5 Dementia Caregiving Truths I Wish Every Caregiver Knew

0:00Teepa Snow: These are five of the most important dementia caregiving secrets that I can think of. And I don't want them to be secrets anymore because I think the more caregivers who understand these five things, the more peace, ease, joy, comfort, the more we can actually build belief that we can get through this and we are getting through it and we're going to be okay. 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 Care Blazers into YouTube and I will pop up.

0:41Teepa Snow: All right, let's get back to today's podcast. This video is not based on any research. It's based on me, on my beliefs as a clinical psychologist who has worked with thousands of caregivers over the past 17 years, I think that these are five of the biggest lessons, not only to listen to, but to live. If you can start to live some of these secrets, life becomes a bit more easy, even though it goes against everything we think to be right. So my hope for you is that you won't just listen to this video, you'll actually start to live from some of the things you learn in this video. So let's get started.

1:23Teepa Snow: Here are five of the biggest dementia caregiving secrets that I think can make a world of difference. And if you like them and you like this kind of series, let me know because I have a whole lot more from here. The number one secret is that it's going to hurt no matter who you're caring for, no matter how much you love them, no matter how much they love you, no matter how awful or lovely your relationship has been with this person, this is going to hurt. Think about it. We are caring for somebody with a disease that does not have a cure, that progressively gets worse no matter what you do to help.

2:01In fact, the more you do to help as they progress, it doesn't stop or delay or do anything. The end result is still inevitable. That's so hard. It's so heartbreaking. There is no way to get through this caregiving journey without emotional hurt. So instead of trying to get rid of the hurt, wishing it would go away, two things that are totally impossible, instead of wishing that it goes away, what we want to do is we want to get better at feeling it, get better at dealing with it, coping with it, processing it, getting through it. Just like people go to the gym to build their muscles. We want to go to gym to build our emotional muscles, to build our emotional strength.

2:48We want to build the muscle knowing that we can support ourselves and get through these really hard times. So number one, it's going to hurt. Let's stop pretending that it's not supposed to. Number two, this is especially important for those of you trying to get other people to agree with your decisions or to be on board with what you want to happen. If you are the primary caregiver, if you are the careblazer, then this is so important for you to hear. You cannot technically cause other people to feel anything. Their feelings are their feelings based on their

3:25Teepa Snow: thoughts, no matter what you tell them. This means whatever they are thinking and feeling about your decisions, their opinions about how you're going through caregiving, about the fact that maybe you're considering placement or you went through with placement or you wanna keep them at home, whatever it is, their opinions, their thoughts, their feelings, that's just it. Their thoughts, their opinions, their feelings. And no matter what you say, no matter how much evidence you give them, no matter how much you try to convince them and get them to understand your viewpoint, you actually have zero power in changing their viewpoint.

4:01If they happen to change their viewpoint, it's because they change their thought. but we don't have the power to go into their brain and change it and get them to believe and see what we know to be true, what we know to be best for ourselves and for our loved ones. You're the one doing the majority of the care. Your adult daughter who visits a few times a week or a few times a year, she's only looking at it from her perspective, from her little snapshots. The other members of your church who have comments to say about in sickness and health, right? They're only viewing it from the outside in. Nobody truly knows what is best for your loved one, but you, the person who is there the majority of the time, the person who is caring for them the majority of the time.

4:46So we have to let go and let other people have the thoughts and opinions

4:51Teepa Snow: they are going to have because they're going to have them no matter what. So you can spend your energy trying to convince and change them, or you can spend your energy letting them know what's going on and letting them keep whatever thoughts and opinions they're going to have without feeling this pressure and urge that we have to get them to agree. We have to get them to know we're not being selfish. We're not making bad decisions. We're not dishonoring our vows for going and proceeding the way that we are proceeding. Number three, this is a really hard one. We cannot stop our loved ones with dementia from feeling emotional hurt and pain themselves.

5:31They're going to feel emotions from time to time because they are still human. Some of the things they are going through, like maybe having strangers come in the home to help them with personal care, maybe eventually moving to a care facility where other people are going to give them care, leaving their home, maybe them no longer being able to drive a car safely, manage the finances, stay home alone, all of these things. Go on vacation, plan a vacation. The person with dementia, even if they have bad memory, even if their judgment is no longer great, even if they are going to forget the reasons of why they can't do certain things, they are still going to feel the pain of life being different.

6:14Teepa Snow: The pain of not really understanding what's going on all at the same time. Their emotional pain is not a sign that you are doing something wrong or you didn't explain good enough or that you're a bad caregiver. Their emotional pain is because they are going through some painful things in life, just as you are going through painful things in life. And I am going through painful things in life. And we are all going through painful things in life because part of the human experience is that we experience emotional pain. Rather than thinking that we have to fix it right away and somehow get them to feel better right away, we can just be there to support them like we would support any human being going through emotional pain.

6:55Teepa Snow: literally being a presence for them, sitting with them, comforting them, reassuring them, holding their hand, and letting them have their feelings. We can't fix their feelings just like we can't often fix ours. We have to feel them first. They have to feel it first. Number four, my favorite, pay attention to what you're saying in your mind, the thoughts you are having in your mind. Many of us, myself included, we go through our days not even paying attention to what we are saying to ourselves in here. And I am willing to bet that the things you are saying to yourself often in your mind sound horrible.

7:31They sound like criticism. They sound negative. I am willing to bet that if somebody in your life talked to you the way that you are talking to yourself,

7:40Teepa Snow: that person would no longer be part of your life. But for us, we are just accepting it. For us, we're not questioning it. For us, we're just saying thoughts in our mind over and over about how I should be better now. I'm not a great caregiver. I'm so selfish. I'm horrible for having the thought that I wish this was all over. I can't wait for this to end, or I really miss my friends, or I want to go on vacation, or I sometimes really hate when he does this. We berate ourselves inside of our heads and then wonder why we feel so awful all the time. Fifth and final secret for this video, although I could go on and on, is that here you are watching this video.

8:14That's amazing. You're here trying to learn how to show up in this caregiving journey in the best way possible for you and for your loved one. Fantastic.

8:24Teepa Snow: You're attending doctor's appointments and getting recommendations and help from doctors. You might even be going to therapy yourself and trying to help grow. But here's the thing that is not said enough. No matter how much help you get, how many videos you watch, how many articles you read or books you read, we are never going to have all of the answers. We are never going to get it perfect because we are dealing with a condition that always changes, that is progressing, which means what we know to be true today, the thing that works today, it might not work tomorrow because tomorrow they're at a different part in their brain, a different way of functioning that what we are doing is no longer going to work.

9:05Teepa Snow: It's constantly changing. No one has all the answers because the answers keep changing, because the disease keeps changing, because their brain keeps changing. What we want to do is just hope to do our absolute best. And our absolute best looks different depending on how tired we are, how much help we have, how we've eaten, our own health. It doesn't look like perfection. There's no such thing. So just give yourself a little bit of grace, a little bit of compassion, a little bit of understanding that we are going to get it wrong sometimes because that's just how dementia caregiving works. If you are somebody who is like, oh my gosh, I get it.

9:41I've learned so many strategies, so many tips. And even though some of them do work, I still have this emotional pain, this grief, this loss, this loneliness, this frustration, this resentment, this overwhelm. If you're somebody experiencing any of those emotions, I strongly encourage you to look

9:59Teepa Snow: into our Care Collective program. I am personally inviting you to come in because while we certainly talk about dementia and all the tips and strategies, what we mostly focus on is how to deal with all these emotional truths. the emotional pain that comes along this caregiving journey? How do we support ourselves as we go through this heartbreak? And so I show up in there every single week. Other amazing Careblazers show up in there every single week. Everything is recorded. You don't need to change your schedule at all. You can get your personal questions answered. We have worked this around busy Careblazers schedules because we've been doing this for a while.

10:35Teepa Snow: And this is something that can help. So if you're interested, go to our website, careblazers.com, click on the four families section where you can learn all about it. Careblazer, I'm sending you so much love. If you want to hear more about some of the secrets that I don't think get enough attention, let me know and I'd be happy to do another video based on my years of experience as a geropsychologist, not necessarily what the books are saying. All right, sending you love. Bye.