My very appreciated, loyal readers know my (amateur) expertise is in the areas of dementia and cancer treatments for the elderly (and even end of life care). I don’t pretend to know stuff I don’t know, and I certainly don’t claim expertise in every end of life subject.

But people are dying every day. Good, strong people who have lived wonderful lives and leave behind an impressive legacy. People are saying goodbye and mourning for loved ones every day, sometimes mourning before the person is actually gone. Sometimes stuck in a depth of misery and sadness they think they will never come out of. 

Today, somebody we love is dying, too.

End Of Life Considerations

Aunt Sophie got hit by a bus in about 1940. No end of life care. Nothing. She was dead instantly in her twenties, and she left behind a mess. She had a bad marriage, and a husband who didn’t want to raise the kids. Nanny, my grandmother, ended up raising her sister’s kids with no money, help or support from their father. Nanny was already broke trying to raise her own kids, but she did the right thing and raised her sister’s family until they were adults.

Young, vibrant Aunt Sophie never considered her own death. She left a mess.

Many people, however, have the benefit of time to prepare for their ultimate death. People who find themselves in a physical decline, while still having a sharp and clear brain, have the advantage of being able to make arrangements, make plans, make a graceful exit, no matter how undignified the disease might be.  

Palliative Care

Hospice is a spectacular organization. Specializing in end-of-life care, hospice makes it possible for the family to relinquish some of the ugly responsibilities related to taking care of someone they love. This should free up time and energy to enjoy their final days, reconcile your own feelings, and just simply move into the act of death with less stress and anxiety. 

Hospice won’t cure anybody—that’s not their mission. They focus on palliative care, helping the ill person move towards death at their own pace, using the medical and assistive devices they choose without the confines of a hospital room or the invasive treatments doctors might try to employ. They are about dignity at the end, which is what we all want.

As someone you love moves closer to the end, I beg you to call upon Hospice—they do not charge you for their services—to facilitate a gentle, kind, and loving transition to whatever comes next. 

How Do You Say Goodbye?

Having the best hospice care possible in place still won’t help you say goodbye to your loved one. For that, you are entirely on your own. 

Don’t look at me! I have no idea what words or actions will help you guide your loved one to the next path. All I know is that this journey is quite specific to each person, and will require you to adapt so that you are honoring their wishes, while being true to your own beliefs about death.

Timing When They Will Go

So, when do you make your big “Goodbye” speech to your dying loved one? Who knows! Even the hospice people can’t tell you the exact time or moment, although they are uncanny at recognizing when someone is “actively dying” and getting closer to that final breath.

I would totally listen to them.

But…they were 100% wrong about Pop when he was close to death. So, listen to your own inner voice about when the time is closing in. 

Because you can’t know exactly when the breathing will stop, you need to make sure that you are enjoying every visit to the fullest, and leaving each time with the knowledge that it’s okay if this is the last time. 

What Should Your Visits Include

Their Mayor

One of the most important things that your visit should include is attention devoted to the caregiver. No matter how much you are hurting, the person who has been doing their own version of The Job is of paramount importance. This is the person who bears witness to every painful minute, every medication, every doctor’s appointment, every indignity. Don’t overlook them in your efforts to see goodbye to the dying. 

The Consigliere

Give them a chance to vent every time you visit. Let them tell you their concerns and their struggles; Let them tell you over and over how concerned they are for their spouse, their kids, their pets; Let them unload on you, so they feel heard and respected.

Joy

While it might be important to listen to the dying share their fears and anxieties about the process, your primary function is as a distraction. You are there to help them have an hour of respite from the ugly business of dying. You are there to bring the joy and light from the outside world into their sick room. Leave your own problems at the door, Boo Boo. It’s not about you.

What Would They Really Want

Sweet Husband is a fantastic nurse. He is patient, calm and kind, and lends a strong presence to any sickroom. We have sat in the hospital together many times with different patients in the bed, and I am always comforted by his presence. 

He is the perfect visitor to the end of life care receivers. He lets them set the pace of the visit, engaging in any conversation they want to have, telling whatever stories they want to hear again, and promising the moon and the stars if that is what will give them peace.

Be like Sweet Husband: Be whatever they need you to be. Now is the time for you to be the chameleon—changing on a dime to provide them with whatever they need at the moment. I can switch from the Patti Party Personality to the Patti Funeral Procession Personality like a lightswitch, and that’s what you need to do. 

Step into the room like a blank slate, and react based upon what you find.

Having The Hard Conversations

Pop and I specialized in the hard conversations. We talked about death and dying and finances and medical issues on a regular basis years, even decades, before the information became extremely valuable. 

We weren’t normal. Most people don’t have those conversations in advance. You should have seen my siblings’ faces when Pop and I would start to talk about death like we were discussing the weather. It isn’t the norm in polite society.

It should be.

Be ready and open to having the difficult conversations no matter what your comfort level might actually be. We’ve talked about shielding your loved one from your discomfort when faced with bathing or cleaning them after an accident, and you need to master that skill right now. You need to ignore your own discomfort in favor of maintaining as much of their dignity as you can. They don’t want to be in this position, either. 

Let them talk. Let them unload decades of wisdom they thought they would have time to impart. 

Take notes. You don’t want to forget the stories they tell you from before you were even born. 

Be vulnerable. Tell them the impact they made on your life. 

Taking Care Of Yourself During This Time

You aren’t The Mayor in this situation, but you still need to safeguard your own mental and physical health so you can be the best Hero Support possible. 

Just bear in mind that your needs are secondary to those of the dying person. You can catch up on your sleep next weekend; You can reschedule your own check-up for next month; You can clean your house anytime.

Step out of your comfort zone. Step out of your comfort level with medical issues. 

Put the dying person in the forefront of your mind now, while it can benefit them on their journey.

Do You Talk About Dying?

I don’t know. Do they want to talk about it?

The salient point is that you open the conversation and see where it goes. If they shut it down immediately, you pivot to a safer topic. 

But maybe, just maybe, you’re the only one with the mental fortitude to have that difficult conversation. Maybe you are the only one they truly feel comfortable telling their deepest fears and concerns. 

Maybe you’re the only one who asked.  

Unfinished Business

So, finally, we come to a section that is about you. 

You need to say goodbye in a way that will be satisfying to you as well as them. You need to unload your feelings about them. Thank them for their place in your life. Let them know you will miss them, and that you will be okay. 

In the very wise words of my brother-in-law, “Nobody knows how to die…”

But everybody, yes everybody, wants to hear that you appreciated them in life.

Tell them you love them.

Tell them you’ll miss them.

Let them go with dignity and self-respect.

Then go catch up on your sleep. 

THANK YOU FOR READING THIS FAR

Wow! You made it! Thank you for reading about end of life care!

Hey, since you’re here! You may as well check out part 1 of my Mother-In-Law story, here, or if you’ve read that, check out part 2, here! Or maybe you want to hear more about Pop, here. Or, check out our other topics here! Either way, I appreciate you!

Please leave a COMMENT about any tips you may have!! Or comment with YOUR story! Any dementia stories? Let me know!

Please, feel free to contact me or leave a COMMENT with anything you would like to hear more about! Or reach out with any unrelated questions, comments, concerns, or random outbursts of excitement by clicking here.

Oh! And don’t forget to check out my video series by CLICKING HERE!!!