How Can You Go on Living While Someone Is Dying?

My mom started hospice care about three weeks ago. Although I’ve known this was coming for quite some time, it was still upsetting to hear that her in-home healthcare nurse had suggested it to my dad. I knew she would be approved immediately upon an evaluation. During my visits over the last several months, I’ve watched her continue to decline and lose weight. Still, it was hard to wrap my head around.

As soon as my dad told me she was being evaluated for hospice, I went on the website to get more information. It said that people who are approved for hospice are generally expected to have six months or less to live. Six months?! Something about that timeline sent me spiraling out of control. I knew this was coming eventually, but six months? Six months is nothing! I typically go home to visit my mom every three months, so in six months I would have visited her twice. Does that mean I’m only going to see my mom two more times before she dies? Two more visits and then that’s it? She will no longer be there for me to visit?

I was freaking out. While I know that six months is just a general guideline to qualify someone for hospice care, I couldn’t stop thinking about that timeline. And while I know that hospice care doesn’t necessarily mean anything, at the same time it means everything. It’s not a definitive end date, but it means we’re heading in that direction. By the “less than six months” standard, my mom could be gone before her next birthday. She could be gone before Christmas. Or even Thanksgiving. How can that even be possible? What am I even supposed to do with that information?

We’ve been on this long, dark road for over nine years now. I understand how this works. My mom will never improve. She will never get better. She will eventually die from Alzheimer’s. Still, hearing the word “hospice” just makes it all so real. On the tough days and in the tough moments, when you’re sitting in the muck of it all, you just want it to be over. But now that I can see the end of the road, I want to stop and go back. Relief from Alzheimer’s only comes in the form of death. And death is final. You only get one mom and she only gets one life. When she’s gone, she’s gone for good. And I’m not ready to say goodbye.

I also understand how hospice works. It doesn’t necessarily mean you have merely days or weeks to live. I’ve known people to live on hospice for a year or more. Hospice means more help for my dad. It means more comfort for my mom. It means support for all of us. And hopefully, it means a peaceful ending to this complicated journey.

But as much as I understand all of that, I don’t. It’s hard to process it all. How are we here already? Nine years on this journey suddenly seems so short. How can we already be talking about the end? How do you even prepare for it? You would think that after nine years, I would be somewhat prepared, but I’m not. Not in the least. I don’t know what to do with myself. I don’t know how to go on living my life while my mom is back home dying.

People have said that I need to try to continue living my life as normally as possible. But how? How can you just go on living your normal life while someone you love is dying? What does “normal” even mean? My life hasn’t been normal for the last several years. And ever since I moved to Florida, I feel as though I’m just living from one trip home to the next. I don’t really have a normal routine and I definitely still have my life on hold, waiting to see what happens back home. How is that going to suddenly change now that my mom is on hospice? If anything, it’s only getting worse. My life is only more on hold.

I don’t want to plan anything too far ahead in the future. I can’t even begin to think about what I’ll be doing next month, let alone three or four months from now. Next year? Forget about it! I’m not there yet. I don’t even want to think about next year whatsoever because by then, my mom will most likely not be here. I’m not ready to start thinking about a life and a world without her in it. Just the thought of it brings tears to my eyes. I’m not ready.

How am I supposed to just go on living and planning and scheduling like there’s nothing wrong? Like my mom isn’t dying? Like my time with her isn’t limited? Why is that even what I’m supposed to do? Why should I pretend like everything is normal when it’s clearly not?

Maybe that’s the right thing for some people to do, but that’s not how I’m wired. Since my mom started hospice, my biggest fear is that I’ll regret not having spent enough time with her. I’ve spent a ton of time with her over the last few years, before I moved away, but I don’t want to regret not going home enough to see her, especially now. If that means putting my life on hold, then so be it. That’s what I’m going to do. This is the single most important thing happening in my life right now and it’s one of the biggest things that will ever happen in my life period. This is my priority.

Well-meaning people say that you should try to keep living your normal life, but I just can’t. I can’t do it. I think that’s ok. I have to do what’s best for me and only I know what that is. I don’t want to wish I had gone home for one more visit. I don’t want to wish I had sung to her one more time or read her one more book. I don’t want to wish I had spent more time just sitting with her and holding her hand. I don’t want to regret that I just carried on living my normal life, completely ignoring the fact that my mom’s time in this world was running out.

It could be six months. It could be less. It could be more. I don’t know what the future holds, but I do know that I’ll be there showing her love every step of the way. And I know that I’ll never regret it.

 

Mom and Me Smiling
I love you, Mom

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