Is this roller coaster exhausting to everyone?

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shedampo Asked October 2017

Is this roller coaster exhausting to everyone?

My mom is 87, metastatic breast cancer to her bones. (breast 99, bone 03) she was supposed to be dead several times according to the doctors and has outlived every prediction. She is a force to be reckoned with with, and has a will to live like I have never seen. However, she has been at home on hospice for more than any patient ever! She has declined quite a bit and several times we thought her slip was leading to the end, only to have her bounce back, not quite to where she was but she somehow clings on to life. Her pain is excrutiating but she won't follow the doctors suggestions and when she does she complains about the meds and stops taking them, and then complains again. She has had a bad week, (again), but I'm concerned now that she is getting really confused and not remembering me even being there, or other small things. She is in extrememe pain everywhere, complaining about pain in her lungs but couldn't elaborate. She eats but very little. Part of me wants to think this time she may be making the slip to the end, and the other part says, don't worry cause tomorrow or soon she will be yelling at me again, and feisty (that's her nature and by yelling, she doesn't actually yell at me, she's just feisty and ornary).

End of Life End of Life Signs

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score 2 · Answer 1

I agree with most answers. it is so tiring, lonely and sad all at once. I have been doing double duty with both my 92 year old parents for two years. dad just died in my arms thrusday the 5th. I am heart broken as I was daddys little girl, but a part of me actually felt relief that I would possibly have time to breath with just one. its very stressful to be a caregiver to say the least.......

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score 1 · Answer 2

Yes, the roller coaster is exhausting, both physically and mentally. My mom, like yours, had a number of "this is coming to an end" only to have her bounce back again and again. Her sister did the same thing. I put my mom on hospice and she passed a week to the day later. When she was finally gone, we were alone in her apartment. I went to check on her and didn't hear her labored breathing. I went in and realized she was gone. But I stood there for quite a while, looking at her, to finally accept that she was gone. I kept expecting her to start breathing again. I spent 15 years as her caregiver and did everything I could to make her life as good as possible. She'd had so many ups and downs on that roller coaster, it took a while to sink in it was really over. But I was at peace - I knew I had done everything I could for my mom while she was here. I hope you can find that same peace when the time comes.

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score 0 · Answer 3

It does, I go see mom everyday but I have to, need to. I'll take this exhaustion for the pain I know is coming when I can't see her or talk to her everyday.

Take time for you.

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score 2 · Answer 4

Yes, I believe it is a common experience.

The stress and worry over the constant but undefined pain was the hardest for me. It is my nature to want to prevent and cure pain. This was not possible.

Hospice had Mom in their inpatient care facility for 4 days...to get the upper hand on her pain, and set her up with subcutaneous admin. This was an automatic system. What a wonderful thing this was for Mom. Look into it!

Try to take some time for yourself, somehow. This is not going to get easier!

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score 2 · Answer 5

I'm so sorry. Yes, it's exhausting! I agree about asking for maybe inpatient hospice. Also, is she on IV pain meds? Maybe it's time for that, if she's not already on them. The thing with pain management is that you have to stay ahead of it. If she stops taking meds, it can be very hard to catch up. My FIL doesn't like to take his pain meds because he's afraid of becoming addicted to them, but at this point, he doesn't have much choice. Take pain meds, or be in pain. He doesn't understand it cognitively either, so we just give him the meds, end of story. I don't know if you can do that with your mom, though - my FIL is pretty compliant if we press the issue, but if your mom is refusing meds flat out, that's a different story. (Hence, my question about IV meds.)

Again, I'm sorry you're going through this. It's rough. Vent here anytime, and I hope you can get some respite, if only for a few hours!

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score 2 · Answer 6

Hospice should help decide if inpatient hospice would be appropriate at this time. They might suggest a short inpatient hospice stay for respite care or to achieve better pain control.

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score 5 · Answer 7

Are you using hospice volunteers for respite? Ask them if this is available. Then you can get out of the house for a couple hours.

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score 4 · Answer 8

Yes, the EOL experience is exhausting for most people involved. Your mother's sounds extraordinary, sadly, for everyone involved.

You need to take some breaks, yourself. This won't last forever, it will just feel like it. Feel free to come here to vent. No judgment.

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Is this roller coaster exhausting to everyone?

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