Episode 26: How to Help the Caregiver

Every once in while, we discover that a dear friend or family member is cast into the role of being a caregiver for someone who is in an end of life situation. The first thing we think is how can I help? In this episode, Mitch Ware explains the importance of helping out our caregiver friends, and offers several ways to do so tactfully. 

Transcript

Welcome back to another episode of Living With Hospice. My name is Mitch Ware. And it will be my pleasure to be your host today. Come on in, grab some hot coffee, or if you'd rather there's a cold beverage over there in the fridge, grab one, pull up a chair and let's chat today. But before we get started, I've been asked What in the world happened to all those animals he used to reference? Well, let's see. They're still here and doing well. old boss cat Charlie's slowed down a little bit. He's an old cat. And he certainly has been very active and had a very active life. He's got a few things going on medically, so he's slowing down his older cats off and do Cosmo the big dog he's doing very well as is Chloe, the orange cat. I did change the time of day, however, that I record these episodes, so I think that has something to do with it. But today, they're all here and ready to go.

Well, one of them is Charlie's laying on the end of the counter here next to the controls, making sure I don't mess things up too bad. So, if Charlie doesn't agree with something and he reaches over there, we'll know. We'll know why something goes haywire here in a minute. Chloe is asleep on top of the condo tower. And she likes that she loves to look down on the rest of the world around her I guess. And Cosmos in the shade back by the trees, enjoying a nice summer nap. 

Something else before we start, just to be clear, I am not offering medical advice. I'm not a doctor. I'm not a social worker. I am not a licensed counselor, nurse or certified medical professional. I do not offer medical advice. I am a very experienced person who's been a caregiver and a longtime hospice volunteer. I've been on the inside and on the outside of hospice. And I have seen a lot of End of Life journeys, and I have some really good tips and encouragement for you. Today's episode is no different. 

When we hear news of someone we know is ill or is going through a rough patch in their lives. The first thing we ask is, how can I help? What can I do? This is especially true when that someone is seriously injured or seriously ill. It's something that is just socialized into us, I guess it's a good thing. That's for sure. This is how we build our relationships. And this is how we build community. In today's episode, we're going to take a look at some really great ways we can help those who are helping people that are suffering. Someone wants said to care for others who cannot care for themselves, is giving up one's life. So their friend will have a life in many ways. That's very true.

Caregivers sacrifice weeks months and in some cases years of their lives to care for others. caregiving for a loved one can be profoundly fulfilling as individuals often move closer together when challenges arise. However, caregiving can also be daunting, it emotionally and physically challenging and isolating sometimes, many times caregiving results in caregiver burnout. The challenges of caregiving are so widespread and encompass way more than the care of the patient. And we're going to talk about that today. 

So how can you help a caregiver? When I think about how can I help Mrs. Jones or I sure wish I knew what to do for my buddy time. I typically start to think, Well, what does Tom need?  or What does Mrs. Jones need? And more importantly, what does she need that I can provide. I don't have a lot of free time. I don't have any extra money. But I want to do something. My family wants to do something, what can we do? Another way to look at it is what can a caregiver not do or get for themselves?

When you're a caregiver, especially for someone who's at the end of life journey, most everything and I mean, everything goes on the back burner. Seriously, your priorities change the way you look at life changes. The way you live your life really changes your daily routine that you once new is gone. You've got a whole new one, even things like eating and sleeping. They all change. The mundane things like getting groceries, stopping at the gas station, or even picking up pizza are no longer on your radar. focused on them in the things are about them and around them like making sure the meds are done correctly.

Making sure the med logs are current, keeping the incident logs up to date and remembering to write down all the questions that you want to ask the nurses next time or the chaplain or the counselor. And then of course, there's bathing in toilet and on and on and on and on and on, then collapsing from sheer exhaustion for a few hours of sleep when when you can get it. 

So here's some things that you can do. 

First, ask what they need more often than not, they'll tell you exactly what they need milk bread, wine, wine coolers, they'll tell you Oh, they may even make a joke. Like, oh, I needed a full night's sleep. Or I would give anything for a nice long shower. Or I need to live in some sort of magical house that cleans itself. Or I'm just so tired of hot dogs and mac and cheese for dinner every night. I recall one of my family saying I wish I could just leave long enough to get my haircut.

Some great hints right there. They they gave you some ideas of what they really would like most. If you're a caregiver or you were a caregiver or you live with a caregiver, you know that caregivers do not have the time to do the things that they take for granted otherwise, like shopping and putting gasoline in the car and attending meetings, going to appointments, picking up this or that, you know, running errands. So what else can't a caregiver do who's taking care of someone in their home 24 seven, they can't go out to a movie.

They can't stay in bed when they lack the energy to face the day and believe you me there's plenty of those. Most caregivers get to the point where they dread doing the cooking and feel guilty about not doing the laundry in a timely fashion. Something we take for granted is no longer an option for them. Little things like just relaxing for a couple of hours. The huge thing most caregivers Miss is just a full night's sleep. You're gonna hear me say that several times, not only in this episode, but in other episodes.

In my years of experience, it's clear to me that caregivers, as well as people that they're taking care of need help in four distinct ways. Medical, physical, emotional, and spiritual. 

medical needs are something you probably can't help with. However, if it's appropriate, offer to be there when the nurse comes or the doctor comes in to help listen to what he or she is saying, as well as to help ask pertinent and timely questions. You can help set up those logs we were talking about and the journaling. checking in and filling pillboxes in the like are always welcome to for the more physical needs, you're able to offer maybe to help clean house, do laundry.There'll be a mountain of it. I guarantee it. cook some meals, help with lifting, run errands. 

Do not expect the caregiver to entertain you by the way, like when you walk in, don't expect them say Oh, hello, how are you have some coffee, here's some cookies I just made. In fact, stop on your way over, grab some good coffee that you know that the caregiver likes, grab some cookies while you're there. 

(Not chocolate chip by the way. Everybody brings chocolate chip, I mean, EVERYBODY brings chocolate chips. So shake it up some bring peanut butter or macadamia nut or scotchies anything but chocolate chip. Unless you know unless everybody's addicted to chocolate chip then Okay, sorry.  End of rant :)

They also need emotional support. And that's where you the coffee and cookies can kind of help open the door for them. To sit and just chat and talk about what's on their mind, let them let that caregiver, talk to you about what's going on what they're feeling what their needs are. This is really, really important. Caregivers need emotional support. Part of what is taking care of themselves physically, but a big part of it is a friend being there to listen. Some of the best things we say are really never even said or spoken. You know, we're just present.

Our presence shouts that we care. It says that we're here for you. And we have your back or I have your back. I'm here for you. When my friends came around in our situation, in an offer to just you know, Hey, can I come over and hang out for a minute or can I come over and and visit it was awesome. One in particular was there when we needed him every single time without fail. It's like he knew we were going to need him that day and he was there. He knew from I guess from what he saw, he knew what we needed. And he just went and helped and did it. He was an awesome sounding board as well for me, when I was dealing with tough issues like DNR s and, and feeding tubes and all of those emotional issues that my wife and I had to tackle about our son on his journey.

For maybe some more intimate or private emotional support, you may want to just ask the counselor or chaplain to meet with you and we all have a spiritual need to you know, there's an old saying from I think World War One that there's no atheists in foxholes. And in my experience, they're very few in hospice care either. End of Life journeys cause all of us to stop in wonder about our own mortality, and perhaps even our own purpose in life. Why are we here? It's good to get the professionals involved in these discussions. And it's great. It's super good to have these discussions and get these feelings out. Spiritual support is really important. And it's available for clergy and deacons and elders from your church or books and tapes and books on tape and podcasts and prayer groups and prayer chains, musicians, millions of other ways to help your caregiver friend, attend to these needs these spiritual needs these emotional needs. In fact, think about all the ways you can help fill the needs that they cannot fill for themselves spiritual, emotional, as well as physical and medical. 

Some people will say that they don't need the help.  Boy I wish I had a nickel for every person who ran into like that, where I go into a household and I'm doing my thing with my music or whatnot, and I can see things are our people are tired, and they're burned out and they're stressed out. And maybe this is their first exposure or experience with death and dying. And I asked, do they have help? Oh, no, no, no, we were good. Well, they aren't good. And as they begin to decline, you can see it in them in soakin. So can their loved one, who's the patient.

We all know people that for some reason or another, they just prefer to do it all by themselves. And in this arena, of of end of life, they typically crash and burn within a few months. At least that's my experience. caregiving is typically more than a one person job anyway. And sometimes it's more than a three or four person job depending on how much time people are spending, quote, unquote, on the job. It's a huge job. That most people just have to learn on the fly. I mean, a lot of people, especially the first time through this don't have a clue as to what to expect. Hence, that's why we're doing this podcast. 

Even though we're told "Well, you're going to need this, you'll need that." Because we're in the 11th hour fog when we're getting this information from hospice. We don't hear it or we don't see it. That's why it's always good to have a friend in these meetings with you. That's maybe a little detached from your family unit so that they can hear with different ears and see with different eyes and they're not as impacted with that Death and Dying 11th hour fog that that we are as caregivers or as close family members.

I've run into several caregivers that really don't even consider themselves caregivers. True story. They just look at it like well, this is my family. This is what we do in this family. I really don't consider myself a caregiver. I'm just doing what I'm supposed to do. 

Some cultures and individuals just don't self describe or identify themselves at all, as a caregiver rather, it's a familiar expectation and complete with hierarchy and traditions and generations of caregiving. This goes back as far as mankind itself. Many people from other ancient cultures see caregiving is well, a blessing. It's an honor. It's a loving duty. And yet, others it's simply family tradition. It's expected. No questions asked, none needed.

So either way, family tradition or cultural tradition. You may get a polite, but firm. No, thank you. Thank you, but we've got this. Now that happens. Don't be offended. Don't take it personally, because it wasn't meant personally.

So what do you do?

You be there for them in the ways they will allow you to, like regular visits, perhaps bringing a dish of food or maybe make that special dessert that you're famous for. Yeah, you could still go on record by saying, I'm here for you. If you need anything, please let me know. I'm available for you or our family's here for you. If you need carpooling help, we're here. You need the lawn cut? We're here!  The pool cleaned? We're here!  The leaves raked? We're here. Just let us know.  And even if they don't want it or don't accept it, they may want it but won't accept it. Just that gesture that you made by offering and and being sincere about it is worth more than all the gold in the world. 

There is one other huge reason some people will not let anyone to close and that is finances. Many families suffer a huge loss of income when they enter into an end of life caregiving situation, often caregivers have to take a family leave from work, which then significantly reduces their income. And in some cases, their ability to live a quality life. In my experience, I've seen cases that the Family Church will pitch in and help pay bills and everyday expenses as best they can. But what about those who don't have a church, there's a wonderful option that most people are aware of now called GoFundMe. But back in the day, people would hold fundraisers, like spaghetti dinners, or have car washes, or have big raffles in the like. Now, people tend to go to the GoFundMe online fundraiser. People need to be assured that their dignity and pride are kept intact and that's running around in the back of their mind is they're taking care of their loved one and they know that there isn't much to offer visitors when they come over because quite frankly, they're running low on food and groceries and snacks and, and things like that. Those who are struggling hopefully will accept the help from the community or the village in which they live. 

A few years ago, the hospice I was volunteering for accepted a patient in the far north end of our county. It was an in home hospice care situation. They lived on a family farm one of those Centennial farms has been around for 100 years, although this one's probably been around. Gosh 150 anyway, and it was miles and miles and miles from the closest town all out on a real narrow dirt road. I remember the first time I drove out there, the chickens met me at the at the road as I pulled into this driveway. When I got out the air was filled with the smells of a working farm.

I was met at the door by this lovely wonderful elderly lady, Mrs. Charles. That's not a real name, but we'll call her that. When I walked inside it was like walking into mid 1940s or late 1940s, early 1950s. The kitchen had a really nice gas stove in it. But the wood cook stove had the pot of hot coffee brewing on it. An old denim jacket was hanging on a hook over there by the door with a hat above it, and an old pair of leather boots underneath on a rug. And I recall, a 12 gauge double barrel shotgun was propped up in the corner right by the jacket and boots.

This room looked like something out of a Norman Rockwell drawing!.

As we walk through the kitchen and down the hall, I could see Mr. Charles in a hospital bed in the parlor. I walked in and as I always do, I greeted him and, you know, introduce myself and he was really polite, seemed genuinely glad to have a visitor. He could see my guitar there. And I think that really perked him up in as much as I'm a bedside musician. I asked him what type of music he enjoyed. He said, I like the old gospel hymns. And I really like the old country songs, you know, Western songs, but sung by the singing cowboys like Gene Autry, Tex Ritter, Bob Wills, Roy Rogers. Do you know any of those?"

I'm like..."Yes, sir. I do. Actually I do." In I'm saying to myself, learn some old cowboy songs ASAP.

Now, that first visit was awesome. In fact, they all were awesome there. But little by little I could sense something was off. Just in the dynamics there in the house. It's like it's not my place to ask. I'm just supposed to observe and entertain the troops so to speak. But after one visit in particular in which I just knew something was wrong. I could read it and Mrs. Charles, I could just sense it, feel it in the air. I broke my own rule. And I asked Mrs. Charles, actually, she had me call her Mrs. C.

"Mrs. C, is there anything okay?"

And she replied, "I'd give anything for full night's sleep."

She said Mr. C, doesn't want any help in the house. And he's always been very independent. And the guy who always is helping others, whenever anybody needed anything, he was always the first one there.

I saw photos of their kids all over the house. So I I just said, well, where are your children? She said, Well, they're scattered all over the country and even one is overseas. When I got back to my truck I called the caseworker.  I explained what I was seeing what she told me and what I was feeling that started a ball rolling. I had no idea of where it would end. Well, I thought I did at the time, but I was wrong. Or hospice counselor visited with the Charles family and discovered that the issue was not so much a lack of opportunity to sleep for Mrs. C. It was that she was worried over being able to pay the bills and keep the farm and she didn't share this with Mr. C, because she figured he had enough on his plate as it was.

She was managing what he typically did with the farm in the finances, as well as taking care of him. Well, I have to tell you, I never saw that one coming. 

So you can imagine with the Charles's permission. Well, Mr. C anyway, a group of friends mostly farm folk, held a big fundraiser. They raised enough money to pay the past due bills every single one of them and even had money leftover for a nest egg for future expenses. And it was also discovered that several of the men - several the farmers in that area - had been systematically coming by filling the water tanks for the animals and just quietly keeping an eye on things as they new Mr. C was declining. Mrs. C was so busy inside she never noticed. 

There's a saying it takes a village to raise a child. Well, the village is a real thing. And there are many benefits to belonging to one, even if you're an adult, and part of belonging is helping those in your village in a very tough part, but important part of belonging is being vulnerable, being honest and allowing the village to come to you when when you need them.

Thank you for joining us today. We welcome all of your comments, all of your questions about our podcast episodes, as well as anything and everything hospice would be on your mind. You can reach us at www living with hospice dot info. And you'll find all of our episodes there and you can subscribe to our podcasts there as well.

So again, if you have a friend that's caregiving for someone at the end of their life, pitch in and help ask how you can be there for them, look and see what they can't do for themselves, look and see what they need.  And if they absolutely refuse, then just be there for them. Make regular visits, touch base, and that's worth more than you'll ever know.

Transcribed by https://otter.ai