communicate using words. So once again the abbreviation is AVR standing for acknowledging, validating, and redirecting. And this is just a summary of a lot more other work that have been done by other researchers, as well as folks who work in the dementia space. I think for me, it's just an easy abbreviation to remember in the moment. And also just grounding yourself in that and acknowledging your own feelings that. especially if you're caregiving for someone with memory loss, it's very frustrating. And it's natural to feel frustrated. And so many people feel so much guilt because they feel like they should be more patient or that they should be doing more. And I just want those who are feeling that way to acknowledge that no one is doing this perfectly and that everyone is human. and yelling and, you know, saying things that you later regret is part of the process that everyone goes through. At least I try to acknowledge that in the patients that I see. And I think that next thing really gets into the how to hold space and stay grounded in the caregiving work. Because oftentimes caregiving is so difficult because there is a tremendous amount of grief. And it's oftentimes complicated grief. in dealing with people with memory loss, because you're seeing them change either in terms of their speech or even more significantly in their personality or in the person that they are. And grief is really the other side of the coin of love. And in people with living with dementia, oftentimes that grief is in anticipation. And this is applicable in many other chronic conditions as well, so one of the other ones that I'm personally dealing with is my mother who has ovarian cancer. I mentioned that in a previous episode. I wanted to kind of catch you all up in terms of how she is doing and some of the work. that I have been personally working on in terms of processing my own grief. And so she was diagnosed with ovarian cancer a little over a year ago, actually three months after the start of the podcast. She has gone through surgery. She has gotten through a round of chemotherapy by around, I mean, six sessions, one session a month over six months. And she was put on maintenance therapy and unfortunately, really didn't tolerate one of the maintenance medications. Had a lot of side effects. And I think for me as a physician and as a daughter, things were... kind of moving along after that initial shock of the diagnosis. It felt like there was a plan and that things were moving along. She did better than I expected in some ways in terms of her tolerance for the surgery and tolerance for chemo. Aside from losing her hair, there really wasn't too much side effects. But, you know, a recent hospitalization really kind of threw me in another realization. And I see this oftentimes in moments of crisis when your loved one is undergoing a hospitalization or major surgery or having complications. These are the times when families are really struggling and really... partly grieving along the way. So this most recent hospitalization in the beginning was very confusing because I don't live in the same city as my mom. So there were limited amount of information that I knew. Part of me wanted to examine her like I would for a patient. but I also had other responsibilities here that I couldn't just take off and drive over to see her. And she also had the confluence of her Parkinson's disease and ovarian cancer that really interplayed with each other in this most recent hospitalization after this new round of chemo. She actually prescribed two different nausea medicines. She didn't know which one was which because she had converted the names and wrote for nausea in Mandarin. So asking her on the phone, which one did she take? She didn't remember and didn't know. There were also other medicines that she probably should have been taking, but were not, and were taking potentially up to two different medicines. One day she really had a difficulty walking and it kind of came out of the blue and she asked me what I should do, what she should do, which of course I didn't know, but I asked her to talk with her oncology team and when she called the nurse triage line, she told them that her left side of the body was weaker and that she had pretty sudden changes in her ability to walk. You know, a couple of weeks ago, my brother had gotten married and she was able to, you know, stand and dance a little bit at the wedding. And then two weeks later was when this hospitalization happened. And understandably, her oncologist's team asked her to go to the emergency room because they were concerned about a possible stroke. Thankfully, she did not have a stroke, but this was a medication-induced side effect. Turns out she was taking Reglan or metoclopamine, which is a nausea medicine that has anti-cholinergic properties. And this is where the medicine depletes the cholinergic molecules we all have in our body. And in people with Parkinson's disease, it can make them much more So having more weakness and stiffness and trouble walking. She didn't tell them or didn't think to tell them that she's always weaker on the left side of her body from her Parkinson's and this kind of exaggerated it. I absolutely think the hospitalization was needed to be able to sort out what was going on and to make sure that she wasn't having a stroke or something more devastating. But I think it really did throw me into a new wave of grief. Like many times grief really comes in waves and this one really surprised me because I think it wasn't expected as part of her chemo course or her cancer treatment course. And I was grieving sort of both in anticipation of what might happen in the future. and also grieving kind of the complicated relationship that we have. And this led to a lot of soul searching and work on my own to really process kind of my relationship with her and how I want to get to know my mom as a person with however limited or long time we have left with each other. It really has been some of the hardest work emotionally to do, but it's absolutely worth it. I think the reason why I bring this up is because oftentimes when we are in a caregiving role, and I would say mine is not as stressful as many other people have been through. But not to compare the burden or the severity or the amount of things you do, but really to bring up the fact that there are really complicated emotions at play. And that's oftentimes one of the reasons why caregiving is so stressful. And I oftentimes see it in different families where the person who has memory loss, and the person who's doing the caregiving, whether it's adult children or a spouse, may have had complicated relationships to begin with. And then the diagnosis of dementia really brings a whole nother deeper layer of conflict and confusion and frustration and guilt. And this is to encourage those of you feel like this resonates with you to really get mental health support for yourself. Because I think the more that as caregivers you can stay grounded and stay aware of your feelings and have a way of processing challenging emotions like grief and anger and frustration, you can show up to be the caregiver or the family member or the friend that you want to be. So, I came across this poem that actually was written to respond to the world events going on in Gaza right now. And I will also link in the show notes. where this came from on Instagram, but it's from Dr. Salihah Afridi. It's a letter in the form of a poem that she's writing to her daughter, but I think this is really applicable for a lot of the suffering that we're seeing in the world, whether it's in the people we love or in the people who we don't even know on the other side of the world. So the poem reads, I told her, yes, don't be afraid to let your heart break for another human suffering. In such instances, do not protect your heart. This is what makes you human. But know that it is not for the undisciplined or the faint at heart. If you agree to stay open, to not shut down and to lift these painful feelings, then you have to commit to holding space for your pain. You have to be fiercely self-compassionate and gentle with yourself. You have to pace yourself. I told my daughter, the work of grief is the work of activism and of soul-making. It is deep and profound. It is not about fleeting moments of empathy, but a deep and lifelong commitment to compassion and advocacy. It's a promise to feel the pain and the sorrow of the world and know that you have been chosen. As one of the people on this earth, through which past, present, personal, and collective grief will be addressed, metabolized, and healed, it is a noble act that requires a strong will and a brave heart. I told her, so no, don't stop feeling, because the future of humanity is literally in the hands of people like you. People like you who feel pain when others hurt, who stay connected to humanity when hate seems to be trending. The only hope for humanity is in the hands of people like you who are devastated by what's happening right now. people like you who confront the painful truth about our world and let that truth pierce them deeply enough so that they are moved to do something to correct it. So keep feeling. And I wanted to end that note for this episode and to also tell you all that I'm going to take an extended break after pretty much going nonstop for the past year and a half in making this podcast because I believe so strongly in creating information that more people could access. and that more people could hear the stuff that I was saying over and over in my clinics, and that there are so few geriatricians, it's extra important to me that you get a sense of what I was saying to people who happen to come, be able to come to the office to see me, or I go into the home to see them. But even if I don't live near you, I hope that this podcast has been able to teach you some new things in a way to challenge what you have believed about older adults and new things that are being investigated in research and in policy. So I will come back to the podcast after I go on a family trip to China in the beginning of April. So the podcast will return in mid April for season four, but this is going to be the longest gap in terms of podcast release since podcast started a year and a half ago. And in the interim, I may bring back some older episodes that I think are particularly noteworthy depending on the time of the year. but there will be no new content published until April. So I really appreciate you all listening and following and the support. I would love it if you could review this podcast on Apple Podcasts. If you don't know how to do so, there are plenty of videos on YouTube that kind of walks you through. But you basically go down to the podcast show page and scroll down in a very easy way to type in just a short honest review. It will also be great if you can continue to share this episode with people who you think would find this information helpful. And please come back and listen once I am back. Thank you so very much.