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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.

(((((((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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Carla, I appreciate the update. Can you have home health or hospice put in a catheter? That could make a world of difference for you and your mother. The last week of Mom's life, it was a struggle for us all to get her to the commode right beside her hospital bed in the living room. The catheter saved us enormously as we didn't have to swap out the sheets except for when she spilled something or I swapped the sheets because she was a bit overheated. Emptying the bag was easy. 

Or, if that's not possible, obtain ??Chux?? or the pads that are plastic with absorbent material (like a puppy pad) to place under your mom. They can be washable or throwaway. You can find them a big box stores or a large pharmacy. Those'll keep the sheets dry and save you from having to change them. You'll still have to roll your mom to remove/replace the Chux or pads though, but it'll save you a lot of work. {hug}
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Dear Carla, I feel for you. It's so hard. Bless you and peace. Carol
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A little update on Mom.

She had a good day yesterday. She was actually alert enough to watch TV for a few hours. She ate two peaches total, had no appetite for anything else. She has pain everywhere when she is turned or moved, so finally last night we got some pain meds for her and hopefully that will lessen her pain and make it easier to help her.

The worst part is she's become incontinent with urine, flooding herself every few hours without knowing it. This is why it's so important to be able to move her, so I can change the sheets and the chucks and hopefully in my wildest dreams actually get a diaper on her. She's too weak to assist in rolling on her sides to get under her, and pressing her hip or shoulder or wherever to try to turn her makes her scream in pain. Hopefully today will be better.

The good news is I do have help. My brother in law has been my knight in shining armor, staying with her so I could leave to go for meds and bringing me a hot dinner last night when I was starving but hadn't had time to make anything. Even my sister came through in a big way, helping me change Mom and the sheets yesterday and staying with Mom so I could go back to my apartment to feed my cat and pick up more stuff I needed. Mom's old housemate/caregiver has offered to help also and I will ask her to stay with Mom today so I can run out to the grocery store. Need more peaches, even if they're canned in syrup!

Mom said to me when I was changing her sheets at 5 am "you must be exhausted". Truth is, I'm holding up pretty well so far. Not without help, of course. But I feel good about doing this and that's helping me a lot.

Thanks for all your thoughts and prayers and support, all who posted!
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This is tough stuff but you’ll get through it. Stay in touch.
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So sorry. Hugs to you and Mom too.
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May God give you both, peace and comfort.
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I've been in that same recliner as you, Carla. My heart goes to you. It's a very hard sequence you're going through.

I've read on this forum a most profound thought that you are taking on the beautiful and loving task of escorting your mother in her final journey. May her journey be peaceful and pain-free. In this, your final task, may the love and support of the good people on this forum heading to you bring you comfort.
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Carla, you are a hero. Sending you many hugs and prayers.
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Carla, my thoughts will be with you and your mother, hoping for a peaceful resolution. And for what it's worth, I think the fact that you're stepping into this role after all you've been through speaks so much more highly of you and your integrity than that of anyone else in your family. I hope that thought brings you some comfort.
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Prayers Carla
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(((((((hugs))))))) Carla.
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Carla, just wishing you moments of rest and peace. Your mom is blessed to have you
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You are doing all the right things. I just want to prepare you for the very high possibility that she will pass in the 5 minutes that you are out of the room going to the bathroom or getting a cup of coffee. My grandmother did this. I was sitting right next to her bed holding her hand and dozed off for about 3  minutes. When I awoke, she was gone.

I've heard many, many others say the same thing happened to them. Please do not beat yourself up if that happens. It is just what they do....
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Know that after her time comes, YOU made a difference! Stand taller, prouder and strong. Many can not do what you are to do. She is blessed, you be blessed. Prayers and hugs sent!
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Thank you for your thoughts, everyone. Countrymouse, you're right. I couldn't sleep in bed so I sat in the recliner near Mom's hospital bed in her living room and dozed off there a little bit. Then I was right there when she woke up and asked for the bedpan at 1 am. I would rather be right there where I can hear her breathing even if I lose sleep. As you pointed out, if I went to bed, I wouldn't get any sleep anyway. Thanks.
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(((((((((((((Giant hugs)))))))))))))) CarlaB.

Put all thoughts of what you said you would never do out of your head. The real heroes in life are the previously reluctant ones.

Post often, please, if you can. Here we are.

PS - I had a reclining armchair for one or two crisis nights. Or, if you've got a folding bed or camp bed that might fit in your mother's room? It's no good trying to be strict with yourself about going to bed to sleep if your heart's in your mouth and you daren't close your eyes. Being in the room or right next to it can help.
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CarlaCB I wish you both peace.
You have great love and it shows.

Hugs Buzzy
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Carla, thoughts. Take some care of you so you CAN take care of her.
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Carla thinking of you and mom.
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Oh CarlaCB, I'm sorry you are having to bear this burden alone :(
Peace to you both.
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