Rayna Neises: Welcome to A Season of Caring Podcast where there’s hope for living, loving, and caring with no regrets.

This is Rayna Neises your host, and   I’m excited to have our cohost Aly Neises here with me today.  We’re going to continue the discussion on grief through the season of caring from our last podcast with Nancy Miller, caregiver survivor and grief coach.

Hi, Aly. How are you today?

Aly Neises: Good. How are you?

Rayna Neises: Good.  Grief. It’s a tough topic and definitely a big part of caregiving.

Aly Neises: 100% probably one of the biggest parts.

Rayna Neises: It really is. And I think often times the biggest neglected part, we don’t want to grieve, we don’t want to think about grieving. And so, we try to bury it and pretend like it’s not there and it really doesn’t work out very well.

Aly Neises: No, it really doesn’t. It doesn’t work well in that everyday life as your caregiving and also like Nancy talked about even afterwards.

Rayna Neises: There’s such a difference between the everyday life and the afterwards grief. I think caregiving is full of grief and a lot of different levels, but the everyday grief is one that I think we oftentimes just don’t take time to notice. And it was interesting to hear from Nancy’s perspective, both professionally and personally, how that grief process was different during the two different seasons.

Aly Neises: Yeah. So after listening to Nancy and knowing even your personal experience with this, how does your grief with your appearance look different in your different seasons? Like can you share a little bit about that.

Rayna Neises: You know, for me because I was so young when my mom was diagnosed. with Alzheimer’s, you know, that terminal diagnosis for me, I was only 16. There was just a grief that was overwhelming, knowing that she was going to die. And then of course, she lived 12 years. So there was a long period of time of caring for her and having her there, but not really there.  So there were weddings,  Just lots of things that we grieved her not really being able to be a part of. Um, and then with dad just from year to year, just being able to at one point do something. And the next. Point, not.

One story that comes to mind is we were working in the front yard putting some new shrubs in and one year we had a really fun day. We were able to dig up the old stuff and put new things in and he was really helpful, and we had a good time with it. He sprayed me with the water hose. I mean, we just had a really good time and the next year when it came time to do that again, it wasn’t fun. Uh, he struggled with understanding how to do that and he tracked mud all over the house that it was just really, stressful.

And when I realized how emotional I was about it, and to stop and think about, you know, okay, why am I feeling so frustrated by this? And I think it wasn’t just that he couldn’t do it. We had done it before, and then this was one that was just staring me in the face of how much he had changed in that year.

And so the grief I had to then acknowledge it, and I had to say, you know, this is, I know he’s changing, but this was just a smack in the face that there was a big change. So I think the grief, those small things, um, as he lost abilities. Really stood out.

But then with his passing was even more so, and I remember with my mom thinking, she’s been sick this all this time, I can’t believe I’m so not affected isn’t the right word, but I couldn’t believe the grief that came with losing her because I’d been losing her over and over again for so long.

And I think with my dad. I knew. I remember that feeling with my mom. But I didn’t really expect it to be what it was with my dad. It was a whole difference level of grief for me when I lost dad, I think.  Losing your last parent, I think is part of that, but just such a big part of my life and it was a pretty overwhelming period of grief for me.

So when she said the intensity, I really related to that.

Aly Neises: [00:04:14] I really liked how she talked about how, it’s hard when you’re, you lose your parents. And she had like some self-talk even when her mom was diagnosed. How, you know, this is a normal part of life. People, loose parents, all the time, this is normal. She had to like kind of talk herself down off that ledge.

And she thought she had a handle on it, but then, you know, when they actually are gone, it’s this whole different, like you expressed like these feelings of grief that you thought kind of dealt with and normalized and it’s really kind of takes you aback.

Rayna Neises: It really does. I think it’s the overwhelming sense of never having a conversation with them again, never seeing that smile again. Um, for me, I was definitely a daddy’s girl and home had been the same place for 43 years, and so for me to not have my dad at home anymore.  It was shocking how much it affected me because he hadn’t been the same dad for so long, but he was still there with open arms and a big hug.

I often say, you know, parents love us completely biasly they, you know, your parents can’t look at you without having bias and that person, there isn’t anyone on this earth that loves me to the same degree that my parents did anymore. And so that just hit my heart in a way that I, I was not expecting that.

I had heard people say, you know, when you lose your last parent, you’re the next generation, blah, blah, blah. But it just was the, the depth of that, was pretty intense. And for a long time, um, the fog, you know, the sadness you expect, but the fog I’ve just been able to pick up and function,  was the part that I think surprised me the intensity of that surprise me a lot.

Grief is a funny thing and everybody definitely experiences it differently, but I was surprised at how, how it affected me as I lost my dad.

Aly Neises: [00:06:11] Yeah, and I think it’s important for us to identify that grief is different for everyone, but that it’s. Something that we have to deal with and so that we can survive and live, and be a functional caregiver survivor.

You know, in my occupation, I see a lot of people that are terminal. And so we deal with not only like the physical and emotional caregiving needs at that end of life, but also with their caregivers. And that relationship and how they’re dealing with the grief of losing the people, but also these patients, you know.

Loved how Nancy talked about, , it’s important to talk about whoever you’re caregiving with. I’m the person you’re taking care of and just kind of talking to them about their grief cause they’re also going through things too. Losing abilities and functionalities and all of that.

[00:07:05] I know with your mom, it was something that big chunks of her went missing pretty quickly, you know, for an extended period. But your dad, I know personally he’s able to do a lot of things for a longer period, so you know, do you feel like you could have done better with that?  Are there. Things that you would have changed to talk to him about that grief or sometimes relationships different for person to caregiver too. You know? Got to have some respect for that.

Rayna Neises:  My mom did lose her ability to communicate just within probably three years of her diagnosis, so she was pretty much nonverbal and so definitely never crossed my mind to talk about those losses with her. With dad, I don’t think, I didn’t talk with him as much. He definitely could have talked more probably, and looking back if I had tried, he might have.

I dunno. He didn’t talk about his feelings a whole lot anyway as a man. And so as an older man, you know, in his eighties, he wasn’t a big sharing his emotions in that way. But I do think the thing I was aware of. Is that, his grief, I think, came out in frustration. And so when I saw the frustration and the confusion, I knew that it was because he knew he should be able to do something.

It was so difficult within the first five or six years of his diagnosis when he was still functioning really well. When I would go visit him almost every time sometime during the weekend, he would say, Hey, Rayna, can you help me with something? And I’d say, sure, dad, what do you need? He would say, there’s something wrong.

There’s something wrong with my memory. Can you take me to the doctor? Can you help me with this? Because he didn’t remember that he was diagnosed with anything, but he knew that he wasn’t able to problem solve and do all the things that he had done in the past.

So that was so hard. I. Oh, I hated that. It broke my heart every time because I would just hug him usually and just say, yeah, dad, you’re right. Something is wrong. And we’ve been to the doctor and you know, those pills that you take, we’re doing the best that we can to help you as much as we can. I think those, there were those little times where we talked about that kind of thing, but not necessarily, you know, how do you feel about not being able to do things.

I just tried to help him give him the tools to do as much as he could for as long as he could, and realize that the frustration and the confusion was probably coming from him knowing he should and he couldn’t.  That was the thing that was hard for him. It was, it last a very long time that he knew he should be able to do things that he couldn’t do.

And as a man, I think that’s harder. But just as my dad himself, he just was the provider, protector, caregiver, you know, and he, it was really hard for him to, to not be able to just take care of it. Whatever it was, you know, something as simple as changing a light bulb, you know? It was just, he should be able to do that and wanting to be a part of that. If I was getting the ladder out, it was no, he was carrying the ladder, you know? So it was always negotiating with him, those little things that he really was struggling and shouldn’t, have to worry about, but he wanted to.

Aly Neises: [00:10:18] Yeah. No, I think that you’re exactly right. Those changes that we see in like, you know, group’s different for everyone. It’s going to be different for even the people we’re taking care of and just see, be sensitive to that and aware. And I know that’s hard when you’re that and it’s, it’s hard to do the daily things. It’s overwhelming to do the daily things. but just to extend some grace to each other, I think it’s going to get you a lot further. Know. And I think giving grace to ourselves is also something that’s going to get us a lot further. You know, I seen it, I know Nancy talks about it a lot and they know, we’ve talked about it.

The caregiver burnout is so high. We’re a society that just goes and goes and goes and we don’t talk about self-awareness enough to take a couple of minutes. You know, I, in my own personal life. I have gone through seasons where I just take it 10 minutes a day and I journal and write down all my feelings and I don’t have to talk to anyone necessarily about it. I don’t have to leave my house. I don’t have to put makeup on. I just go to my room and sit in the quiet and just journal and then I feel better.

And Nancy talks about journaling, what are some of the things that you’ve done? They assigned helpful when you are going through your grief, like with your parents, especially with your dad.

Rayna Neises: [00:11:45] Definitely journaling is a part of that. I think getting it out of our heads makes such a big difference. having friends that just really say, how are you, and listen, don’t problem solve. Don’t try to fix anything, but just listen because so much of the time, just like getting it on paper, just getting it out of your mouth can really bring a peace.

For me, prayer was a big piece of that. I’ve just really praying my way out of the door,  each time or in the moment when things were really frustrating, just taking that deep breath and stepping out in the hall and if the tears needed to flow, letting the tears flow and a lot of those conversations were with God and, and just how unfair it was and how hard it was in the moment. but the peace that comes from that really does make a big difference. So I think, um, getting it out in whatever way that is. And it might be a support group who would be a thing that would be really helpful to you. But like you said, some of the simple things are just journaling. And I think prayer.

Aly Neises: [00:12:42] Yeah, and I think being purposeful, like scheduling some time where you do that, it doesn’t. I think you’re going to, if you schedule it, then you have to kind of fulfill that. You know, in that season, when you’re caregiving all the time, you don’t have time. You don’t have time to shower or brush your teeth sometimes.

But like, just being purposeful, like once a week I’m going to do this, and if it’s like 10 minutes, it’s 10 minutes, but at least it’s something.

Rayna Neises: And I found because I had the drive, that was definitely a time. Every time that I left, I checked in with myself. How am I doing? What went well, what didn’t go well? You know? And really. Checking with myself and kind of having those questions that I ask myself every time. So that when I say, you know, what didn’t go well, if something didn’t go well, then I know, okay, I’m going to make a plan. I’m going to talk to my sister. I’m going to figure out what I can try next time. taking the time to say what went well so that I have those things to be grateful for and to focus on that gratitude. But each time. You know, just how am I feeling? What really am I feeling in there so that I can? Address those feelings. And again, if I need help beyond just doing it myself, do I need to schedule time with a friend? Do I need to sit down with my husband? What is it that I need to help me with those feelings? Or would this cry right now as I drive home, going to take care of it and just release the pressure valve and get it over with?

But those grief moments. I’m sneak up on you if you aren’t intentional. So I completely agree. I think that is how you get to the living parts of no regrets is being intentional.

Putting it on your calendar and putting those questions down in your journal to address each and every time so that you answer the hard questions even when you don’t want to.

Because again, I think you can be so exhausted in so many ways from caregiving. That the thought of breaking down is like the last thing you want to do because it feels like it’s going to be that much more exhausting. But really having that time that you check in with yourself and realize that if you break down today, then you might not have to tomorrow or this week you know, it might be a heavy week, but the next week. Will be a better week. Whereas if you stuff at all, then you’re probably going to have a big breakdown that is more impactful and is more difficult to recover from. So those regularly scheduled check-ins I think is part of that. Taking care of yourself so that burnout doesn’t, doesn’t chase you down.

Aly Neises: [00:15:18] I think burnout is a common thing we see in caregiving as a whole caregiving occupations, and in our personal lives.  I love that. Nancy said, you, you, you’re a person first. So you have to kind of take care of yourself first and then you can be that caregiver. It’s better do those check-ins that, that debriefing, that journaling, whatever it is, that prayer, you can be a better person, so you can take care of people more effectively.

You can’t pour from an empty cup, you can’t give to others, so you have to fill your cup first so you can spread that around. So you don’t burn out so you don’t have this come apart cause that’s not effective for anyone then so.

Rayna Neises:  Definitely. And I think one of the things that can be challenging is what fills your cup. Because so many times as a caregiver, you enmeshed so much in the person that you’re caring for. You even forget what it is that fills your cup. And stepping back, and that might be the first place for our listeners to start is what fills my cup?

What really does bring me joy? What helps me to feel light and encourage and start to remember those things that you love. And it might be music you haven’t listened to in a long time, or it might be, friends, it might be needing more quiet time to yourself. I mean, everybody’s different.

And what fills my cup isn’t the same thing that fills your cup or filled my sister’s cup in this season. And so, um, just being aware that you’ve got to find what works for you, and that will make a big difference.

Aly Neises:  I agree. And when we’re talking about caregiving and all of these things, they just kind of stack up. And so when you’re thinking about adding one more thing too, even though it’s to take some time for yourself, and to kind of grieve and retouch, reroot yourself, um. I would say starting smaller first and then working yourself up is going to be easier to manage.

Then you know, I’m going to go on a walk for an hour. Like sometimes that is just too long of a commitment though. Like, well, like you said, one song on the radio or whatever, do your thing and then get back to it. You know? I think it’s going to be better.

Rayna Neises: And realizing you know, what that is and that there are small things so that when you have a crazy day, you can take a small thing. But what are the big things that you can schedule and when you have time to do that too, and just to, deciphering what. I almost have your list.

These are the things that fill my cup and know, okay, I’m at my woods in, what do I need to get done? What, how do I fill my cup? And so just having that go to resource and knowing yourself is, is hard to do when you’re needed so much. But it’s definitely part of what, what helps you to grieve, to have the energy degree, to be able to make it through this full journey all the way to the ends.

And that’s the ultimate goal is that you can walk your parent home.  And have no regrets, but you also have a life to walk back into, that you’re still healthy yourself and you still have those relationships that are important to you. And those opportunities to continue living on past the season. So many times, it’s hard. We don’t feel like the season will ever end. And so we miss those things.

We have recapped some of the things that Nancy shared with us and had an opportunity to kind of dig in a little bit deeper .

[00:18:41] Thank you so much for joining us on our podcast today as we explore more about grief through the caregiving season and beyond.

And thank you, Aly, for joining me today. It’s been a good conversation.

This podcast is intended for encouragement of family caregivers, and if you have medical, legal, or financial questions, be sure to consult your local professional.

Thanks for joining us and we look forward to seeing you next time!