Episode 30: New Year, Same Struggle

As the New Year begins, people are often filled with renewed energy and hope.  It's a time of new resolutions, new promise, new adventures, and boundless opportunities. However, when you're on an end of life journey with someone, the world around you never quite feels like that.  In this episode, Mitch discusses how to manage when you are in a world that doesn't change, or seem to move forward, with the rest of the world.  Mitch provides insight on how to handle holidays and special events that you aren't able to participate in, as Caregivers, and reminds us of the importance on taking care of ourselves during this stressful time.  

Transcript

Hello, my name is Mitch Ware, and I am your host today on this episode of Living With Hospice. It's a new year, lots of new promise, new adventures, boundless opportunities. However, when you're on an end of life journey, the world around you just stops. Especially in the beginning, you cannot forget about the fact that someone you love or care about is dying. It's always there. When you wake up, it's there, when you go to sleep, it's there, you tried to put it out of your mind, so you can go to sleep. And during the day, it's always in the back of your mind.  

It's always there. 

Sometimes we don't even stop to notice the holidays are upon us, or a birthday or an anniversary.  Maybe you missed it.  You realize, "Oh, geez, I just totally forgot about that." For us, it's the same struggle, New Year, Same Struggle. We still have to give meds, we still have to do toileting, we still have to change bedding, we still have to make food, we still have to talk to nurses, we still slip into the bathroom and cry or, or run out to the car and close the doors and just scream. 

We're still sacrificing. 

We're still worrying. 

We're still praying.

And, we're still wondering if all the efforts are enough. So how do we manage this? What is the plan? 

Well, first of all, let me tell you, you're not alone. Most people going through this in their life journey going through the same thing you are or have gone through the same thing that you're going through. So it's not just you, it's very common.  We need to realize that we're only one person and that we're all human. That means we have limitations. We have a finite amount of energy to give. 

Second, we need to keep a healthy perspective about the holidays and kid's birthdays and all the graduations and all the potlucks and all the other special events that are going to come and go.  We need to give ourselves permission to just let them come and go.  Those around us will understand.  They will! There will be more of these later for you to enjoy and participate in. 

Third, we need to stick to our routines, both day and night so we can stay on track. Every caregiver needs to have a daytime and then a separate nighttime routine. Not only do these routines help us as caregivers, helps us stay on track not to forget anything, but they also help our loved ones be comfortable as they know what to expect each day and night. And even when they begin to forget that there's a sense that there is some order that things are under control. 

Fourth, it's okay to talk to your loved one about these events, the holidays, birthdays, they want to participate in them, even if it's just knowing about them and thinking about them. Often the mention of these things brings back wonderful stroll down memory lane, where your loved one had a wonderful experience. And it's good to let them relive those wonderful memories. Someone shared with me, "I feel conflicted when someone asks to come over and drop off a present for my loved ones birthday or Christmas or whatever. I want them to have some time with him or her. But there's this whole COVID thing going on. And quite frankly, and to be brutally honest, I'm not up to it. I'm not up to company.  What do I do?" I suggest to my patients families to let their conscience be their guide. If they want to allow certain people in to see your loved one, then just take precautions like masks and social distancing. If you're really paranoid, wear gloves.  It really brightens up your loved ones day to have those visitors even if they're not very responsive, or obviously responsive, they could still hear and they're smiling, if not on the outside, certainly on the inside.

 "But the house is a mess and I don't have time to or the gumption to clean it."  Well, then get some help. Seriously, get some help!. You can call your hospice agency and get a volunteer over to help if need be. You should have a helper through this anyway. And if you don't, get one TODAY!  Nobody should have to go through all of this alone. The holidays, and other important events are traditionally times when we gather together and we re engage one another. Don't take this blessing away from your loved one or your friends and your family.

So New Year, same old struggles. Truer words were never spoken. 

But there is hope. Realize that you're only one person that you're human, you can only do so much even with help. Next, give yourself permission to miss the big things as a task at hand is much more important. And those big things will be around next year. Anyway. If you incorporate some of those things into your journey right now, then do so. Otherwise, just LET IT GO! Stay with your routines stay organized. Keep your eyes on the prize as the kids say, don't live in a bubble. If your loved one wants to be involved in these things and released know about them, birthdays and graduations and special events. don't exclude these things from your conversations with your loved one, set up a zoom meeting or other forms of interaction for them. It's comforting for them to participate even in this little way of doing so. make the best of this time with your loved one exclusive of anything else going on in your world. This is a very special, intimate quality time, a time that you'll never have again in this with this person. Make the best use of this time with him or her. You will remember what a blessing this was for the rest of your life. 

You know, we really enjoy hearing from you. And we look forward to your comments and questions and ideas. Please send those to www.livingwithhospice.info ,all one word, and we may address your question or comment in an upcoming episode. As always, it's an honor to spend this time with you. If you enjoyed our podcast, please share it with others. Until next time, this is Mitch Ware for LWH.  

Have a blessed day!!