Mom is dying.

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I am doing the thing I swore up and down I'd never do, providing 24/7 care at home. She has had this undiagnosed blood cancer for the last six months or so, and then this weekend she developed a UTI and rapidly progressed to sepsis. She was taken to the ER (despite being enrolled in hospice) for IV fluids and IV antibiotics. After one day she refused further treatment, insisting on going home. The hospital would not keep her if she refused the IV treatment (since any other treatment can be given at home) so they sent her home in an ambulance, unable to walk, sit up on her own, get to the potty, or anything. She's been sleeping the better part of the last 4 days, with occasional requests for water or bedpan.



I'm the one who elected to come home with her. Somebody had to do it, and I couldn't see sitting on my hands somewhere else while my mother is actively dying. She knows I'm here, she knows it's me taking care of her, and she's peaceful and pain-free for the most part. Today I learned how to change sheets with the patient still in the bed, a patient who is 180 lbs of pretty much dead weight. I'm not complaining. I got clean dry sheets under her and she was able to sleep more comfortably then. That's all I'm here for, to make her last few days as comfortable as possible. Still haven't figured out when I can safely go to sleep though. Please wish me well and my mother a peaceful passing, thank you all.

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(((((((carla)))))) You are doing a magnificent job.
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From me, too, Carla; God bless both of you....
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Carla- My heart goes out to your. Will be praying for you and May God give you strngth and courage through this.
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Thank-you for the update. I'm so glad you mother is more comfortable - that must be a huge relief. When my MIL was dying she absolutely refused a catheter, which I think made the last few days a lot less comfortable for her.
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The hospice nurse and bath aide just left. She got a nice gentle bed bath, some barrier cream on her tailbone area, and a catheter! She is feeling so much better, sleeping in a clean dry bed with clean dry skin! I'm so happy we did this and I know she is too.

I'm exhausted. Maybe I can get a better night's sleep tonight knowing she won't need her bedding changed every few hours. What a relief! They also increased her pain meds and told me that if she's still having pain, they'll keep upgrading it until she's not in pain anymore.

Yes, I do appreciate Mom's recognition of how exhausting this must be for me. She also thanked me this morning for taking such good care of her. It really does mean something, after all....
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Carla
What a blessing you are for your mom

If there are any financial resources then please look into an agency caregiver to help you a couple of hours - ask for one who can handle the bed changes

One person can turn and change if they know how to use the cloth Chux
Reposition mom on her side to clean her bottom
Use pillows under her calves to keep her comfortable

Wish I could bring you supplies - I use a lanolin cream on mom - far better than zinc oxide which is hard to wipe off - lantiseptic available on Amazon

Please make sure you are staying hydrated - try those fruit flavored sparkling waters, and eating light snacks - yogurt, cottage cheese and those canned peaches, raisin toast and peanut butter

Hugs
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CM raises a good issue on the turning and rolling. I noticed the aides changed their methods a bit as Dad grew more and more frail. Right now, I don't even remember what they did, but they were very gentle.

The staff also used some ointments to prevent skin breakdown. I think Cerave was one. It seemed to work; despite being emaciated, Dad never did get any pressure ulcers.

Carla, how are YOU holding up now?
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CarlaB,

I don’t think I’ve ever told you this - it was a post of yours that was the very first post I read here.

Your post immediatly made me feel comforted, relieved and even a bit hopeful. I knew I found a safe place with folks that truly understood what I was going through - cause you were going through it too.

I hope that now, during this difficult time you can feel some of the same - comfort, understanding and yes, even a bit of relief and hopefulness. As well, I’m wishing both you and your mother peace as both of your journeys come to an end.

You have been an inspiration, dear CarlaB!
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I'm very touched that your mother acknowledged how much this is for you to deal with Carla, aren't you? Just a little thing, but nice she noticed. 😢

Adrenalin will keep you going for a while but it's not reliable as a plan!

With the turning and rolling, has anybody actually showed you how to do this? You may be able to lessen the discomfort with the right techniques. Do you have a slide sheet, too?

I admit I never had to do this - my mother wasn't experiencing that kind of pain, plus I had what Daughter 2 charmingly calls my 'wiry strength' to fall back on - but if need be are there neighbours you could call on, say for just five minutes at a time? Not for anything intimate, of course not, but assuming your mother is properly covered and they've washed their hands, all they'd have to do is hold her steady while you get the chucks settled.

I mean, you know how people are always saying "if there's anything we can do..."
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Yes, I'm planning to ask them today about a catheter. That would save my mother so much pain and she would be able to rest without being moved and turned so many times a day. The chucks are great but I can't really get them under her without help. They do work when I can position them right but usually I can't. The nights and early mornings are worst, when there's nobody here to help. I wish the hospice folks would come earlier in the day but they don't, unfortunately.

The other issue is that we can't get her fully clean and dry under her butt and legs, and I'm afraid her skin will break down from the constant moisture. The catheter would really help prevent that so I'm hoping the hospice folks (and Mom) will agree with that. Wish me luck!
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