Episode Transcript
Hello, and welcome back to Lewy Body and Mindful Caregiving, with me, your host, Krystal Jakosky. And thanks for coming back today. I want to talk a little bit about what a caregiver is. You see, when my mom, when she first moved here to Colorado and I was watching her as she fell and watched her as she was struggling, and then I was navigating what was going on for her. I really didn't think that I was a caregiver, and I felt like I was just a daughter that was helping my mom figure out life and helping her be okay because I didn't want her to fall and hit her head.
And then I'd find her one day in a really bad situation when she started forgetting things and she started noticing the Crawleys, she calls them her “Lewies”, and I had the gut feeling that this was dementia that we were dealing with. I took this class called the Savvy Caregiver Class. Even at this point, I felt like I wasn't necessarily a caregiver. My mantra had been that I'm not a caregiver. I'm just her daughter. I'm hanging out. I'm helping her out. My mentality of what a caregiver was happened to be something more along the lines of changing diapers and helping them take a shower and cooking food for them. Think of the more hands-on medical kind of challenges that she would have or an older aging person would have as they just start to lose the ability to function.
That perspective has changed in the Savvy caregiver class. She gave us a slideshow, and in this slideshow it talked about what the role of a caregiver was, and she pulled this one slide up and it was blacked out. And she said, “Before I reveal this, I want to ask you what you think a caregiver is.” And we all started listing our thoughts and ideas pertaining specifically to aging parents what a caregiver looks like. And they were all more clinical, more medical, more of the dirty jobs, frustrating jobs aspect of things.
I was still stubborn in my “I'm not yet a caregiver, I am not yet there.” And that snap you heard was me pounding my hand onto my fist because I was very much dedicated to not believing that I was a caregiver. Well, then she started to show the slide. I want you to pause for a minute as I read off these things and tell me if you were or to yourself, I guess, have you ever done this for your loved one? Where are you at?
Have you ever been a nurse? Have they ever have had a burn or a scrape or back pain that they needed a patch put on? Have you ever been a nurse helping them out? Maybe their muscles ache and you help make sure that they have ice and heat and ibuprofen. Simple. Not that big of a deal.
You've been a nurse. Have you ever been a guardian? Watched over them, took them under your wing, helped them through something that was difficult. Have you ever been a behavior manager? Have you ever been a cook to help them through? Have you ever been a companion and a comforter? They're lonely. We soothed them, kept them calm. When something was a very big deal, stressful for them, and yet, you were able to keep them more relaxed.
Have you ever been a maid or a laundress? Helped them change their bed, flip over the laundry, clean the house a little bit. It's just a little thing. It's not a big deal. I just did her dishes. You're caring. You're giving help. What about a safety officer? Concern about trip hazards.How are they going to get in and out of the tub? Have you ever installed grab bars so that if they do start to fall, they have something to hold onto their safety? Have you ever worried about and taken measures to support their safety?
Have you been a CEO or a CFO who helped them with their finances or their day to day activities? What about a decision maker when they just simply cannot come up with an answer themselves or the answer that they come up with really doesn't work in the situation that you're in. A handyman? They need someone to hang these pictures or my toilet seat is rocking. Hey, my dishwasher's a little weird or I can't figure out how to turn on the hot water.
Family counselor: Have you been the one to notify and educate the rest of the family? Still, what's going on? You've been a diplomat. Have you had to help other people see your person's side? Help them understand what's going on so they can be a little bit more patient with your person? Have you been a social worker or have you been a social director?
Have you been a liaison with professionals going to doctor's appointments, making sure they get where they need to be and the correct information is brought to light? When she showed this slide I wrote them down in my book and I put a star by all of the ones that I had done for my mom up to that point. Now, remember, this was before the diagnosis. I started that course in September of 20 so I didn't have a diagnosis yet. I looked at this list and I put a star by all but three, that was the moment that my mentality changed. And I went from I am quote unquote, just her daughter to shoot. I'm a caregiver.
There's way more weight to it than the, “No. I'm just a family member. I'm just helping out. Not a big deal.” When you recognize that you're a caregiver, you recognize their needs, you are supporting them. You are ensuring that they are taken care of because they can no longer do it themselves.
Now, the objectives of a caregiver are to make sure that the person is safe and comfortable. It's to help meet their daily care needs. Are they able to take their meds? Are they able to get food for themselves? Are they able to brush their teeth, brush their hair, take a shower, personal hygiene, pick their own clothes out? Their daily needs. How does the food even get into their house?
Contented involvement. As a caregiver, you want them to be involved in things that bring them peace. You want fulfillment for them so they can feel like they're achieving something because it will help their mood. And you sincerely want to reduce their suffering and the challenges that they're going through. Now. When I started embracing and acknowledging that I was a caregiver, I did a little research. I found that the definition of a caregiver is anyone who has or is helping to take care of the needs of somebody else who is unable to completely 100% take care of themselves.
So if you sit with that for a minute, you recognize that a caregiver, it can be a parent taking care of a child because the child can't pay their bills, the child can't make big decisions. The child is just learning. They're not adulting yet. They're not old enough. So you are caregiving for that child. You may have been a caretaker when you decided to take food to someone who was in need or when you encouraged somebody to come out and go to the gym or go for a walk with you because you recognized that they were down and struggling. A caregiver is literally simply someone who chooses to help someone else who is unable.
I believe that in some cases, being a caregiver means that you're choosing in and it's a temporary thing and it's not a big deal. And it fuels your soul about as much as it fuels the other person making those cookies to say, “Hey, I'm thinking about you” or inviting someone on a walk. If it fills your soul, it helps you out. It lightens your load a little better.
So there are some aspects to caregiving that may be very uplifting and positive for both the caregiver and the recipient. And then there are the parts that wear you down a little bit and stress you out if you are in it long term, like a parent or someone who is giving care to an aging person, you're not choosing the caregiving as much. It's one of those responsibilities you're still choosing because we have the option to choose in or choose out. But it's more of a mantle that is there constantly until you choose to take it off once in a blue moon. Hey, I know a friend is struggling, so I'm going to go reach out.
In that vein of thinking I have some statistics for you, some facts about family caregivers. And again, this is from the Savvy Caregiver course. So I’m just going to tell you really, really quick. Family caregivers provide 80% of the community care. 70% of those family caregivers are women, and they provide, on average, 4 to 6 hours per day of caregiving, and that usually lasts for 4 to 5 years. Twenty percent provide care for more than five years.
30% of these people are employed, so they have a job on top of being a caregiver. A growing percentage also care for children at the same time that they are caring. More interesting facts about caregivers, specifically dementia caregivers, are that they are twice as likely to have physical or psychological problems. You are constantly worried about their health and their well-being. You are constantly worried about whether or not the meds that they're on are doing what they need to do and how are the side effects doing, and did they sleep last night? And are their hallucinations doing okay today? Are they steady, whatnot, because you are so focused on the other person's health? It's really common for dementia caregivers to forego their own. And if you forgo your own and you forgo your own self-care, that means you're going to slide. Instead of feeding your soul and filling your bucket and doing self-care, those people, they are twice as likely, dementia caregivers, are twice as likely to have physical or psychological issues.
They are more than twice as likely to need to use medications for mood and nerves. And so stress. I'm so anxious because I'm dealing with this all the time. I don't know what to do here. I have a drug. I am so depressed because I feel like everything goes to them and I'm so tired and I don't know what to do for myself. Here's an antidepressant, here's the drug. Let's help you out.
Dementia caregivers are at a much higher risk of social and economical distress. The social distress is because they are so much giving to their person that they just don't have bandwidth to go out and be with friends, be with other people that they love and used to spend time with. So they start to isolate. They start to pull back and remove themselves from things. And that's not healthy either, which is going to contribute to the mental decline, which is going to contribute to the physical decline and all.
It all falls into place with one another. They're like dominos. They're also only half as likely to use health care themselves. You are constantly going to doctors appointments, trying to help your person, and you just don't want to go to doctor's appointments yourself. So you'll just deal with that ache and that pain and see where it goes.
Now I'm here to tell you that caregiving is a hefty weight and that self-care is the paramount answer to that caregiving. You are a beautiful human being. You are absolutely wonderful for choosing in to helping your loved one navigate this very difficult time. And it's going to be upsetting. It is going to be frustrating. It is going to be overwhelming. There are going to be times when you are so exhausted, you just want to rail, but you don't have the energy to scream. So you collapse and cry and maybe you don't even have the ability to cry because you are so exhausted. You just need to be alone on the couch. That is perfectly fine. Give yourself more permission. Give yourself the pat on the back, the gift of a moment for you, a moment to breathe, a moment of pause, a moment of nourishment. Whether that be for your spiritual body, your mental body, your physical body, or your emotional body, whatever you are most in need of at that time.
Caregivers. There are more caregivers of aging adults in the homes, in families than there are in the medical system. We are doing a huge service and yet we have no training for it. We do not know what we're doing. We are making our way through it. And that is the most frustrating thing: the random up and down nature of Lewy Body. The way that those protein deposits grow in the brain means that we can't do that. And if we are constantly divining what is going on for our person and trying to understand and trying to support them and make things better, you are going to be drained.
It is paramount that as a caregiver you give to yourself as much love, time, compassion and effort as you do to your person. Because without giving to yourself, you'll have nothing left for them. I sincerely thank you for listening today. I hope that I've opened your eyes a little bit and that you can see yourself in the same thing.
I really did not believe that I was a caregiver. I fought against it so hard and here I am some months later and I see it and I feel it. And I recognize the weight that has been pulling on me for nine months now and even longer than that, because I recognized that she was declining well before. Well before the diagnosis, well before all of the MRI's and the ENT and the other doctors.
If you take a moment to pause and look at it at too, you've been doing it longer than you think. Give yourself a little bit of credit and then do a little bit of self-care so that you can renew your love and connection with that person. Tomorrow. Go do some self-care and I'll see you again here next time on Lewy Body and Mindful Caregiving.
