Episode 7 – Alycia Martel – Caring for the Caregiver
Caring for another is a selfless act. Caregiver stress kills. Todays podcast is about a caregivers journey interrupted by a car accident. Hear how she survived and continues to provide care for her father with dementia, as she practices self care everyday.
Diane Carbo: Hi, this is Diane Carbo with caregiver relief. And today I have Alycia Martel with me. Alycia is a caregiver coach, end of life specialist, a death doula, which we will talk about in the future. And she’s a podcast contributor. Alycia I’m so excited to have you today. And I’m really excited about our topic. You are actively caregiving for your father. You’ve been a caregiver now for over 14 years and you have a very unique story to tell. So I thought we’d start with that today. We’re going to talk about caring for the caregiver. Tell us a little bit about what happened to you and how it affected you?
Alycia Martel: Over three years ago, I was in a car accident. I was in a position to be able to go back to work for a little bit of time. Now, previous work in special education. I wasn’t going back to that I was driving for a private company that does school transportation for special children. I was driving a regular minivan, the kind that anybody would own. I was parked at a stoplight. I was, rear-ended pretty hard. Set my van sideways and I ended up with a really nasty concussion and severe whiplash. I’m still recovering from that. I ended up diagnosed with a TBI, that is a traumatic brain injury. I have post-concussive syndrome. Which falls under that category. That happens when a concussion does not heal properly after a certain amount of time,. Which is generally agreed on as about 12 to 18 month. Concussions involve a lot more than a few days of headaches and needing to sleep for a week. It involves a lot and involves basically everything. Every system of your body. Because as my neurologist put , you have a chemical equivalent of a sandstorm in your head. But she didn’t use the word sand. Wow. She was never moreaccurate. I’ve never heard anything more accurate in your life? It affected everything that I did from my motor skills to my speech. Even now, as we’re talking, I think I’ve shared with you also offline here. I feel like I have aphasia .Which adheres with A word recall. I stutter. I slur, I dropped my thoughts in this sentence. There’s a whole list of other things that fall under that one category alone, .That there’s the cognitive piece where you have something called brain fog is common for other illnesses too. you don’t quite feel as if you’re quote unquote here, in the moment. That comes with some ADHD symptoms too, and you can’t concentrate or hyper you’re scattered.
I lost the name of common objects, like drill bit. I forgot what a drill bit it looked like. Now I grew up. I I married a master carpenter. I know my power tables, and my boyfriend was a tinkerer. He’s fixed items. I know my power tools. This is, these are common objects in my world.
I couldn’t identify drill bits. I couldn’t identify a screwed on, I would do. And I still do random things to say such as put a condiments from our kitchen and various places in the house. My short term memory is pretty rough. I have mobility issue. Yeah. I ended up with a vision disorder.
Diane Carbo: I want to make people aware that after a traumatic brain injury, something that most people don’t know is that 18 months to two years after you have an injury your brain, the scar tissue shrinks, and it also breaks the connections, the neural pathways. It breaks them as the the scar tissue shrinks. So you start having new and different symptoms or worsening symptoms over a period of time as well. I’ve been in nursing for 50 years and I did a rehab nursing. So worked with head injuries quite a bit up at sister Kenny Institute in Minneapolis many years ago. So when you’re telling me what’s going on with you I’m very familiar with your struggles . What amazes me even more is that you were caring for your, was it your dad at the time?
Alycia Martel: Yes.
Diane Carbo: And your back carry for him as you’re recovering?
Alycia Martel: Yeah. The first, obviously several months, I had to take a back step. Now , my boyfriend of several years was living with us. And he was out of work. He had to step up big time and become the caretaker. , not only did I have my dad, but I had my daughter and his daughter wasn’t over when I was full time at the moment, but was here on every other weekend. And he had to step up and take care of all of us let me tell you, my dad is a peach. He is pretty fun to be around. We have a good time here. We do. We have a lot of laughs and he likes to poke a lot of fun. You gotta be able to take some good ribbon if you’re around him. So that wasn’t very hard as he was already acclimated to him. But taking care of me. That was a different story. I needed a lot of actual physical work. Whereas my dad is still very physically healthy. He’s not very hands-on. I needed after one guidance just to get around the house because I had vertigo and no depth perception. So I was literally walking into things I’m falling back down. I was forgetting how to do simple things such as make a peanut butter jelly sandwich. I had to learn how to be in the kitchen all over again. So I wasn’t allowed to be in the kitchen for a few months. He had to take over the cooking for of family. My daughter, who was a teenager, so that was fine. And she’s been coping since she was a child. You had to also learn how to get new communication styles because aphasia was so bad. I was mixing up my words big time. I would try to say, may I have a cup of coffee? And it would come out coffee may I have a cup of ?So everybody around me was having to figure out what I was saying. . Just words will come up my mouth for no reason at all.
And the days that he wasn’t around I would have to step up and try to take care of dad. I got done, he was happy and healthy. That was pretty much just about it because then I would be so tired. I’d be on the couch.
Diane Carbo: I want caregivers understand there’s very many different kinds of aphasia. Basically, I’m just going to give them an overview. Receptive aphasia and they don’t understand what you’re saying to them. You had expressive aphasia. Which means your words just weren’t coming out, jibberish. You couldn’t express yourself. You’re very blessed that you’ve really recovered. A lot of that has to do with your good health as well. So tell me what you were struggling. God bless your boyfriend. He was taking care of you. What would you have done? Had he not been there?
Alycia Martel: I’m not entirely sure. I don’t know. I would have found a way because that’s what I do. And I would have had no choice, but I’m not sure.
Diane Carbo: Yeah, I was just curious if there was a plan in place for you, if something had happened. Now, here you are three years later and you’re still struggling with your own health. I think that many people don’t understand it, many caregivers out there are doing just. That they have their own chronic illness, their own mental health issues, as well as physical illness. And they’re providing care for, or a family member 24 7. As well as some of them have kids at home, such as you’re. You’ve got a teenager. On top of it, you were trying to work. You were trying to get back to work and many caregivers are. What are you doing to take care of yourself? Because I tell my caregiver. This is a marathon. It’s not a sprint. And you have to pace yourself. Because this could go on for 20, 30 years, your caregiving journey. What are you doing to take care of yourself to continue to provide care?
Alycia Martel: I learned early on in this particular healing journey. This is my brain. Now I do, dealing with dad’s Alzheimer’s and prior to that, I dealt with my mother-in-law brain cancer. I’ve watched what can happen to the human brain. Now, as I find it fascinating, it’s also scary and sad. I wanted to take care of my brain. I know that I need to heal my brain. So sleep is important. Very important. I get to sleep at night as normal time. I’m doing some studying now, so I’m off a little later, but I managed that by sleeping in a little bit later. Just five hours. So then my normal schedule and I take a nap when I feel like I need to.
But I know dad’s had lunch and he’s relaxed after lunch and he’s watching a movie I’m playing his Sudoku. I can rest for an hour or so and not be mess. Or if he’s out with a friend, I can back out on the couch for a while. And so sleep is priority. Number one, you got to make sure you’re well rested. . There’s so many big and little things to do for yourself. But sleep is the number one priority. You gotta rest your brain you gotta rest your body and you gotta rest your soul. If you don’t do all of those things , you’re not gonna survive. I take time in the morning, over my cup of coffee. To get my day started, they’ll hear my face talk and stuff on Instagram.
Diane Carbo: So you adjust your time to allow yourself the luxury of having me time, at least a little bit every day.
Alycia Martel: Yeah. And I have periods of built in over coffee in the morning. Couple of days a week, if I needed to, I know I can take a nap. And then in the evening, dad gets picked up by a friend every night. So , I have guaranteed me time at night. No matter what I do with that time is a different story. Sometimes I have to do housework or I need to study or I need to do other work. But sometimes I can just relax and doze off. And sometimes I’ll see a friend or I’ll video chat with a friend,. But every day you need to unwind
Diane Carbo: yes. I think that one of the biggest things is caregivers feel like they have no choice in what they do when they do it and how they do it. And many feel stuck. I think that one of the things that you’re saying here is here you are. You’re trying to heal your body. And care for your dad. And caregiving is intermittent and it is unpredictable. So you have to grab those moments of time for yourself. Now you do something that I get to giggle over. You actually have a virtual cocktail, with a friend, which you mentioned in one of our previous talks. I love that because we need to socialize as well and we’re exhausted you can’t keep giving, giving, and not replenishing your heart, your soul and rejuvenate yourself. I think that one of the things that I loved is that you and your friend have this this regular time where you sit and have your little happy hour type thing.
Alycia Martel: We love it. The last time we did it, wasn’t too long ago and, fill in what was happening in her life and as good. As it is fun, .
Diane Carbo: What’s nice about that relationship is that you’ve met Beverly is actually from a caregiving group, correct?
Alycia Martel: Correct. We’vemet online when I first started taking care of my father. And I met her in an Alzheimer’s caregiving group. She and another person really understands what’s going on. Not everybody is going to understand , what you’re dealing with. Nobody’s going to understand the . , not everybody’s going to understand your responsibilities or why you’re tied to the house. We call it living under the dome. The dome being the house, the job But she absolutely does 100%. So I’ve been stuck. She gets it.
Diane Carbo: The beauty about that is she’s in her after caregiving journey, the person she cared for. Joyce, I believe was her mother-in-law .
Alycia Martel: Yep.
Diane Carbo: . And she’s passed she’s no longer with us. Is that correct?
Alycia Martel: That’s correct. A couple of years ago.
Diane Carbo: . So Beverly has moved on. I think one of the nice things about your relationship is she reminds you that there is life after caregiving and we should be .Preparing for that now.
Alycia Martel: That’s also something that important too.think about it .At some point while you’re active caregiving. I started to do that myself. One thing that I realized was important as part of self-care is to find a hobby,. Find something that you’re good at. I decided I was good at making jewelry. . That’s taken up a little bit and I’m also studying for mydeath doula certification. Which we’ll talk about at another point in time. I’ll have at the end, when he’s gone. I’ll be able to really get into something that I’m passionate about.
Diane Carbo: Yes. I love that you’re doing that. I love that. You’re you don’t feel like you’re going to be stuck. You still see a future and that’s hard for many .True story. I’m going to share with you is I have many caregivers who are under terrible amounts of stress. One of the stories that I find enlightening to me, I’ll tell you about the ones that I’ve lost over the years. But the one that I got the biggest giggle over is I had a 70, some year old caregiver. Who’s been caring for her mother who turned 104 recently. She calls me up and says, I’ve decided no she’s been taking care of her mom for 30 years. She says, I’ve decided that it’s my time to live. She’s 75. I have to put mom in an assisted living. And assisted living, not even a nursing home at this point in time, she says, I deserve a life of my own. It took her 30 years to get to that point. One of the things I do is tell caregivers, you have right. You have a right to your own life. You have a right to outside friendships. You have a right to so many things. Many caregivers don’t think that they deserve anything or should even consider anything other than the person you’re caring for. Even not taking care of themselves. So when I heard this, I thought, oh my, but people don’t understand retirees are taking care of aging parents. We’re living to be a hundred or older. Now. Some of us are healthy. Some of us, my grandmother lived to be 98, all her, all my little aunts. I call them little because they were just tiny women. They were my great aunts. They dressed to the nines. They had their hair done every week. They had makeup on, in fact, my aunt Betty came to my grandmother’s funeral. She was in her nineties, wearing heels. She was one deaf. Deaf could not hear a thing. you screamed at her to talk to her. She was too vain to wear hearing aids was a beautiful woman, her granddaughter. Took care of her and my three little aunts until they passed. And they all lived well into their nineties. And the granddaughter is the one that gave up her life to help take care of them
. I’m proud of you actually. Number one, trying to take care of yourself and importance of it.
Alycia Martel: Thank you.
Diane Carbo: So you do the jewelry, you’re doing a podcast for me, which is getting out there and getting known. And you’re studying to be a death doula. Your dad’s still very social. He does have dementia. Yeah, is a , slowly progressive form of dementia. So he’s still able to get out. What are your plans to continue to do self care as he declined? Have you had conversations about placing him ? Have you set boundaries or limits or have you thought about that?
Alycia Martel: Yes, I have my limits. I know when his symptoms will be too much for me to handle. I know, he doesn’t have any hands on needs. He’s continent. He doesn’t need help dressing. He doesn’t need help in any of those areas. I just need to make sure he’s appropriately dressed. Not wearing a parka summer and stuff like that. So as long as he can help himself in those regards, I’m fine. His way home, very live so he can walk down the street. His doctors are aware and I have fail-safe plays of backup, so that’s fine. He’s still can debate politics with the best of them. It’s very hard to describe my father and his symptoms. But those are pretty much the big ones. And, once he said starts for getting our names, mine and my daughter. There’s certain things that I just won’t be able to handle. And I do have my boundaries now.
Diane Carbo: One of the things that I think the caregivers are very hesitant, I will say is to set limits and boundaries and express those limits and boundaries. Like your dad’s still able to do a lot for himself. There could be a time. Not that it’s going to be your dad, but there’s going to be a time where a father can become sexually inappropriate. It’s very hard for this female caregiver, the daughter, or even the wife to handle. Sometimes. They can be aggressive. People with dementia can become very aggressive, paranoid . That’s a very challenging issue to deal with for many caregivers. I think caregivers make promises like I’m going to keep you at home. Dad, I’m going to do this until you . , I won’t put you in a nursing . They don’t realize that when they’re making these promises they they don’t know what they’re promising. Because they don’t know the future. I think that a lot of self-care has to revolve around taking care of yourself and thinking about what you can do, what you can’t do, what you’re able to handle and what you’re able to deal with. And not force yourself into a situation where you feel like you can’t get out.
Alycia Martel: If I can’t do it, it’s of no service.
Diane Carbo: This is where caregiver, guilt, caregiver, anger, frustration caregiver, regret. Those are all issues that caregiver deals with. And self-care means putting yourself first. It’s not being selfish. It’s just a necessary part of being human. If you can’t deal with it. And I think many of caregivers have a difficult time having that conversation. I can’t do this anymore. I thought I could, but I can’t, I’m tired. I need help in the house. , if you won’t let help in the house, then you need to be placed. I think caregivers get a lot of guilt over that. I just covered this on another podcast. It’s such a wasted, a negative emotion that negatesall the good we do . Caregivers actually feel guilty about taking care of themselves
caregiver guilt is so real.
Alycia Martel: And yeah, I would feel guilty about taking a shower too long. Sometimes I still do. I mean is because you’re not there. You’re not right there. What if, God forbid I was in the shower too long and he wandered, I couldn’t imagine that. Or he choked on a grape or, . All these tales, that would be the one time he turned the stove on and boom, the house would explode, really fantastical tales. That’s things that he would do. You don’t even notice the stove anymore. And he’s like, why do I got a cook? Youcook for me? That’s logical, you really can’t go wrong with that. And even eating, sometimes I could be doing the dishes right now. I haven’t done them in two days, saying stuff about nature or the laundry has to be pushed over. I can do that right now. Or even sometimes, I really need a shower. I should get this dinner, because his schedule is so regimented. Sometimes you have to swap out a meal for a shower. And that was not only him. It’s all people that you’recaring for their schedules usually are.
Diane Carbo: One of the things I want our caregivers to know out there, if they’re not alone. What they’re doing, it may not be healthy and well for them. And dishes may have to wait. Laundry may have to wait cleaning the house may have to wait if it means that you get some time to just take a breath. , I also tell people to look for resources. There are resources out there, especially for veterans where people will come And clean. The community if you can qualify for things like having somebody come in and bring food in or cook or help with the shower or whatever, it just depends on your community and what’s available. And again, churches, there are I know more and more churches are having parish nurses. If you’re a religious person and you have a need to have communion or have a visit from the church , no matter what denomination you are call that church and tell them, I need support here. The community is more likely to ignore the elderly than theyouth in their community. But it’s the elderly that are tithing. It’s the elderly that are paying for things in a lot of churches, caregivers in order to take care of themselves, oftentimes have to ask for outside help. And that’s hard for a lot of them.
Alycia Martel: It’s hard for a lot of caregivers because they’re afraid. I should say we were afraid of the money that we’re put under, if you’re asking for help and that must mean that things are worse than it appears, it may mean that were looked at, in, in competence. And we don’t want to be looked at like that.
Diane Carbo: Yeah. That’s a very good point. And so many caregivers are afraid to ask because they’re afraid to get turned down. God knows you’ve got the un-involved siblings and family members who are judging you in every turn .They’re not willing to give up their time, energy or effort. I think there’s times when you just have to say. If you think you can do this better than me come and do it for a day, come and do it for a week. Help me. And even if it’s just asking for, can you bring us meals once in a while? Can you help with the laundry? Can you help with the grocery shopping caregivers need to learn to reach out to others. Even if they don’t want to, even if they think that people are judging them. It’s for their own mental health and survival,
Alycia Martel: it is, it really is. I’ve been under a lot of scrutiny from family members and I would hide outside help, not help, but outside well-mannered well-wishers, we’ll say. I’m a little to it now at this point, I’m a little past it. I don’t really care that much anymore. Because you better remember that the only thing that really matters is your loved one’s health and happiness. If at the end of the day, they’re going to bed healthy and. Happy and you’re going to bed healthy and relatively happy. Then you’ve done your job. You did what you committed to do, and that is to keep your loved one healthy and happy as well as keeping yourself healthy and happy as possible. While doing those because it is not for the faint of heart. It is not for the week. Is not for everybody.
Diane Carbo: No. And I will tell you Caregiver stress kills. I lose several caregivers a year to death or to a serious illness that keeps them from taking care of their family member and the family members that they’re caring for is still alive and needs care. And on that note today, we’re going to end and as always, I want my caregivers to remember. You are the most important part of the caregiving equation and without you, it all falls apart. Please practice self-care every day. Be gentle with yourself because you are worth it. Alycia, thank you so much for sharing and we’re going to be talking a lot more about you, your caregiving journey and about how you take care of yourself because they’re managing a chronic medical condition yourself I applaud you for what you’re doing while you’re providing care for your dad. So I look forward to next week when we talk have a good day, till next time.
Alycia Martel: You too, Diane. Thank you.
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