Breeda Miller inter 01.05.21 - 2021-01-07, 12.54 PM.mp3
Breeda Miller inter 01.05.21 - 2021-01-07, 12.54 PM.mp3: Audio automatically transcribed by Sonix
Breeda Miller inter 01.05.21 - 2021-01-07, 12.54 PM.mp3: this mp3 audio file was automatically transcribed by Sonix with the best speech-to-text algorithms. This transcript may contain errors.
music intro:
Welcome to Grieve with Ease, a podcast where we talk about the many sides of loss and death. On each episode, you'll hear from a cross-section of men and women who share how they dealt with loss, found comfort and even humor during what many consider a very dark time. The show is designed to bring comfort, answered questions and let you know you are not alone. Now, here's your host, Martika Whylly.
Martika Whylly:
Breeda Miller is an author, speaker and creator of The Essential Guide to Caregiving. Her passion is helping caregivers carry on, as well as others who need encouragement and a bit of inspiration. Welcome, Breeda.
Breeda Miller:
Thank you so much for inviting me to be on, and I'm looking forward to it.
Martika Whylly:
Well, thank you for having me. I'm going to record this, if that's OK.
Breeda Miller:
Absolutely.
Martika Whylly:
Yeah, OK. Because I wasn't sure if I mentioned doing a pre sometimes I do pre interview with people I've never met for the first time, but because I'm running short on time, I'm usually ahead of myself.
Martika Whylly:
But this time I'm not. I'm starting the new year and I'm just kind of doing, you know, not scrambling, but trying to get things going before I do that again. Yeah. So think thank you for pre-senting your questions and what I might ask you if you just want to introduce yourself a little bit. Thank you so much. By the way, Breeda am I pronouncing your name correctly.
Breeda Miller:
Yes. And yours? Martika.
Martika Whylly:
Martika. That's correct.
Breeda Miller:
Martika, yes.
Martika Whylly:
So thank you so much, Breeda Miller, for coming on the show and talking to us about caregiving. Did you want to just kind of introduce yourself and tell us about yourself before I ask you some questions?
Breeda Miller:
Absolutely. Well, thank you. And I'm delighted to be here as well. So I am an accidental caregiver. I didn't know what I didn't know. I didn't know anything about caregiving. I had no medical training, no background. All I knew was that I loved my mom. And as the only daughter with four brothers, I was the default caregiver. So my mom had a stroke. She ended up moving in with us, my husband and our three teenagers and a big old farmhouse. And it was good until it wasn't. And Mom lived with us for nearly eight years, including hospice care in our home. And I was her primary caregiver. And it was the worst experience of my life and the best experience. And I'm very grateful that I was able to do it. So I learned a lot in the process. I've been a speaker for many years. I'm a writer. I have a tip book called The Caregiver Coffee Break, and I've distilled the wisdom that I learned on the job training as my mother's caregiver to now help other people. And that's what I do.
Martika Whylly:
Well, that is very what's the word, courageous work, and it takes a takes a certain person, I have worked in the nursing home for a few years and it does take a certain person and not everybody could do what you've done. And so I'm very grateful for people like you that that have been able to care for their parents.
Breeda Miller:
Thank you. Thank you. And you're right. It's it's not right for everyone. And some people that you think would do it well, it doesn't suit them. They're wound too tight or they're not able. You know, I have some some characteristics that I think that you have to recognize within yourself and then find ways to use them every day to to make sure that it doesn't deplete you and that caregiving that you're left with the best of you, not just what's left of you.
Martika Whylly:
Yeah. And a lot of cases of well, from what I've seen, it's a very it can be very depleting.
Breeda Miller:
Absolutely.
Martika Whylly:
And in nursing homes. Yes. Especially when they're short staffed. So.
Breeda Miller:
Yeah.
Martika Whylly:
Well, since you've been, how long have you been caring for others?
Breeda Miller:
Well, my mom was my primary person that I cared for and she passed away almost 10 years ago. And then my husband's parents, we were not there full time caregivers, but we were actively involved in their care. My father in law and mother in law both passed away last year within like nine months of each other. And mother in law lived with Alzheimer's for about 10 years. And my father in law was a very feisty, very hearty 90 year old. And stubborn is probably the best word that I would use to describe him. And so he was very challenging for my husband and his family, his siblings to care for. And I was on the periphery, but happy to be able to be helpful.
Martika Whylly:
Mm hmm. Well, do you do you do some caregivers begin grieving the loss of their loved one for years before they actually die?
Breeda Miller:
Yeah, and that was a concept that, you know, I had no idea. But as my mom began to decline, it took several years.
Breeda Miller:
She did not have Alzheimer's disease, but she had vascular dementia. And that was because what she was experiencing was congestive heart failure. She had years and years and years of high blood pressure and it damaged her heart. And so the heart congestive heart failure is means the heart is the heart muscle is failing very slowly. And so it isn't able to pump the blood to the brain. And vascular dementia is what that's all about. And it's the difference with vascular dementia, as I understand it, is that it comes and goes. It's intermittent. So there would be times when she'd be all there and she'd be herself and it would be wonderful. And then other times she was for she didn't know where she was. She was agitated, she was frightened, and she couldn't do most of the things that she loved to do best. She lost her balance. And so her decline was slow, but it was steady. But I just remember how sad I was when I realized that I couldn't go to her and talk to her about my teenage daughter and say, Mom, what do you think? And get some wisdom or get her opinion because she just wasn't herself. And I couldn't have the chatty conversations about the world or about things or about ideas or things I wanted to do.
Breeda Miller:
I had to simplify things. I had to speak in a different way to her and communicate with her in a very limited, different way where it was it was not so much a two sided engagement. It was me just trying to get her to help her to be safe or to find out what was bothering her, to help her be comfortable, to get her to drink water.
Breeda Miller:
That's a whole different experience. And so I grieved the loss of that relationship with my mom, which was very close. And it was like that for like three, maybe four years. And that was so hard because here I'm caring for her and I have my mom in my house, but I didn't, you know what I mean? So so that's what I mean about grieving the loss while she's still there. So I was grieving the loss of the relationship that we had, the places we would go. We love to travel together. And the last big trip we took, I thought it was going to kill me. We she had her walker because she was unstable. She wasn't. She was she was frail. She was very frail. And so the spunky little traveled world traveling lady that was a great companion was now I was, you know, having to carry all the bags and deal with the walker and the wheelchair and getting through customs and getting through security.
Breeda Miller:
And it was absolutely exhausting. So I was grateful that we were able to take that last big trip, I took her back to Ireland and but anyway, it was it was yeah. But it was a whole different thing. A whole different thing.
Martika Whylly:
Wow. Well, at least got to travel with her. I know they become more like children because I know traveling with children is this the same thing with having to prep and, you know, the walkers, whatever or what have you.
Breeda Miller:
Yeah, exactly. I often, you know, my all my go to was finding humor in the in the absurd and the really awful situations. So I mean, this was no disrespect, but caring for her was like traveling with a toddler but without the cute clothes or the good smells.
Martika Whylly:
Mm hmm. Yeah. Well, yeah, you know, they say once a man, twice a child. And that is so true. Mm hmm. Yeah. Well, when it when caregiving ends, do feel relief instead of the grief you expected or do you feel guilty about not feeling sad or is that is that normal?
Breeda Miller:
Yeah, that that was another eye opener. I was very grateful that we had the assistance of a wonderful hospice organization because just as I had no experience with being a caregiver or with dementia or any of those things, because my parents emigrated from Ireland just before I was born. So I was the first one born here. And that meant I had no relationship with grandparents or elderly aunts or uncles. They lived on the other side of the ocean. So this was all new to me. And I didn't have a frame of reference about even what would be normal. So, as you know, I was exhausted of caring for teenagers. I had a job in my home. I had an office there as well as caring for my mom. And, you know, I'd like to say I had the worst of both worlds because I never got to leave. And so when my mom entered hospice, I didn't know anything about the stages of death, the stages of dying, the physical aspect to it, the mental the emotional aspect, what to expect. And it was frightening. But the hospice folks shared with me a number of really good resources of books. There was a social there was a whole team, there was nurses, there were social workers, there were home health care aides. And they saved my life because I learned what to expect. I learned what was happening and what was normal. And it helped me so much because things that I thought, well, of course, she should eat. And of course, I should make sure she's still staying hydrated and that she's doing all these things.
Breeda Miller:
And they shared with me that the dying process is is a natural process. And they educated me that trying to get her to eat was actually going to cause her more discomfort and more pain at the end of her life. And they're really the kindest and loving thing I loving, most loving thing I could do was to follow her lead. If she asked for something, I absolutely gave it to her. But I didn't say, OK, Mom, here's your meal, here's your food, because she would want to please me. She would want to do those things even if it hurt her and I wouldn't have any idea of that. So I knew that and I followed that lead. But I will tell you that when family members came to visit, it was hard because they didn't know anything about this. And at one point I was accused of starving her, which broke my heart.
Martika Whylly:
Yeah. And then, yeah,
Breeda Miller:
They don't know.
Martika Whylly:
Yeah, they they just they don't know. And you know what, you cannot you have to forgive the ignorance because they don't know and people they, they don't mean to. But when you were speaking it reminded me of my cat Tasha. I have never had an elderly cat before.
Martika Whylly:
And thanks to working in the nursing home, I recognized the old age signs in her. She would fall over and I didn't know what was wrong with her. I didn't think it was age. But then it dawned on me, I think she's a little older because what I did adopt her from the Toronto Humane Society, they they weren't sure about her age. So but she was showing me she didn't want to eat because she stood right in front of her kibble bowl and just didn't eat. She was just standing there for a while. And then same thing with the water dish. And I thought, OK, you're telling me that you're not eating on purpose, you're not drinking on purpose because you're on your way out. And she knew and I kind of knew and I you know, we don't want anyone that we love to die. So I tried to force feed her sort of well, not force feed her. I had like a little syringe that had a bit of lemon water in it and I figured just a few drops because she hadn't eaten in two days. And I thought, well, let me get something into her. Well, that's when she that's when she passed. So yeah. So it really is helpful. And I'm grateful that you got the help in the hospice because, you know, not everybody gets that kind of help and I think maybe they might make matters a little bit more uncomfortable for the person that's dying, but get to know these little things makes a huge difference. And I was able to help her my cat Tasha transcend because I was like, OK, do I have to call somebody to put you down?
Martika Whylly:
And then the next day should be should be chipper. I'm like, OK, we'll give it another day because she wasn't eating her drinking. And yeah.
Breeda Miller:
And you know, when you think about it, in previous generations it was normal. People lived with their elderly relatives or multigenerational families. And so children were experienced. They were exposed to these things or people lived on farms and they they saw how animals were born and they saw how animals died. And so it wasn't such a foreign experience. And so in this day and age, most of us are insulated from those experiences and we don't even know what to expect. And so the just the physical changes that my mom experienced, it was so helpful to have that wisdom and that guidance from those experienced folks. And I would suggest to to anyone who's going through this or is worried about it, read about it. You know, it's it's actually fascinating. And if you read about it before, you're in the thick of it, before you're emotionally involved with the loss of someone that you love and care for deeply. But if you can have that knowledge in the back of your head to say, oh, so this is what happens, and then this is what happens as the body is declining and preparing to die, it just makes it gives you that much more comfort because it minimizes the fear. And it also the other piece that I would suggest is that it gives you confidence to feel to know that you're not screwing up, you know, that you're not hastening their death. You're not doing something that is wrong or that you're not going to. The one of the most important things that I would suggest to people is to do things, to act in a way so that you have no regrets to be as prepared as you can and forgive yourself because you're human, you're going to make mistakes. Gosh, there are days when I wasn't the best caregiver. I'd I'd lose my temper. I'd be impatient. I wasn't as creative or resourceful as I could have or should have been. And so I've used those experiences now to help others.
Breeda Miller:
And to get back to the question you asked, though, that one of the things that was really startling to me was after doing all the things I did, all the things that I hope that I did the right way when my mom ultimately died. I felt such relief and then I felt such guilt for feeling relief. I thought, I am a bad daughter, I'm not in a puddle, I'm not a mess. I'm not crying. I'm not shaking and grieving in a way that I thought someone who really loved their mom would when she actually died. But what I gave, what I came to terms with and I learned that is that I had been grieving her loss for three years. I had been grieving. Her for all this time while I was still caring for her, and so it was only normal, it was only reasonable and rational that now after this tension of waiting and waiting, all these my mom was in hospice care for seven months and not knowing when her final day would be because she was declining so much. But she was a she was a very strong lady. And one of the things she used to say, we'd go out to a restaurant and we'd all be done and she'd still be drinking her tea and we'd say, Mom, are you ready to go? And she'd say, I will not be rushed. And, you know, even at the end of her life, OK, I could hear her say I will not be rushed.
Martika Whylly:
Take my time.
Breeda Miller:
She took her time. Yes, she did. But and now in hindsight, I realize I can see it. I can see the grief that I did go through. And then I'll say this is that one thing I was also not prepared for is after she finally did pass and we did the memorial, we did things, I would feel waves of grief at unexpected times. I'd find some something in the house. I'd find I'd hear something. I would be in the market and realize I used to buy the jam that she liked or I used to buy the crackers that she liked or something. And I'd go to that area and put my hand out to think, oh, you know, we're out of that. And I think, oh, I, I don't need to buy the marmalade anymore because Mom was the only one who ate marmalade. Nobody else did. And so those little moments were bittersweet. So but I've learned to just recognize them and now time has passed that I can appreciate them and enjoy them and not feel that, you know, the great sadness. But the sadness is, you know, one of one of the the prices you pay of deep love is feeling that loss. But recognize everybody has a different way. Everybody has their own timetable and that you're not a bad person. You're not if you have a preconceived idea of how you should behave or how you should feel after the loss of a loved one, I think that that's not a reasonable expectation that you just don't know what it will be like until until you experience it.
Martika Whylly:
Well, that's right, that is so right, even when somebody is dying and you're preparing for their death and you think you're going to be OK. Yeah. And then all of a sudden you just you break down, you're mess, you want to crawl to bed and never get out.
Martika Whylly:
And then the little voice tells you to go next door to your neighbor's house and then you do because who knows if you would ever get out of bed. Oh, yeah.
Martika Whylly:
And even for me, going through grief as many times as I've have and the counseling and the reading and now I'm going through to get my certificate, it's still it's it's never the same. You know, you've cared for somebody, whether it's a person or a pet, and they pass. And even I'm saying to myself, well, Martika, you're you're an expert on grief. You should know how to handle this. So so, you know, I just dealt with it. You just go with the feelings. And of course, that day that had happened the day before, the day after, I should say, I had two errands to run. Of course, the people at the grocery store knew about Tasha dying and so did the lady that was taking my blood. So and for me, I was just I had to talk about it. Sometimes people don't want to talk about it, so I guess, again, it depends it depends on a lot of things to depends on the person, the relationship, how they died and then all that.
Breeda Miller:
I think the biggest thing is to be gentle with yourself and to give yourself permission that however you're processing it, because I think that's that's the right word. I think it's process and experience that and it's over time that it isn't like, oh, OK, I'm done now. Right. It isn't. What's interesting for me is that I had to really specifically contrasting experiences. My father died 25 years ago and he had an aneurysm, so he died instantly and unexpectedly. And that was a tremendous shock for my mother and for all of us because he hadn't been ill. We had no warning that was it. And with my mom, it was this long, slow and I'm grateful that I wouldn't say it was a painful death, she didn't have cancer, she had didn't have surgical wounds or things that that were causing her great pain. She certainly had discomfort, but it was so so I'm grateful for that. And I think that's what you do. You grab on to what can you be grateful for. And sometimes the way that I would do that is I, I would stop and think, oh, instead of saying, oh, this is horrible, this is all hard or. Well, it's so unfair because it sure is, but it could be worse. And if you could stop for a moment and say it could be worse, I could be not in a warm, cozy house or I could have other issues to deal with apart from my mom's care. Or I could be worried about that. We don't have enough food in our home or something like that. And when you stop with that, it allows you to count your blessings as small as they might be. But when you can acknowledge that and feel grateful for something good in your life, it makes it easier to deal with the really hard things. Doesn't diminish them. It doesn't say doesn't say this is not still really hard and really horrible, perhaps, but but it just helps you cope. It helped me anyway.
Martika Whylly:
Yes, yes. What can you do while you're sitting with your loved one when they're near the end of their life, what kind of comforting things could you do?.
Breeda Miller:
Yeah, well, so my mom, as I say, was in hospice care for seven months. And the last two months she was bedridden and wasn't able to get up. And and I I had an office in my home and she was there. And I knew she I didn't want to just leave her all by herself in her bedroom. And and I had three teenagers and, you know, dogs and cats in a busy house. But here's what I did. And at the time, I didn't think it was anything. And in hindsight, I am so grateful. My mom had lots of photos and and family photos and I was the keeper of them. And I've never been a scrapbook or kind of person, but I have four brothers and I was filling this huge responsibility of these family treasures, you know, my parents marriage license and photos from Ireland and scraps and notes and letters and things like that. And I decided I would get them scanned and then I would create this digital family album, basically my mom's legacy. And then it grew and it incorporated things I already had of my dad and then included my brothers. And here's the thing. I spent three months with my laptop in her room. She was sleeping almost all of the time. But instead of focusing on her deteriorating in the bed in front of me, I was in this world of this vibrant young woman emigrating to another country and telling her story and looking at these images of her smiling and laughing and seeing her in that way, rather than seeing where she was right now and rather than focusing on that. And then I would spend time online emailing my cousins in Ireland, asking them questions about, well, what was that auntie's name or what were those cousins? And it was a way to be connected with family, to honor her and to spend time in her presence.
Breeda Miller:
Unfortunately, I wasn't really able to ask her questions because at one point I remember asking her about a photograph to say there were three little children in this picture. And she'd say, I said, Mom, do you this is this is you and auntie Betty who's this other person. And she looked at me and she says, Where did you get that picture? And I said, Mom, it's yours. But the good news is I was able to call her sister, my Auntie Betty, and ask her. And it was it was a treasure hunt, but it was a project that I could do that was so helpful. And it it wasn't I mean, honestly, it took me a really long time to do it. So I didn't I had no deadline and no pressure. After my mom passed away, I found some other documents and things that I didn't even know that she had. And so I redid a bunch of things. And it's now one of the most valuable things I have because I did it digitally. I was able to share it with my brothers and cousins in Ireland. And we have this now this family book of my family's story that is one of the most precious things that we have. And I did it while my mom was just, you know, declining. But it was a really positive thing that I was able to do. I was physically present with her. But instead of being frustrated or or or just really sad, it enabled me to do something really positive and honor her. So I'm not sure if that's an idea for everyone, but it sure worked for me.
Martika Whylly:
Yeah, well, that's yeah. Because that's the first time I've heard that. Usually most people you hear that are sitting and holding their hand. But that's very empowering. That's a good, great idea because I think the natural response would be to kind of feel badly that, you know, the person is declining and ready to go.
Breeda Miller:
And I certainly had those experiences and I did lots of handholding and I made sure, you know, my mom couldn't read any longer. She had macular degeneration. And I tried to do the audible the audio books, but she kept falling asleep and then she wouldn't remember where she left off in the story. So it really didn't work.
Breeda Miller:
But but what did work were music, you know, CDs from her era. And she would just listen and love them. And they might have been hymns. They might have been old music that I found that she just wanted to listen to over and over again. It was very comforting for her. I got used to it. It kind of drove me wild. After a while. It was very repetitious. But, you know, that was a small price to pay. And so, yeah, it was it was just you think, well, what could you possibly do? Especially if if you're not comfortable, you know, because honestly, unless you're very knowledgeable, I can't imagine anyone saying, oh, I really enjoyed that time. It's hard, it's hard. But if you can find a way to try to find meaning during that time, and that's what I was able to do, I didn't plan on it. I didn't think, oh, this is going to be a really smart thing to do with my time. It it just kind of happened. And now I'm if you're at all inclined to do that, it's it's really it was really a good.
Martika Whylly:
Well, that's great. Well, Britain, where can people reach you if they wanted a little bit more guidance when it comes to caregiving?
Breeda Miller:
Well, a couple of ways on Facebook. I'm very active on Facebook and I have a page called The Caregiver Coffee Break that I post just about every day. And so Facebook is great on.
Breeda Miller:
One of the things that I did when covid started last year, I realized that, you know, we were filling social isolation is such an issue for anyone, whether you're a caregiver, especially if you're a caregiver, dealing with someone with dementia. You know all about social isolation because it's hard to go anywhere. People stop visiting. It's really hard. And now almost everybody is experiencing this. And so I did these videos every day for 53 days called Take a Break with Breeda and about 10 minutes long and basically a chat.
Breeda Miller:
Come on into my house, have a cup of tea. I'm just going to have a little chat. And so I took a number of those that were I thought were pretty good. And I created a channel on YouTube. And it's simply Breeda TV dotcom. If you just go to that, you can watch a series of videos that I hope will just give you a little bit of comfort and be an enjoyable way to remember to take a break, because, you know, if you don't take care of yourself, it's my my my motto is take a break before you break if you don't take care of yourself. I was going to take care of everyone else. And who's going to take care of you.
Martika Whylly:
That's so true.
Breeda Miller:
And so many times caregivers feel guilty about taking a break. Oh, it's so selfish. Or how what business do I have going to get a massage or, you know, my mom can't even leave the house. And here I am going off to a movie or something or go on vacation.
Martika Whylly:
And this is why there are so many caregivers that experience burnout, take a short term or long term lives. And I've I was guilty of that, too, because I'm like, I've got all this work to do. I can't take a vacation, even though the inner voice kept saying you need to take a vacation. I'm like, I can't. So I guess what? I ended up taking a vacation but guess where I went?
Breeda Miller:
Where?
Martika Whylly:
To the hospital for a week because I didn't listen to that voice.
Breeda Miller:
You know what? If you don't if you don't take a break, your body will say, girlfriend it's time.
Martika Whylly:
Oh, I've learned the hard way.
Breeda Miller:
Yeah. Whether you want to or not. And so you need to do it preemptively. And the way that I suggest you get over that guilt if you have it or that feeling that it's selfish or it's not the right thing is to realize if you are not your best self, you're going to be cranky, you're going to be impatient, you're going to be tired, you're going to make mistakes. You're going to lose your patience. You're going to lose your temper. And then the person that you're caring for, they're going to feel like they're a burden. They're going to feel like, oh, you're really not having a good day. And now I'm not having you know, it's not good for anyone. So what and when you take a break, it gives you the opportunity to miss your person and it gives them an opportunity to miss you. So while you may be the best person to know what they like to eat and you may be the their favorite person to to help them in their day, but you're not the only one, other people can do it. They may not do it the way you do it. They may not do it as well as you do it, but they could do it. And it is so important to allow other people to step into that space. So I have written a book called The Caregiver Coffee Break, and it's seventy six tips to help you take a break before you break. And people tell me it's really helpful. It's a tiny book, it's distilled wisdom and it's available on my website, which is Breeda Miller dot com and at my website there's links to all my videos, the book. In fact I have a brand new book that I'm working on and it will be coming out mid-February. And this is not just for caregivers. It's called take a break before you break. Fifty two practical self care tips. And it's for anyone who really needs a nudge or an inspiration or some creative ideas to help them take better care of themselves.
Martika Whylly:
Well, thank you so much, Breeda. I think we all could use tips on taking a break before we break. Very helpful. I wish I had known that before I broke.
Martika Whylly:
It's never too late.
Breeda Miller:
It's never too late. And we've learned, you know,
Martika Whylly:
We can learn from our mistakes, right?
Breeda Miller:
Exactly. And to say, is it a mistake or is it a lesson? Let's let's say it was a lesson. Lesson learned.
Martika Whylly:
Yeah, that's right. Well, I thank you so much, Breeda, for you being here.
Breeda Miller:
Thank you.
Breeda Miller:
Thank you. Martika. It was an honor and I'm delighted. And just feel free to call me if I can help any time in the future.
Martika Whylly:
Yes, we'll do.
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You've been listening to the Greive with Ease podcast with your host, Martika Whylly, we hope you found comfort with what you heard. Be sure to leave a rating and review of the Grieve with ease podcast show and visit our website at Grieve with ease dotcom.
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