When Your Loved One With Dementia Seems Fine to Everyone Else

0:00Care Blazer, welcome back. I am feeling a little bit under the weather today, but I wanted to record this video right now because it's fresh on my mind. This is a video that is going to help you if you can relate to the feeling that other people might think you are exaggerating about what you are witnessing with your loved one, or they think you are being dramatic, or things are not as bad as you make them out to be. 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.

0:41You can just type in Careblazers into YouTube and I will pop up. All right, let's get back to today's podcast. So yesterday I gave a talk and afterwards several people came up to talk to me and tell me about their personal situations. And there was a similarity between several of them. And I recognized it immediately because I experienced it myself. In fact, I talked about it in my book, The Dementia Care Toolkit, about when I was caring for my dad. And I used to get so triggered and upset whenever my siblings would tell me things like I talked to dad and he seemed fine, or dad looked great today, or dad and I just had a wonderful conversation.

1:29And it used to make me so upset. So yesterday, one lady came up to me and she has this experience with her children. So I met her and I met her husband with Alzheimer's disease and we chatted. And she said her adult children sometimes say things like dad seems fine or dad looks great. And she had the same reaction that I had, feeling triggered, feeling irritated when they brought this up. So let's talk about it in case this is you. And it can be comments from family members. For me, it was my siblings. For her, it was her adult children. It could also be comments from doctors, clinicians, friends, basically anybody who comes in touch and has these brief interactions with your loved one.

2:14And then they make these comments. So let me just tell you what I told her yesterday. I said, you basically have two options in this situation. Your first option, which is totally possible, is you can just have a conversation with your children, their adults, about how their comments feel to you. You can say, hey, like I know when you say these comments in your viewpoint, he really does seem okay in those moments. He really does look fine in those moments, but I can't help but feel a little bit like it makes it seem like my experience and what I'm going through might be exaggerated. It doesn't seem like maybe what I'm saying is factual, right?

2:55Like you just have an open conversation with them. This is only an option if the person you are talking to and telling about how your experience is, if they are mature, if they care about you, if you have a decent relationship. shit. If you do not have a decent relationship with them, if they don't really seem to care about you, this is probably not the option you want to choose. In fact, another gentleman who came up to me after the presentation yesterday was telling me about a situation with his brother-in-law and he said his brother-in-law doesn't talk to anybody from the family. It's his way or no way and there's just been lots of discord there.

3:32So it's not an option you want to choose with him, right? That's option one. Totally okay to do. Now remember, that's just you sharing your experience. You can also make a request. Hey, I'd appreciate it if you didn't make comments like that. You can certainly do that. But Careblazer, we have no control over other adults. So they can still do what they want to do. It doesn't mean when we share our experience or we make a request, everybody has to comply and change. That's not the case. But you absolutely can. And if they love you, and if they care for you, and if they understand, they will work on making an adjustment.

4:03Okay. Option one. Option two, which I think is the preferred option, the option that I used when I was caring for my dad, is to remember that the only reason you feel triggered, you feel irritated by their comments is because you have a thought about their comments. If you are new to me, this might sound totally crazy and strange. If you've been following me for a while, you know this is the core of everything I teach. We only feel what we feel because of what we are thinking. It's not about what anybody is saying. So if we take the comment, hey, dad looks really great. That comment didn't make her irritated.

4:46That comment is just a comment. It's just, it's just neutral. That's what it is. The thing that made her irritated is she had a thought about their comment. Her thought was they think I am exaggerating when I tell them how their dad is doing. That's her thought. Her thought is they have no idea what it's really like. Her thought is they think I'm being dramatic or they don't believe me when I tell them everything. Those are the thoughts leading to her irritability. So if she does not want to feel so irritable, the only thing she can control in this situation is what she's going to think about it.

5:19Because again, we cannot control other people, what they have already said, what they have already done. It's done. It's part of our reality. Now you get to decide how you want to show up, what you want to think about it. So what I told her and what I used personally in my caregiving situation is for me personally, all I was going to have left in my family are my brother and my sister. My mom had already died two years prior. My dad was dying. So for me, keeping my relationship with my siblings was of utmost importance. And I chose to opt for the thought that it makes total sense they think dad is okay.

5:57It makes total sense that they think dad is doing well or isn't so bad off because dementia is confusing. For short, brief periods of time, people can look totally normal. People can talk totally normal. There's no obvious glaring signs for many, many people with dementia. And And that's a misconception that people don't understand or realize. The only people who understand and realize are people like you and me who have lived it, who have been through it. So I told her, even if she has a conversation with her children, even if she makes a request for them to stop making those comments, that's fine.

6:34But also do the thought work. Also make sure in your mind, you were telling yourselves like, they're not doing this to hurt me. They're not doing this on purpose. In their viewpoint, it makes sense. They think he's doing okay. does this make sense, Careblazer? There's so much outside of our control in dementia care. And the one thing always in your control is you and what you think and what you do. And it doesn't mean we show up perfectly and it doesn't mean we do the best thing all the time. However, it does mean we realize we still have some power and authority. You can use it whenever you want.

7:07So I'm curious, have you had this experience where people think your loved one is a lot better off than they are. But these people who have these opinions don't spend as much time as you do. I think another really frustrating situation for a lot of caregivers are when they take their loved one to an appointment and the appointment is what, 16 minutes long. And the doctor or the nurse or the provider is like, oh, they look great. They're doing great. And you're just like, oh my gosh, it took me four hours to get them ready, to get them out the door, to get here, to look decent enough for this appointment.

7:40Like they have no idea. And the person with dementia, their brain is kind of just functioning in the social habits that they've had most of their life. So they're not even really saying anything of substance, but because it's not overtly very impaired, they look okay in the short appointment. So they can default to, uh-huh, yeah, everything is fine. And they can smile. And in those moments, they can look pretty good. So care blazers, if this is a situation you're resonating with, in my book, The Dementia Care Toolkit, I have an entire section on you. Like what can you do for yourself to help with the frustration, the emotions, the grief?

8:20Because here's the truth when it comes to dementia care. It's not going to feel good most of the time. It's going to feel hard and heartbreaking and sad and irritating because we are dealing with something that is so not normal, so unnatural. always changing and we are the ones that are having to adapt and deal with it all it means that you are deserving of just as much attention and strategies and tips as it is for the person with dementia so you can go anywhere where books are sold to grab this there's a bunch of freebies that come with it you'll go to my website and you can download the workbook that comes with it offer free i'm sending you so much love and happy fall careblazers