Hope for living, loving and caring with no regrets!

Ep 30 Thinking About the End of the Journey

Episode 31

Rayna Neises, ACC, host, and Aly Neises, RN, cohost, reflect on the conversation with Karen Hafner who, along with her sister, cared for their father. Their family, like many, had a caregiving journey that lasted over several years, but then ended after a quick decline. Guidance for this final part of the caregiving journey is provided:

  • When on a long caregiving journey, the terminal diagnosis can easily be forgotten, and the caregiver/family can be shocked when the end arrives.
  • While in the day to day, caregivers can be lost in the details individually and not see the overall picture of the situation.
  • Sometimes the patient will be ready to move to the next step before the family which makes the end even more difficult to accept.
  • Hospice is the very end of the journey; regardless of the time in that phase, it is at the end . . . It is when care transitions from fighting to heal and get better to comfort and release.
  • Hospice nurses help guide families and loved ones; they help the patient to die with dignity and with peace.
  • Listen to your loved one’s cue, of which not all are physical; Watch for the light to be gone.
  • We do not know how long the journey will be or even exactly where we are at on the journey but being aware of the signs of the end can be helpful.
  • The end, letting go and saying goodbye, is part of the caregiving journey and deserves some thought now even though it is difficult.


*Transcript is an actual recount of the live conversation
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 Aly Neises, your cohost. And today we’re going to talk a little bit more about Karen Hafner’s experience in caring for her dad. Karen her sister and her dad had opportunities to really enjoy each other and there’s last few years of his life. But one of the things that really stood out to me and Karen story was she mentioned multiple times the swift decline or the short period of time at the end of his life and that’s something we really haven’t talked about yet Aly.Aly Neises: 
No. I agree completely. Like I noticed that she mentioned it several times, it sounded like after her sister moved home and they worked on their relationship. They had a good couple of years. And then it sounds like his decline to his end was very short a month, month and a half, maybe a couple months tops And I know that that is a lot of change and a lot of things happen, especially when we’re talking about somebody that’s gonna die. In working hospice as I do, I can tell you many, a times, like we can have chronic illnesses, but and you know, that the outcome is always going to be death. We walk this journey, no one makes it out of life alive. And so we’re all going to pass away somehow some way. But when you talk about somebody that’s had a chronic illness or has been fighting something for a long time when those changes occur. It’s hard, it’s hard as a family member to watch, and it’s hard for our patients as well. To grasp at those straws to try to make sense of it is really difficult.

Rayna Neises: 
My experience with both of my parents having a disease, like Alzheimer’s makes you assume that you know the end is coming. And I think you said that, well, whenever you said, we’re fighting these illnesses, we find that that’s just a way of life. With my mom, her progression of her disease with Alzheimer’s was 12 years. But she was physically very healthy and occasionally she had pneumonia here or there, but we would catch that she literally had never been in the hospital until something just suddenly overnight changed. I remember just feeling like. How did this happen? How do we go from our normal, which had slow gradual declines had occasional dips that then kind of leveled out. You know, really you forget, I mean, 12 years is a long time you forget that it’s a terminal diagnosis. It was sudden but by the end of her life, there was that five to six weeks transition that felt like it was a slow letting go. It was not taking care of all of her needs. We took her to the bathroom for years. We fed her for years. That was just our normal. And so having her not do those things and not being responsible for those things was kind of a gradual let go. So it wasn’t shocking when she passed, because we saw those things coming. We knew the doctor had said, there’s nothing more we can do. On complete contrast to what happened with my dad. You know, it was a sudden thing. Yes. Again, we were 14 years into Alzheimer’s. There was no shock that he had a terminal illness, but I do think that in our minds, we don’t realize that it could be tomorrow or it could be today. We just don’t realize that when we’re helping care for somebody, because we’re doing so much to deal with all the symptoms to deal with all the issues. And that’s just where the focus is. And I know for my sister and I, at the end of my dad’s life, I can look at the list of things that you’ll see within the last few weeks of their life. And I could say. Yes. Yes, yes, yes. All of these things were here, but we were seeing them all individually. We were seeing them all as one puzzle piece that needed to be addressed at a time. And because we didn’t have medical professionals who were saying to us, no, here’s the list. And these are all expected. It was shocking. Dad had heart failure. We knew that it had been as controlled as it could be. We had made the decision not to do a pacemaker and put him through all of that So when he threw the blood clot, our primary care physician was really honest with me and said, Rayna, you’re describing a blood clot. So we had to go to the emergency room and because it was arterial clot, they did have to remove it. Once he survived surgery, we were just on the fight to get him back to where he was. And we felt like there wasn’t any reason why we wouldn’t. So it was just shocking when we reached a point where that wasn’t where we were going anymore.

Aly Neises: 

I can identify with exactly everything your saying it’s my everyday life. I’ll go talk to patients and their families and a lot of them, especially when they first come on and look at me and I’m like, how did we end up here? Like, last week we were fine. Everything was fine. Dad was fine. He was eating. He was talking, he was joking. And now you’re telling me he’s dying and that’s not necessarily the case for everyone that comes on to service, where they are immediately dying. But I would say that that does occur and it does occur quite often. And those are the ones that the family just looks at me. And with these huge eyes, like a deer in headlights, like have no idea which end is up. Have no idea how to even process what’s happening, let alone, how they feel about it. And now you’re telling me that I have to help take care of this person that is no longer going to be here. there’s just all of these emotions, all of these thoughts that come rushing through your head, And part of my job and my team’s job is to help you work through some of that. But also you have to do some of that on your own. And whether it’s you come to that realization on your own, that things are changing and we have to make some changes or a physician tells you, I think sometimes it’s harder when a doctor tells you, there’s nothing else we can do. We need to talk about hospice or we need to talk about comfort care, or we need to talk about palliative care. especially when you’ve been fighting things for such a long time, like you mentioned, a chronic illness, it’s just what we do. We take care of the symptoms. Well, dad’s not eating like he used to. Okay. So I’m going to offer him things that he does like so he’ll eat more or I’m going to grind up his food or chop it up into smaller bites so it’s easier for him to swallow. No big deal you take those little bits of decline, one step at a time, and then eventually you have these bigger declines, but it’s harder to see when you’re in the thick of it day in and day out. I think sometimes when we’re talking about people that are hospice appropriate or talking about people that are towards the end of their lives, even if it is, like 14 years and Alzheimer’s. Yeah, dad’s not the same that he was 14 years ago, but he still had life. He still a quality. He still had things he wanted to do. There was still a drive. Sometimes as well that’s hard to see as caregivers and family members is to see when the patient is ready to move to the next step too. And sometimes that’s even harder pill to swallow because you’re not making that choice, they are.

Rayna Neises: 

So that was definitely what happened with us was once we went through the surgery, he was in rehab for three weeks and he was walking again. We felt like we were moving forward, getting better. And we were able to move him back home. We had to leave him in the basement because there were steps, but we had made all these plans that we had this great little place set up in the basement. And dad got home and, he knew he was home and he just relaxed and he smiled and it was just, you could tell such a difference. He was so happy to be home, but then one morning I just saw the difference. I saw that he was not fighting. He was not wanting to get out of bed because before we had the surgery with this gaping wounds where they had to open his leg up He would forget and try to put weight on it and try to just go and he stopped trying to go. He stopped necessarily wanting to get out of bed and wanting to do those things. So we did see the shift or I saw the shift and that was where one of the things that was difficult. It was hard for me to see that, but I also, I did see it and I realized, and it was funny because I had said to his doctor, I’m going to be his voice. I’m going to fight for him as long as he has fight in him. And I saw the fight leave and I knew that, and it was that very day that the in-home healthcare nurse said to my sister, I can’t leave here one more day and not tell you that I see all the signs of being in the last few weeks of life. And that bold my sister completely over. It was so difficult for her to hear when I heard it, it was just like this acceptance in my heart cause I felt it. I didn’t know what I was feeling, but when she said that I felt it. And so I was like, okay. Yeah, but for those of you listeners that don’t know, we both have last name Neises because Aly’s my daughter in law. So that day we actually picked up the phone and said Aly, can you talk us through this? Because this is what we heard and this isn’t what we were expecting. And can you help us? What, what does it look like for us to shift to hospice and how do we make that decision?

Aly Neises: 

And I think that phone call, because I was not physically there. I hadn’t seen Bob’s physical decline with my own eyes, but everything you had described to me was exactly what I see before people come to me. And it doesn’t make it any easier by any stretch of the means but I do think if you can kind of accept that and move forward, it makes that process easier to let them go and to truly walk them all the way home. Because I mean, that’s, our goal is we’ve been working. Some of you caregivers out there have been working at this journey for a long, long time. And so when we talk about hospice, we’re talking about the very end of the journey. And there’s no timeframe on that. You know, either, that can still be a long journey, but we are talking about the end. And so accepting that and moving forward and trying to maneuver through some of that is some of the hardest, most difficult things I think you can do Especially if this decision feels like it comes out of nowhere. It just makes that grieving a little different. And if you have a short amount of time that you’re on services too, that makes everything much more complicated as well. In my experience, my family members that have the hardest time would definitely be my cancer patients. Mainly because we switch everything from a fight to finding a cure, to going to chemo three times a week or four times a week, or radiation 25 minutes every day for years, sometimes. And then a doctor comes in and says, I’m sorry. There’s nothing else we can do. Your tumor is still growing. Your cancer markers are still high. It’s just devastating for those family members. Whereas I know as I look at patients, they’ll say, I should have stopped a long time ago. I should have told them I couldn’t do this anymore. They’re relieved usually, but it’s really hard for my family members.

Rayna Neises: 

My sister had a really hard time with it as well, because it was one of those things that she did not get that was coming and even understanding what that meant as far as hospice versus continuing the path that we had been on before. And just being able to, like you said, know that these are all the things that we’re doing to heal and to get better. And then shifting and saying, okay, instead of going down that road, we’re going down a road of comfort and, release. Letting them letting them go. And it is a hard, hard process.

Aly Neises: 

Being a hospice nurse is one of the most beautiful. I don’t want this to sound morbid, but to our caregivers or our listeners, but it’s one of the most beautiful things that I’ve ever done as a nurse. From the simple aspect that I am part of the most intimate part of this journey, whether it’s hours to days to weeks to months, sometimes even years. But I’m part of this journey with these people to help guide them and help them die with dignity and die with peace, but not just for the patients, but for family members too. But it’s also probably one of the hardest things that I’ve ever done as a nurse. You know, see these people at end of life and see these loved ones saying goodbye to their loved one is beautiful, but it’s also heart-wrenching at the same time because I know their lives are forever changed. In those last moments, those last days. Are very difficult. A lot of times you’re not sleeping, you’re not doing very normal things except taking care of them. And it’s more, their physical needs not necessarily their emotional needs anymore. That’s difficult but I just want to give strengths to our caregivers and our listeners that we understand. And if you’re walking that journey, that end that very last end part, hope you just get some strength and peace and personal grace. That’s going to be really important during those times, because like our goal has always been to walk them all the way home without regrets. And I think being part of those last moments are something that you can definitely look back upon and not have regrets about.

Rayna Neises: 

It’s hard as a person who is just helping them caring for them, offering them support and the things they can’t do for themselves to be ready to stop doing those things. And that’s the hardest part is to wrap your mind around, okay, I’m going to just keep doing what they need, but this time I’m going to be doing what they need in order to finish the journey, instead of in order to get better. And we’re just always so focused on get better, get better, get better. That it’s hard to be able to embrace finishing the journey but finishing the journey well, really can give you that opportunity to look back and have more thankfulness for being there and being a part of it and helping them to journey well. We brought hospice in on a Friday and my dad was gone by early Monday morning. It was a very short journey and we were not, probably all the way, thereby the time he was already there. But we’re so thankful for the time that we were able to be there with him and just really let him go on to where he needed to be, which is health again, you know, outside of this life. And it was hard. It was unexpected even after 14 years. I think it’s funny when I say that, but it was unexpected because we really saw that he was fighting and he was moving forward. And once that fight was gone, it didn’t take him very long and his 85 year old body to be done. Is there a way to see where they’ve given up or where their bodies are just too tired to keep fighting?

Aly Neises: 

I think it’s hard. It’s easier for me to see it because I’m not in it day in and day out. and because it’s partially my job, but I think that the biggest thing is that they’re not my loved ones. I can be objective about it. It’s a lot harder when that is your loved one, because sometimes I think we want to fight for them too. Just knowing yourself and knowing your own limitations, but also knowing whoever you’re taking care of, I think simple things like you described, he just wasn’t trying to get out of bed anymore. Some of the things I hear is he stopped watching TV or they stopped doing the things that they did once before. I had one patient, he used to get it is that every morning, religiously posted on the back deck, go watch the birds. He stopped doing it. He’d stopped doing it for a long time. And part of it, it was cause he physically couldn’t get out there anymore. But also because he didn’t have the drive, it wasn’t worth how he was going to feel the rest of the day to get out there, to watch the birds, even though it made him happy. And so when I’m talking with the family and the daughter just got this realization on her face and you could just see it. She goes, you know, two months ago I came over I’m dad was on the couch and he’s not normally on the couch. Usually, when I come over, he’s outside. He always watches the birds and he wasn’t watching the birds. And then I asked him about it. He said, Oh, I just don’t feel like watching the birds anymore. She’s like he was telling me, then I said, yeah, he was. So I think just listening to the cues that they’re giving you, and they’re not all going to be physical. Sometimes it’s an emotional, but I do think sometimes it’s even just the light is gone. That sparkle, that twinkle, this vivacious life that we have, just sometimes disappears and it can be missed. But just being aware and being in the moment.

Rayna Neises: 

I don’t think it hurts to do some research. I think if I had probably paid attention to what the signs were. Once that nurse said that to my sister, I Googled it and I looked at them all on one page and went, yes, yes, yes, yes. And until then I was looking at them as those individual puzzle pieces and I was trying to solve each one. Now I see the whole picture, not just the individual things. And like you said, I think as we are in our caring season, we are just determined to be that advocate. To do the best that we can for them, but it probably wouldn’t hurt if you aren’t close to the end of the season to just notice what those things are and starts paying a little bit more attention to where you are on the path. We all know that we don’t know how long the journey is. We don’t know exactly where we are on that journey, but there are things that help us to understand if we’re getting closer to the end and being more aware of those things can be helpful. It just can be.

Aly Neises: 

This topic I know is not something that people want to talk about. none of us want to come to the realization that our parents are aging or they’re getting closer to the end of it or wives. I mean, one of my songs is very true to my heart is I wish grandpa has never died. And it’s just a beautiful song about family memories and all of that. And I think it’s what we all wish is that people could live for forever, but be healthy and vivacious and full of life. And like I said earlier, that’s not necessarily the case. So what we’re just trying to do with this conversation today is to prepare you, just start thinking about those things. We’re not saying that’s happening tomorrow. We’re not saying it’s happening next week, but we are saying that it’s going to happen eventually. So maybe some preemptive grieving, some understanding, some gaining some resources now is going to be easier. So maybe you don’t have such a difficult time when that time comes. You’re going to be more prepared. And I’m going to also tell you that no matter what, no matter how much you prepare, it’s still not going to be easy. I wish I could make it that way, but that’s not reality. So we’re just praying to give you guys strength and wisdom in our experiences and the journeys that we’ve helped, our loved ones, and others walk and so that you can learn. And so that you can maybe have a little bit of an easier time.

Rayna Neises: 

One of the reasons why I started A Season of Caring. Was because, through that journey that I walked, I wanted to be able to turn around to those of you on the path behind me and offer encouragement and hope because there is hope in what you’re doing. There is hope in loving well and living well and caring well, and you can do those things. This is part of the journey. This is part of caring, letting go and saying goodbye. And so this podcast is for you to maybe spend a little time thinking about something you’d rather not think about. And maybe spend a little bit of time after this, checking into some resources that will give you some knowledge that will come in handy at a different time of your life when you really are coming into this part of the season, the end of the journey. And I hope you find it to be helpful. I know that it’s not something I wanted to talk about or that I spend enough time probably thinking about now in my caring season. But it’s something that I know that as I look back and I shine the light in front of your feet to help you walk this path with hope and with love. I want to do that faithfully, in all areas. So, listeners, I hope that today, as we’ve talked about this subject of walking, your loved one all the way home, that you will have some things to think about and that you will take some time to check out some of the resources that I’m sharing on our show notes page. I do feel like this is an important topic, and I hope that you found it to be really helpful as well. Just to a reminder, A Season of Caring Podcast is created for the encouragement of family caregivers. If you have medical, financial, and legal questions, please contact your local professionals and take heart in your season of caring.

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Meet Your Hosts

Rayna Neises, ACC

Your Host

An ICF Certified Coach, Pod-caster, Author & Speaker, offers encouragement, support and resources to those who are in a Season of Caring for Aging Parents.

Her passion is for those caring and their parents, that they might be seen, not forgotten & cared for, not neglected.

Rayna Neises & Aly Neises

Aly Neises, RN

Your Co-Host

A registered  nurse, has worked in healthcare for over ten years. Currently she is a case manager for hospice taking care of terminally ill patients and their families.

Her passion is to help and care for others.

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