Memory Care Doesn't Make Dementia Caregiving Easier

0:00You moved your loved one into memory care. Maybe it took everything out of you to finally come to that decision. You probably second-guessed it, thought about it a hundred times, maybe talked about it with a ton of friends, family, doctors. Maybe you had somebody else finally need to make the call for you because your body just couldn't keep going anymore. You were exhausted. You were run down. You finally make the decision to put your loved one in a care facility, and then you waited for the relief to come, for the feeling of you finally get a break, for the moment you feel lighter when you get to sleep through the night, when you're finally able to slow down and take a breath.

0:42But that didn't seem to happen. Careblazer, real quick, if you learn better by watching things, then you can hop on over to my YouTube channel where I post these podcasts in video format, sometimes have different visuals to help people learn even better. You can just type in Careblazers into YouTube and I will pop up. All right, let's get back to today's podcast. Yeah, maybe you visited them and maybe it was a fine visit. Maybe it was great. Nothing terrible happened. You came home, but the next day you woke up and you were completely wiped out. I'm not talking just a little tired. I'm talking wiped out.

1:17Like you had just run a marathon and you couldn't explain why because nothing necessarily went wrong and you're still asking yourself, Why am I so exhausted? Finally, I'm not having to care for my loved one 24 seven. And if that's where you are right now, I want you to stay with me because in this video, I'm going to share the reason why that is happening. And it's not what most people think. I will also share some very recent stories from careblazers about their loved ones and care facilities. And it will take away all doubt that even when your loved one is in a care facility, it can be extremely difficult.

1:51Now, there is a very common assumption that when your loved one moves into a care facility, the hard part is over. I want to be honest with you because many people have this misconception, this misconception that when your loved one goes to a care facility, everything gets easier. And absolutely the physical demands of caregiving change. You're no longer doing all of the 3 a.m. wake up calls or changing them every time they have an accident or preparing all the meals or helping with bathing or the constant supervision, that absolutely does change. It shifts from you to the team at the facility.

2:27That's real and it's absolutely helpful, but easier, not in the way most people expect. It's a different kind of hard. The exhaustion that you feel after visiting your loved one in a facility, it's not just coming from the visit. It's coming from your body, your brain, and everything they are still carrying. And specifically, there are three things that are happening inside of your body that explain exactly why. One buzzword, we hear about it all the time, but it's your nervous system. And think about what caregiving required of your body for all of those years. You are always listening, always, maybe for a fall, maybe for the front door opening, for a behavior that might be coming.

3:11You're scanning every room, every conversation, every change in mood. You learn to anticipate problems before they happen because if you didn't catch it early, it was going to get worse. Basically, you were in hypervigilance. You were on edge, on eggshells, just waiting for the next thing that you were going to have to respond to. That's not a character flaw. It's your nervous system doing exactly what your nervous system needed to do to help keep your loved one as safe as possible. But here's the thing about nervous systems. they don't automatically know when the emergency is over. After years of running on high alert, your body's stress response system, it becomes dysregulated.

3:52Your cortisol rhythm gets thrown off. The part of your brain responsible for detecting whether a threat exists, that doesn't just turn off like that because your situation changed. So even during a lovely, quiet visit, your brain is still scanning. even when you are at home in peace at your home where your loved one's safe at the facility you're wondering is he confused is he okay is she upset is everything you know being taken care of what happens if he wants to go home again what happens if the next visit it doesn't go as smoothly how am I going to redirect them how am I going to keep affording this you are still managing anticipating emotionally regulating all of those things while simply just trying to be present with them during your visit and trying to exist in your own world while you're trying to figure out how that new chapter of your life looks.

4:43I was in one of our care collective groups recently and one of our members described it like this. She said that her husband had been in memory care for about 18 months and she said yesterday we had a really good day. I came, we had a beautiful visit, I went back home and I completely wiped out. I was shocked. Nothing even went wrong and before Or I could say a word, another one of our members in the room named it. She said, you are still having to be on alert, even when it's a good visit. Even when nothing goes wrong, you are still scanning for what might happen. And that's exactly right. It's exhausting even when nothing is necessarily going wrong.

5:23So that's one. Our nervous systems are still on high alert. Number two, let's just call it grief. Grief. Let's name this specifically because it is the kind of grief that does not get a lot of recognition. It's called ambiguous loss. And it's the grief of losing somebody who is still here, who is still alive. There's no funeral, but there's people in your life who might be looking at your situation from the outside and saying things like, well, at least they're safe. And then they expect you to somehow feel better. And so maybe a part of you kind of does start to feel better. And you come home from every visit and you sit in your home and you have this quiet ache that you just can't name.

6:05Oh my gosh. I talked to a careblazer last week, late last week, and his wife was just recently placed in a care facility. And he was on a call with me and he goes, everywhere I turn, everywhere I look, it's a trigger. It's a reminder of her. We have been married for over 50 years and everywhere I turn, there she is, even though she is not here. That is grief. You lost your loved one. You lost your partner. You lost the relationship you've come to known. Every single visit is right there in front of you. And every time you go home, all the reminders are around you. One of the lovely careblazers in the support room recently said, every time I go visit my husband, he asks without fail, when do I get to go home?

6:48And every time she has to hold on to that. And every time he asks, she feels this pain of grief. She has to find a way to acknowledge it, to sit with it, to stay calm, to not let him see how much it hurts her for him asking that question. Then she said something that really stayed with me. And she said, I really thought placing him in memory care was going to be easier. It turns out it's just different. And I think that's a very beautiful, accurate way to describe it. That's grief. doesn't follow a timeline. It doesn't just go away or resolve itself because the situation changed or the logistics changed.

7:24And then the third thing that might be happening here is recovery. I want you to think about this for a moment. If someone had been in a serious accident and they spent years physically healing, would we not look at them six months later and say, like, why are you still tired? Why is this still hard? No, we wouldn't do that. We would understand that their body needed time to recover from this really hard accident. Caregiving is long-term, both physically and psychologically. Your body has been running on a deficit for years, possibly even a decade or more. Researchers call this allostatic load.

8:01It's basically the accumulated biological cost of chronic stress, and it doesn't erase itself overnight because all of a sudden somebody else is watching your loved one. And in that support group where we were talking about just the overwhelm and the heaviness that we still feel after loved ones are placed, she said, now that he's in this facility this time while he is there, it's not me recovering from his disease. It's me recovering from decades, from the 10 years where I was caring for him, where I was showing up for him for the years before that, when I didn't know what was going on, but I knew something strange was happening when we didn't even know what it was.

8:43Yeah, that's basically exactly what is happening. And Careblazer, I really want you to hear this. The crash you feel after you visit your loved one, or even the heaviness and fatigue you are feeling on the days you don't go visit your loved one, when you're still worried about them processing everything, still managing so much, that is not a sign that something is broken in you. it is a sign that your body finally feels safe enough to feel how tired it has been all along. So what do we do with this? What do we do with this information now that we understand what our body is doing? The first thing is to stop treating any type of post-visit exhaustion as a failure.

9:28Start treating it as information. Your body is telling you what it means. Plan rests after visits In the same way you would plan a plan rests for after a medical procedure. It's not a luxury. It's actually appropriate care for what you are going through. The second thing, it's very simple, but it's difficult to practice and not try to fix. Let your grief be grief. Do not come home from a visit feeling sad and then thinking you have to change it right away or that for some reason you are weak. You do not need to push through or explain away the way that you are feeling. People who are not in your situation, they don't get it.

10:10They're not going to get it. We don't have to explain it to them. You are grieving somebody who is still alive. And that is one of the most complex forms of grief that exists. Let it be. Let it land. And the third thing is to give yourself a recovery line that's honest. It's not a two-week fix. It's not, oh, after a month, your life should be on some steady pace and things should be easier. Because your loved one's disease is still changing. Their care needs are still changing. You're still getting updates. So for all of those years of caregiving, recovery is going to take some real time. Be patient with yourself, just like you would be patient with anybody healing from something serious that needed recovery time.

10:55Because that's exactly what you are doing. And for anybody out there thinking that somebody who has a loved one in a care facility, all of a sudden doesn't have a work or a job to do, that is false. In fact, a couple of weeks ago, I talked to a careblazer who recently, after lots of deliberation, careful consideration, talking to her family, placed her husband in a care facility, a locked memory care unit. And despite that, her husband was able to get out of that memory care unit, walk out of the door and was missing. And if it wasn't for a tracker that she put on him before he went into that memory care unit, he may not be found right now.

11:32We may not have ever found him. And so there is still a hypervigilance happening while your loved one is in a care facility. So I hope this video helps. I hope it helps put a name and explain why you might be feeling the way you are feeling. And for anybody who maybe had preconceived notions of what it means to put your loved one in a care facility, I hope it brings a little bit more compassion that that careblazer's job is not over. Their life is not just easy and peaceful now. There is still so much going on logistically that they're doing to care for their loved one, but also emotionally, psychologically, and in physical recovery of themselves.

12:12Now, these kinds of conversations, these kinds of topics, that's what our care collective support rooms are for. These are careblazers who are in the thick of it, who are caring for their loved ones and who are together helping each other out and naming exactly what is happening. Because sometimes the most important thing is not just more information. It's knowing you're not the only one and knowing there are other people you don't have to explain yourself to who can listen, acknowledge, support, and even give you an idea of something that has helped them. If you would like to be in a room like that, the Care Collective is exactly where that happens.

12:50There is a link in the description below this video. So Careblazer, I'd love to know if your loved one is in a care facility, what's been your experience? How has it been for you? And if you're not already getting my free weekly dementia dose newsletter, where I send out a new newsletter every Thursday with thoughts on my mind, ideas, new videos, you can sign up for that in the link to the description below. Oh, and one final big announcement. My book, The Dementia Care Toolkit, is available for pre-order at the time I am recording this video. So Careblazer. I'm sending you so much love. Thank you for doing what you are doing for your loved one, regardless of wherever they are living.

13:29All right. I'll be back next week with a new video. Bye.