Taking care of a terminally ill parent

[Smallpotatoes]

Over Thanksgiving weekend, one of my brothers and my sister-in-law checked my mother into a hospital because they noticed she was acting more and more confused.

An MRI and a CT scan showed mashes in her lungs and brain. A biopsy determined they were malignant. In early December, she did a round of radiation treatment, which left her very weak. In early January, she went to a rehab facility to regain some strength. The oncologists' plan was to let her get stronger then go to some sort of drug treatment.

A week ago, after we noticed her getting more and more confused, and that she was often wandering out of her condo, we had more bloodwork and an MRI done. There were additional spots on the brain. The doctor suggested a more targeted radiation treatment, but we ultimately decided against it because it would require her to stay still for an extended period of time and to be able to communicate any side effects she might be experiencing. In her condition, those things are not possible.

She's in hospice now, but staying home. I'm with her, making sure she takes her meds and keeping her schedule straight with visiting nurses and others (and lately, bringing her back after she wanders off) I lost my job six weeks ago, so I have a lot of time on my hands. Money-wise, between a severance package and freelance work, I'm OK for now, but I am looking for full-time work (I'm sure you're all relieved that I'm not interested in driving for Uber or Lyft) . If I were still at my job I'd probably be taking unpaid leave now. Yesterday, the hospice social worker told me that medicare could pay me for being her caregiver, albeit not much.

What frustrates me the most is the communication thing. The tumors in her brain affect speech and cognitive ability. She asks me a lot of questions and they make no sense at all to me. It's so nonsensical I can't even give you an example of a typical question. Trying to understand her is like playing charades or trying to figure out what someone who doesn't speak English is trying to ask you. I usually end up saying "I don't know" or "I don't understand," which frustrates her because it seems like I can't be bothered trying to understand. I'm really trying to be as patient as possible. Is there some way I could figure out what she's saying?

 

[Moderator1]

Bless you.

I never, ever, ever want my kids to be in that position with me. I want to live my happy, independent life and when I go, go quickly.

 

[3_Octave_Fart]

I wish the least painful outcome for your mother.
Not an easy move to make, but they will make the final journey as comfortable as possible.

 

[wicked]

You're a good man, SP. Make sure you take care of yourself, too. Sending kind thoughts your way.

 

[Azrael]

Hang in there, sp. Be as patient as you can.

Would it help her to write things out?

Sometimes speech and word retrieval and cognition decline at different rates. She might be able write what she can't speak, but that's a longshot.

Thoughts like "I'm thirsty," or "I'm hungry" should be pretty easy for you to figure out.

The rest of it . . . breathe deep and gather yourself and be patient.

 

[outofplace]

So sorry you and your family have to face this, sp. I can't even imagine. I know from what you posted that she is frustrated, but on some level I'm sure she understands you are trying to understand her.

You may be out of work at the moment, but that doesn't mean you can't reach out to the rest of the family for help and support. As wicked said, don't forget to take care of yourself, too.

 

[CD Boogie]

I'm very sorry to read of this. That must be extremely difficult to not be able to communicate. To the other extreme, you can have someone who is fully aware of what is going on. My father had COPD and was in declining health for a while. In the end stage, he said to me, "I'm sorry it's taking me so long to die," which still crushes me. In the end, I was the one who had to make the call to pull the plug, to stop all further treatment, to essentially euthanize him. About 10 minutes after I made that decision, I freaked out and asked them to resume life-saving measures, which just prolonged his body's fight to remain alive. I don't think I'll ever forgive myself for that.

I hope her pashing is peaceful. It sounds to me like you've made the right decisions.

All best.

 

[Sam Mills 51]

SP, do what you can to make her comfortable. See if there is a system of communication that can be set up - cue cards, Post-It notes, hand signals - in case standard verbal communication is too much for her.

CDB, don't be too hard on yourself. You could see him suffering. You did what you could.

It might not feel like one did enough - some still struggle with it years after the fact - but do what you can. That's all you can do. I'm sorry I don't have something more by-the-book or a technical operations manual. Too often, life doesn't work like that.

Best to all ... take care ...

 

[Smallpotatoes]

SP, do what you can to make her comfortable. See if there is a system of communication that can be set up - cue cards, Post-It notes, hand signals - in case standard verbal communication is too much for her.

CDB, don't be too hard on yourself. You could see him suffering. You did what you could.

It might not feel like one did enough - some still struggle with it years after the fact - but do what you can. That's all you can do. I'm sorry I don't have something more by-the-book or a technical operations manual. Too often, life doesn't work like that.

Best to all ... take care ...

That's an interesting idea and I'll see if it can work. Her writing isn't much better to answer Azrael's question. She gave one of my brothers a grocery list and it made no sense at all.

Thank you to everyone for your kind words.

 

[Baron Scicluna]

I'm sorry SP. Wishing your mom and you the best.

 

[tapintoamerica]

This sucks. All of it.
See if your local hospice has people on call or who can point you to answers. I would also look at the Alzheimer's ashociation website even though this, technically speaking, is cancer and not exclusively an issue of cognitive decline.
The other thing is, as others have said, to take care of yourself. You can't be an effective caregiver to others if your own mental or physical health are compromised.

 

[jlee]

You are doing an amazing thing, sp.

Also, the Uber/Lyft joke was funny. Glad to see you can still manage that kind of humor amid all this.