Additional Resources Mentioned

Guide: Navigating Dementia Caregiving Roadmap https://thecaregiversjourney.org/guides/

Later On – You are now managing all aspects of their care

18. Plan for their End of Life Service:  

• You may have done this with your loved one just after their diagnosis. If not, do this without them now:
• 26 minute TCJ podcast: 30. End of Life Service Preplanning
• TCJ blog: 30. End of Life Service Preplanning
• Leverage this End of Life Planning Worksheet. 

19. Call in hospice.

• If you are not working with palliative care or a US Medicare GUIDE program organization (both of these are able to tell you when it’s time to call in hospice)
  • Find a hospice organization. 
  • Get a doctor’s referral. 
  • Schedule an initial evaluation. It’s almost never too early to get the initial evaluation, so don’t wait.
• Search ‘hospice’ + ‘your country’ – or in the US – ‘your state’. Scroll down until you get below the sponsored links where it says ‘Places’:
  • Click on ‘More places’ to get a list with a map.  
  • Notice rating stars and those located around your area.
  • Schedule an initial consultation with two so you can compare.
• Educate yourself on when to call in hospice:
  • 26 minute TCJ podcast: 29. When To Call In Hospice
  • TCJ blog: 29. When To Call In Hospice.

20. Continue your self-care. Learn about Anticipatory Grief. 

• Read this AARP article:
  • How To Manage Mourning a Loss Before It Happens.
• Honor your grief, be compassionate with yourself, reach out for support:
  • Each of us navigates the loss of our loved one in our own time and way.
  • It’s reasonable when your caregiving journey ends you may feel any or all of:
    • A sense of relief because your journey has ended and your loved one is no longer suffering, 
    • Guilty at the same time because you feel relieved.
    • A loss of your own identity, from prioritizing your loved one for so long.
    • Not sure what to do next.
  • If you feel lost, reach out to your family, support group, faith community, friends, professionals. Most importantly – reach out!

Takeaways

The Three Stages of the Dementia Caregiving Journey

1. In the Beginning – Your loved one receives a diagnosis. 

• You are the caregiver for TWO people – and you have equal responsibility to both! You instinctively know one is your loved one, but who is the second one? It’s you!
• Your caregiving goal for both of you is keeping you safe and comfortable.
• For your care receiver living with dementia, keep front and center helping them maintain as much dignity and independence as possible.
• Your natural instincts will pull you to take control to protect them.This can be counter to dignity and independence. At this point, as the primary caregiver, your role is providing most of your support in the background. 
• The time will come when you will need to take more control. Be patient and let it come naturally.
• You may begin grieving losses along the way – some minor, some more significant. We call this ‘drip grief’. It’s still grief.

2. The Messy Middle – You begin asserting control; this is when it gets messy!

• Your care receiver still thinks they can do most things while you’re getting more involved,   and this adds to their frustration. 
• There’s a lot of observing and adjusting while helping them maintain their independence.
• Your loved one is frustrated because they aren’t sure what to do. Sometimes, they’re also scared.
• It’s important to look at things from their perspective, maintaining empathy and connection during this challenging stage.

3. Later On – You are managing all aspects of their care. 

• Caregiving becomes easier in many ways at this stage – and harder in others.
• Be aware of your ongoing grief (sometimes called ‘anticipatory grief’). 
• Prioritize self-care and reach out for support.

Read More in This Blog here

 

Full Episode Transcript

Sue Ryan

Have you ever felt overwhelmed because you can’t find the information you need? Have you ever felt overwhelmed because you can’t find the information you need or you’re drowning in so many conflicting resources, you don’t know what to do with it all.

 

Today, we’re discussing a step-by-step roadmap pointing you to the final set of steps and resources to prioritize when you’ve now become fully responsible for the care and safety of your care receiver. If you haven’t listened to the previous episodes that cover the first 17 steps, it may be helpful to listen to them first. There are episodes 43, 44, and 45.

 

Nancy Treaster 

In these episodes, we’ve been stepping through the roadmap of resources for the stages of the dementia caregiving journey. So before we get too far down a path, let’s go back and discuss the dementia caregiving journey and hear more about this last stage. Sue?

 

Sue Ryan 

When Nancy and I started talking about the caregiving journeys, when Nancy and I started talking about our caregiving journeys, we figured out that they came in three distinct stages. And we’re not talking about steps or stages or phases of the dementia journey. We’re talking about our caregiving stages. And we identified stage one ‘in the beginning’ when our care receiver is pretty much fully independent and they can be making a lot of their own decisions. And we’re kind of helping, but helping behind the scenes. Stage two, we call the messy middle because it is, yes. They’re beginning to have less control over what they’re doing. And so we’ve started to assert control in certain areas. And frankly, many people don’t like it.

 

They’re not very happy. They’re struggling more. We’re trying to help them do as much as they can on their own. And it just is messy. And so we want to be able to, again, keep helping them have as much dignity and independence as possible while still asserting control to help keep them safe. And then stage three, which is what we’re going to be talking about today, is what we call later on. It’s where we are now fully responsible for their care and safety whether that’s guiding others or doing it ourselves. In this podcast, this focus of what we’re gonna be talking about, caregiving actually in some areas becomes easier because we’re now in control. We’re not struggling with them. We’ve just taken it over. On the other hand, it’s harder in some areas. So we’re gonna talk a little bit about what that looks like.

 

Another area is that we become more aware of our grief. We talked in the first two stages about drip grief, a little bit of grief along the way. And now that our journey has come to the point where we’re fully responsible for their care and safety, we’ve now started having potentially some, what we call anticipatory grief. It’s where we’re anticipating the end our loved one’s death or any other kind of a significant loss. And that’s a different kind of a shift in grief. And just as important with the others is that we make sure that we get support, that we don’t process this alone, that we don’t struggle alone, that we get some support. And this is why we wanna make sure that we keep focusing on prioritizing our self-care and reaching out for support. And the reminder is the fact there are two of us on that journey. It’s our care receiver.

 

It’s also us.

 

Nancy Treaster 

And for both those people, as we get into these last three steps of the roadmap, we want to make sure we’re covering everything that you need to be thinking about here. 

 

So let’s walk into step 18. This is kind of uncomfortable. Step 18 is to plan for the end of life service. You may be thinking, well, not now. No, it’s not happening anytime soon. The fact is you don’t know. And so, you, hopefully, were able to get a lot of planning done early in the beginning with your loved one’s input, if you weren’t, you’re gonna make some of these decisions without them, even if you were.

 

We recommend you get down and do some planning now. And why is that? Because when the end does come, you’re not gonna feel like doing this. You’re not gonna wanna deal with all these arrangements and thinking this stuff all the way through. So do it now. Hopefully it is towards the end. And isn’t that awesome? So you can get this planning done and out of the way. We cover this exact topic in episode 30, end of life service planning. And we talk about the fact this is best done before you’re in a terrible situation and upset and truly in massive grief. So let’s get it done sooner rather than later. There’s also a worksheet that goes with this. We recommended it in the beginning as well. It goes through all the different things that you can think through and a place to put the name of the funeral home, the contact information, who the, if you’re having a service with a pastor, who’s the pastor, where’s the service going to be, what the contact information is. It’s got a place to put all that information in it. It’s also a place to leverage at the beginning of your journey where you’re trying to decide if it is going to be a burial or cremation, etc. So leverage the worksheet as well.

 

Sue Ryan 

And that part of that process, if you’ve done it, especially in the beginning and you haven’t revisited it, there are things that could have changed, or you want to make sure your family members haven’t had any different ideas or anything that’s happened. So even if you’ve already done it, go back and revisit it and take a look at it and get everybody involved with it and have them think it through. So just as well for them, they don’t have things to be going through when our loved one passes away.

 

We’ve talked in earlier steps about palliative care, and now is the time for us to be bringing in hospice care. And if we didn’t use palliative care, we’re going to go find a hospice care organization. Almost always, if we were using palliative care, we have the option of the hospice care that they’re associated with. We may have found a different hospice organization we would prefer. However, it’s now a really good time to be bringing in hospice care.

 

And the podcast episode 29 is when to call in hospice. It helps us to identify now that we have, there’s the physical and the emotional recognition that we are no longer going to be trying to extend life. We’re going to be providing comfort care. It’s very helpful to now have hospice guide us on what that looks like. And whether you’ve participated with the guide program and they can give you support of the palliative care, they’re going to help you find the organization to work with. You get a doctor’s referral and you schedule an initial evaluation. It’s really with my husband, we got an evaluation before he qualified for hospice care so that for him specifically, they had these are some of the signs that we would be looking for that he might be ready for it. So it’s good to get the evaluation sooner than later. 

 

Nancy Treaster

If you have palliative care or the GUIDE program, Sue, they’ll tell you when it’s time to call in hospice, I suspect.

 

Sue Ryan

Exactly. When you’ve got palliative care, one of the things that in our podcast episode that we had when Dawn Coleman was talking about it, she said the palliative care team members will tell you when it’s time to be bringing in hospice care. 

 

Nancy Treaster 

Sue and our big believers, and you’ll hear this in the podcast episode, it’s almost never too early to call in hospice, so don’t think you have to be the one to judge because they’ll tell you if it’s time to call in. And they would love to get a baseline with your loved one, even way before it’s time for them to come in, because then they have something to judge against when you think things are deteriorating.

 

Sue Ryan 

And one of the interesting things you’ll learn, and I learned this from our experience, is that we evaluated my husband for hospice, and in the beginning he didn’t qualify. Then when he did qualify and he was put under hospice care, he started to rally, and he graduated from hospice care. He graduated from hospice care for over a year. And so, again, to your point about it’s never too early, you know,

 

We think that hospice care means the end of life. It just doesn’t. So again, search hospice and then whatever your country or your state are in the search, in your search engine, look at hospice and then either your state or your country or the city that you’re in and scroll down until you get by the sponsored links and find places and then look at more places. So find different hospice care organizations, look at the ratings of them, call them. They’re very glad to talk to you about their programs and what they have and schedule an initial consultation. Again, they will help you, they’ll tell you and they’ll give you insights and they give you things to go through to help you then know when it might be actually the right time to call in hospice if it isn’t now.

 

Nancy Treaster

Right, so I think what’s important about this section, Sue, that I’m thinking as we talk here is we’re saying later on is when you really have taken complete control of their care. That doesn’t mean they’re gonna pass away in 12 months. But what we want you to do at this point, even if you don’t think they’re imminently gonna pass away, is go ahead and plan the funeral services because there’s no pressure. Do it now when there’s no pressure. Go ahead and call hospice because hospice will come in, do a baseline, and then when something changes, they’ll come in and do another baseline. And if they’re ready, then they’ll accept them. If they’re not, they’ll come another time.

 

So we’re not suggesting, we’ve given up and now they’re getting ready to pass away. We’re saying when you move into the ‘later on’ stage, get ahead of both these things.

 

Sue Ryan 

Your point is very well taken, Nancy, because I know people who have waited till their loved one was just about to die before they called in hospice because they didn’t know their understanding of hospice was the end of life. And they didn’t recognize that there are so many things hospice can do in support of our loved one well before the final days of their life. So really, really good points about that, that they’re going to let you know. So, it’s not too early to call them in and ask the questions and have them give you guidance.

 

Okay, so that leads us to our last step, which is step 20. And we want to circle back to the caregiver, to you. And that is this concept of grief. And grief is not, we’re not talking about grief after someone has passed away. We’re talking about anticipatory grief, which says, you know things have dramatically gotten worse and you know their passing is imminent. It might be two years from now, but you’re beginning to grieve the loss of this person and more than just the drip grief, you’re grieving a loss in a deeper way. And so we do have an AARP article that’s quite good about understanding anticipatory grief that we put a link to in the show notes and it’s also in the guide just so everyone gets a chance to sort of check in on themselves when it comes to grief.

 

One of the things I learned about it in all of my journeys, because it’s a different loved one each time. And when it was my grandmother, I mean, she and I had been so close. She was so influential in my life. And I had a certain kind of grief for her. And I was feeling different emotions for her. Well, then there’s my dad, my hero. I mean, he’s been my hero all my life. And I had a different set of emotions in my grief for him. And then there’s my husband.

 

We’ve never experienced the same emotions and the same kinds of feelings depending on the person that it is so it’s reasonable that we would benefit from understanding how we’re feeling and having resources and having places to talk about it and Process it so when we when we have we’re feeling that one of the most important things we can do is honor it honor our grief Be compassionate with ourselves as we would with others reach out for support because each of us navigates each loss of a loved one, a different loved one in our own time and in our own way. And it’s reasonable that when our caregiving journey ends, some of us are gonna feel angry or we’re going to feel a sense of relief or we’re going to feel a loss of our identity. We’ve been a caregiver for so long and we’ve prioritized our level. Who are we now and what do we want? And we feel guilty if we feel relieved because gosh, you know, I shouldn’t feel relieved because my loved ones passed away. So we’re not really sure how to feel and what to do. And it can get very jumbled and very frustrating. And so this is a really, really important time for us to reach out to others, to be with others, to talk about it, to share it. And this is another place where support groups are so valuable because those of us who are in support groups have navigated these and we hear where you’re coming from and we understand it. The most important thing is to reach out.

 

Nancy Treaster 

That’s great advice. 

So, let’s summarize. This is our final episode in the series focused on the navigating dementia caregiving roadmap. We’ve now covered all 20 steps. These are the last three steps.

 

So let’s look at what those steps are. 

Step 18 was to plan for the end of life service. Doesn’t mean it’s the end of their life, but it is time to plan before the pressure’s on. 

Step 19, bring in hospice. Also, do it way earlier than you think you need to. Nothing wrong. The worst thing that happens is they come in, do an evaluation, and say not now. Awesome. 

And step 20, continue your self-care and be particularly sensitive to your anticipatory grief, and then your grief overall. Leverage support groups for yourself and stay in touch, honor your grief. That’s for sure. If you like this podcast, please subscribe to it or follow it. And every resource we discussed as usual, the links will be in the show notes as well as in the guide itself.

 

Sue Ryan

Especially in this stage, the later on stage, we know it can be really overwhelming. Please always remember that you’re not alone. Reach out. We’re all on this journey together.

 

Nancy Treaster

Yes, we are.