17 weird things that happen while you’re caring for a dying parent
Well, here it is. After months or years or a lifetime of fighting for this thing we call life, your parent has just informed you that they accepted hospice care.
Whatever the facts of your relationship may be, you know that it’s time to stuff your feelings into an inner pocket that will surely become a stomach ulcer and care for them — but you have no idea what else to expect.
After my recent experience with my mom choosing in-home hospice care, I’ve collected the following weird learnings that you can probably expect to happen. However, a warning: the process of coordinating sufficient care and grieving is unique to every person, which is just really inconvenient if you ask me.
The first time you lay eyes on your dying parent, your mind will go blank and your body will go slack. It’s called shock and it’s natural. Although the news of this life shattering new normal was a slap in the face, your reflexes will grind to a halt once it becomes a reality.
So keep your first caring gestures simple. My mother always felt her best when she pampered herself, so I found some cleansing wipes and gave her a mini-facial. Find a small way to show you care to get things rolling.
It may be easier to go through this stage if you started discussing what they wanted before they went into hospice. The “Five Wishes” framework is a great way to have this conversation and is a strategy I wish I had before going through this. If your dying parent still has their cognitive senses, I’d suggest downloading the resources on the Five Wishes website and working through them.
Ask the hard questions before it becomes impossible to receive an answer. That moment will come sooner than you think.
Now that your reflexes are back, you’ll soon encounter this very new and exhilarating game. Don’t worry, there’s really only one rule: whenever a new decision needs to be made, ask yourself: “Will I regret this decision later or is there another option that I will regret less?” Congratulations, you’re the loser — because you’ll never really know which decision was the right one.
Should I stay by her side while even while she’s just sleeping for many hours? What if she tells me to leave? Should I just leave Spotify on repeat in her room so it doesn’t sound so bleak? Is it enough? Is it OK to go to a yoga class for a while? Do I let her use the bathroom unattended? Can I take her unused bottle of shampoo or makeup to use? How much should I let her try to walk on her own? Do I force her to eat? Should I maintain a healthy mix of things to offer her to eat even though she doesn’t care? Should I think she doesn’t care or does she want to make me think she doesn’t care? Is that an actual question? Is this real life?
As you can see, it’s not just big decisions but extremely small ones that suddenly take on an overwhelmingly massive amount of significance. The only thing you can do is figure out which might leave you with some sense of regret and balance it with what you think they would have wanted you to do. Make peace with never being sure.
I coined this term to describe what happens when you have to associate with family members that you have not needed nor wanted to talk to in a while. They will explain things in a way that will reveal an amazingly low esteem of your self-sufficiency, like describing in explicit detail all the steps of doing laundry or reloading the dishwasher after you’ve already loaded it.
Exercise some empathy by remembering that they think of you as the last time they saw or knew you. They don’t think of you as a realized human being but as a tiny child or stubborn teenager or chaotic young adult. Take heart: they know not what they do.
Breathe through these encounters, don’t show your cards, and vent to a friend instead of exploding with rage. If you do explode, apologize quickly. It’s ok to not want to hug them. It’s OK to force them to hug you. It’s OK to put aside the past for awhile and cry together. If you make small concessions now, you may thank yourself later as you navigate other issues with them, like convincing them not to order dinner from the same Chinese restaurant for the fifth time in a row.
You’ve probably already heard that this will happen or maybe you’ve even done it to other grievers in the past. I won’t waste time explaining just what kinds of absolutely positively wrong and unnecessary things you will hear, even from your closest friends. But the best advice I received is to preempt these interactions with your preferences before they even start talking.
When a friend approaches you with downcast eyes, shoot first and ask questions later. State exactly what you’re looking for and you’ll be amazed at how quickly they’ll rise to the occasion. This is harder to do with emails or sympathy cards but at least it will decrease the ratio of bad talks to good ones.
The real kicker is when you yourself are the one with no tact or nuance. One time when my mom was being particularly ornery and refused to eat any food for no good reason, I spat out a response, “OK, it’s your funeral!” Thankfully, we laughed. I still felt guilty about it. Still do.
If this happens, it’s a sign you need a break. Tap out as quickly as you can and watch an episode of The Office or whatever. Don’t worry, one day you will find humor in these moments and write a Medium article about it.
Yeah so speaking of ornery, be prepared for your parent doing extremely irrational things and being in a terrible mood. It makes sense when you think about it, but in the moment you will have no emotional bandwidth to rationalize the situation and feel like a teenager again.
For instance, my mom had a ring that she wore everyday. It held a lot of significance to me. So when she finally did the act of taking it off and giving it to me, I expected some sort of lovely moment. Instead, she took it off and said, “Here, have this.”
THANKS, MOM.
These are the moments where the darkest resentments you may harbor from an imperfect childhood will come flooding over you. “You should be grateful I’m even here,” you’ll think, along with other very toxic and unflattering opinions.
If you can prepare to have a therapist to call or start a Talkspace account — do it. Even if you’ve been in therapy for a decade, make sure resources for your mental health are firmly within reach and particularly for these moments. This will help ease the additional flood of self-loathing. Start building your levees as soon as you can.
OK, this one is if you get in-home hospice care. The service will bring you everything you need: portable commode, reams upon reams of disposable underwear, bouquets of pink oral swabs, and, most importantly, an adjustable bed.
In the early stage, your parent will constantly adjust the bed and who can blame ’em — dying must be uncomfortable. They’ll put the bottom part up, and down, and up again. Then they’ll put the top part up, then down, then half way up, then down, then up again. Then they’ll try to get out of bed while both parts of the bed are up, sending you into a frenzied panic, but that’s a different story. Your parent should be able to do whatever the hell they want — they’re dying. Let them live a little (literally).
Just make sure to obtain some WD-40 so you can grease the gears on the bed to stop the incessant squeaking. That way the whole ordeal won’t become your personal and somehow more morbid version of “The Tell-Tale Heart.”
You may expect support from your besties and your community — and boy will they ever support you to the point of tears many, many times — but the weirdest thing will happen where old coworkers or random neighbors will suddenly PayPal you $100 or text you at 4:30 a.m.
It’s not just who will reach out, but when.
Like just after you had to call the paramedics in the middle of the night to pick your mom up off of the floor because she will not stop falling out of bed because she thinks she can still walk and keeps trying to jump the guardrails so she can go to the bathroom on her own even though you’ve explained to her a thousand times to let you know when she needs to go and when you tried to pick her up you couldn’t and so two very gentlemanly EMTs ask you to locate a blanket to position under her and then placed her back on the bed but then you realized that the whole point was that she needed to go to the bathroom and you nearly collapse from exhaustion over the thought of coordinating that.
Ping! A notification from someone you worked with five years ago and haven’t talked to since sending you a message of support.
You will be speechless with appreciation.
Exes will think it is OK to reach out. It will leave you gobsmacked and I have no great advice on how to handle it. In the weeks after your parent’s passing, you may be tempted to interpret these communications as invitations to make some unwise choices. But they are your choices.
I do have some advice for those exes, though, in case they’re reading: I get your intentions but it’s not really helpful because we’re already dealing with one set of dramatic emotions that we don’t want to be emoting. Why would you want to conjure up the additional emotions that come with reminding us of your existence? Read an article on “emotional labor” instead of sending us a FB message, email, or (jesus christ how do you still have my number) text.
There are so. Many. Drugs. The morphine, the anti-nausea, the anti-anxiety, the various forms of said drugs. You’ll also have the fun job of deciding whether to continue to give other health maintenance type drugs. When do you exactly stop giving high blood pressure medicine, or thyroid disease meds, or supplements? Prepare for the doctor to have most advice, but not all.
You’ll feel faintly proud when you finally concoct the perfect cocktail that they’ll actually swallow and tolerate, which will also necessitate some sort of mixer. I had a lot of success by mixing various medications with Passionfruit La Croix, Vanilla Ensure, or applesauce (but obviously not all at the same time).
One note: in your care-package-of-sorts that you receive from hospice, you will get what is called a “go bag” that will need to be refrigerated. In it is the really heavy duty stuff that’s reserved for the very end. However, the when the “end” stops and the “very end” begins is hard, if not impossible, to ascertain.
Here’s my take: give doses early and often. Err on the side of more than less (within reason) when it comes to pain management options. You can always call for more. In fact, keep the pain management dialogue open and honest with your doctor or hospice nurses. They’re happy to help.
Well, it’s a big deal the first time you do it or see it happen. One of the realities of your parent’s body shutting down is they still have to pee and poop. And you’re going to have to deal with that. Like they did for you back in the day.
If that last sentence creeped you out, lean in — this is some major circle of life shit (literally). However, just as it’s a necessary and convenient aspect of child care, it will eventually become a part of the routine. Once you get used to it, any former feelings will be replaced by relief, not weirdness, because of all the things you no longer have to do (such as navigating the use — and emptying — of the portable commode).
I recommend calling them “disposable underwear” instead of “diapers.” Helps with the whole “preserving humanity” thing. And the “circle of life” thing.
Before they die, make sure your parent selects you as a “legacy contact” so that you can manage their Facebook account once they’re gone. You will have to provide Facebook with a link to the obituary or some form of documentation, so make sure to plan for that as well.
You will find it absolutely bonkers that a social media network that basically exists to perpetuate the politics of high school gossip demands the personal effects of this profoundly intimate situation, but hey, at least Facebook is preventing fake news in one actual way.
After the initial panic, you will find a routine. It’s actually boring a lot of the time, except for the tension of being in constant proximity to someone actively dying.
Slowly, you’ll start to allow yourself to play video games, watch “The Office” for the 18th time, or even do some professional work while your parent is sleeping. You may even forget, for a moment, why you are where you are. That’s not a sign of neglect, that’s a sign of self preservation. It’s totally OK.
It’s especially important to GET OUT OF THE HOUSE and maybe even HAVE SOME FUN, as impossible as this might seem right now. Consider this: what your parent rather you be doing right now?
No parent would want their child to be doing what you’re doing, and you’re doing it. You’ve earned a reward. Get a relative to cover for you, pick a night, and have a beer or 20 with your buds.
This is normal. Just remember to breathe. Remember your community of friends. Remember the role you’re playing.
(This is also why science created antidepressants. Think about asking your doctor for some ahead of time, if possible or right for you.)
I’ll never forget their names. Anna, Mary Jo, Stephanie, Damon, and Claudio became my lifelines. After this, you will have a deeper and more profound respect for nurses and hospice workers than could ever be put into words.
This will happen once you realize that they’re not just there to bathe your parent or medically monitor their slow decline, they’re there for emotional support and advice, too. Trust them and lean on them (literally, sometimes). Their impartial perspective is invaluable, if you invest in building a relationship with them.
A dying parent is the death of a lot more than just one person. And they are there to take care of the dying.
I can’t speak to burial or plot costs, but cremation is much more expensive than you’d think. Nothing will make you want to invest in end of life insurance more than unexpectedly dolling out $3k, especially if you’re a freelance-but-technically-unemployed millennial.
Urns are very much overpriced if you’re coordinating directly with the mortuary, but if the whole ordeal hasn’t been premeditated, paying for an urn along with the other services can help expedite the process of “getting it over with.” That might be worth the premium cost (it was for me).
Contrary to what most cultures and all movies perpetuate, you may not want to be there when your parent actually dies. Do not feel guilty about this, but do feel sure it is what you want as it’s part of that fun “What Would You Rather Regret” game mentioned above.
You may not want the last memory of your parent to be shadowed by what you see at the end; you may need the closure of caring for your parent until the very end. Both options are completely valid.
Learn more about watching someone die (I recommend the movie “Paddleton”), ask your friends about how they went through it, and, most importantly, talk to your dying parent about their wishes if you can (see Weird Thing #1). A decision will become clear.
If you’re caring for your parent at home, you’ll have a ton of extra drugs left over, including morphine.
The collection of unused medicine varies but in my case, I learned that after the death, they send a “spiritual counselor” to come over and take any you haven’t used after your loved one dies.
If you or a loved one battles with addiction, plan ahead.
And sad. And complicated. And real.
There are a ton of resources out there on how to understand it. I highly recommend the media/newsletter project my friend Alicia runs called “The Mourning Herald.” She also sells “Dead Mom Club” pins. A Facebook group called Modern Loss is an incredibly safe space to just feel your feelings and read about others doing the same.
Some resources out there are in pursuit of normalizing death. It’s interesting. I’ve learned a lot from The Order Of The Good Death about this movement of acceptance.
For me, the finality of death requires fear. Requires uncertainty. Requires what I can only call “the weirdness.” The purest definition of death describes it as an eventuality that is not a goal. And that is intrinsically weird, being destined to something you don’t want. I don’t know if something like that can be normalized. But that’s just me.
A few months after my mom died, a group of friends and I took my mom out for a “last hurrah.” I carried my mom (encased within a floral and vivaciously decorated ceramic urn) to a dive bar in North Hollywood, CA. We sang silly nightlife anthems to her and took shots in her honor. We planted her on a table sticky with spilled drinks and loudly demanded anyone/everyone nearby to say hi to mom throughout the night. People were weirded out, and I loved it.
And somehow, I undoubtedly knew she loved it, too. It was then that I felt finally felt something close to peace. It didn’t feel weird at all.
Did you experience any weird things while your parent was dying? Were you annoyed by my flip-flopping between the use of “died” and “passed on” above, or are you similarly torn between the two? I’d love to hear your experiences. Tweet at me or leave a comment. Let’s talk about death, baby.
17 weird things that happen while you’re caring for a dying parent
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