The following is a transcript of The Alzheimer’s Podcast Episode 77. It has been lightly edited for clarity.
I don't want anyone to feel like they need to put their person under a microscope and watch them like that, but just to be aware that there are subtle changes that happen as people transition.
I don't want anyone to feel like they need to put their person under a microscope and watch them like that, but just to be aware that there are subtle changes that happen as people transition.
Mike: You are listening to The Alzheimer’s Podcast with Mike Good of Together in This, your number one resource for practical tips and insights, empowering you and your family to live well with Alzheimer’s.
Depending on the type or cause of dementia, you can be looking at sudden changes or a slow, gradual, steady progression. Either way, you need to recognize and navigate through those transitions and that’s why when you often start feeling overwhelmed and stuck, your mindset goes south.
In this episode of Navigating Rough Terrain with the Dementia Sherpa, Christy and I discuss positive strategies emphasizing the importance of our mindset and Christy even shares how thinking about wedding planning can help. Seriously.
Christy, today we’re going to talk about the transitions that happen in dementia care as a result of the changes that our loved one, and we as care partners, are going through. So I’m going to let you go ahead and just kind of explain what we mean by the transitions.
Christy: Well, this really came up for me, Mike, when I listened again to our last two episodes, where–not our last episode, but the one before–we were talking about when is it appropriate to kind of pull back on the care that we’re providing for our loved ones.
Should we be a big cheerleader on yes, do rehab, or are they at a point in the disease process where that’s simply not appropriate anymore, where it would be more appropriate to be looking at comfort care or really analyzing what are the benefits of the care that we’re thinking we need to do versus what in reality is the situation right now.
And then we followed that up with the episode about subtle changes that can happen in our person as they’re progressing and we may not be picking up on it and it can lead to hurt feelings and our person feeling like they don’t really belong or they don’t matter.
And all of that just really got me thinking about the subtleties as people transition through the process. I know that as a care partner sometimes we can get really focused and almost fixated on, Is that a change today? Has something different happened today?
And so I don’t want us to swing from not noticing subtle changes to really kind of putting our person under a microscope. But just to be aware of transitions happening. And if we’re talking about Alzheimer’s disease, which is the biggest cause of dementia, the most common cause of dementia, or most common type of dementia I should say.
Then we’re talking about a slow, gradual, steady decline over a period of years. That’s how that usually works. With vascular dementia, by contrast, for example, that looks more like somebody is stable for a good chunk of time and then a precipitous drop, something happens, it’s a big decline and then they’re study again for a long period of time. So it’s more like long stair step.
And for care partners it can be difficult to figure out how am I supposed to be planning for this or what am I supposed to be looking for? And again, I don’t want anyone to feel like they need to put their person under a microscope and watch them like that. But just to be aware that there are subtle changes that happen as people transition from one phase to the next. And the more that we’re aware of that, the easier it is for us to be responsive in a way that is supportive.
Mike: Okay. And of course I’ve seen many, many times that our care partners try to put their loved one into one of the stages that have been identified. And you know, those stages, while they do kind of categorize and show the different changes, they also focus a lot on the negatives aspects and loss. And I’m always trying to help care partners not focus on the loss but focus on, you know, what remains in the positive. So, as they are going through these changes and transitions, I’m hoping that we can help our care partners see the positive and bring those remaining abilities to the surface.
Christy: Absolutely. And I agree with you. So I think especially like maybe, I don’t know, three, four years ago people were really talking so much about diamonds, sapphires, stage five, level six and, “Should I use this one [cognitive scale] or that one? How should I judge this?”
How is your person? Let’s judge it that way. And I think it is useful to know where your person is in the process, for things like safety planning, financial planning. We certainly don’t want someone who is, let’s say, the 6c stage, driving. That would be a bad idea. So in that way it’s very useful.
But when we’re focused only on that, then I always like to ask, Why? Why would we focus only on that? What is the benefit to it? And I think especially our long time listeners know that I’m very oriented to the, I guess what I would call the crux of it, which is: this is your person This is a person you’ve known for decades.
This person raised you or helped raise you. They’ve been a part of the family for a long time. You’ve been married to them for a long time. Whatever the relationship is, this person is still your person. They have a process that is attacking their brain. That’s true. But that core essence is still there.
So that’s why I think the Good Stuff–respect, kindness, love, empathy, and compassion–is so important. That we’re really focused on them as a person. And I think when we are able to shift our focus that way, and orient ourselves to, “This is a person that I love. What type of support or assistance do they need?” Then the focus on what stage someone is in, are they a diamond or sapphire or pearl or whatever–that kind of naturally falls away.
Mike: Okay. That makes sense to me. And I’m happy to hear you address that and help our care partners see [and] understand that.
Christy: So I think when we’re looking at transitions as a natural part of life, that makes it easier for us to put it all in perspective. And one of the things that I think a lot of times we fight against–because it doesn’t feel good, of course–is that transitions in life are normal, whether someone is living with dementia or not, but often they can feel painful. There can be some sadness that goes along with it.
And just to give an example, like as kids are growing up, when your baby is not a baby anymore and you think, “Oh my gosh, they’re so grown up! They’re starting kindergarten today.” And then with the gift of retrospect, 20 years later you go, “Oh my gosh, they were in kindergarten and they were still a baby!” So natural transitions happen in life just as a part of life.
And where I see family care partners kind of stumble sometimes is in–and obviously it’s always unintentional–but in really staying very present in their grief of how it used to be and not having any space (or a very, very limited space) to embrace who their person is right now, to be able to be in the moment with their person right now.
And yes, it’s different than it was a year ago or six months ago or two years ago, but it was always going to be different because we all change, every day, over time. But again, it’s a natural part of life. It’s certainly more noticeable for people who are living with dementia as they progress through this process, but they still have the value there. They’re still there. And I know I sound repetitive on this [but], it’s so important that I think it is worth repeating because we can’t go back in time to how it used to be.
And the saddest thing I ever hear a family say to me is, “I wish I’d enjoyed Mom when she could still sing. Instead, I was so upset about her not being able to walk anymore,” or whatever the thing is that people are feeling loss about. And again, it’s normal to feel loss. And it’s okay to feel sad.
I would just encourage care partners to really recognize transitions for what they are and to focus on being as in the moment as possible right now. So, um, Navy SEALs have that saying, “Today,” or, “The only good day is today,” or, “The only easy day is today.” I think that’s what it is. I’m just butchering it. [Note: The correct phrase is, “The only easy day was yesterday.”] But, along those lines, today is the best day because we know with a chronic progressive condition it is always going to get worse. So today is the best day. Today is the day to embrace what your person can do.
Today is the day to spend time with them. Today is the day to pull out your phone and start recording the conversation and you know, maybe do a little family history project or have your person tell a story or just start recording when they are telling a story that they love to tell. Who cares if they tell it four times in a row? Look for the richness of the detail that’s added each time through and appreciate the fact that your person still wants to entertain you and can tell a story.
Really, it’s the whole experience is bitter sweet because these changes are happening. Transitions are a natural part of life. You have the added challenge of dementia on top of that.
Mike: So, transitions or changes, it’s really about how we accept and and move forward with them. We can move forward with our head down, focused on loss and kind of be bitter. Or we can put our head up and focus on what remains and the positive side and make today the day that we do this thing with Mom, that we sit down at the piano and we sing together or we do something with Dad. But I think for care care partners, the first big transition goes all the way back to the diagnosis or the first realization that something’s not right. And at that time that’s a big hit to us, to realize that things may not, will never be the same again, and to put our head up and to move forward. So can we kind of step back and talk about that first transition the diagnosis and understanding you that?
Christy: You bring up so many good points there. And of course it is normal. It is natural for a feeling of loss, and feeling like the rug has just been pulled out from under you when your person is first diagnosed. Everybody has that feeling and I strongly believe there is no right or wrong when it comes to feelings. They just are. The only, or maybe not the only, but one of the biggest challenges about feelings is when we try to stuff them down and pretend they don’t exist or ignore them. And then they come back to bite us in the butt later. That’s obviously a problem.
So around that, that confirmation of diagnosis is typically because usually people aren’t shocked. It’s more of a confirmation of what they thought was happening. Now they have something definitive to say, “Yes, that is the cause of the changes that you’re seeing.”
So it comes to mindset, I think, and just being the full, complete human that you are and knowing that it is okay to feel sad and to feel like your world has just flipped upside down, while at the same time focusing on the fact that you really want to renew your appreciation for your person. You want to create a plan for moving forward and do those things simultaneously.
You know, we talk about multitasking quite a bit in society and I’m not necessarily a proponent of doing it in a way that creates [a feeling of], “I’m just overwhelmed!” And trying to do too much all at one time. But I think that as humans we can definitely have the space to have those feelings and the sadness, and still move forward with gratitude and appreciation that–unlike if our person was in a sudden accident and we never had time to say the things that we wanted to say, to make sure that they know how much we loved them–with this condition, we do have time, we have lots of time to make sure that everything that needs to be said is said and that we can really mindfully focus on an awesome quality of life.
Mike: Right. And that’s a quality of life, not only for our person but for the care partner, us, as well. And for our extended family who’s also going to be affected by the disease. It affects the entire family.
Christy: It absolutely does. And of course one person has the diagnosis, but the whole family lives with it. And it’s normal to need to take a beat to process: What exactly does this diagnosis mean? And again, to have all of the feelings before making a conscious decision about how you’re going to navigate through this moving forward.
So like you were saying earlier, Mike, it really comes down to mindset because transition is something that we don’t get to have any control over. It is going to happen. That said, what do we want our mindset around it to be? Is it, “This sucks and I can’t believe this is happening to my family and it’s so unfair!”? Because that’s certainly a mindset. And I’m not saying that feeling any of those things is unnatural. Sure. And we all have our moments and our bad days, but you can see where having that mindset throughout the process is bringing a lot of negative juju into the situation and it’s exhausting to feel negative all of the time.
When you don’t see any positivity, don’t have any gratitude about anything. Gosh, it sucks the hope out of you. It sucks any optimism out of you. And worst of all, it robs you and your person of quality time together, of generating gratuitous good feelings, of creating positive memories for going forward.
So instead of that really negative mindset, if you make the conscious decision that, you know, “I don’t like what’s happening, I wish it wasn’t so, but I am going to make sure that I find the information I need, that we are treating a plan that is going to be workable for my person and workable for me.” And the thing that is true the day after the diagnosis as well as the day before the diagnosis is that none of us know definitively when our last moment on earth is.
Mike: Christy, you got me thinking about how when we do have–I’m going to call it a major life transition. I mean, I know we’re talking about what are the little transitions that might be happening throughout the progression, but also it starts off with this big transition of, hey, we’re now a care partner. We’re caring for somebody with a disease and someone that we’ve known all our lives and love and care for. When those big kind of things hit us, we’re often faced with a series of decisions to make. And those decisions can really just cause us to freeze up and not take action. And then we’re always second guessing ourselves: was it the right decision or not? But it’s really important. I believe that in life when we are faced with these changes or decisions, we have to, you know, maybe we do some pros and cons, list in our head or on a piece of paper. We kind of formulate a little plan but we make a decision, we move on and we just give ourselves the benefit of the doubt that hey, we made the best choice and decision at that time that we could.
Christy: I agree. And I think that making a list is a great thing to do and do a pro and con sheet. That’s fantastic. The other thing is there are decisions that are irrevocable, but there are very few of those in life, actually. Even bad decisions–and we’ve all made them–we can recover from those, we can change course.
But staying stuck is not a good decision and again, that’s something where you can change course, you can make a different decision and it’s the same thing here. Being paralyzed, when we’re overwhelmed and feeling like, “Well, my gosh, there’re all of these decisions that need to be made now!” That’s true. There are a lot of decisions that need to be made now.
Getting to a place of, “I’m just so overwhelmed that I’m just going to get in bed and pull the covers over my head”? That doesn’t help you and it doesn’t help your person. So that’s not really even a viable option. It’s nice to have the fantasy for a nanosecond or two, but let’s move on to the next thing because the reality is you’re not going to make all of the decisions at one time.
You’re not going to have the whole plan together all at one time. There is no way in the next moment you’re going to have it all figured out because nothing in life works that way. I mean, perhaps if you climb to the top of Mount Everest and have a moment of enlightenment, maybe. [But] typically it does not work that way.
Think about planning a wedding. You don’t have it all figured out immediately. Like, “Oh my gosh! I said, ‘yes.’ Now I’m supposed to have this whole thing all put together. Right now!” We don’t think that. We think it’s silly to even think that.
So it’s a process over time, right? And you get it figured out, and then the day comes and ta-da! And you know what? I think every person has been in involved in a wedding can say, or at least the principles involved in the wedding can say, “Well, this or that didn’t go according to plan. It wasn’t the way that we planned for it to happen. Something else happened.”
And you know what? It all turns out okay anyway! Because there’s an underlying structure and underlying plan. And I think that that is actually a useful analogy. Even though of course we’re thinking of weddings as positive things and planning for dementia as not a positive thing. It does go back to mindset on the dementia side because [it’s] not the circumstance we would have chosen, but here we are. We can use our power by making a decision and move forward and use our power to create the best quality of life, the best experience that it is possible to have within those circumstances.
Mike: Christy, I was just kind of visualizing, you know, my own decisions in life and how making a decision, it’s like opening a door and walking through it. You don’t really know what’s on the other side of that door until you do that. And we have to, we do need to stay flexible and be willing to change our plan and to adjust it on a daily basis and to forgive our self if we think we made the wrong decision before, and just keep moving forward and learning from everything. And that’s how we, I think, we build this pathway to success and happiness and good quality of life. Where we are spending those moments with our loved one on a daily basis and how we get there is, you know, it’s going to be different for every family because there is no black and white answers in dementia care and life in general. So I just really think it’s important that our care partners understand that, you know, you keep your head up and you do the best you can. And you take it easy on yourself if you make a mistake. I’m doing air quotes.
Christy: Well I think we’re always doing the best we can in the moment with the information and the knowledge that we have in that moment. And then when we know better, we do better.
Mike: Christy, it is time for us to wrap up this episode. Do you have any last thoughts or comments you’d like to make to for our listeners?
Christy: I think, just kind of taking a step back away from dementia specifically–although obviously that’s always our topic–but looking at transitions as a life process, as a natural part of life, is helpful, I think, in framing how we’re thinking about dementia and how we’re managing that process for our person or with our person so that we both are able to have the best possible quality of life.
Mike: All right, Christy. Well, thank you again, as always, for being on The Alzheimer’s Podcast.
Christy: Thank you so much for having me.
Dementia can last for 20 years. That's a long time to fly by the seat of your pants, struggling through trial and error! If you don't have a strategy, but you're ready to step into the life you and your loved one deserve, schedule your complimentary Dementia Caregiver Strategy call with Christy.