I'm Authorizing Mom Into Palliative Care Tomorrow Morning

Miscellaneous and Personal Stuff I Must Share
1

My mother isn’t doing well. At all. About 10 years ago, she was diagnosed with CREST Syndrome, which is an autoimmune disease related to lupus. Various things have gone wrong with her in the last decade…lung damage and kidney damage (dialysis required) have been the worst. About three weeks ago, she went into the hospital with an infection, and it hasn’t really responded to the antibiotics. Her dialysis has become almost impossible to do…it keeps stopping up and they’ve had her hooked from her arm, from her neck and from a central line. In none of those sites have they been able to keep it going. Her blood pressure is consistently low, and they have had to put her on a respirator. In the last three weeks, she’s just been getting weaker and weaker. The doctor said today that she’s becoming overwhelmed and just can’t keep everything going in the manner she needs it to keep going to get better.

I’ve been on the phone most of the afternoon and evening now, with the doctor, with his nurse-practitioner, with my aunt, with my brother (who is co-POA with me). We’ve decided that continuing to aggressively treat her problems is only weakening her further, causing her pain and fear and stress. Her doctor thinks that even WITH continued aggressive care, her prognosis is neither positive nor long.

My brother and I (and our youngest aunt, Mom’s closest sibling) are agreed that it’s time to stop making her suffer more for the slim possibility that she can spend the rest of her life not able to walk, use her hands, or be off of dialysis. Tomorrow morning, I’m going to make a phone consent to the ICU to give her more effective painkillers, extubate her, remove the dialysis machine (the last-ditch effort was Continuous, and it’s just not effective) and move her to the palliative care unit. I live in Lancaster, she is in Altoona (almost 200 miles away). My brother and I have already said our goodbyes to her (we were both up this past weekend to visit), because we’ve been pretty sure this point was coming for the past week and a half.

I don’t know how long she has without the support of the dialysis or the respirator. She could go within an hour of removing everything or she could go on for several more days (I almost typed “weeks” but without dialysis it won’t be that long). All I have left is bereavement leave, or I would be down there tomorrow. I can’t take that until she goes.

I know this is the only right thing to do…she hates and fears the respirator. You can see that in her eyes. She’s expressed a wish not to be on life support to several of her sisters, but she didn’t make out a living will, so it’s on my brother and me. It’s a hell of a decision to have to make…I wish I didn’t have to.

I’m so glad to have supervenusfreak for support…even if I can keep it together, at least I know he’s there for me if I can’t. All the details that will have to be taken care of keep racing through my mind…the funeral, the funeral home, confirming her crypt, the house, her creditors, her car, her dog, what do I do with all the stuff IN the house? I’m the executor of her will, and I’ve never BEEN an executor for anyone’s will before, even as simple as hers is. I’ve never been a Power of Attorney before, and I’m dealing with that as an on-the-job training kind of thing right now. I probably SHOULD be falling to pieces, but I’m managing to…not prevent that, but rather defer it. I hope that doesn’t make it fall like a ton of bricks when it does come.

It’s going to be a hell of a week. I don’t even want to think about it.

2

I wish you strength in the coming weeks. Can she communicate with you and let her wishes be known? Even answering Yes or No questions would give you direction and peace of mind.

StG

3

I know how you feel; in 2008, my mom went from seemingly healthy to being diagnosed with stage IV lung cancer, and then died in a matter of months while receiving palliative chemotherapy. It’s not easy to go through watching a parent die, especially when they’re suffering. I just hope that, for your sake and hers, she goes quickly to reduce her suffering. After my mom’s death, there was a lot of paperwork for all of us, and a lot of work for cleaning out her house. It’s going to be a tough slog for a while, especially if you don’t plan on selling the house as soon as it’s cleaned out. Do what you can to make yourself an organized list of what needs to be done, and tackle it a piece at a time. As for the dog, see if one of your mom’s neighbors is interested in keeping the dog if neither you or your brother can take the dog.

Don’t feel guilty for anything that is happening, and work on taking care of yourself through this process. I remember that I forgot to take care of myself while I was taking care of my mom, and it did not help anyone for me to do so.

4

We put my mother into hospice when she reached a point that she simply could not heal from pneumonia. Our circumstances were different, but yes, it is a hard decision to make.

None of us regret doing it.

My mother passed away peacefully, without pain. I was able to be there with her when she died. I was holding her hand. It was… not a pleasant experience but one of the more profoundly moving ones of my life.

While running around to attend to things don’t forget to take care of yourself. You need to eat. You need to rest. If someone offers help take it.

You will get through this.

You will be sad.

Keep focused on what is best for your mother - making her final days as easy as possible (which is not easy at all!) is the last gift you can give her.

5

Oh, JayJay, I’m so sorry! I took care of my Mom 22 years ago when she was dying of lung cancer. She also had congestive heart failure. For some reason, it became necessary for her to get a couple of blood transfusions a week (they never did figure out where the blood was going!) After some time, she became too weak to sit up for the drive to the hospital for her transfusions. Her doctor told her she could always go in an ambulance, and she asked the doctor what would happen if she stopped getting the transfusions. The doctor said her heart would work harder and harder to distribute what blood there was, and within a couple of weeks, she would go into cardiac arrest. She already had a DNR order and a No Heroic Measures order. She decided to stop the transfusions. Less than a week later, she called me into the living room (where her hospital bed was) and told me she couldn’t breathe. I held her hand while she died. :frowning:
It helped me to know that it was her own choice, and certainly hope she took comfort from me being there with her. (Jesus, now I’m crying!)

Please let supervenusfreak do all that he can! Don’t be afraid to just lay your head on his chest and cry, if that’s what you need. And please know you have friends here, who will be sending you all the good thoughts and wishes for peace that we can! You are doing the right thing, and you’re a wonderful man, and a wonderful son!

6

Jeez, jayjay, that’s rough, and knowing it’s the right thing to do doesn’t make it any less overwhelming.

You’ve seen the fear in her eyes, so it sounds like you know what she wants. Good luck with that phone call tomorrow. I have a feeling you’ll hold up for as long as you need to.

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Wishing you and your loved ones peace and strength during this difficult time.

8

Strength and peace to you and yours JayJay. We’re here for you.

9

Jayjay, I don’t know what to say, except that supervenusfreak and you are in my thoughts. If there’s anything either of you need, please let me know.

10

{{{jayjay}}}

Can you not speak to your boss and get unpaid leave?

11

Thanks, everyone. I appreciate the thoughts and prayers.

Quartz, I’m going to need to talk to my boss this morning anyway to call off so I can be here for them to call for consent. I’ll talk to her about it then. My brother and I pretty much said our goodbyes to her this past weekend, though. And her siblings are there to be with her.

There’s just so much to DO and figure out!

12

Look in the Family and Medical Leave Act - it’s an unpaid leave, but since you know mom isn’t going to last more than a week without dialysis you can give them a pretty firm time frame, then segue into bereavement leave. Talk to your employer - you are obviously a Power of Attorney and Executor of the Will, which is more responsibility than if you weren’t. In the past, I’ve managed to get good results by going in and explaining the situation.

Of course, your mileage may vary, and I don’t know if you can afford an unpaid week off work.

Good luck, and again so sorry to hear about this.

13

Just read this now, and am sending supportive thoughts your way, and praying too.

It sounds like you’re doing everything the best way. I know that doesn’t make any of it easier.

And like BaneSidhe said, we’re here for you.

14

I’m sorry to hear this, jayjay. I too know what you are going through. I was with my father when he died (like norine’s mom) 22 years ago. He had been on dialysis too, so I’m familiar with that as well. I’ll be thinking of you and offering prayers for you as you face this difficult time. Ask supervenusfreak to check in here for you if you don’t feel up to it, will you? God bless.

15

jayjay, I’m so sorry to hear about this.

My BIL’s mom went off dialysis and into hospice a few months ago. She lived for a couple of weeks, which surprised everyone, but it sounds like her general health was a little better than your mom’s. It was the right decision for her, and it sounds like you’ve made the right decision for your mom.

I’ll echo other posters and say take care of yourself. Eat the best you can, cry when you want to, and try not to push yourself too hard. Be gentle with yourself and depend on supervenusfreak as much as you can.

I’m glad you and your brother are on the same page. That would have made it so much harder.

16

I’m really very sorry to hear this. I hope for peace and comfort for all involved

17

Thank you again, everyone. I gave the formal consent a couple hours ago and just talked to my aunt. Mom is breathing on her own without the respirator, is conscious (her eyes are open and tracking), but non-communicative at the moment. That may be the morphine, though…she could just be totally out of it. They’re going to move her from ICU to the palliative wing soon. From my aunt’s description, she’s very bloated from the lack of dialysis. I’m not sure how long she can survive without that.

Now it’s a waiting game.

18

I’ve been there and I don’t know what to say. Other than you are doing the best you can and my prayers are with you.

19

Wishing you and your mother all the best, jayjay.

20

I’m so sorry jayjay. I’ll keep both your mom and you in my prayers.