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My 93-year-old mother has Congestive Heart Failure. She had intestinal bleeding over the Thanksgiving holiday and was in the hospital twice. During the second visit, she decided to refuse any transfusions, and go off all medications and treatments (including those for her heart). We took her home, expecting that she would pass away within a week (I think the doctors fully expected this, too). But she didn't, and now she is in a more gradual decline. We do have Hospice care (a nurse once a week, equipment, an aide who comes help her shower). Every day seems different, and she's having a hard time emotionally as well as physically. She is almost obsessively focusing on little details as we help her, like how we are washing dishes or why the recycling isn't taken out daily. We have really excellent Home Health Care coming in for 2 hours each morning now, but after just one or two days, she is finding fault with them. On the other hand, she is brave and trying her best. As her body gets less oxygen, she is becoming more confused, has scary periods of shortness of breath; and she is almost completely incontinent. It seems like she is close to death, but not close at the same time. I truly don't know how her heart is holding out. She wants help, but she doesn't want help. My sister and I are her caretakers, and we are doing okay, but I just want to know if anyone else has been through this.

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How to cope with a more gradual decline than expected? Celebrate! Be glad for each day you have to tell her how much you love her, to say the things to her that you might say in a eulogy at her funeral. She is on hospice so take advantage of every means to keep her comfortable and out of pain.

Invite people over that she would be glad to see. Bring in a bouquet of her favorite flowers. Offer her her favorite food, and don't worry if she only eats a bite. Play music from when she was a teen and young woman.

Tell her stories from her past. Don't start with "Do you remember ..." but instead "I remember one time when ..." My own mother seldom remembered the incident but she was very pleased to hear about it.

When my mother died it was over in less than 2 days. My siblings and I were glad she did not linger. But that isn't something we get to choose. Try to make the best of the situation you find yourself in.

This must be very, very hard on everyone. Hugs to you all.
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Kicking this back up.....
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If she still has interest in eating and taking fluids it could be a while yet. I do hospice volunteering and I know how hard this is on families. It's very hard to predict how long people can hold on. I've seen patients on hospice with CHF hold on for a long time.

Have a talk with the hospice nurse. They can tell you what to look for as it gets close to the end. There are people active on this forum who worked as hospice nurses. Hopefully they will see this thread and give you more expertise than I can.
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Good question..and one with no "real" answer.
Mother had the flu right before Christmas. We really thought this was "it" she was so sick. She wasn't eating or drinking. She actually slept in her chair one night (brother forgot to check on her before he went to bed) she didn't have the strength to get up. He told her he'd get her IV fluids if she couldn't/wouldn't drink. (He's an EMT and has access to these, so she doesn't have to go to the ER for something so simple as a saline IV). She said she'd try and did begin to sip some liquids. We were ALL prepared for a Christmas time funeral...and she rallied back and was at 4 Separate Christmas parties during the holidays.
Yes, she's MUCH slower now, we expect any day that she could go. Her liver and kidneys are barely functioning, she is showing signs of dementia, but only someone close to her would notice.
This is common with her--a quick "slip" then a plateau that lasts for months and months. She's so tough, yet so weak at the same time. She's still up everyday, dressed and ready to do...nothing. She goes out twice a week and that's all she can handle. I think people just die in their own time. It is VERY stressful on us kids, but we're all ready, emotionally for that "call". She's not suffering, really, just from the indignities of aging. Luckily, she's not in pain, which was the worst part of watching daddy die. How do "we" cop with this gradual decline? We just see her as often as we can, don't tell her anything distressing and try to keep her safe and as happy as she can be. It's not about US, anyway.
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PJDFtC, one thing I had to tell myself when both my parents were in their 90's is that with each birthday they don't age one year, they age five years.... thus the decline does accelerate.
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I'm so sorry to hear about your mother. It sounds like you are doing everything you can think of to make her comfortable and honor her wishes. Have you discussed it with the Hospice workers? I'm afraid, that I don't have any experience with this type of situation. I hope others here will chime in with some input. Take care.
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