Parenting a Parent with Dementia

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As an adult child of an aging parent, cognitive changes and increased support for my loved one are increasingly important issues in my life. I had the opportunity to interview Shoshawna Rainwater for the My Innermission podcast to talk more about dementia, the impacts on caregivers, and how the shift in roles offers a complex transition moment for families.

Shoshawna has been practicing as a clinical social worker for large health organization. For the past seven years, she's worked as part of a palliative care consultation team that supports people with chronic and serious health issues. But during her career, she's had a deep interest in understanding and learning about dementia, and its impact on the person living with the condition. Shoshawna has also used this experience to focus on the"other patient”, the family and or caregiver who's caring for the person with dementia. In 2020, Shoshawna created her private practice, Rainwater Consulting, which focuses on the needs of people living with dementia and those who care about them. She not only engages in this work in her professional life, but she lives with a loved one in the early stage of dementia, along with her husband and daughter.

We started by talking about Shoshawna’s journey—personally and professionally that led to her work today.  

“One of the things that is true about me is that I am somebody who has long studied and worked to understand the landscape of dementia, and the impact of that on the person experiencing it, and with the family and caregivers that support them.And a couple of years ago, we found ourselves as a family, beginning to get worried about one of my own parents, one of my parents was experiencing what seems like gaps in thinking, but nothing so overt, that that I really knew we were headed down the pathway of dementia. So, this is involving my mom. A few years ago, when we started noticing cognitive changes, like many of us in this situation, we didn't want to see that that was happening. And we wanted it to be anything else. Well, maybe not anything, but it was one of the things I did not want it to be. And I was really hopeful that it was stress related, and maybe depression and mood related. And that's what we could blame some of the cognitive changes on and particularly in older adults, stress and depression can look like cognitive impairment. And so it's one of the reasons it's really important to have a good workup to make sure we're ruling out things that could be more easily remedied or easily remedied than dementia is.”

“And then when they did their really extensive assessment which takes into account the mood and stress piece and they still came back with a diagnosis of cognitive impairment. And it was that was a life changing moment. For me, certainly for her, of course, but when someone is diagnosed with dementia, it has an impact a life changing impact on the rest of the family and the people who care about that person. And so there was some relief and realizing that this is now what we're dealing with. With. And while it was not what I wanted to hear and what anyone who loves her wanted to hear, and certainly which was not something she wanted to hear, once we knew what we were dealing with, it was both sad and concerning. And also, it brought a little bit of air into the room for me.

“Okay, this is what we're dealing with. And now we can get ready for this particular journey. It's hard to get ready for a journey unless you know which journey you're on."

What happened after we received the diagnosis was sort of this cascade of events that led us to where we are today, where I'm now sitting with good learnings that I'll get to in a second. So about a month after we received the diagnosis, we made a very difficult the hardest thing I've ever done, including childbirth, a very difficult decision as my mom's adult children, there's four of us. And we made the decision that we needed to bring Lynn, and take her from that living situation. And stay with my family up in Portland. And I'm not kidding when I say that was the hardest decision that we've  had to make. And the hardest thing that I've ever done, because it was an acknowledgment to that we were taking a dyad that had been together for over 50 years. And saying this isn't working enough to keep it going for it to continue this way. And, her ability to continue, I think just living was at stake. Since August of 2019, she's been living with my family and I so I have a spouse and a young daughter. And so that's really where the learning and the growth and the aha moments have come in.

“There is nothing like the visceral understanding that comes with the lived experience.”

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And you could say that's true for you know, it's hard to connect with people who haven't gone through something similar, I should say, nobody understands you and the way that somebody who's going through it or has gone through it understands you. And I think that's true for things like you know, the death of a parent or birth of a child, those kinds of things. It's just an aha experience that does not come until you actually are living it. So this has been a really interesting because it's almost going on two years. It's been an interesting experience, to live side by side with somebody who was experiencing this disease. And I'm learning how much patience and understanding and how much is being asked of that primary caregiver and an understanding that in any way, and how depleting that experience can be. Even though there are moments of joy and anticipation and connection, lots of moments of connection. It's harder than I thought than I thought possible.

You named a couple different steps of change, I would say that then led to this transition moment but you talked about taking the leap of a diagnosis, where you could put a name to it and say, "Okay, this, this is what we are dealing with right now.” There’s a health change. But then coupled with that, the changes that happened with roles, with you making decisions (with your siblings) for your mom, but then also thinking about taking on the change of becoming a caretaker for your mom, I just think about the changes in those roles. And that's, that is a lot of change, and a lot of transition on a lot of different levels, which I can imagine is very complex, and it definitely could take its toll on an individual.

And, you know, her being here is a life change for her. So she's adapting in a brain that doesn't fully allow her to adapt, and the way she would have, you know, 20or 30 years ago, she's always been incredibly resilient and adaptive, I would say, that is probably one of the things about her that I've admired most is she's very adaptive. And, and so she's adapting. And so we're the three people that live with her. So she's also impacting, you know, the lives of my spouse and the life of my daughter, and some really great ways in other ways that are challenging, because of what this disease what, because of what this disease looks like. It's constant reminder that this is really hard, gives me a new level of empathy, and understanding for the families that I work with. And also, it's just a reminder, you know, I have a better than average understanding of what it takes to be in relationship successfully with a person with dementia. And I still struggle. So I can only imagine families who have not been given tools, and who don't have a team, if it's just one singular caregiver, trying to do this, how challenging it is. And very humbling, and I think, ultimately helps me be a better clinician, I have the lived experience.I'm having haven't had it because it's still ongoing, and I'm having the lived experience.

Let's talk about that a little bit. Because you, you know, you're having this experience in your home life, your personal life, and then your work life is all about supporting families and individuals who are experiencing dementia and cognitive changes, too. So can we talk a little bit first, first, what is the work you do? Like how what does that support look like for families and loved ones who are experiencing cognitive changes?

Yeah. So I will say I wear I wear two professional hats. I've been a long time employee of a large health system. And I work as part of a palliative care team. I partner with either an MD or a nurse practitioner. And we meet with patients who've been diagnosed with a serious chronic progressive illness. And, and we try to meet with the people in their life who are their support system. So when I say family, I just loosely mean the people that matter to them and show up for them. And we try to identify ways to enhance quality of their, of their lived experience. So we know that living with chronic and serious ailments is a really big deal. It's really hard on people and hard on the people who care about the person with chronic and serious illness. And so my job on that team, as part of that diet is to identify the psychosocial the emotional challenges that come with having chronic and serious disease. And there's a lot of emotional and psychosocial challenges that come with that with every disease that I can think of. So that's one professional hat that I wear. And then the other hat. The other hat that I wear is in the last year I created a private practice consultation service, I would say the name of it is Rainwater Consulting, and I work exclusively with patients and families who the patient has, has received a diagnosis of some sort of dementia, which it may be worth pausing for a second and just explaining because there seems to be ongoing challenges and understanding what is dementia and what is Alzheimer's and what it is. So dementia is sort of you'll see lots of images If you were to Google dementia images, you'll see an umbrella. And under the umbrella is dementia. So dementia is a condition not actually a disease. And then within underneath that umbrella you will see different sort of like raindrops coming down from that umbrella and it will have Alzheimer's, vascular, Lewy Body, different kinds different diseases have dementia. Somebody compared it to dementia is like a car. And then the different types are, you know, like Toyota, Honda, different diseases, somebody pointed out that can also be true for types of wine too.

So when I say dementia, what I mean is anyone who has been diagnosed with a disease under that dementia umbrella, and helping families in particular, understand what it takes to survive. And hopefully, I don't know if we can use the word thrive. But to be able to come through on the other end of the disease experience, not absolutely depleted by it, and not heartbroken by it. And I am somebody who really believes we shouldn't make the pain try to make pain prettier. I like just naming things for what they are. But I think there are lots of ways we can make it less bad. Most of the strategies that work for dementia are psychosocial in nature, they're not medical interventions, and they're not prescriptive or pharmacological interventions. The work is really we call it skills, not pills, although there are some cases where pharmacology cabe helpful. And it shouldn't be our first go to when someone's exhibiting a behavior. A behavior is a communication.

When you're talking about the skills that you support people and their families with, are those skills for the individual themselves who's received that diagnosis? Or are they for the family or the people supporting that person, or both?

So the work, I will say the work is primarily with the family, the caregivers, because then the benefit is, is really for both for both the caregiver and the person living with dementia. But it's it is too much to ask of the brain of most people with dementia to understand what's going on with them and ask them to do anything differently. And as such, the work is really on the on the side of the person who is supporting the person with dementia. And that's actually the good news. And what makes it really, really hard. Because we have hold a lot of control.

“As the caregivers, we set the tone for the interaction, we have a lot of influence on how, how the day goes. And helping keep people with dementia out of distress is a big job. And it's and all the work is actually on the part of the caregiver.”

Which is why I appreciate that you name that idea of the “other patient” as someone who is doing all of that work. Can you give some examples of some of the skills that you help families understand or practice to support their loved one?

Yeah, I think there's just a couple of really straightforward golden rules that we can lean on that will like instantly make your life better as a caregiver for a person with dementia. And we'll say the top two are what I hear people describing as the number one rule is just never argue. And which turns out is a lot easier said than done. And that's been a learning in the last two years.Because even though I've understood that cognitively there is a part of me, that wants to continue to tether my loved one to reality, and to kind of argue my point as to why I'm right. And it fails 100% of the time. And there must be something about it in the moment. That feels kind of good for me that as to whyI would actually do it but it never goes well. And so then the number one thing that families can stop doing with their loved one is arguing because We're not going to get our loved one to see it the way we see it. The second thing I think that's really helpful is to help families understand that reality orientation.So tethering people to the reality that you and I experience as people with well brains, or neuro-normal brains does not work. And we end up in a power struggle with people, when we try to read to reorient them to reality. So I would say the arguing piece and the reality orientation piece are two really big things. And we probably, you know, we don't have time in this podcast to go into all the nuances as to why, right, but they're, they're great. And we can talk about some of those resources. There's great literature out there as to why those two things aren't effective and actually make your loved one feel worse. And then actually, when they are worse, it actually makes the caregivers job a lot harder. Yeah. So if we can't find it in ourselves to do it, because we know it's good for our loved one with dementia, we could at least know that, you know, if I do it this way, actually, it's going to make my job easier.

I think one of the other things as I understand dementia is that it's a very sharp learning curve, not only just understanding the skills like those, those two skills are helpful to think about, but that the experience of the person and the cognitive decline changes over time, too. So it feels like a very uneven ground to stand on, and that you may master some techniques that worked for a while, and then you have to adapt. How do you help people understand how to look for those changes? And can you give a little more insight into how those changes typically happen over the over the course of this disease?

That's a great question. The way those changes typically happen, is, is very difficult to pinpoint in terms of timelines. So there are some really, there are concrete things that we know about this disease and how it progresses. But the big unknown is the timeline, when is my loved one going to go from this kind of early, early stage into mid stage where that's really the stage where the more of the psycho behavioral issues come out. So you can look at the averages in the literature about length of experience, with dementia, from onset to death.And you can see they're wildly all over the place. So I think, you know, you can say, five to eight years on average, which then you'll see caveats around like it can be anywhere from two years to 20 years and some types of dementia, some of those raindrops underneath that umbrella can have a shorter prognosis, and then some of the others. So that's another reason why it can be helpful to have a more definitive diagnosis about which kind of dementia are we talking about? Because families need to know, am I I mean, two years and 20 years are both marathons in my mind, right. But if you're asking me to get ready for a two year experience versus a 20 year experience, so there's a lot of unknowns.And there are just functional and behavioral markers that we see that tell us yeah, I kind of think this person is no longer in the early stage, I would describe them now as being in mid stage. And then again, for late stage, which is actually a little bit more evident, because some of the psycho behavioral symptoms that we see often fizzle out. And what we see is more physical dependence versus a body that is anxious and can get up and roam and is a wander risk and those kinds of things. So what I tell families is each one of these stages, early, mid, and late, all require something different in terms of approach, and oftentimes setting and the pitfalls are, are not always evident.And so it's trying to get ahead and plan for plan for the next phase and for safety concerns that are going to come with that phase. And you never know. I mean, I've sat with many families who have had an experience with a loved one wandering and getting lost. And saying I had no idea they were at that point they had never done that before. which is you know, true in every single case no one sort of announces to us dementia ever gives us that heads up that by the way, next Wednesday, I'm actually gonna have my first wandering experience, you should probably got a bracelet on me or no GPS or something like that. So it's them. It's very difficult and in terms of your question around how do we knowHow to adapt to the next challenge? I would say, a good rule of thumb is when do you stop trying what you've been trying is when it no longer works. So people with dementia are a great teachers, they'll tell you, you will know when something isn't working, because you will see it in their reaction. And then it's time to pivot pretty quickly to a different approach. And I think you can still hold up the never arguing and don't reality, or yet as to guiding stars for the entire experience.

We're talking a lot about how the individual changes, I mean, that my podcast is focused so much on personal transitions, isn't usually the experience that the person with dementia understands that there is a transition happening if there are changes happening to them?

That's a great question. And it brings up this concept that Judy Cornish, who is the creator of the DAWN method, she names this challenge in a way that I had not seen laid out before me and helped me really understand that people with changing brains, there's this concept of anosognosia.

“Anosognosia, is this inability to understand or to know that, that your brain is changing.”

 And she talks about the levels of varying levels of anosognosia, and people with dementia. And I think you can have sort of waxing and waning awareness, particularly in the beginning. And I think that some people have full anosognosia, where they are not aware of what is going on. And those are, in my experience some of the trickiest situations to deal with. Because as JudyCornish lays out in her, in her literature, she talks about the fact that if you thought everybody else was messing up, and then blaming you for it, you'd be really, really angry. So people with anosognosia, high levels of anosognosia tend to be angry and frustrated with the rest of us. And you'll see that in their behavioral manifestations. And then people with low levels of anosognosia, who may have that awareness, they tend to present as more sad, and perhaps ashamed and worried. And because they have some awareness that they are losing cognitive abilities, and we really, we really value intellect and in our culture, and it's a very scary thing to think that you are losing the ability to think for yourself and have that rational thought. Yeah, I've long said, I think I think that the people who have high levels of energy signature actually tend to be a little bit happier. Because they don't see that, that they're the problem. And, but but it's hell on families, right? to have somebody who has no awareness that is happening. I don't know which one I would choose.Yeah, honestly, if I had to have higher low levels of anosognosia.

When we think about how roles shift during this time, and this gets back to this idea of the other patient. You've talked about some of the the skills and strategies that people can employ in supporting their loved one, but what are some of the ways that individuals can support themselves if they are either the the direct caregiver to their loved one or just trying to support their loved one through other caregiving means, but what are some of the strategies to if we think of them as the other patient in this experience? What are some of the strategies and skills that that you support them with?

I have a lot of thoughts and a lot of passion around this particular issue because I think, in healthcare, we are doing a really lousy job of helping families understand what's going on, understand what lies ahead and help them get ready for a marathon. And I think part of what I do is basic dementia education for a patient a for a patient's family, about what we're looking at, and what I want to emphasize and try to emphasize with families right off is and with caregivers right off is this is not a one person job.

This will absolutely deplete you if if you try to do this all on your own the jobs just too big. And so we've got a really great geriatrician within the health system that I work with. And she has written a book and talks a lot about the team approach, and has a great graphic in the book around, let's list out all of the people involved in your your loved one with dementia care. So oftentimes, there's quite a few spokes coming out from that circle, you know, you got primary care and specialists and other people involved. And then equally, calling up the importance of having a team for yourself, meaning your physician knows that you are the caregiver, primary caregiver for a person with dementia. and hoping that you're your physician, your own physician understands what that means that that means a huge life change for you. And, and then trying to also fill in the rest of the spokes on that circle with with team members, including a therapist, perhaps a behavioral dimension, behavioral coach, and also with built in opportunities for respite from day one. So that is a very normal practice that you start from the very beginning when your loved one is, is diagnosed, and not something that you try to insert a couple of years down the road when things have gotten so stressful. So I like I like talking about the team approach, because I just I just know from you know, 20years of like anecdotal evidence plus everything you read, it's so hard to do this work. And it's nearly impossible to do it well, just by yourself. So I want people to give themselves permission to pull in a team.

The other tool that's been really helpful for me is Pauline Boss’ work on ambiguous loss.And I think Pauline Boss is sort of the creator of this idea of ambiguous loss, which in dementia means that particular kind of crazy making around the fact that somebody you love is physically present, and psychologically absent. And that that is in and of itself, very difficult space to be in. And I think her work has sort of gotten highlighted through that pandemic, because I think a lot of us are experiencing differing degrees of ambiguous loss and that things are just really challenging right now. But I, I highly recommend her book loving someone who has dementia, it's one of my, my favorite recommendations for families, and it's more highlighted than not highlighted when I look through it. And then I, you know, like any good clinician, I, I let people tell me what they think would be helpful people are the experts on themselves. And helping them really identify what's going to help them survive and be able to get through this situation. I also tried to give people permission to before giving of themselves, if they have to change course, and start doing things differently with their loved one, or bring in, bring in help or even having to have a loved one move. And that gets particularly tricky. When they've been promises made. I always like to tell people, if you can catch them upstream enough, it's I'd like to encourage them, you know, please, please promise intent but not outcome. Yeah. And but sometimes a promise has already been made years ago about I'll never place you. And so working with families around that sometimes it's it's helpful for families to be given permission by others about, you know, if you knew what you were agreeing to 20 or 30 years ago, if you had informed consent, that might that might look different. It's very hard to know, especially because we don't talk about it. We don't talk about this disease. We don't talk about what lies ahead for families. How to support them,I think it's really hard to know what you've agreed to.

I also think you talked a lot about kind of the the self care piece for the other patient to the person caring for the person with dementia. But I also think there's that changing dynamic again of relationships to that if I made a promise to a parent, um, you know, when when they were cognitively well, and now that has changed and my role has changed that as a primary caregiver. I'm almost more of the Parents like it feels more like I am parenting in this moment. How do you have strategies to help people just just recognize and reconcile that shift in their own relationships with their parents do?

I’m a big fan of being able to kind of label the disconnect and actually name what something is. And so I do say you're parenting the parent, which is a really weird role to be in, particularly if it has been a role where the parent has held a lot of the power wielded power and influence through the throughout the adult child's life. And so, I think, you know, it start by naming your parenting your parent, and what a strange place that is to be. And, you know, I think there's also, it's okay to think about your loved one, when they were a, you know, a robust 50 year old, you can still love that person and think about that person, truly as your mom. And now this person who you're living with, or who you're in relationship with, who has dementia is kind of a new person, anew person in your life. And that's that ambiguous sort of holding both of those truths that this is both the same person truly, and also, it's a very different person. And that's a that's just a product of this particular condition dimension is that it does create changes in personality.

Do you have other resources that you would recommend to folks as if they're beginning to ask questions, if they're if their loved ones experiencing dementia? Or if they recognize they are? They are on the path or on the spectrum of dementia, but they are looking for support? Are there resources you would recommend?

Yeah, so we talked a little bit about Judy Cornish’s work. She and her work is relatively new on my radar within the last several months. And it's the best stuff that I've seen in a very long time. And all of this work, I would highly recommend Pauline Boss’ work and I love Teepa Snow's work, she has a plethora of online resources. And she's an occupational therapist, by training has really great practical tips and tools for families about how to provide care for people who don't want the care provided to them. And that's often I think, where  the rubber hits the road for families. And where it's really challenging is they're doing so much of the hands on delivery of those activities of daily living with the bathing and the dressing and the grooming.And there are great books out there great tips around how to make that easier for both of you. And then another set of books that I really like are two books from cafe Lauren Hugh, one is Alzheimer's, basic caregiving. And the other is activities of daily living. This would be my top recommendations at this time.

 Also, in anticipation of joining this today's podcast today, I am not a traditionally religious person, but I threw out a request to the universe around like what would be helpful. And what I actually got back was something from people with dementia who have who have died and gone on. This was what came back to me from the universe, which was, “please remember our personhood.”

And I think it's probably the most critical work we do. And caring for a loved one with dementia is helping them feel safe and secure and soothed and like things don't matter. And, you know, growing older is such an interesting longitudinal experiment because I, I went into work working with elders, because I think, because I had the best experience as a child with elders. They were my source of safety and security. I didn't I never felt more secure than I did when I was in the presence of my grandparents. And I loved that. But to me, even though there were pictures around the house that indicated they had once been in the body of a young person, I really didn't believe it. And this is the interesting thing about getting older is that you like not everybody who's older has always been older. And I still I'm not even sure if I still believe it like but the older you get, you're like no, no, no I think yeah, that's got to be true. And yeah, the truth is we do change. And, you know, I, as you know, a person who has a parent with dementia, I worry that it's also my genetic destiny. I think a lot of us worry whether we have it in our genes or not, we worry about this disease.

“If our guiding star can be elevating and holding up people's personhood, no matter how we evolve as we grow older, that's what I would want for myself.

That's beautiful, that idea of dignity and humanity as we change. Shoshawna can be contacted at rainwaterconsultingpdx.com and her list of recommended reading includes:

·      Judy Cornish, Dementia with Dignity

·      Pauline Boss, Ambiguous Loss

·      Teepa Snow, PositiveApproach to Care

·      Kathy Laurenhue, Activities of Daily Living

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