[Serious] Ask a Caregiver for a Dying Parent

[Shell B]

Hey, guys. Some of you may already know this, but my mother is currently dying from Stage 4 esophageal cancer with multiple distant metastases. I am currently her primary caregiver, which has been one of the more important experiences of my life. Doing this, I realize how many other people have to do it. I also realize that most of us spend our whole lives afraid of our parents' mortality because we know we will lose them one day. So, I thought I'd open up to people about what it's like, in case they have any questions about the process, are going through it themselves or think they will be in my position one day. I can also answer some cancer treatment questions from the perspective of a caregiver/family member.

Please bear in mind that answering these questions might be harder than I anticipated, so I'll let you know if I'm not up for it anymore.

[arewethereyet]

Being a caregiver for someone in their last stages of life has to be the hardest thing we ever find ourselves doing.

Be sure to take care of yourself along the way as it is often more taxing than we realize. Eat well, rest when you can, and be sure to take a mental break now and then.

I am sorry you are having to go through this. Though not always with him due to geography I was often the advocate for my dad in his last few months. My sister was overwhelmed and my brother was in denial of how serious things were. I have to give a ton of credit to dad's lady friend who was there with and for him to the very end. She's an amazing woman and we were lucky she was in dad's life.

[Shell B]

That's kind of you. I have been trying to rest as much as possible. It's tough because I have anxiety, which makes it so I like to stay busy because it calms me down.

It's super important for older people to have relationships for that reason.

[arewethereyet]

That's kind of you. I have been trying to rest as much as possible. It's tough because I have anxiety, which makes it so I like to stay busy because it calms me down.

It's super important for older people to have relationships for that reason.

Whatever works best for you to keep you balanced.  We all have our coping mechanisms.

[Shell B]

Yeah, this renovation is on full steam to keep me occupied when she's resting.

[brewer]

Bummer Shell, major kudos to you for taking this on, not all family members have the strength or ability.

General questions, feel free to tell me to fuck off:

How's her nutritional status being maintained?

Is she still ambulatory?

What are the best and worst parts of your day?

Do you have any other help available?

[Shell B]

Thanks, I didn't think I had the strength, but you just kind of do it.

Her nutrition is being maintained with special formula via a g-tube. It's a high-calorie brand because she can't eat any food at this point. Only after radiation has she been able to swallow water again. She will never do what she doesn't absolutely want to do, so we definitely don't get as many calories in as we'd like, but we do what we can.

Very minimally now. That's recent. She's able to use a commode in her bedroom.

The best part of my day is when I make it downstairs and see she's "okay" and spend some time with her. The worst part of the day is when I wake up and think about what's happening until I get eyes on her.

We have a visiting nurse and practitioner who come visit. My sisters used to help with getting her to appointments, but she's stopping treatment, so that won't be a thing anymore. My father helps as much as he can when he's not at work, but Mom's very cranky with him, and often will snap at him and want me anyway. My sister from Maine comes to visit every other weekend. Those are my breaks. Tibs does a few things, but not the medical and care stuff, just making sure she's okay, grabbing her drinks, supporting me, etc. ETA: Which is very significant. Tibs is super supportive.

[brewer]

Wow, that's tough, sounds like things are close to the end. This may sound a bit cold but I hope she does not linger too long. It's no good for her and hurts those that have to continue.

[Shell B]

No, she's very pragmatic and at peace. My sister is getting married next week. Mom only desires to make it that long. From there, she wants only to rest. She doesn't want to be suffering any more than we want her to. It's not cold. It's compassionate.

[SteelCurtain]

Fuck, Shell. I'm sorry things have progressed so far.

It's gotta make it more comfortable for her knowing how loved she is. I hope she's as comfortable as possible.

Dammit.