Episode 40: Hospice and the Holidays

Originally published in 2020, LWH's classic episode on how to handle the Holidays is once again returning for the season!  Holidays are often difficult for anyone who has experienced or is facing the death of someone they love.   Instead of being a time of tradition, family togetherness, sharing and giving thanks for blessings, this time of year can bring feelings of sadness, loss and emptiness.  What do we do when we are feeling pressure to engage in the "holiday spirit", but we are triggered by memories of earlier times with a loved one who is now facing a terminal diagnosis?  

While no simple guidelines exist that will take away the hurt,  Mitch discusses how to acknowledge and deal with these very normal feelings, and provides some alternative suggestions for keeping traditions and celebrating with a loved one who is in Hospice.

Transcript

Hello, and welcome. My name is Mitch Ware.   I'm your host today for Living With Hospice. 

You know, 2020, it's been a crazy year to say the least. It seems like, at least for me, the days crawled by, but the month flew by. just seems like it wasn't long ago and it was July. And now here we are in November, at least at the time of this recording, we're just a day or so away from Thanksgiving, which is the gateway to the holidays. 

The holidays can be particularly difficult for people dealing with a terminal loved one, or for someone who's just lost someone.  In our case, we just lost our boss cat, Charlie. Charlie was like a member of the family. He wasn't just a pet, he was kind of the mayor of our neighborhood. Everyone is rather melancholy about that today, and it changes how we do things, because it changes how we feel. 

When we lose something that's close to us like that, whether it's a pet or a loved one, or we have in the back of our mind that we're going to lose a pet or we're going to lose this loved one soon, it impacts how we think.  It impacts how we behave.  And it impacts how we feel. It's all part of the grief cycle. Well, now here we are in the holidays and there's always a lot of pressure during this time of year for all of us, regardless of our circumstances to be upbeat, generous, social, and gracious. Even with the situation you find yourself in, those pressures are still there. 

Caregivers can can feel torn between wanting to enjoy a final holiday with their loved one in mourning the loss they know is coming inside internally. We're conflicted in our feelings and our emotions. That's normal. It's common, and it's healthy. It's part of the process. When you combine these feelings with caregiver burnout, it can be absolutely overwhelming. 

While everyone is unique, and how they feel about the holidays, shying away from the reality, well, that's going to make it worse. You know all these feelings, it's part of dealing with our new normal, but these are real feelings. And the grief process is a real thing. And it does impact our behavior. And it does impact how we process and it does impact how we look at our life around us. And the holidays are a big part of that. 

If your family is like my family, you have a lot of little traditions that you enjoy around the holidays, like getting together for Thanksgiving meal and watching our poor sad Detroit lions lose in a big game that's nationally televised for the world to see. Some people actually go out and get their Christmas tree on Thanksgiving Day or on the day after some families have a tradition of getting together for in the morning shopping on Black Friday and getting the best deals they can and things that they want holiday concerts and festivals and parades. And, of course, the the children's program at church and Christmas Eve services for some of us in church. And of course, in our family, there was always that one present on Christmas Eve before bed. And then of course there are all the Christmas day activities, you know food, presents, games, laughter, fun, running outside.  These are good things. 

But when someone in your family gets terminally ill, well things change. Or if you just lost someone. Things change. How you perceive this holiday changes.  How you want to celebrate this holiday.... changes. Some of the activities that just may not be practical for you this year. And quite frankly, you may not feel much like celebrating. 

We all go through a time of being conflicted about this. Here are a few things to ponder. It's important that we acknowledge that the holidays will be different, and in some respects are going to be very tough. With a little help and some paradigm shift in your perspective, you got this.  Normal went out the window when you heard that terminal prognosis or when you discovered that your loved one had passed away. Holidays are loaded with tradition and some of them are good and some of them not so good. 

Like for example in our family the you know an annual snowball fight that usually ends up with someone getting a wee bit a wee bit too overzealous and bloodshed occurs and well yes, I raised four boys and believe you me they are all boy. Decide which traditions you think are important and want to keep you want to hand down to the next generation, and that bring purpose and fulfillment in your life. Decide which traditions you want to change. If appropriate, consult with your loved one or your family or your friends, you know, especially if you have a loved one that's terminally ill, they should be first in priority in this consideration. 

All of us have our own way of dealing with this. But most of us don't think about it until it's almost on top of us. If we're a caregiver for someone who is terminally ill, we're in that 11th hour fog that we keep referring to in these episodes. We don't think straight, we don't process well. We're so busy accomplishing tasks, making sure this gets done that gets done, the meds are right. The calendars kept the toileting, the bathing everything, and we look up and boom, here it is Thanksgiving. Well, that's when the panic sets in, you have a choice, you can keep your traditions as is, or you can modify them. Or in some cases, if it's necessary, you just cancel them all together for this year, all of which these three things have consequences down the road. Some good, some not so good. 

Remember, the goal of this is twofold. First, we want to allow our loved one to feel included, not forgotten. And second, this is to help you actually share the holidays with your loved one, one way or another you're together and you're building memories, and you're communing in in the love that you have for each other. And you're modeling behavior for those who are out in the bleachers watching all of this that have never been through this that don't know exactly what to do. 

May I suggest a few more thoughts for your consideration. First, when planning holidays, or any activity from here on out, it's prudent to have a plan A and it's very prudent to have a plan B. And Plan A is the plan that's closest to what you and your loved ones or your family really want to have done. Plan B, that's something else that is workable, and perhaps a pared back version of Plan A, for example, if you're like when we were planning our wedding 100 years ago, and we got married outdoors on the water up in Traverse City, and a plan B was to go into this Pavilion. Fortunately, it was a gorgeous day. And so we didn't need Plan B but we had Plan B setup just in case. So for the holidays this year, you converse with whomever you have to find out what Plan A is, do we want to keep things the same? Do we want to change them a little bit or should we just cancel them this year? 

First, let's look at the scenario that your loved one is in a facility. holidays in family traditions are, are where we make our memories. And they're wonderful memories that we keep a lifetime, not only for you, but for your entire family. And they still can if you want them to in the situation allows, you can modify your plans just a bit if you have to, to include your loved one who's in in the hospice care facility, even if there's a bit of a lockdown. And I say a bit because it really depends on the state you're in. And the hospice agency you're working with. In some instances, you can just simply bring those traditions to your loved one wherever they are. Clearly, you know, there are a few things you can't do. But try to do as many as you can. Granted, you may have to do some of them through a window or even across the street. But you can still have your celebration with your loved one in attendance that way. 

But Mitch, what if my loved one is in a facility and we can't even get close? We can't see them. We can't go to the room. We can't go in the hallway. We can't go in the lobby. We can't even be up by a window because they're not by a window. Then what? Well, here's a couple of ideas for you that some of our patients are doing. Many people FaceTime with their loved one. Now not all loved ones that are in hospice care are able to see an iPad screen or computer screen. Not all facilities have a big monitor like a 52 inch TV that you they can plug into a laptop and allow you to FaceTime so they can see that big monitor but some do and it doesn't hurt to ask You know others, we've had patients, families who send videos or even audio recordings, send one each week, maybe every day of Advent, include a little Advent note or a special note, you know, these recordings, show the family taking turns talking to your loved one, singing songs, telling or reading stories, and sometimes just sitting around reminiscing and laughing and just as if grandma or grandpa or whomever was right there with them. These recordings are often accompanied by little decorated Christmas tree, and cards, lots and lots of cards. The best cards, by the way, are made by grandchildren, or young friends, maybe a first grade or second grade, Sunday school class where you attend church or something. And it doesn't hurt to include some homemade cookies. If you can get that by the folks at the facility. 

Current COVID rules again, they're different, if you go just depends on what state you're in, what area you're in, and the rules of the particular hospice agency that you're involved with and rules of the particular facility that your loved one may be in, you can try coordinate as a special time to visit with your loved one in conjunction with the facility's own celebration. Now, some of the facilities are keeping their population separated. But not all of them. Some of them actually do still have group time. And you can request to be present via FaceTime or maybe standing outside the window. Or maybe there's a hallway with a with a door between or window between where you can stand in and participate that way. You didn't hear it here, but you might want to request bending of the rules a little bit for Thanksgiving or for for Christmas Eve or Christmas Day. Not saying they'll do that, because the onus is still on them meaning the facility. But some do. And maybe hopefully by Christmas time anyway, or New Year's Day that a lot of these restrictions will not need to be in place anymore. At least we're all hoping and praying for that. 

Again, our goal is twofold. First, to allow your loved one to feel included and not forgotten. And second, to help you and your family actually share the holidays with your loved one one way or another whatever works. Now, what if your loved one is at home in hospice care? Now that's different. 

There are two dynamics that help determine, you know what, or how to celebrate the holidays in in our home. The first is the condition of the loved one at the time. And the other is the caregivers ability and willingness to celebrate the holidays, given everything else that's on their plate, that's a big one. That's a huge one. If somebody's struggling with caregiver burnout, they're probably not up to entertaining a holiday party. So the rest of the family needs to take that into consideration. And we'll talk about that a little bit more here in just a minute. For the sake of conversation, though, let's say the caregiver is willing and the loved one is to how do you proceed? Okay, timeout here, in this age of COVID and coronaviruses, you have to proceed with great care given to taking the necessary precautions following the CDC guidelines for gatherings during this crazy COVID period. So this may mean having fewer guests and fewer visitors socially distancing, which means separating chairs a little further, and wearing masks, especially if you're around your loved one. And gloves to if you're going to touch that person socially distancing, when together has been shown to be the most effective way to stop the spread of covid. 

So we need to keep that in mind. wearing masks and gloves, that's good too. limiting your own exposure for a few weeks prior to the event to stay safe and not be infected is also prudent. You may have to celebrate together including the meal via FaceTime, or zoom. A lot of families are doing that people have decided, Okay, you know, we're gonna all dial in and zoom together, we'll have our meal together, we can all each hear each other speak, we can all talk, go ahead with your traditions, modify where you have to and make this a great Thanksgiving or a great Christmas Eve or whatever. 

You know, it's really good to have your loved one involved in these festivities. The more the better to, for example, if they're able, let them help decorating. Let them help cooking if they're if they're really able In baking and wrapping presents, telling stories and in singing carols together, you know, let them participate in this, in this preparation. And of course, I'm saying this because not everybody in hospice care is bedridden and unresponsive. A lot of folks in hospice care, you would know they were, if you were to just look at them walking down the street. 

So just because we have this terminal prognosis doesn't mean we have to suddenly turn off our traditions, or turn our back on them, we can still participate and still make wonderful memories not only for ourselves, but for for those around in our family. So it's okay to modify our traditions to fit our situation. And to go ahead and celebrate. There's nothing wrong with setting up some card tables or TV trays around your loved one, and have your dinner with them, Converse and laugh and tell stories. If they can participate. Great, if they can only just sit there and listen, that's great, too. You're really giving them a huge blessing. And you're blessing yourself. You don't maybe realize it right now. But somewhere down the line, you will. I know it's a little extra work to do that. But when you look back on it one day, I promise you, you'll be so glad you did. Celebrating these traditions is a nice piece of normalcy tossed into the middle of this time where almost nothing is normal. Normal sees good, we all gravitate to it. It's our little safe space. So going ahead and celebrating these traditions. Wow, that brings a wonderful element of normalcy to everybody. 

You know, I recall when my son Matt was first diagnosed with terminal brain cancer. And he was perfectly fine at the time, I mean, to look at and his ability to do things and communicate and whatnot. It made every holiday after that different. he sensed it to, even before the effect of his cancer were really evident and obvious. It was always in the back of our minds. It was something we couldn't escape, it was just always there we went to sleep it was there, we woke up it was there. We would hear or see something in the middle of the day it was there. And we as a family. Well, like I said earlier, we have a ton of traditions. I'm big on that. And many of those are about in around the holidays. Like Thanksgiving, we always have a big traditional sit down meal together with Turkey and all the sides. And it's wonderful. And we go around the table before we start eating and we share what we're thankful for. And after the dishes are done, we all sit in the family room and watch the Detroit Lions lose and their nationally televised football game. And we take turns napping and the kids play outside when they were little. And as they get older, they went and saw their buddies after supper and after the game. But you know, those were traditions. For Christmas, we would go out as a family and cut down our own tree at the local tree farm and we the boys would help and we would load it on the wagon and ride the wagon back up and why they were binding the twine on the tree. We'd all sit around the big bonfire. They had their and they had hot chocolate and stuff. It's great. And we still do that to this day. 

On Christmas Eve there's always church services. And after church, each of the kids get to open one present before going to bed. And of course, they couldn't come downstairs the next morning to see what Santa had brought them until they woke my wife and I hop and then we all went down together. By the way, after the kids were grown, and kids have kids have their own stories come out about how our kids used to sneak downstairs in the middle of the night. Making sure that to step on each step. You know, just they had a special spot there's a special spot in each step of the stairway so when you stepped on it, it wouldn't creak too loud. And you know, they're sharing this now like, like my wife and I didn't know they did it. Oh my gosh. Anyway, I digress. 

When we all got downstairs you know we would we get a cup of hot cocoa and some breakfast snacks and then each of us one at a time would open a present a wrapped present. And after the presence were open we would we'd eat our breakfast together and then enjoy table games or whatever and kids would get dressed go outside and play in the snow courses. They got to be teenagers. They're too cool for that. So they had to go find their buddies and compare their the bounty that they were able to achieve over the holiday, but we have traditions. And we build memories during those traditions. And they're, they're part of the fabric of our, the culture of our family. And so they're important to us. 

When Matt got sick, and we had to modify our traditions a little bit each year.  You know, the first year, he was still able to participate in everything per normal. But as a disease advanced, and in the next few years, he was no longer able to do that. But we still had those traditions and activities. And they were, they were important to him. I remember asking, "Well, maybe we shouldn't, you know, do it like this this year?"And he goes, "No, no, I, let's do it Dad."  Okay, fine. And so we carried on. 

We had to modify things from time to time, but like he wasn't able to eat at the table. He wasn't able to unwrap presence. But we brought the table to him. And we brought the presents to him. I recall saying we were not going to allow cancer to steal our joy. And he agreed. Absolutely. 

For us every day was a 24 hour lifetime. We didn't look at tomorrow, we didn't look back yesterday. And we adapted to the situation around us and moved on. And Matt couldn't have been more pleased. 

As my father in law used to say, let your conscience be your guide. If you think you can move forward with your traditions or maybe move forward by modifying them somewhat, then by all means do that. If you especially if you can get help doing it. And if you can't, then in you feel like you need to cancel Thanksgiving dinner this year. Okay. This type of celebration also does one other thing. It lets your loved one know that they matter. That's huge. Think about that. 

You know, I had a patient who was in hospice home care. Gosh, this was a while ago, she was a widow and her daughter and granddaughters were her caregivers. And grandma was a big fan of Christmas. She'd always had a nativity scene. Gosh, I couldn't think for a minute. This full time nativity scene set up in her front yard. The whole world could see it. She had you know the Christmas Angel. I mean a real Angel up there all illuminated. This isn't like barn where it's wire with just lights so at night when a when it's lit up it looks like an angel. I mean, this was a three dimensional plastic angel that they hung from overhead from a great big sturdy maple tree limb. And in so are the you know, the Mary and Joseph these were real plastic manger was was really made out of wood. And over the year she'd gathered all of the animals and, and the three wise men and it was a big deal to her. And she even went you know, she had garland and bows and candy canes and big huge white pine out front of her home. And she had a decorated with lights and tensile from the ground all the way up to the top. The house was two and a half stories and the pine was as tall as a house. I don't know how she did it. I'm sure she had someone come in and do it. But I mean, this woman, you walk in the house, and wherever there's a level surface, there's something there Christmas, as the holidays approached. In here she is in hospice care. She told her daughter, you know, really don't worry about all that stuff that was really for you kids and neighbor kids as you're growing up. Yeah, it's just a lot of work to get it all out and storage. And I don't even know where half of it is. And don't worry about putting it up this year. And besides, it always blows the fuses when we turn it on.

It's more important to keep the electricity on right now. Then have that up out there and all you kids have grown up moved on and neighbor kids have all grown up and moved on. So probably, you know, it's it's seen It's time. Let's just let it go. Now, grandma was the go to person in the family. She was the matriarch. She was kind and loving and compassionate. But she was hard working. She was independent. And Rumor has it she was rather stubborn. She was self educated in very involved in community and church activity, school activities and things. Christmas, though, was her favorite time of year. She even had several christmas outfits, one of which was like Mrs. Claus. She'd always say, you know, the love the Christ child can be found in all of us, if you take time to look, and that's what Christmas is all about. She told me that more than a few times. her grandchildren couldn't wait for the first note of fallen in this West Michigan community. his grandma would make hot cocoa, everybody would come over to grandma's house, and intagram boys and girls to bring their buddies they all went there and and had a good old fashioned hot cocoa and, and some cookies, rafter school just there was just part of the tradition for the kids. Nothing on earth is better. All is well in the world for those kids at that time. Well, unbeknownst to Grandma, these now grown grandkids and their buddies. It quietly set up all the decorations outside, I mean, all of them even the huge, tall white pine tree, there was a small tree, a real a real tree, not more than 14 inches tall, standing proudly in a pot by the window that grandma someone had given her. Grandma loved looking at it and said, you know, that was all she really needed for Christmas. Just the sight of that little tree. As the nights turned into days and the days and tonight's grandma was no longer eating or drinking or responding or looking at that little tree. On Christmas Eve, the small family gathered at grandma's house. It was a little awkward nervousness in the air. This time. They stood outside and they sang. Oh, holy night, Silent Night. All of her favorite hymns for this time of year. They knew that this was grandma's last Christmas Eve. I just can't imagine going on without her. As a sunset, the Christmas candles were lit in each window. And the family gathered around grandma in what we would call a sitting room or parlor I guess where her bed was, they began to sing her favorite carols. Nobody in the family was going to win a Grammy for their singing ability Believe me, but that night they they sounded like, like the angels in heaven, probably sound just just beautiful, giving all homage and in praise to the creator and for the gift of the Christ child. The real reason for the season, grandma taught that from day one, one of the granddaughter held up a present and said, Grandma, this is from all of us. And the little girl opened the present to find a framed photo taken a few years before of all of them decorating grandma's Christmas tree. And you can see in the photo cups of hot cocoa with marshmallows and candy canes and Christmas cookies. Well, you can imagine joy and tears filled the room. Shortly thereafter, mom noticed that grandma had a slight smile on her weathered face. She'd crossed over in the midst of the laughter and the singing and the love the traditions of this family's Christmas continue. When I'm in that part of the county, especially this time of year I make it a point to go buy that house. I believe one of the granddaughters and her hubby own it now. And every Christmas. There are candy canes and garlin in lights on the now gargantuan white pine tree all the way up to the top from the ground. And there's a that same nativity scene with that beautiful angel hanging from a sturdy limb on that maple tree. And now there's a sign that says the love of the Christ child can be found in all of us.  Thanks, Grandma. 

Well Rest assured the holidays are are different when you're dealing with someone that's terminally ill or maybe you just lost someone. But you have a choice. You can make it to be what you want it to be. You can follow your traditions and keep those alive for the living for those still with us still around especially the little ones as we all find comfort in traditions, or we can modify them somewhat. We all love these traditions. We love them because they're meaningful and they bring us together and they bring back wonderful memories that brings our loved ones that are gone back to us. They help us remember the important things in life. They help us bring the focus to what the holidays are all about. family friends love faith. sense of gratitude and Thanksgiving, and hope. 

Well, thank you for sharing your time with me today. I appreciate your support more than you ever know. I look forward to our visits in the future. This is the last episode of 2020. We'll be back in 2021 with a whole bunch of new episodes about Living with Hospice. 

We love hearing from you. We love your stories. We love your comments. So please share those with us at www. livingwithhospice.info. Or you can leave them in the comment section right here on this platform where you get your podcasts. And so until next time, this is Mitch Ware with living with hospice. Have a blessed holiday season.