Episode Transcript
[00:00:10] Speaker A: Hello, and welcome back to Louis Body and Mindful Caregiving. I'm Crystal Jacowski, your host, and I really am grateful that you're here, that you're choosing in.
[00:00:19] Speaker B: I pray that you are getting benefit.
[00:00:23] Speaker A: Out of listening, that you are learning things or feeling supported and seen.
I hope that you really are doing self care and that you are giving yourself what you need in the moment to get through the challenges that you are being forced to face.
I want to share a very personal.
[00:00:43] Speaker B: Experience with you today so that you.
[00:00:46] Speaker A: Can hear, see, feel my challenges.
I live on a little Farmet in Colorado. It's five acres, and we have a couple that lives here on the property.
[00:01:01] Speaker B: And then we have my mom that.
[00:01:04] Speaker A: Lives here, and then we have my husband and I, and.
[00:01:08] Speaker B: I'm a life coach.
[00:01:09] Speaker A: My husband is retired from a computer career. The farm couple that lives here, they've been maintaining the property and growing our garden and taking care of our bees, and they have been a fantastic, amazing couple. They've also been a huge support with my mom. When she was first diagnosed with Lewy Body, before she was diagnosed and I suspected that it was dementia, I found the Savy Caregiving course, and this gal.
[00:01:44] Speaker B: Said she would take the course with me.
[00:01:45] Speaker A: She wanted to take it so that she knew what was going on in case that was what really happened.
[00:01:50] Speaker B: And so she sat side by side with me during all eight sessions of this course.
[00:01:57] Speaker A: And after each session, we would sit down and we would talk. You know, we see that with your mom, and we see that with your mom, and we see that with your mom.
[00:02:05] Speaker B: And halfway through the course, we got the diagnosis of Louis Body, and her.
[00:02:13] Speaker A: And I just looked at each other like it was a relief. On the one hand, to know that there was a name to it, and.
[00:02:19] Speaker B: It was also just a gut punch.
[00:02:22] Speaker A: On the other hand, to know what it was and how it's one of the worst ones and so aggressive and so ugly.
[00:02:34] Speaker B: So because of the course, we were.
[00:02:37] Speaker A: Both ready to deal with this, and we recognized that keeping mom active or social in some way was going to be very beneficial. I've told you that her world. She keeps intentionally making it smaller, and part of that's the disease, because if she leaves the house, she feels like she needs to lean on someone, which is absolutely accurate. She does. She's unsteady enough. She needs to lean on someone, and she feels guilty doing that. So she would rather not leave the house. And she doesn't like going places where people are that she doesn't know. She's super uncomfortable with that.
[00:03:12] Speaker B: So she only likes to go with.
[00:03:15] Speaker A: Someone she trusts and knows, and that doesn't mind that she's leaning on them. And her world is really collapsing, and I don't like that she's so isolated. So I keep trying to find ways to help her feel needed, feel important. My siblings have kids in school, and I suggested that they have the kids. Like, if they have to write a report, send it to Grandma and have Grandma edit the report so she can feel needed. And I have another podcast called Breathe In, Breathe Out, and it's a mindfulness and meditation podcast. And we would get the transcript and I would have her edit it so that she could be contributing to my business.
This gal living on the farm, her.
[00:04:05] Speaker B: Name is Rhonda, and she takes my mom out.
[00:04:10] Speaker A: We have a couple of mailboxes in the post office, so she'll take my mom out once a week, and that way my mom gets out of her house. They'll run a couple of errands. If my mom needs to do a return or wants to go get groceries or whatnot, if she wants to go get a burger, then they'll go out once a week and go do that. She gets social time. She's out of the house, so she gets sunshine.
She gets a little bit of exercise because she doesn't get much of that in her little 700 square foot house, so it's really beneficial. And then once or twice a week, I end up taking my mom out to do something so that she's getting out and not quite so isolated.
[00:04:51] Speaker B: So it's been a huge gift to.
[00:04:56] Speaker A: Have them and their support. If there's an issue in her house, then I can call rhonda's husband and.
[00:05:01] Speaker B: Say, hey, I got a problem with the toilet.
[00:05:04] Speaker A: Or mom needs this hung, or mom needs that, and he'll go over there and take care of I have. They are my own little support system right here on the farm. Because my siblings live in different states.
And so.
[00:05:20] Speaker B: I learned that this couple.
[00:05:23] Speaker A: Is looking at retiring. And I knew that I thought it was like four years down the road, but it looked like it was going to be sooner than later.
[00:05:32] Speaker B: And this was very on the one.
[00:05:34] Speaker A: Hand, I'm thrilled for them and excited for them, and on the other hand, I'm sad for myself.
I'm a little selfish and sad for myself on this.
[00:05:43] Speaker B: And I had gone to my Talk.
[00:05:45] Speaker A: Doc counselor therapist and told them about this. And as I was leaving, I saw.
[00:05:50] Speaker B: This flyer in the office, and the.
[00:05:56] Speaker A: Flyer talked about, we help you navigate through all of the other options, whether it's in home care or placement and this and that and the other.
And so I thought, well, it's in the therapist's office, so it must be a vetted place. And I can probably trust them because I trust my therapist and she's not going to lead me astray. And so I took the flyer and.
[00:06:19] Speaker B: I left, and I waited a couple of days.
And I knew that with this couple.
[00:06:29] Speaker A: Retiring that I was going to need more help with mom and that sure, I could get another couple to be.
[00:06:35] Speaker B: On the farm, but were they going.
[00:06:39] Speaker A: To be able and willing to help with mom?
And it took me a year to.
[00:06:46] Speaker B: Get my mom okay with Rhonda being.
[00:06:49] Speaker A: Her friend and taking her for a drive somewhere.
[00:06:54] Speaker B: So it would be a year before.
[00:06:57] Speaker A: My mom would fully and would it be even longer because the dementia will have progressed to a different point.
[00:07:03] Speaker B: And so could it be that she'll.
[00:07:07] Speaker A: Never actually accept this person helping her or taking her for a drive because she doesn't fully trust them? So it brings in all these different facets of this challenge and this problem.
[00:07:19] Speaker B: So I waited a couple of days.
[00:07:20] Speaker A: And I finally called them, hoping that they would be able to help me navigate in home care.
And maybe there's somebody out there that would love to come to my mom's house and just pick her up once a week and take her.
Let's just go.
[00:07:36] Speaker B: And I call this person, and I.
[00:07:40] Speaker A: Feel like I've done pretty good.
[00:07:43] Speaker B: I know what my mom's wishes are.
[00:07:44] Speaker A: Her end of life wishes. I know that she wants to be kept here on the farm. I know that when she's in the late middle stages, she wants comfort, care only, and she's done.
I know her abilities. She's probably 80% independent right now, which is pretty good. She doesn't need a ton of help, but she does need help. And I just thought a little bit of help would be good. Just a little bit of help.
[00:08:11] Speaker B: And this person asked me about me.
[00:08:14] Speaker A: And asked me about mom and did kind of an intake questionnaire, can your mom do this? Can your mom do that? Can your mom do this? Can your mom do that? And then she started to tell me that my mom needed to be in.
[00:08:27] Speaker B: A home now, that it's not an.
[00:08:32] Speaker A: Emergency, but within the next short little while that I should be looking at that, because if I don't do it now, then my mom will wake up every morning and be confused as to the people. She wouldn't have gotten a chance to get to know them, that if I do it now, that my mom's quality of life would improve, and she'd probably live longer if I did that, because they would make sure that she had the right food, and they would make her exercise, and so physically, she would be better.
[00:08:59] Speaker B: And she was telling me all of.
[00:09:02] Speaker A: The reasons that I was basically letting my mom down now by not actively pushing her into a home.
[00:09:12] Speaker B: And I was really blown away when.
[00:09:17] Speaker A: I started the conversation. I was painting a bathroom, and.
[00:09:22] Speaker B: By.
[00:09:23] Speaker A: I don't know, two thirds of the way through the conversation, I was no longer painting. And my paintbrush was just laying there drying out, getting stiff and gross.
[00:09:34] Speaker B: And I was in tears because I felt so horrible about the future and the possibilities, and this was really unbelievably upsetting. I cannot explain to you the emotional.
[00:09:57] Speaker A: Mental frustration and challenges. My husband was sitting right there, and he was asking questions, and he's always.
[00:10:04] Speaker B: Been more of an advocate to get.
[00:10:07] Speaker A: Her in a home before it takes.
[00:10:08] Speaker B: Too much out of me.
He wants his wife, and I recognize that, and I understand that.
And his wife wants to take care of her mom.
So how do I balance that?
Am I failing my husband in my relationship by keeping my mom at home?
[00:10:33] Speaker A: Am I failing my mom by keeping her at home?
[00:10:38] Speaker B: But in the same aspect, it really kind of pissed me off, because my.
[00:10:42] Speaker A: Mom isn't a social creature. So if she was in a home, she would actually isolate herself into a tiny little hospital room instead of the 700 square foot house that she has.
[00:10:51] Speaker B: And she would be angry that she.
[00:10:53] Speaker A: Was being forced to go out and do exercise, and she would be sad that she couldn't eat the food that she really likes. And so there was this part of me that was mourning because of this phone call. I was mourning the loss of my.
[00:11:08] Speaker B: Mom'S quality of life that she has.
[00:11:10] Speaker A: Now, everyone was saying, well, she'll have a better quality of life. She'll have a better quality of life.
[00:11:14] Speaker B: And my brain kept asking, by whose standards?
Quality of life?
By whose standards?
Now, I went down into a spiral.
[00:11:30] Speaker A: An emotional mental spiral. And as I sat there in that spiral, eventually I reached out to my talk doc, got an emergency meeting, and I reached out to another trusted person.
[00:11:43] Speaker B: The teacher of the Savvy caregiver course, Jessica.
[00:11:47] Speaker A: And Jessica and I couldn't get together for, like, two weeks, but my talk doc was able to get in immediately. So I go to my talk doc, and I talked to her, and I said, look, this is what happened. And she was livid. She was angry. And she said, Crystal, you are one who makes like, you do all of the research, and you do everything you can to figure out what your mom needs and, you know, a step ahead. And I cannot believe that this person did this. And I am so sorry that you went through this emotional challenge.
And I'm sobbing in her office because I'm so grateful that even my mom's doctor felt like this was.
[00:12:26] Speaker B: A ridiculous way to look at it.
[00:12:28] Speaker A: And she was angry to the point that she went out into the lobby, and she took this person's stuff down, and she didn't know where it came.
[00:12:36] Speaker B: From, but she was livid at the issue.
[00:12:41] Speaker A: Now, I left her office, and I was actually very grateful for this person and my talk talk. I was grateful for the woman who upset me because it meant that.
[00:12:54] Speaker B: I.
[00:12:55] Speaker A: Now had confirmation that I was doing.
[00:12:57] Speaker B: The best that I could.
[00:12:59] Speaker A: I was right in acknowledging that my mom's still doing okay and she does not need to be in a home and that her quality of life now, if she went into a home, would actually decline because she wouldn't have the things that she loves around her. My mom's situation, your situation, may be completely different, but keep in mind, my mom is still 80% independent.
My mom is still able to cook her own food and do her own laundry, and she's great on personal hygiene.
The things that really matter as far as her functioning in a day to.
[00:13:40] Speaker B: Day, if I shoved her into a.
[00:13:43] Speaker A: Home, would actually stop happening, and she would probably actually decline faster because.
[00:13:51] Speaker B: We took away her comfort, we took away her routine and what she really enjoys. She may complain about it, but that's what she enjoys.
[00:14:03] Speaker A: Then I talked to the savvy caregiver gal, who, like I said, I very much trust. I've gone to her class twice now because of her knowledge and who she is. And she gave me the same feedback. She was like, Crystal, you have got this now.
[00:14:20] Speaker B: I bring this story to you, and.
[00:14:23] Speaker A: I share this story with you because for a few different reasons. One of them is I want you to make sure that you are doing what's right for you and your person.
[00:14:32] Speaker B: Not for somebody else's agenda.
[00:14:37] Speaker A: If you are at your wits end and your person needs more help than you can give them. And putting them in a home is.
[00:14:45] Speaker B: The best thing for all considered and it means that they are safer and.
[00:14:52] Speaker A: They have people watching over them, 24/7 which means that your burden is relieved a little bit and now you get to be their loving loved one instead.
[00:15:02] Speaker B: Of the overbearing exhausted caregiver.
I really hope that's what you do.
[00:15:16] Speaker A: Everyone's situation is unique. Everyone's is different. There may come a time that my mom's declined enough that she does need a home, because I won't be able to take care of her in that manner. And that's perfectly fine. I will gladly accept it when it gets there.
[00:15:32] Speaker B: But it's not now.
And this person was probably getting a kickback for placing her in a home.
[00:15:42] Speaker A: Oh, if I get that woman in a home, then I get a little money.
[00:15:45] Speaker B: Here we go.
[00:15:48] Speaker A: I ask myself this question whenever it.
[00:15:51] Speaker B: Comes to a big decision with my.
[00:15:54] Speaker A: Mom and how I need to deal with something, I always ask myself.
[00:16:00] Speaker B: How.
[00:16:00] Speaker A: Will I feel about this in five years?
Because I have no doubt that my mom will be gone in five years.
[00:16:10] Speaker B: So in five years, how will I feel about changing her meds in five years?
[00:16:18] Speaker A: How will I feel about making sure.
[00:16:20] Speaker B: That she manages her diabetes in five.
[00:16:25] Speaker A: Years, how will I feel about putting.
[00:16:26] Speaker B: Her in a home?
[00:16:30] Speaker A: Right now? The answer about putting her in a home is gut wrenching guilt.
[00:16:38] Speaker B: Right now.
That's my answer.
[00:16:41] Speaker A: And that is why it was so difficult for me when this woman was.
[00:16:44] Speaker B: Like, you need to do it now.
[00:16:47] Speaker A: I encourage you to start asking yourself that question.
[00:16:50] Speaker B: When I think about being a caregiver.
[00:16:54] Speaker A: And working with my mom, there are.
[00:16:56] Speaker B: A couple of things that I think about.
[00:16:58] Speaker A: I told someone, I don't want to have regrets now. We're all going to have regrets. That's just the way life is. There's always going to be something that.
[00:17:06] Speaker B: We look back on and go, oh man, damn it.
I'm having realistic regrets.
[00:17:14] Speaker A: I don't want to regret completely putting my life on hold on behalf of my mom.
I don't want to regret losing myself, meaning that I need to make sure that I am doing something for me to connect to me, crystal outside of.
[00:17:35] Speaker B: Being a caregiver while I'm working with.
[00:17:39] Speaker A: My mom so that when she passes.
[00:17:41] Speaker B: I still know me and I haven't.
[00:17:46] Speaker A: Downspiraled into something I don't recognize anymore. I do not want to regret who.
[00:17:52] Speaker B: I become because I am choosing into being a caregiver.
[00:18:01] Speaker A: I don't want to regret how I treated my mom while she's declining. So I don't want to regret a conversation that we had. I don't want to regret yelling at her or making her feel horrible. I don't want to regret not taking the opportunity to connect with her on.
[00:18:25] Speaker B: Silly things whenever I have the opportunity.
[00:18:32] Speaker A: When I look forward in five years, will I regret this decision?
As long as I can say no.
[00:18:41] Speaker B: Then I keep on keeping on.
[00:18:45] Speaker A: Every now and then something comes into.
[00:18:46] Speaker B: My realm and says, hey Crystal, you might want to double check this.
Like that post in the Louis Body mindful Caregiving Facebook page or not?
[00:19:02] Speaker A: Mindful caregiving. I apologize. It was a Louie Mahdi Caregiver Facebook page and they were talking about how their biggest fear or sadness was that they had lost themselves completely.
[00:19:14] Speaker B: I don't want to be there and.
[00:19:17] Speaker A: I would rather know that now and look forward and say, okay, so how am I going to make that work? How am I going to take care of myself? How am I going to support myself and encourage myself so that I don't regret it? It means that you have to take action steps now. It means that you look at it and you say, what support systems are out there to help me get through this?
[00:19:43] Speaker B: How can I get respite care?
[00:19:46] Speaker A: How can I get someone to spell me off so that I can go to the store or whatever it is that you need to do?
You are the one who has the power to make sure that you're okay. Nobody else can pull you out and say, hey, I know that that has been shit, but let me pull you out of there and make it better. Nobody can do that because they're not going to know what you need and how you need to heal and change and shift. Only you can do that, which is why self care is so important.
Self care. Self care. Self care.
[00:20:20] Speaker B: It continues coming back to that.
In five years, in ten years, in.
[00:20:28] Speaker A: 20 years, will I regret this?
Had an opportunity to go on a.
[00:20:36] Speaker B: Week long girls trip and take a break. Now, in five years, would I regret not taking that trip?
[00:20:46] Speaker A: Would I regret holding myself back and saying, no, I need to be home for mom.
[00:20:52] Speaker B: Yeah, I would, because it's a great.
[00:20:55] Speaker A: Opportunity to relax and breathe and do some self care and spend some time.
[00:21:00] Speaker B: With a dear friend. It's a gift.
[00:21:04] Speaker A: And if I don't do that now, then I am encouraging a spiral down, and I will lose myself.
What do you need to do for yourself as you navigate through this?
[00:21:19] Speaker B: What do you need to bring in?
Who do you need to bring in to help you be okay, to help.
[00:21:29] Speaker A: You keep yourself while still serving and nurturing someone else?
You are choosing to give the gift.
[00:21:42] Speaker B: Of service of someone's life, and yes, you're choosing it.
[00:21:51] Speaker A: You can choose out.
[00:21:52] Speaker B: You can tell somebody else to do it.
The state will help.
[00:22:02] Speaker A: Somebody said to me that I was choosing in, and that meant that I.
[00:22:06] Speaker B: Couldn'T be a victim.
[00:22:08] Speaker A: This isn't happening to me.
[00:22:11] Speaker B: I'm choosing it.
[00:22:13] Speaker A: So now when my mom says, oh, I'm so sad that I'm making you go through this, I say, Mom, I'm choosing it. I'm choosing to stand by your side. I'm choosing to call the doctor and make things better, because it's true.
[00:22:25] Speaker B: I am.
[00:22:26] Speaker A: And you know what happens when I say I'm choosing it?
[00:22:28] Speaker B: I feel more empowered.
I'm not so weak. I'm not so beaten down, not so tired, because I'm like, yeah, you're right. I'm choosing this.
I could choose out.
And in choosing out, sure, somebody else has to step up, and yet I have that power, right?
Think about it. Do some research.
[00:23:01] Speaker A: Find out ways that you can choose out. If you want to choose out. And if you don't want to choose out, then you acknowledge that you're choosing in. You're acknowledging that you want to be in this. Some part of you wants to be here, wants to be present helping these people. Okay, fine. So how can you make it so that you don't regret it in five years?
[00:23:18] Speaker B: How can you make it so that.
[00:23:19] Speaker A: You do not regret choosing to be.
[00:23:21] Speaker B: A part of this transition once they're gone?
How can you make it so that you come out of this okay, better, stronger?
Because you chose in.
You chose strength.
[00:23:40] Speaker A: You chose self care.
You chose support systems.
You chose all the help that you could possibly get. You did research. You dug in, and you pulled it in. Go to the senior center and find out what resources are there to help you out, because by jigger, there are a lot of them.
[00:23:58] Speaker B: All you have to do is look.
[00:23:59] Speaker A: And ask and find.
[00:24:01] Speaker B: Choosing in means that you are empowered.
[00:24:05] Speaker A: And looking at will I regret this in five years?
In ten years is a way for.
[00:24:12] Speaker B: Me to take my own temperature on every decision. When I'm working with my mom, it means that when she does pass, I can look at it and say, that.
[00:24:27] Speaker A: Was one hell of a roller coaster.
[00:24:32] Speaker B: I'm glad that it's over.
I'm glad that I chose in.
I'm really glad that I was aware enough that I don't regret what I did, what I chose into and the path that I just walked with my loved one.
There will come a time I will likely choose to not be so upfront.
[00:25:08] Speaker A: And have somebody else helping her instead.
[00:25:12] Speaker B: In home care, whatever that looks like.
[00:25:15] Speaker A: And at that time, I will be.
[00:25:16] Speaker B: Able to say, yeah, I'm not going.
[00:25:18] Speaker A: To regret this because I'm also protecting.
[00:25:21] Speaker B: Myself, my own well being, my own mental and emotional health, because you got two people to deal with, their life is ending and yours will go on. So how do you want that to look afterwards?
If you're not thinking about that now, how will it be?
Who will you be?
[00:25:49] Speaker A: You have the power to create something different. You don't have to lose yourself.
[00:25:53] Speaker B: You don't have to spiral.
Start loving yourself now.
[00:25:58] Speaker A: Start giving yourself just as much love, compassion and service as you're giving them. Find the support you need. And I'm going to get off my soapbox because I just feel like I could go on and on and on and on in this.
Please, please give yourself some self care and I hope to have you back again in a couple of weeks for the next episode of Louie body and Mindful Caregiving.
