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Help Your Parents Navigate Dementia | Palliative Care, Hospice & Dementia with Heather Suri

Hi everyone, welcome to joy and dementia my name is Laura Smothers-Chu and I am the CEO and founder of Befriended Heart where I help daughters navigate their parents dementia and These daughters are long-distance daughters like me and they are also providing the Caregiving support so they’re not the caregiver that lives with the parent with dementia But they provide some backup support and I think that it’s a really good opportunity For the daughters to work with their caregiving parents and so I have a Really great guest expert with me today she is going to address the issue of end-of-life care, so I think this is something that we as caregiving daughters are you know know a little bit about and I know I never really knew the difference between palliative care and hospice care and when is a good time to Bring that in for you know, my parent with dementia, so my dad is in the probably mid to later stages more on the leader stages now of dementia, and so these are some things that I’m likely going to be keeping in mind for my situation But I wanted to share those with you. So I wanted to introduce Heather Suri, she is a geriatric care manager at Pathways in Aging which is based in Centreville Virginia and Heather is a really compassionate nurse with several years working in both hospice and palliative care so she is a great person to talk about the difference between the two and Heather and I both work as advocates for people with dementia and their caregivers and we’ve Created a really strong friendship from that. So Heather, welcome to joy in dementia. It’s great to have you here Laura thank you so much for inviting me to talk with you today I really appreciate the work that you are doing her Daughter’s and supporting their parents who are struggling with this diagnosis Thank you. Thank you. You too. Can you tell us a little bit about yourself and your expertise? I know I Introduced you as a geriatric care manager, but I think you’re going by aging life care manager right now Yeah, I you know, I’m a member of the aging Life Care Association, which is a professional organization for care managers and really using that term aging Life Care Manager Encompasses the the kind of breadth of work that we do with people throughout the lifespan But certainly my area of specialty is working with the geriatric community I’ve been a nurse twenty-one years. I’ve always worked in community-based nursing I love working in people’s homes, or the places they call home. So whether it’s long-term care or Home health home care and then of course the work that I’ve done in hospice and palliative care My my favorite kind of Nursing is this one I can do in people’s homes That’s awesome. I love would you you say the place that they call home, too? That’s really great. And can you talk a little bit about your credentials? I know that you said that you’re definitely a registered nurse and I think there was a couple of other initials after that So I am a nurse I’m a bachelor’s prepared nurse. I also am a certified care manager which allows me to practice as an advanced professional with the aging Life Care Association so that Just says that I’ve got the educational the the supervised professional experience and I have passed Credentialing exam that had shown that I’m prepared to do this work Yeah, that’s awesome. I talked to My audience here on my channel about how important it is to hire someone who has credentials because it shows that they have that extra education That’s necessary for this field in my opinion. So Do you have you know, you talked about your professional experience to have personal experience with dementia or as being a caregiver? I do both of my grandmother’s have Dementia diagnosis my mother’s mother Actually died from dementia and my Father’s mother is living with dementia now and I am a secondary caregiver for her I am her power of attorney. I Coordinate her care from a distance. She lives in Washington State so It is very personal To me when you know we’ve gone through relocation with my grandmother you know we she has she’s an alcoholic with dementia and the challenges that Exist there and the ethical questions that come around safety and Autonomy and choice. I think that’s a really hard thing that we have as daughters you know were secondary caregivers is the Balance between safety and autonomy, you know because we want our parents to or in your case You know your grandmother’s to have that independence and that dignity But we also have concerns especially being in the field that we are and knowing about Falls that can happen You know really trying to get that Balance so so Heather you talked about? Your personal experience with dementia. How do you feel like that shaped your career? I think that I have always Had a heart for people who were vulnerable and families that were struggling Certainly the type of work that I chose to do through nursing school revolved around elders and elders with dementia there was one woman that I helped provide care for as a nursing student and ultimately Years down the road. I became her power of attorney and Helped care for her through end-of-life helped me immature care so I think it’s I’ve always seen that need for advocacy and and Families need for support so it’s just always been work that I’d loved what an amazing story that you know you Created such a strong bond with someone as you know, when we were nursing student, that’s really special You know we hear about palliative care and we hear about hospice care and they’re kind of used interchangeably So since we’ve worked in both, I was wondering if you could kind of define You know each word and and compare them for us Sure So how you took care is an approach to care Hospice falls under a palliative Umbrella it is You know, essentially what palliative care is is an approach to care that focuses on relieving suffering Focuses on quality of life and Reducing the the stress, you know the caregiving burden on those primary caregivers Hospice care is a palliative care approach in hospice care. We are focusing on quality of life We are focusing on relieving suffering on on treating Symptoms of discomfort, however, Hospice Care it has a clearly defined time in the lifespan We consider someone to be appropriate for hospice care when they have about a six-month prognosis So we really are looking at you know in general those last months of life how you took care? I believe is an approach that can start really with a with a life limiting diagnosis It’s it’s a shift in thinking You know you can still pursue Curative treatments Under that palliative care umbrella where that might not be appropriate under hospice care situation, so again, if we’re just focusing on quality of life All of our decisions are made with that in mind in kind of care So Heather when you talk about a life limiting? Diagnosis would that be like if someone was to you know in the case of my dad? He was diagnosed by a neuropsychologist that he had mild cognitive impairment So I know you know MCI can kind of go either way But there’s a high chance that it could turn into dementia So would that be considered like a life limiting diagnosis? you know, I don’t know if MCI would be considered a life limiting diagnosis, but Because we know what we know and we do know that a certain percentage of people who are diagnosed with MCI will progress into dementia I believe that advanced care planning is for everyone, but it’s particularly or It becomes pertinent when you’ve received a diagnosis that Indicates that your your cognition is changing And so it’s important to start making those Decisions and those this will help shape what your palliative care will look like as the disease progresses Yeah, that makes sense. And so talked about palliative care as an approach. So basically When there is a diagnosis of you know, it’s kind of up to you when you want to start the approach I don’t think there are any downsides to a palliative care approach Just because it is lessening suffering and increasing happiness, which is like why would you not want that, you know? but I think dementia is especially hard just because you know as far as talking about Hospice You don’t really know when the six-month time is is up. You know what I mean? I think that’s the really hard thing about dealing with dementia is that it’s so unpredictable and there there can be regressions and progressions and you never really know when so like when I guess Can you? Tell us when is a good time like for hospice, like especially if the doctor is not necessarily giving you a six-month prognosis sure, sure, so, you know in terms of hospice criteria, you’re right with you know with the Congestive heart failure diagnosis or a COPD diagnosis or cancer diagnosis the Eligibility criteria is much more clear-cut with dementia It’s a little more slippery. So, you know things that we look at in terms of hospice appropriateness might be Trends that show an increasing dependence in ADL’s and those activities of daily living You know changes in mobility and the person’s ability to Take themselves to the bathroom bathe themselves, you know, those are things that we’re looking at we’re looking at Weight loss we’re looking at Sometimes some labs can be supportive if we look at a serum. Albumin. That is low We’re looking at Falls. We’re looking at skin integrity you know, a lot of those things can paint a picture of someone who is in a general decline and Maybe Infections is another thing we look at someone who’s had more frequent infections, but they may be entering that stage where they’re more hospice appropriate One of the benefits of a palliative care approach if you’re working with your physician on a palliative care approach is that The physician or the secondary forgivers may be able to see those trends Maybe even more clearly than the primary caregiver does because it’s difficult to see the forest through the trees sometimes a Primary caregiver for someone living with dementia, you know So it’s it’s a it’s a stressful role to be and it’s an overwhelming world to be in if we’re considering an invasive medical procedure or diagnostic test That you know part of palliative care is to have those guided discussions about you know if there’s going to be something a procedure that’s going to be painful or require a hospital stay which could be disorienting for your loved one Does that procedure does that test will it help? Benefit their quality of life improved their quality of life Sometimes the answer is yes But if it’s not then why are we doing it? So it’s it’s really Having those conversations and those answers are going to be different for everyone and you know, these decisions are very individual yeah, and I think Especially as daughters. You said that, you know secondary caregivers, you know We as daughters could be the ones that would notice those changes more than our caregiving parent Just because we are a little like we’re I mean, we’re geographically removed from the situation, but Also a little bit more emotionally removed in the sense of more objectives. So could you talk about maybe like say, you know, I’m talking to my mom on the phone and She mentions Something that you know behavior that my dad has done that has not been the case in the past Is there like a question that I could ask her to? Maybe I know we talked in in a previous conversation about pressing pause, which I love. Yes Yes, and I think that’s a really important point to emphasize When people who are living with dementia have Behavior changes, you know changes in behavior a lot of times, you know, but dealing with that change is is stressful some doctors will even jump to Using a medication maybe even a psychotropic? medication to address that behavior kind of as a as a first line and when we are Really looking at someone’s care through a palliative lens We need to dig a little bit deeper so that so that pressing pause is okay instead of saying This is the dementia causing this behavior. We need to look at is there an underlying infection, you know, I don’t know if if you’ve ever had a urinary tract affection But bladder spasms Feeling like you have to urinate and you can you know those feelings For somebody who has some aphasia or isn’t able to communicate clearly what they’re feeling can result in behavior changes mouth pain Can make someone not eat and instead of saying well, they’re not eating because they have dementia there may be a reason pain assessment You know, this is a huge one Sometimes the first sign of pain and someone with dementia is a behavior change. So if we don’t dig a little bit deeper To find that root cause constipation Is another big one? That can cause behavior changes. So we really need to press pause when the stress of that behavior is happening and really start digging around to find what some potential underlying causes might be And maybe bring your medical team and to help you sort that out Before rushing should use a psychotropic medication to treat a behavior a lot of times its avoidable Yeah, can you give an example of a psychotropic medication? yeah, so psychotropic medication is just something that that Changes, you know, it impacts the body by working in the brain. So lorazepam Is a benzodiazepine that is commonly Prescribed in its sedating and it works it works great for anxiety too. However it also can cause Paradoxical reactions somebody can actually make somebody more agitated if you make someone more at risk for Falls It’s a useful tool and and it’s not a bad drug, but it just should be used appropriately and not prematurely Another medication, I see the atypical Antipsychotics are sometimes prescribed for people with dementia. So Seroquel would be an example of that again to treat agitation But if the root cause of the agitation is constipation then the service Urquell is just going to be sedating it’s not you know, and again can cause Right, right. So again those medications I’m not anti medication and medications can be useful tools and they can be very useful Tools with the kind of care approach if we are treating symptoms of discomfort You know medications can be a very powerful part of that But we should always explore Underlying cause of changes in behavior or symptoms for people with dementia first Yeah, and so a way I know You know from my mom when I would have phone conversations and noticed a change in behavior, I would ask, you know, you know Hey mom, that’s interesting. You know, how long has this been going on? or Has heavy but have a chance to bring dad to the doctor to ask about that You know, I think Again, since we are not with it every day, we could notice the differences I think it’s easier for us to see that so I think those are really have I’m a big fan of journaling even yeah Encouraging loved one to to keep a journal because if you have someone I know for me if I’m under stress I’m only as good as the last five minutes right if things have been bad for the last five minutes and my Emotional self think they’ve been bad for the last month and a half, right? So it’s good to have some data to work with so that you can see that objective side of the picture Absolutely, I think when you’re I mean when you’re in survival mode, you’re right Like you’re just functioning in the last two seconds. And I mean that is realistically how you know your caregiving parent is running and that’s totally understandable because you know They’re trying to help their person with dementia survive and themselves survive, right? So you’re not going to be looking to see like what’s the overall pattern here, you know? So that’s how I think that that we can be helpful. I know you mentioned a little bit about an advance I’m sorry advanced care plan. Can you talk a little bit about what that is and why that’s important and I would argue that that’s probably One of the most if not the most important piece of of a plan of a palliative care plan when someone is It has a new dementia diagnosis. They are seeing all of their power kind of crumble away and when you Make decisions about what you want to happen when you can no longer make those decisions You have the power and the time to do it. Now. I have found with the people I’ve worked with it It’s it’s been a very empowering experience that you know, they can use their voice While they can. It’s also a tremendous burden lifted from from a primary caregiver and carrying out decisions that have already been made and and That makes a huge huge difference. So You know when we look at advanced care planning The one that people are most familiar with is a DNR and do-not-resuscitate So if someone stops breathing if their heart stops, do they want CPR do they want defibrillation? Do they want? You know medication to try to restart their heart And it’s important to know how you feel about that decision and to document it But there are so many other things to consider Whether someone wants to be hospitalized or not You know at what point would you prefer not to be hospitalized and prefer to be cared for at home? There is especially in the case of dementia and stage dementia. There is You know almost anything that that would need to be done to enhance. Someone’s comfort can be managed in the home It is only in very rare circumstances that we would need to transfer someone if that’s not what they wanted and When you but you know about dementia is that you know keeping routines keeping familiar spaces familiar people is so Critical to someone’s comfort it’s hard to imagine How you could do that in a hospital room. So most people want to be at home other things to consider feeding tubes Ventilation supported breathing You know there there are all of these a use of antibiotics is another one that that people have different feelings about So I really encourage families to start these conversations You know social workers and nurses Certainly members of a palliative care team if you have palliative care involved in your care those nurse Practice Physicians Members of that team can help facilitate those conversations and it’s not just one conversation. It’s an ongoing conversation but it is Once those decisions have been made you get to carry on with living life and you know as You say Laura finding the joy in dementia How do you have more time more energy more space to focus on the joy? when those decisions when you taking the time to reflect on your personal values What you want and have shared that with your loved ones yeah, and I think you bring up a good point that you know, it’s so much to deal with as a Daughter and also a spouse of someone with dementia if they never specified their wishes Because you have you know, the grief already the I mean I guess for dementia, it’s You know You always have that anticipated grief because you know that they’re going to pass and dementia is terminal and it doesn’t have a cure at this point, but also like just the difficulty, I guess in Having to figure out like okay. Well, what would in my case dad would have wanted you know? and and I have to answer all these questions about feeding tubes and DNR and all that stuff and you have this guilt Because if you don’t make the right decision then maybe that’s not what they would have wanted. And so this just completely gets rid of all that stress You know at in those stages and it just prepares you so well I think and that is actually one of the things that I did when my dad was first diagnosed where we really updated both of my parents wills and I thought that was You know the best thing to do and I actually mentioned that in my very first video on this channel That is one of the most important things to do. So I’m so glad that you agree with that Heather and I think the last thing is we talked about briefly You know picking out a doctor to work with after the diagnosis is made whether that’s you know a neurologist or You know, is it the family doctor? Do they have the training? Can you speak a little bit about that? so I think that there are a lot of different paths to that but I think one thing to consider is Your family doctor may or may not be the right provider to continue to follow someone after they have a dementia diagnosis There are some family doctors that that do have that expertise are up on the current research and treatments, you know You know it do understand dementia and what not just that but for that individual but for their family You know the connection with resources, you know, can they really support the whole family through that dementia journey? So it’s important to ask those questions and not to feel bad If you do need to separate from your family doctor because maybe they’re not equipped to Help you through that journey a neurologist. Some neurologists are very skilled at treating dementia Some of them have great bedside manner too. You don’t often get both my Experience. So if you’re lucky enough to find an excellent skilled neurologist with with you know A lot of experience and and up to date on the current research and also you feel good when you leave their office, that’s pretty if Working with a geriatric nurse practitioner or geriatrician The other thing you can do is you can have your family doctor and you can also layer in and advanced illness management team or palliative care team You’ll find out in the community advanced illness management AI M is a Common phrase that is used for a program that is essentially a palliative care program so here in Virginia there are some companies that do that where they will have a nurse practitioner who has Or a physician who have palliative care expertise come to the home to provide palliative care services With a team and so, you know, you may be able to layer in that expertise Along with your your family physician. So there’s there’s a lot of different options that Is really helpful and I honestly wish that I knew the difference between palliative care that it was an approach versus Hospice because I think you know My family definitely would have taken advantage of that if I had known that it was available so thank you so much for sharing that with us Heather and So we’re doing towards the end so if you had to sum up this interview to one takeaway point that’s specific to Long-distance daughters who are also secondary caregivers. What would it be? so It’s hard to pick just one because there is so much about palliative care and a palliative care approach That is very important to me when working with people living with dementia But I think for secondary caregivers It’s this idea of what I call the test. And the test is is the question Does this decision that needs to be made about? a medication about a procedure about a move Whatever that important decision that we’re making does Improve your loved ones quality of life If the answer is no, it doesn’t then it’s okay to pass on that decision. I Think that’s the most important thing is to keep quality of life the Relief of suffering at the center of every decision that we make Yeah, and it’s okay to say so Heather is saying this very nicely that’s okay to pass in the decision, but she really means saying no so and I think you know, I think sometimes In my case. I think I was more comfortable saying no than my mom was two sustains and so I think that is a way that That we can be helpful and I wanted to add to that to just coming from the daughters perspective You know, we talked earlier about Finding, you know a geriatrician or a geriatric nurse practitioner Who? you know ideally has good bedside manner but also Is up-to-date on the research for dementia And is knows what’s going on and what to look for? So I really think that like that is the role that the daughter can play. You know, we have very much experience Researching restaurants that we want to eat at and reading the new five reviews. We also have more time That is available for us. So even though Whether you know we have kids or we have fur kids in my case You know, yeah, we have full-time jobs and everything, but honestly, we’re not living with the person with dementia and so we really do have more time than our parents do to look at that and so What I would recommend is, you know maybe coming up with three ideal doctors and you know bringing them to your caregiving parent and saying You know in my case. Hey mom, you know, I I found these doctors and I think You know, it looks like from the reviews they have a lot of experience working with patients with dementia and I was thinking maybe you know, um you know in the case of my mom she didn’t want to switch from their family doctor and so They kept seeing the family doctor, but then they also layered in as you were talking about Heather, you know They did a layering in of this new doctor who is up-to-date on the research that I also felt comfortable with There’s always a compromise to be made but I think again, you know That’s why I started this channel because I really feel like daughter’s can can do that legwork on behalf of their their parent both their parents actually and And I think to just like have the conversation have the conversation about you know, hey dad You know, what do you want on in the future now that you have this diagnosis? I want to make sure that you know mom and I are making The right decisions for you and and what you would want and I think it’s one of those things and Heather I’m sure you’ll agree. It’s like it’s one of those things that you dread having and You know because no one wants to talk about death, but then once you have it and you just feel uplifted, you know Like something has been lifted off of your shoulders and I know that that’s how I felt when I had the conversation with my parents and Yeah, so I think that that is super important too if you’re going to take anything away from this conversation So, thank you so much for being on joy and dementia Heather and where can we find you? Do you have a website or an email? Yeah, so my website is pathways in aging com I do write a blog there and you can find more information about our services. I would also recommend Aging life. Georg is a website for the aging Life Care Association the oppression association where you can find more information about the role of care managers The ethical code that we adhere to and also find someone in your area To work with if you do need help coordinating care help finding a doctor You know help with resources in your community To support your loved one. That’s also another thanks for mentioning that because I know I do have some viewers that are outside the DC area of course, and I think we even have some international viewers, so You know I would just say we have something in the US called the area Agencies on Aging That are in each location and I think Canada has something similar Definitely check out the website that the two websites that Heather mentioned and I will put those in the description below and Awesome. Well, thank you so much Heather for joining us and talking with us about this really Important topic Thank You Laura. Take care and Thank you so much for tuning in to my channel and I would love it if you can subscribe And watch some more videos. We’ll have a another guest expert next month. So I

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