What Dementia Caregivers Are Afraid To Say Out Loud

0:00Hairblazer, let's talk about some of those inner deepest thoughts that we have that we are ashamed for other people to know. And we feel like maybe it makes us a bad person or a bad caregiver for thinking these things. These are the thoughts and the questions that many, many caregivers have where they pull me aside, where nobody else is around to ask me in private, or they email me and anonymously to try to ask me the questions. And I think it's important to bring these things to light because even though they might feel shameful, they're not shameful. They're absolutely, totally normal. And I want to take away the power that these things are holding over many caregivers, whether you find yourself now thinking about some of these things or experiencing some of these things, or you might find yourself in the future thinking about these things.

1:00So I like to say there is no judgment here. What is right for you might not be right for another Careblazer in a different situation, caring for a different loved one in a different environment with different support systems and different histories and different personalities. It does no good for anybody to judge them through your eyes when you are not living in them, right? Just like we don't like when other people judge us. 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.

1:36You can just type in Careblazers into YouTube and I will pop up. All right, let's get back to today's podcast. So in this video, it is a bit sensitive. It's topics that, you know, people don't like to admit, but it's important you know that these are normal. I could talk all day on these. There's so many different topics, but in particular for today, I will talk about one, two, three, four, five, six, seven. I'll talk about seven of them. And I would love for you to let me know what you would add to this list. Okay, here we go. Number one, let's talk about sex. Yeah, it's very common for people to pull me aside in private.

2:11Like what do they do when their loved one still wants to have physical intimacy with them? This is a very personal response, but what I want to share with you, like there's some ethical things to consider for sure. But in this video, I want to share with you common thoughts and reactions and experiences that careblazers have told me so that you know you are not alone. Number one, there are careblazers absolutely caring for their loved one with dementia and they do want to have sex with their loved one. They do. They want that physical intimacy. So sometimes they talk to me about how do they keep it going?

2:46How do they work through maybe physical challenges of that? Nothing wrong. And I also talk to just as many careblazers who tell me they want nothing to do with their loved one when it comes to physical intimacy. The relationship has shifted and changed so much that they can no longer see their loved one in that way. They almost feel like their loved one is more of a patient or care recipient and they've lost like the spousal feelings. The spectrum, they're both sides of the spectrum. Both are normal. Both are okay and don't require any judgment on ourselves or towards other people. Okay. Number two is this placement exhaustion.

3:25Sometimes we hear that somebody with dementia is living in a different environment, maybe a memory care unit, a group home, maybe another detached dwelling unit on the property receiving 24-7 care. And it's easy to think that because they have those supports and services that Careblazer shouldn't really be exhausted. But let me tell you the number of people who talk to me and come to me for help because they are utterly exhausted with the placement. Not only first trying to find a good placement option, find good care options. How do you afford it? Making sure your loved one will be accepted, helping your loved one adjust to that environment, making sure the staff around know how to best interact with your loved one.

4:08So many people tell me their loved one, they are spending hundreds of thousand dollars a year to have their loved one receive this level of care and the care staff is still calling on the family members regularly. You know, we need your help. We don't know how to handle this. Your loved one doesn't want to bathe or shower. We walk in their room. They say no, so we can't do anything. We walk away. And all of a sudden the careblazer finds themselves in still a caregiving role, but also like an administrative advocacy role of trying to ensure that your loved one is getting the care and the attention that they need while you are not there 24-7.

4:44It's incredibly exhausting and nerve-wracking and worrying all in one. So yes, caring for a loved one with dementia is exhausting, whether you are doing that yourself at home or whether they are receiving it in a different facility. Three, this is hard, resentment followed by guilt for not really wanting them to live any longer. A lot of Care Blazers talk to me about like, they don't want their loved one to live longer. Living longer means that they are suffering longer, that not just the careblazers are suffering longer, but also the person with dementia is suffering longer. They are having difficulty living their life, having these difficult experiences.

5:25And the longer that they stay alive, the worse it gets. They don't want their loved one to stay alive anymore. But to say that out loud feels like the opposite of anything that any human should ever want to say. Usually humans who have never experienced a loved one with dementia, especially in the severe stages. So just know that you're not alone if you're having thoughts like that. And just because you have a thought doesn't mean you're going to do anything to make that happen. That's the other thing. Our thoughts don't mean anything about who we are as human beings. They just mean that we're human and we have over 75 ,000 thoughts a day.

6:01When we're stressed out and overwhelmed and tired and things are being really difficult, it makes sense that sometimes we might have thoughts or daydreams about a time when maybe we're no longer caregiving, a time when maybe your loved one no longer needs this kind of help and care. Okay. Speaking of guilt, actually let's combine this. So this topic was basically many careblazers pull me aside and talk to me about their desires and their wishes that they have for themselves, but they don't really include their loved ones in that because their loved ones are no longer able to do that. And one very specific one that gets talked about a lot, These always come up in private for me, like when people talk to me, is basically they have thoughts and fantasies about wanting to share their life with another person, having another partner, not necessarily in some intimate physical way, but just having a, you know, maybe even an intimate non-physical relationship, being able to have a conversation with somebody again, able to have a partnership with somebody, have an intellectual conversation again.

6:59And many Care Blazers are missing that piece of their loved one and they have a desire for it. And so they start fantasizing and imagine of having that with somebody else and then they feel incredible guilt. And again, this is where I get a lot of comments about this is horrible and not okay. Care Blazer, having a thought doesn't mean the person goes and does it. But even if they did, that's also their values and their personal life. We all don't come from the same backgrounds and belief systems. Again, no judgment here. This video is just to share with you. If you are somebody who is craving a deeper intimate relationship with somebody now that your loved one is no longer able to give it to you, I am here to tell you that is a very common experience.

7:46It's not something wrong with you and it doesn't mean you're a horrible person. Another thing that I personally struggled with a lot when I was caring for both of my parents is that many caregivers are grossed out and disgusted by the care. Having to change their loved one's briefs, maybe having to take care of some wounds on the body, maybe dealing with less than ideal hygiene, dealing with overgrown toenails and feet and teeth and food. And there's lots that the person with dementia is going to struggle with on a physical basis. And a lot of care blazers who haven't had a caregiving role in the past, they get grossed out by it or they're disgusted by it.

8:31Again, this does not mean they show their disgust, right? We still have dignified care. We can still care beautifully and lovely and still have these very normal, natural human reactions. Okay. It doesn't mean anything is wrong with you. And then finally, let's end on this one, which actually probably gets talked about out loud more often than any of the other ones I've already mentioned. And this is resentment and anger toward other family members and friends who are not there in the way that you wish them to be. Perhaps they live close by and they don't come over and offer help. They don't drop off food.

9:03They don't do errands for you. They don't check on you, or they only care about how the person with dementia is doing and checking on them that they kind of forget you. There's a lot of emotional reaction that people have toward other people in their life when they're not showing up the way that you wish they would be showing up. Now, I could do a whole other video on how we can make requests and ask people for help and do things like that, but that's not the point of this video. This video is about things that do not get talked about enough that make people feel like they are horrible people, that people carry around a lot of shame, and I want to shine a light on it to let you know that these are all very normal, common things that people talk to me about all the time.

9:42Careblazer, I'm wondering what you would add to the list. Is there something you would add to the list that you're like, oh my gosh, you know, nobody ever talks about this, but I experienced it and I wish more people would. Or was there something on this list I already mentioned that you can really relate to? It's nice to know when you leave a comment, like other people, we're building a community here and underneath the videos and the comments and another way to show other Care Blazers, they are not alone. If you haven't yet ordered your Dementia Care Toolkit book, please do. There's a bunch of free resources on the website.

10:14You can go to www.careblazers.com forward slash book to download all kinds of free resources, including a accompanying workbook that goes along with this, a private video from me to you and some other goodies. Why not? So Careblazer, thank you so much for doing what you're doing for your loved one. And you're doing great, even though it doesn't feel that way. All right. I'll be back next week with another video as always. Bye. Careblazer, real quick. If you think about the most helpful caregiving resources you know of, it likely is because somebody told you about them. It would mean the world to me if you let another caregiver know about Careblazers and the support we offer.

10:53I will be forever grateful and you'll be helping another caregiver in the process. Thank you.