It is human nature to fear the unknown. As parent’s remember how you felt after your first child was born? We all feel a lot of uncertainties and unknowns. By the time my third daughter was born, most of that anxiety had left me. However as my parents continue to grow older, I am starting to get the same feeling I had after my first child was born. We all have questions as our parents grow older. What should we expect as our parents grow older?
There’s been a lot of changing demographic going on as we all know and more of us are taking care of our parents and so I’m very excited to learn something about this topic and figure out what’s going to happen to my family and parents.
I hope that in this article I can share some relevant experiences and some thought and ideas.
First I just wanted to share a few minutes of my professional and personal journey what got me to Yale and I think that this makes it so personal for me and what I try to do every day.
My team and I are trying to make it personal so that we are able to include the concerns and all the, you know, the real problems that the young adults and aging adults are facing today.
So this started when my father is a well-known scientist in India, and we noticed some kind of Parkinsonian symptoms but we did not have the specific the balance of medications and the research at that time in India and we noticed that very quickly, he lost a mobility, he lost speech and that was really, that was just so discouraging for the family.
For all of us so one of the reasons for me embarking on this journey as you know that there is still geriatrics, gerontology is still new and this is that the reason is that we have never lived this long before so this was a very personal journey for me, it became a personal passion.
So when I arrived at Yale, Yale was very kind to provide me some tools and some resources to start this program and sometimes I get a little carried away when I write about this topic. I am a researcher not a writer.
This is an extremely unique model what you are one of the very few people in the United States that actually has this model. So what does continuum of care really mean? It means following patients from wellness to illness and beyond.
So imagine knowing your patient when they’re well knowing what the strengths are and then following them when they start chronic disease and then you move on and so you kind of get a picture in the whole journey for the patient.
I hope that you are reading this article because you want to know about how to take care of your aging parents. Some of you are reading this because you’re older adults yourself and some of you are reading because you are a senior care professional.
I hope that by sharing with you my experiences and the research that we will find some common ground. The agenda here is in front of you and I’ll continue to adhere to this for aging gracefully.
In 2002, I attended the United Nations assembly on aging. At that time, everybody from all over the world came for this assembly and people were just completely surprised that there was going to be the greatest ever demographic shift in the history of civilization.
So if you think about it, we have never lived this long before and some of the people predicted it. I’m sure you know why we are living so long, immunizations, and modern health. Today, people don’t pass away from a MI or, you know, heart attack or chronic diabetes or anything else.
We live long but we still need to create that infrastructure for living long. So when I attended the United Nations assembly on Aging and then I compared it to what’s being said in the 2015 White House Commission on Aging, is the same facts are still being talked about what are we going to do with the extended years that we have.
We thought we would retire at 65, 67. Today, some of my 90 year old patients are playing tennis, swimming & in a much better shape that I’m in.
They have a wonderful quality of life and I have 55 year old patients who have chronic disease and who are struggling daily. So age is really no criteria today, the lifespan as as we can all see have increased tremendously.
So what are some of the facts that I want to just start with geriatrics is a new discipline. If you are interested in this field, help us create more policies, help us lobby for this. I love this quote by Andy Roone and if you think about it:
The idea of living long appeals to everyone but the idea of getting old does not appeal to anyone
This is an important fact here, sixty-five percent and above they really occupy, they’re really fourteen percent of the population. However and this is where I want you to think about this, they utilize one-third of the health care services and they utilize half of the physician time.
So think about it when you’re looking at escalating costs, when you’re looking at caregiver stress, caregiver burden. When you’re looking at why is it those physicians are not able to spend and answer all your questions, it’s because of this, and I’ll give you an example.
On an average day, I spend a long time with my patients and guess what; I spend a longer time talking to the family members, to the adult child, to the adult daughter, the son who’s living in Michigan, to maybe some of the health care providers.
So this kind of a care if a patient has chronic disease, if there are complexities then it takes up a lot of time and this is what’s causing the health care cause, the all these other variables that are emanating from here.
So these are the two, you know, ideas that have stuck with me. This is a researcher at Yale that says that how can you, how can you finance a 20 and 30 plus retirement with a 40-year career? This we did not know, we did not anticipate this at all.
When I arrived from India in 1987 to the Yale campus, we were not really thinking about this. We did not think that we will have suddenly all these wonderful years ahead and finally, this is one of my Yale scientists, he’s also my patient and I helped him with his spouse and he said this to me, that given this bonus of 30 years, who is responsible and this is what he is mandating us to do, who is responsible for curing and carrying the conditions and who will help us build a society that we need?
And every talk that I give, I speak internationally, it’s about a call to action to say that if you are interested in this field, if you are a caregiver for a parent and if you are an older adult who needs to be respected, needs to live the life of dignity, then you have to lobby for this. You have to mandate, because in this society and many others, there is a great stigma to aging.
Nobody wants to age. I have a 92-year old patient, the idea I met her the other day and she says you know Rosa, I love coming to talk to you but I’m not aging. I am not an older adult. So aging with grace, this is one of my projects. I do a lot of research at Yale but something that I really wanted to do and I have an offer to write the book but I don’t have time to do this.
So I wanted to share this with you because this applies not only to older adults but also to adult children. I have interviewed about 220 individuals before and then later on, and what are some of the ideas that have been told to us; plan on a long life, life is expensive and I’m going to talk about this.
Destigmatize aging, stay socially connected start conversations. With children, it’s not the time of in front of the ICU, in front of the emergency room that’s where adult children get into a panic and start talking about purpose. Don’t obsess about aging but build strategies and insufficient efforts towards integrated solution. So these are the ideas and thoughts of individuals that I have interviewed over 20 years and I’ve interviewed them when they were in their 50s, 60s and 70s and now they are in their 70s, 80s, and 90s and this is what they’re telling us, start now.
So for adult children, this is the time to start now. So adult children, this is really the crux of the talk, as to how do we find the balance. I was talking with a gentlemen this morning at breakfast and he said that he’s working with a couple of our big corporate partners like Apple, Google, Into it etc., and a majority of these individuals are now seeking time to take time off to take care of their parents. He said that coporations are open to some kind of a coalition where comapanies and health care professionals work together.
So far, it’s been child care we focused on the children and now we are finding that we are working on this. How do we find common ground here? So nine months to nine minutes, this is another, an idea that came to me many, many years ago. This happened to me when I was doing my postdoctoral work here and I would run back to India ever so often just because I had to put an infrastructure in place.
So we planned so much for the birth of a child. We know what hospital we go to, we know who the people will be working with, the team and we plan and we talked and we read books and yet we do not plan. We do not think about this, so you can be a caregiver from, in nine minutes and that’s pretty much the time that suddenly something happens and you never thought about this.
Here is a brief case study I think a picture is worth a thousand words. So this was a young woman that I have been working with lately. She had no idea, she had absolutely no idea that her father had any kind of cardiac predispositions so all of a sudden he has a stroke and he’s in the hospital and her mother who has vision problems relies on the father to do everything.
The father is also her support because she’s working and she’s trying to juggle a young child and older child and her career so all of a sudden everything falls apart. A hospital can be very chaotic if you’re not prepared, so when you have a stroke, you have to think about, okay, what happens next? The hospital will stabilize you but after that, you need to go to a rehab facility and then the recovery can take from weeks to months.
In the meantime, what do you do you have to get the house fitted? You have to think about adaptive equipment you, to think about caregiving, driving to appointments and this is where this young individual is now telling me. I don’t know what to do and I don’t just want to ask questions.
I also want to be able to give you some strategies and solutions. So the sandwich generation, which is probably the one that we are struggling with right now, and I am as I call myself, the foster child of the sandwich generation.
I took care of my mother and my father and they passed away when I was here and then I inherited my husband’s parents who live with us. My mother-in-law passed away four years ago with breast cancer. If she was she did really well with the great therapies here at Yale and then ten years later it came back with a vengeance and so we saw that part.
What happened, my father-in-law who lives with us, he’s an avid journalist and he has predispositions like diabetes and coronary artery disease and he fell and the fall led to a cerebral subdural hematoma which caused seizures and so now, he has care on the clock. So you can imagine what it’s like.
So because I walk these shoes, I understand what it is to be in the sandwich generation which is why our team at Yale will stop and guide you through the journey with concrete ideas, collaborations, thoughts and best practices for those with ageing parents.
So there is a positive thing about the sandwich generation as well, which is the fact that we can count on our parents because older adults are living longer. So we can count on them for support and I think you are aware that the wall street journal is carrying more and more articles about the baby boomers. They are emotionally very stable, & economically well.
Baby boomers now have a great deal of financial worth so parents can be the provider, the supporter for adult, for the Sandwich Generation, however, if you flip the coin, what happens next?
So these are research outcomes of multiple studies being done of younger adults all the way from age 30 to age 55, those who are who are in the workforce and are dealing with elder care concerns, feeling stretched, juggling work, lost wages, this is a big factor because you take time off opportunities.
So a lady who works at Hewlett-Packard told me the other day, she said I took off time when my children were born so I lost some of those opportunities and now I’m having to take so much time off because of my mother who has end-stage renal disease and so I’m realizing I’m going through the same thing.
What’s the difference, she says. I was younger when my children were young, so I had more energy, I had more capacity, I could juggle, and I could do things today. I’m older and my parents are of course, needing that the women showed her maximum responsibilities. I often tell my team that the person that calls me the most is the adult child and it is usually the adult daughter.
So that’s the face of caregiving in the United States, however, I’m happy to say that more and more sons are calling me as well so that’s a, that’s a happy prospect here. Not knowing where to start, this is a question I get every time. Where do I start, who do I talk to, this is, this is an important area that needs a lot of the elephant in the room. Now think about it even if you do not marry, even if you do not have children, we all have parents, right?
Everyone has a parent and if our parents are not alive like when my case, you may have to deal with your partner’s parents, you may have to deal with an older adult, you may have to deal with the same set of variables if you have chronic disease. So I said my team, I could not do this without my amazing team. We spend a lot of time in family meetings; we not have spent a lot of time talking with patients and family members with the physicians with, Multi-disciplinary physicians whether it is cardiology, oncology, and neurology.
How to You Flip the Mental Coin When Supporting Ageing Parents?
It is so hard to transpose these relationships. Imagine all of a sudden up to now your parents took care of you, they guided you have an understanding sometimes the relationship may not be optimal but whatever it is the parents for parents to flip that coin.
I cannot tell you how hard that is and there is so much of research being done about how to get adult children to actually accept the fact that how do you flip that coin how do you start talking about caring for them lack of common ground often impacts care I cannot tell you how many times we are outside the ICU outside the emergency room and siblings don’t see eye to eye so a typical scenario happens is when somebody’s and I always tell my patients and my family’s that that is not the time to plan that is not the time to make good decisions
Hospital can be chaotic, the time to make it is before which is why I’m having this conversation with you. So lack of common ground, a typical situation where the adult child who lives here, who’s been taking mother to the doctor’s appointments, understands the system, probably knows the primary care team and is part of the dialogue. Well guess what?
All of a sudden, the brother arrives from Michigan and says you are doing it all wrong. I know better because I know this data, I know this doctor does that, I know those lab values well. We need to find the common ground, so situations and relationships, so to me and this is sort of my passion, my mandate that when you have a primary care appointment, that is the time when you start talking about, you know, when we all have baseline colonoscopies and baseline blood checks and mammograms then I tell my patients and my, you know, the adult children I work with this, start thinking about this because suddenly it’s going to creep up and suddenly it’s going to hit you so how much do you really know about your, bit of our parents, our physical health conditions.
How much do you know about their emotional health? Have you ever spoken to them? The financial status, the home safety wishes for later life, have you ever had that discussion? Is there anybody who’s an adult child in this room? Have you had these discussions about the wishes for later life?
That is, that is a question that, you know, I asked often. Where will they live if they need help? Where will they live if they need help because remember the cost of home care and many people do not know that Medicare does not pay for custodial care posted discharge.
So the cost of care, hiring someone to help you with activities of daily living can be so prohibitive and most of us do not have those kinds of funds. Have you discussed your plans with your siblings and I think this is to me a typical day. We’re almost on a on a regular basis. I have family members and different adult children calling me to say, you know, and they are telling me different parts of the piece some of them want to know about the financial status, some of them about the home, some of emotional scatter.
So all this becomes an issue. When there is a problem, now I have to say that this does not take away from healthy aging or active aging and when times are good but I’m not here to talk about the times that are good, I work in a hospital setting, I work in a medical setting, so I’m here to really tell you that it’s better to be prepared. It’s better to have these discussions now. Is it easy to have these discussions?
I don’t think so, it took my husband years of coaching for him to actually sit down and speak to his parents and ask important questions.
What are your wishes?
Where would you like to live?
Would you like to go to an assisted living facility?
Would you like to live at home?
What are your wishes?
What about the advanced directive?
It’s just that a piece of paper and do you know how many times even though you have an advance directive?
How many times adult children come in front of the bar or the ICU and say you know what, I don’t want to do this. I need to provide all interventions. This happens so often and that is heartbreaking because that leads to so many other issues. So what does the research show?
That no one creates a plan when parents are well, no one does that. You don’t want to think about it and when you are pushed to think about it, you say you know what, I have time and I don’t want to think about it. Lack of consensus among siblings, siblings become an important issue, so what do you do start now with a discussion? Step into your parents shoes.
We often tell parents to step into the children’s shoes but let’s do it the other way. I like this cartoon which says walk a mile in someone else’s shoes so I think it goes both ways, so think about this for a minute. If you’re an older adult here, if you’re, if you have adult children, think about what it’s like to be the younger adult and if you are in younger adult, think about what it’s like to be the order adult.
Now imagine, I think about this myself. I have an only child and I think that when I’m in my last season of life, am I going to be okay with my daughter telling me do this, do that? I don’t think so, so I’m going to be very resistive and so maybe it’s important to have that conversation now, to say what are some of the common ground?
What are some of the ideas we can discuss? So long distance care whether you are in San Diego and whether you’re in Half Moon Bay or whether you are in New Delhi or in Australia, long distance care, if you’re far away is long distance care and I think that is the majority of the cases that we are getting nowadays, where the either the older adult is living close to Yale or the children are living in Virginia, Michigan and their parents are elsewhere.
To advance planning is rare solutions with family medical team during crisis are hard, so what are some of the ideas that you can really use? If, you know, if you were, let’s say that you have a conversation with your parents and you tell them allow me to come to one of our meetings with their physician, let’s share some thoughts because I love you and I care about you and I want to know what’s happening,
I know it’s not easy but if you tried and you said, mother, tomorrow if something happens and I do not know even what the medications you’re on or I do not know who your primary care doctor is or what are some of your ideas, how will I help you those are the ways to start that common ground?
That start, that conversation, so family meetings are really important and I have a lot of the people we are working with who are accompanying their parents to the primary care meetings to understand what’s happening sometimes they even get the permission to be on my health which is our electronic medical records. To discuss that, allow me to do that.
Now, there is a flip side. It is not so easy, most older adults will say I do not want my children to know what, what I’m going through or what my health condition is and i think it’s all about the conversations is about finding the common ground build on parents trends independence or desire to be independent, okay. Start now. Gain the permission talk to the team, create local networks and by what do I mean by creating local networks?
The neighborhood, if there are friends, if there are people that you know who can help you if you’re not there. Long distance caregiving for your parents can be so difficult, imagine interrupting your work and then going somewhere else and starting that conversation, creating a plan and then coming back. So finding those local networks are, you know, is an important idea here.
Let me share a case study of a 78-year old scientist that I work with. She has a heart condition has fallen once and that fall can be a pretty difficult aspect wants to continue working and the family really wanted to get together. They found it so hard to navigate between disciplines and this is something that we do a lot in our program is help you navigate between disciplines.
Earliers, I said, a picture is worth a thousand words. If you can just remember this one slide as a part of this discussion and just hold on to this it’ll help you make decisions, it help you understand better, so for example, the phase one you can spend you yourself as a 30 year old, as a 40 year old, a 50 year old, you can be in the first module for a few years move to the next and then move to the final one. It depends on exactly your health and your other conditions so what’s the first phase one?
This is the period of opportunity where you are beginning chronic disease. Most of us start chronic disease in our forties, you know, whether it’s some kind of arthritis, some kind of hypertension, you know, borderline health issue. You are productive, you’re well. This is the time to start making those decisions, discussing, learning technology then comes the next one, which is phased to the warning signs if you are an adult child. Be aware of these warning signs which are shifts in health cognitive health is a very important aspect recognizing those in older adults emergency room visit.
Do you know how complicated an emergency room can be? You are there. People tend to get sicker after the emergency room but many times, people will come to the emergency room especially if you’re an older adult because they could not get into their primary care appointment or it was, you know, things that they could not put together in terms of a care plan and the final piece is the end of life, the long-term care.
A lot of my patients go between one and two; they spend very little time there in the end of life. These are the two areas where period of opportunity and the warning signs if you can work out an idea and if you can figure out how to help with these two areas it might be it might be a good way of planning the trajectory of aging. There is no way to stop aging, you start aging since you’re from the time you turn 25.
You know skin changes, kidney changes, changes of the GI tract, you know, senses, financial stability is linked to good choices but that I think is one of the biggest predictors. There is so much of data now and Yale and Harvard are doing a joint study in terms of the data that’s available, that individuals are who have planned ahead who have made good decisions they have the financial stability because that’s what you will need.
Aging is unstoppable. You try as hard as you can but you cannot stop it; however, there is no chronology or timeline. Those of us who are in this field realized that it doesn’t matter whether you’re 65, 85, 75, you cannot have a timeline, and you cannot say that at 70 I’m going to have this you may not you may live up to your 90s and still be healthy or you might start it at 65.
So it depends on your habits, depends on prevention depends on your best practices so the tip the scale in your favor, okay. Help your attitude towards best practices. Why is it that the data in the Wall Street journal is showing that baby boomers today are in such good health, because they have started taking care of their the prevention. They exercise and take the best vitamin supplements. They are exercising, they are engaged there, you know, utilizing all the practices that we heard but nobody did which is why there is such a significant difference in the generations ahead and the generations now and what are these, what are the things that can actually tip it against you?
Illness of course, the resistance, the resistance to change, if I could quantify that, I would tell you that would be a big factor so many of my patients who do not take some of the advice and advice and say you know the weather. It’s a fall prevention whether it’s prevent just health prevention whether it’s taking care of your health engaging in, you know, the exercise engagement, sleep, help heart health resources and the dependents.
These are the areas I want you to think about home safety proactive, care planning, financial planning and managing health. There are multiple aspects of this, you know, just the legal aspect is so important. I asked every older adult, have you; do you have an advanced directive? Have you talked to an elder care attorney or I will ask an adult child?
Do you know if your parents have a or do you have a durable health care plan for your parents and many people say no and I’ll discuss this when we talk about so Stanford. So I have a home technology program you can utilize, so much I mean is the latest thing comma. There are so many apps out there, one of the things is the utilizing the emergency response system so you don’t fall and you know that.
That is a risk, the other is that, there are so many remote monitoring in terms of your blood pressure and glucose and others so that can help so there is please take the time to learn about these the phase do the warning signs if you’re an adult child, the changes in appearance, chronic disease medication errors. Do you know that many of the medications older adults are taken whenever really tested on older adults because we never lived this long before the pedestrian?
Younger adults and as you get older, the elimination, the metabolism, all these changes, medication reconciliation becomes such an important factor loss of Independence and then the interventions knowing your parents health, knowing the hospital, the primary care, even the number of the primary care physician. Who’s the team talking to a geriatric care manager advocacy and home visits are again, a picture is worth a thousand words decisions hard dialogue?
This is the phase three of my journey, family meetings with medical team, delegating responsibilities, palliative care. I’m sure all of you are aware of palliative care there’s a huge area that has hit the circuit now with the physician assisted suicide act that California is now adopting from June 9 and hospice it is, this is the hardest area because you know and I think that is personal information we went through this crisis.
When my husband’s father was in the ICU with multiple seizures and we were told by the ICU team that if he did nothing he would probably pass away but you know what, we did not stop, we did everything, we wanted all the measures and today, he’s with us but he needs 24-hour care Did we do something right?
Did we not, we don’t know these are some extremely subjective question and answers these are you know what Atul Gawande wrote about, has written about and so many other philosophical questions. What happens when you have chronic disease when you have difficulties? How do you talk about these, how do you decide these and I think for me I have to tell you, the adult child telling us that I don’t care, I want everything to be done for my parents in spite of the fact that there could be an advance care directive.
I think these are discussions which we need to have not during a crisis situation, brain health. I want to spend a minute and this has been my area of research we have started a very unique program at Stanford it’s called the memory support program. We get hundred percent of our referrals from Stanford neurology to me, cognitive health and dementia.
It’s a journey like no other and what we provide is we provide a customized care plan to help individuals you can give a patient a diagnosis. There are 30 kinds of dimensions and then what do you do with the care and therapies far away, we still haven’t found the cure yet. How do you help a patient and I think the balance lies with, you know, mild cognitive impairment and dementia, when individuals still know what’s happening but there are so many things that are taken away so this is an area I implore you to remember.
If your parents are showing, you know, differences in terms of short-term memory loss, personality changes make sure you’re doing a good evaluation, good work up so you understand what some of the processes are and what some of the factors you can assist with. Stanford also has started a new National Institute of Health Alzheimer’s disease research center and we are part of that so what we provide is a custom. I targeted support and then family meetings again and prevention, hard brain connection.
Do you know today that the biggest thing people are talking about is protect your heart to protect your brain, blood provide blood pressure, high cholesterol it is, you know, the transient ischemic attacks strokes, these can all impact cognitive health chronic disease. I just wanted to spend a minute here really important to understand chronic disease the monitoring heart disease. There some excellent panels going on today women especially my adult child care giver.
That’s the one that’s running between the children and the parents, they are the ones that start heart disease early in life and they have atypical symptoms they don’t stop, they don’t stop to ask questions, they don’t take care of themselves and then cancer, cancer is the other area that a lot of older adult patients have cancer and just navigating them through this disease is a complex phenomenon so finally to my conclusion I have told you, so many, you know, idea I give any shared ideas and thoughts not all of it is negative, not all of it is positive, it’s a mix because we have to work together to find out what’s going to work for our parents and what’s going to work for us.
So the tips for the adult child is to assess the problem, be a detective, find out what’s happening. You remember my journey slide if there are warning signs, just look for those be aware of those. Understand about elder care benefits at your workplace, build a network of resources, how to navigate the system, honor your parents, independence, accept the realities, sometimes you can’t do much.
You have to accept, I have adult children telling me that I know what needs to be done. I know my parents cannot live with them by themselves anymore. I want them to move in with me, well, that may not be what your parents want. So sometimes you have to step back and understand what the reality is what their wishes are.
Establish limits for yourself, organize, find time for yourself, find a balance as hard as this period is and this is something really wise person told me when I started my caregiving journey, as hard as this period ,is you will be glad that you did what you could. Don’t aim for perfection, just competency, so you may not be able to change a whole lot but at least you did the best you could, be an advocate for your parents specially in a hospital setting, be an advocate for yourself.
The tips for all healthy aging don’t start today. It starts way back and if you started the prevention, if you started some of the best practices way ahead, the sleep bone health diet, exercise, cognitive health, you know, I come from a family where everybody in my family has osteoporosis just because way back in India, there was zero education about how to protect your bones. There are vitamins and minerals that have been clinically proven to help prevent osteoporosis.
There is a very little education because I do a lot of international talks as well as a lot of collaborative research about the importance of sleep; people do not realize how important sleep is. We found some trends in terms of brain health and sleep taking time for yourself except the emotions. If you’re feeling awful because you just had a fight with your brother about your parents, except those emotions work on those, there is no reason to deny those planning ahead, keeping ourselves healthy and independent longer will impact the treatment health costs and quality of life we have.
Understanding the 3 M’s when Caring for Ageing Parents
This wonderful Stanford longevity Center and they talk about the 3 m’s mind, mobility and money. Some mind, mobility and money and mobility is, you know, an important area is that most older adults, you know, the one of the most costliest health condition in today’s medicine is a fall, a fall, is like no other and many times falls can be prevented by medication, reconciliation by looking at the home safety, by so many other factors and if you can prevent the fall because a fall, can lead to fractures, can lead to, you know, hospitalization post-operative problems and so on.
I love this quote when I started my career here in a class. I was I was given this by one of my professors and I thought to myself this was 427 to 346 BC. Think about this and I think it still holds true today that he who is of a calm and happy nature will hardly feel the pressure of age but do him who is of an opposite disposition equally a burden.
So what it means is that that it’s not so much as the age of the chronology it is how you are and who you are that’s going to be so important. If you are an adult child that’s looking for answers, looking for treatment options for your family member here, any other aspect, the team at Senior Living Plans is to help you stay on the cutting edge of new trends and studies regarding the latest information on Senior Living.