All of us find ourselves on an emotional roller-coaster as we deal with a friend's or loved ones illness. It really can get intense as that persons condition changes. Add in the crazy world events around us, and it can be over whelming. In this episode, Mitch Ware explains what is causing these overwhelming feelings, and gives us some tips on how to manage them.
Hello, come on in and welcome to another episode of Living With Hospice. My name is Mitch Ware and it is my great pleasure to be your host today.
I need to tell you upfront, I'm not a doctor. I'm not a nurse. I'm not a licensed therapist. Also, I'm not sponsored by any organization. I'm not beholding to any organization. I am a long term hospice volunteer, and I've been involved with hospice going back to my son 13 years ago, and I've been a client of several hospice organizations here in Michigan through my family, and I've seen hospice from the outside as a client as well as from the inside as a long term volunteer. I share my insights and offer help to clarify issues revolving around anything and everything hospice with this podcast.
I'm a member of several online end of life forums. One central issue that seems to be bouncing around is how do I handle the emotional roller-coaster ride of this whole end of life journey thing. How can I do that with love and compassion? Sometimes this roller coaster ride takes us over the edge. So that's what we're going to be taking a look at today in this episode.
You know life is full of ups and downs, ebb and flow. Life is full of stress creators, even for those of us who are on a hospice journey and we've really turned a big chunk of our lives off everything outside of our lives really kind of doesn't matter right now. We're so busy focused on our loved one. Everything has come to a standstill when a loved one or close friend is diagnosed with a terminal illness. But outside life does leak in. So in addition to dealing with an end of life situation, we also have to deal with, you know, normal everyday things, relationships, money issues, visitors wanting to invade your house at all hours of the night and day. Another one is family, quarreling,
By the way, we did an episode about that not too long ago that can really be a stress creator. And yes, there's the whole COVID thing. It can really all be overwhelming. It's just too much. And it also affects our loved one that we're taking care of as well, because it impacts us. And they see that even though they may not mention it, even though they may not pick up on it consciously depending on what their current condition is, at the unconscious level, they do pick up on it. So when you're upset, they're upset. Life is crazy sometimes. And well, like we said, it can take us to the brink.
A good friend told me, I feel so bad for people when their loved one is so close to dying, and then they get better, and then they get close to dying again, and then they get better and then things change. And then it gets worse and then they change again. It's just so caught and pick and hard to deal with. As if the whole journey wasn't enough.
The emotional roller coaster comes by, and we hop on. The roller coaster ride starts when one has a loved one or a close friend that has received a terminal diagnosis. Everybody, everybody starts on that emotional roller coaster whether they realize it or not, I mean friends at work, friends, school neighbors, people from the church or the book club. Everybody willingly or not knowingly or not climbs on that roller coaster and is there for the ride.
It can be a combination of physical and mental fatigue. It's certainly an emotional tax on us. And sometimes it's just just an overall feeling of hopelessness and despair. So if you're there, and you don't hear anything else today, here THIS:
These feelings are genuine.
They're very common.
If you didn't have some of these, then something probably would be wrong.
So how do we handle this right? What can we do to help ourselves and hopefully help others that have come along with us. Well, before we can address ways to handle the emotional roller-coaster, let's look at what is causing us to feel this way in the first place. I mean, why are we reacting like this? This really kind of isn't in our normal personality. So what's driving our thoughts and feelings of fear and despair and hopelessness?
Let's start with the fact that there is a real thing called the grief cycle or the grief process. You've heard of it, I'm sure. And it really does affect us all, whether we know it or not, whether we want it or not, you've probably also heard that not all people grieve in the same manner.
That's true. It's VERY true.
You know, there are five basic steps to the grief cycle, there's denial, there's anger, there's bargaining. There's depression, and then finally, acceptance. And we may skip one or two of these steps depending on how close you are to this person. And depending on your own personality and your own faith, some people with a very strong Faith would skip over the anger and the denial and the bargaining and the depression maybe even and go right to acceptance. Some people have a foot in one step and a foot in the other. I certainly did with my son. Some days can be very hard. Other days, you may not feel these emotions at all.
There's the roller coaster.
Like I said, people grieve differently. You grieve differently than I do. And I grieve differently than my wife and my kids and everyone else in our family and our friends. We all are unique. We all look at things differently, and things hit us differently. But here's some typical emotions that I see in families when loved ones are in hospice care when I go visit them.
One thing that's almost super common is sadness and tears. Now, you may feel sad suddenly and feel the need to suppress those two for lots of reasons, how do you deal with that? Do you allow yourself to feel the pain? Or do you just kind of push it in the back of your mind for a while and keep pressing on. Be honest with yourself about how you feel. Be honest with yourself about the impending death of your loved one, and the loss of shared memories and dreams that could have been in the future. I mean, these are all real issues. These are the things that that we're grieving, we grieve loss. It's not only good for you, but it's good for your loved one. To know that, well, you're shedding tears that you are sad, that tells them that they matter and they're leaving matters to you and that you're going to miss them.
Tears help us express deep feelings. They can help us express feelings of sadness, of love of joy, whatever. These tears send the message to your loved one that they matter and that they're loved. And that is part of your healing process.
Another set of feelings that I encounter a lot is fear, anxiety and anger, not just the fear of death, but the fear about all the changes that may occur with losing your loved one. After they're gone and you are dealing with all sorts of pent up angst and concern. Maybe your loved one did all of the money managing or they did all the maintenance. And you're thinking, gosh, I don't know what I'm going to do. And and that's, that's anxiety and there's fear in there. Well, you know, those feelings are real, and they're valid. So don't push them back. Don't suppress them. Don't put a mental block up to them. You need to let that out and you need to deal with it. It's important to realize that every feeling that you have is legitimate, and it's valid. And you also need to realize that even as strong as these feelings right now, you can deal with them, and they're going to change as you deal with them as you learn to handle these feelings. You won't project the sadness, the anxiety and the anger quite so much to your loved one, and that will calm them.
Now don't misconstrue what I'm saying with what I said earlier, it's important to share tears with your loved one, it's important to share your feelings with them, because that lets them know that they matter and that they're loved. But as you move forward, and you start to move through the grief cycle, it's important for you to deal with these feelings, to put them in perspective and to find some some comfort in some peace. And that then translates into you're at peace and they won't worry about you as much.
I also highly recommend that you express these feelings, whether it's fear or anxiety or anger or whatever with your hospice team. They're there for you just as much as they're there for your loved one and they want to help remember the whole philosophy of Hospice is death with dignity and comfort. And that can't happen without you, the caregiver and the family being on board and having a sense of peace. Now, that doesn't mean that you're not sad, it doesn't mean that you're not going to miss your loved one. It just means that you've got this in perspective. And that means all the difference in the world. You've heard the saying, when you go to the doctor, don't hide your symptoms, be honest with the Doctor, tell them what's going on. Same thing here with your hospice team. You have to be totally transparent with them, whether it's med bed sores, whatever, whatever your issue is, you need to let them know and is you need to let them know how you're doing. In my experience, hospice visitors, whether it's the nurse, the therapists, the aides, even the musician, like me, will say to the family, How are y'all doing? How's everybody holding up? And those questions are sincere and we want to flesh out those feelings that part of the healing process.
Something else that I've noticed is loneliness. You feel an intense sense of loneliness sometimes some folks do. Especially if you try to suppress your feelings. And if you're trying to do things by yourself, I recommend you find a friend, a friend is not going to judge you, someone with whom you can talk openly. And maybe it's a hospice volunteer, somebody you don't even know, which sometimes makes it easier to talk openly. In other episodes, we've called this kind of an accountability buddy, or a BFF, whatever you want to call it, this friend, or this person, this helpmate, if you will, can be the one to stand with you to tell you when you need a break, or when you need a respite member. Self Care is a really important part of care giving. Even if you don't have anyone to talk to you can talk to the hospice counselors, you can talk to the volunteers that come they welcome the opportunity to open a dialog with you. They welcome the opportunity for you to share your feelings with them. They've been trained, they know what the healing process is like. They know what the grief process is like. And so they want you to be comfortable and to be the best you that you can be, so that you can provide the best rest of the life or rest of their life that your loved one can have. So talk to someone feel better by sharing these feelings and emotions.
Another strong emotion is guilt. Man, I see that probably 90 some odd percent of the time when I start talking to families at the same time you long for your loved ones suffering to be over. You may fear the moment of death. You may be experiencing survivor guilt, that's a real thing too. he or she's gone and I'm still here. He or she was sick. I'm not sick at all. You know, how fair is that? Why is that? You know, she's a much better person than I was or he's a much better person than I was. How can this be? I shouldn't be here. This is just not right.
Well, guilt is a real emotion. And we all feel it. I felt it. And I still do sometimes when I think about my son's situation, he passed away from brain cancers, you know, and I think sometimes, you know, what runs to the mind as well. Could I have done something more to be a better caregiver? Or did I put him in a situation where he contracted this, this brain cancer? or What did we do wrong? What could we have done better? Were we the best caregivers we could be? He was our oldest. We wanted a long life for him and now he won't have that. Well, I can tell you some nearly what 20 years after his diagnosis almost 17 years I guess. I still to this day, lay awake thinking about that.
My wife and I, when we have a bad day thinking about that we just tell each other well, I had a bad day today. We both know there's no more, no more explanation needed, we get it. And the tears we shed are tears of wondering and just fear sometimes that we did something wrong or that we didn't do enough, or we should have done something. And we didn't, or we did something that we shouldn't have, however you want to look at it. And people will tell you, well, you know, you did the best you could you really didn't do anything wrong, and, you know, move on with your life. Well, that doesn't help. You know, I want to say to them, I want to say "Hey, that was my son, that is my son. His life was cut way short. It's not fair." And that's when I have to have my faith kick in and say, I can't understand it. I don't understand it. And I put it in God's hands because it's beyond me to figure out why. And I do know that I did the best I could. I know my wife did the very best she could and so did our kids and so did the doctor. And so did everybody involved. Guilt. I get those feelings too and I still do.
So talking honestly to a counselor about that really does help. It helps you process that helps you get perspective. And may I remind you that you have access to counseling through hospice.
The last thing I see all too often is a sense of being overwhelmed. You know, just totally overwhelmed with all the things we've talked about. Just stressed to the max. You know, you're not alone. I think we all have experienced this sort of thing, at least once on these journeys. I recall wondering if I was doing everything right when I was taking care of Matt, I remember at the time wondering well, do we do this right? Are we recording the meds? Yep, we are. Or do we miss something? My wife had a a log that we kept in and are we you know, as the house being kept clean and is you know, the the toilet teen area, I mean, it is there. In the house, and just all of these different things go on and on and on in your mind, especially if you're a left brain person like I am, that loves to wallow in details. Well, I've seen people that had meltdowns because they thought they'd fail. They thought they had totally wiped out. And we're, you know, a terrible why for terrible daughter or terrible son or whatever. And quite frankly, they were ready to give up. They wanted it over. They even prayed to God, please take my loved one. Well, let me tell you, that's more common than you might think. And those feelings that you're feeling those feelings are valid. Because we are human, we can only take so much. And believe me, this journey can be rough. It can be real rough if you aren't prepared and equipped.
So what is the key to handling all these stress drivers in our lives?
Well, it is having help and being organized. I don't mean just changing the bedding and and coming in and helping with the meds and the feedings. That's important. Don't get me wrong. You need that help too. But you also need emotional help. You know, the emotional roller coaster is made up unbearable due to two things fear and caregiver burnout. And yes, that's a real thing. We did several episodes on that. And both are avoidable. You can manage both.
Have you heard the old saying there is safety in numbers? Well, that applies here too. If we have someone to share this journey with, even if they're not a helper or caregiver, but a sounding board, someone to be there for you. Then you have someone to vent your emotions to. Yes, somebody's shoulder to cry on. And that sounding board can help you keep perspective. I highly recommend that you do not try a journey like this alone. I was blessed. I had my wife who's wonderful and supportive, and our children who were wonderful and supportive. We had friends that were wonderful and supportive. I can't imagine going through this without them. Even if you don't have a friend or a family member like I did. Talk to your hospice team, let them help you find an experienced aide or volunteer who can come alongside you. That same someone can be your ..well, for lack of a better term, an accountability, buddy. They help hold you in check. They help you with self care, they help you with handling the day to day things. They help you with your perspective. Someone that can step in and say hey, let me give you a break even just a solid eight hours of sleep. Wow. That's, that's a huge blessing when you're burning out. And I recall how good it felt to get a full night's sleep when our son went into respite inpatient care. Sleep never felt so good. And it had never been more appreciated more needed. We were able to rest because we didn't have to worry about him, was he going to have a seizure? was something else going to happen? We knew he was in good hands. And we could kind of let our minds go as much as we could. We let our minds go, we had a good night's sleep.
So make sure you prepare yourself or regroup. If you're in this situation right now, deal with your fears, express those fears, say them out loud, look at the literature that you've been given. So you know what to expect. A lot of our fears the fear the unknown. And granted, they've probably told you already a lot of these things. But when you're in a state of fog that I call the 11th hour fog. You don't hear things. It's just how we are. It's how we're wired. We're so focused on taking care of our loved one. You can learn more about this whole journey by visiting our website at www.livingwithhospice.info. There's nothing for sale there. There's no sponsorship. It's just free straight information for you about anything and everything hospice and caregiver burnout.
We often don't self discover that we're burnout until we're burned out, and then it's too late. It's not cool. And remember, when we're burned out, we're no longer able to be the best caregiver that we can be. We're no longer making great memories, of quality, time. Everything is a task and life is very frustrating. And it's hard to smile. It's hard to be patient. It's hard to be tolerant. It sure is hard to be loving. So bring someone else on board to help you. Ask your hospice if you have to, for Assistance in finding someone that can be trustworthy, who's trained and knows how to be in this situation.
So let me leave you with this brief story.
When I first started volunteering, I think it was November... may have been the first part of December, and everything was covered with a beautiful blanket of white. I've always liked winter. I've always loved the first snow. And I had a patient lived out in the country out in the outskirts of our, our county out in the northeast, and he was an elderly gentleman who had spent 30 years in the Army as a master sergeant.
He and his wife had bought a small farm raised six children on that farm. They were all grown now. And the household had always been run pretty much to military standards. Clean, every bed had to be made every morning. every dish had to be clean. There was inspection of the silverware drawer, you know that kind of household and even from time to time walk through the bedrooms and bounce a quarter off the blankets and of course if if it bounced good, if it didn't Well, he took note and let that child know he was not making his bed properly. He used to talk about details, details, details. Success in life lies in attention to details.
Under the rough exterior, this master sergeant laid a very gentle man filled with love and compassion. He was a fabulous neighbor. He was the first to help anyone who needed it. He was great with his kids. He was truly the guy that a stranger the shirt off his back or five gallons of gas from his barn. He would stay up all night to work and help a sick calf or, or a birthing cow just to make sure everything was okay. He raised his kids to love life, to respect life, and to be the best neighbor and citizen they could be.
He was very independent. As he got older, his health failed. And now here, he's now dependent upon those who for so many years were dependent upon him. He was none too happy about that. In fact, he was sometimes just downright angry and frustrated. Then, of course, he'd apologize but to ask for forgiveness, and all would be well, he didn't understand why he could no longer do the things he needed in wanting to do. His wife all these years would explain to him in such a sweet voice that he had health issues including dementia. And of course at first he just say that's nonsense and totally rejected, and reject her and think that, you know, some evil thoughts about some conspiracy or something.
But as time went on, he would sit and look out the window and tears would fill his eyes. His wife tried desperately to put on the brave face and yet she'd break down and run to another room for a good cry. She was worn out in her mind, she'd failed him. She looked around the house wasn't squared away. She was alone as the kids lived all over the US couldn't be there with her even church and and friends stop coming around, which is not uncommon because that happens, people just don't know how to handle a situation like that so they don't come around anymore. And what few did offer to help she turned down even from the hospice team because her hubby wouldn't want it.
Finally, on this day, she'd hit rock bottom and when she was trying to calm him down and get some food in him, she smelled something burning. She quickly left the room and went into the kitchen and found a pan on the stove that made a grilled cheese earlier which is his favorite for him and burner was still on. She removed the charred pan from the burner turn the burner off and that's when she went to her knees in her kitchen, just sobbing and wailing uncontrollably, as if by divine appointment, our hospice nurse walked into her house and saw her in the kitchen. This nurse got on her knees alongside this woman put her arm around her and eventually wept with her. Nobody said anything nobody had to this nurse held her and comforted her just by being there with her.
After a bit, the woman excused herself and wiped her face. And the nurse explained that in order for her hubby to have the best possible life that he can have, that she needed to allow people to help her that she couldn't do this on her own. Nobody can. The woman quickly said, but he doesn't want any outside help. He's proud. And the nurse replied, If he saw you right now, I think he'd probably change his mind. He truly loves you. He loves his family, and he wants what's best for you, just like you want what's best for him.
So they called the office and some respite volunteers showed up the next day. And they began to come by on a regular basis. And they made friends with the family. I was also scheduled in, he and I talked and developed a great friendship. We talked about the military about the army tanks and cannons and all kinds of things that he really enjoyed talking about, and it probably won't surprise you - he liked Old Cowboy songs. So I had to learn a bunch of old cowboy songs. And I played and we sang a lot of those together.
In about six weeks or so, he transitioned. It was a different environment, then it was calm, it was under control. People knew what to expect. They were able to spend quality time with their husband and dad, the whole family was there. And his passing was very peaceful and pleasant. And with the celebration of his life and the legacy he left, there was a lot of joy. His wife wrote a heartfelt note to our hospice company. And in that note, she said, I just want to thank this nurse. And she mentioned her by name. I want to thank her for being there for me for being there when I needed her the most, and for not pushing me but allowing me to work in my own time, and to realize that I needed help. Thank you all very much and God bless you.
I hope you enjoyed this episode. And I hope you discovered some tips that will help you deal with all these emotions and I hope you understand where the emotions are coming from so that you can deal with those effectively and keep perspective. Seriously, facing your fear and accepting your emotions with grace for yourself, as well as taking good care of yourself. Getting much needed help getting organized, so you or someone else can help you deal with all of these emotions makes things so much better. This not only makes your life better, but remember it provides a calming a more comfortable environment for your loved one, as well as those around you and your family and friends. As always, we're grateful for your time and we hope this episode has been helpful for you. We'd love to hear from our listeners, please drop us a line at www.livingwithhospice.info and let us know how we're doing. You can always subscribe to our podcast and you can find us where you get your podcasts if you'd like. Until next time, this is Mitch Ware for Living With Hospice, have a blessed day.