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My 96-year old mom has been battling CHF for a couple of years. She's been hospitalized 4 times. She lives with me and my husband and each time she starts going downhill she battles being weak, tired, coughing, sleeping, nausea, poor appetite, and I end up calling 911; then she's on to the ER, ICU, rehab, and she comes home all better with an adjustment in her medications. Her cardiologist said her heart valve is closing, but she could go on a couple more years like this. I don't want it to sound like it's all about me because it's not. It certainly can't be easy for her because she's mentally all there and has a strong will to live. In the meantime, it's so difficult for me to go through these emotional gymnastics and turmoil each time it happens. I have a busy job and It's difficult working, running a household, having a relationship with my husband so he doesn't feel neglected, and running to the hospital or rehab during this 3-4 week process. I never know if I should be planning a funeral or Christmas dinner. Can someone enlighten me as to the course of this disease, and how you cope with the ups and downs?

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JB0928, thank you for your response. It really is a roller coast ride. My mother, who was on her deathbed, is now spunky as ever. I don't expect it to last because we've been down this road several times before.

I agree that the doctors don't know any more, nor care to know about what to expect long term. I hear the doctors say all the time, "what do you expect at 96?" It's not very comforting to feel as though you've been written off.

I do hope that your mom bounces back.
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Know this is an older post but timely and thank you. My mom had a heart attack was released from hospital last Wed and went to rehab. She has a plethora of health issues along with the CHF which got worse in rehab. They were not following doctor orders as far as I could tell. I've been there for dinner every day and when I saw the food, I'd tell them take this back and give her this. They had the instructions and meds list which I reviewed. I'm not sure if they were weighing her or not every day, but when I'd arrive they'd look like oh lord there she is again. But I always tried to be pleasant just diligent.

The nurse called me yesterday b/c her bp was low and heart rate quite high and I told them send her to the specific hospital I wanted her to go and they did. The first thing the ER doc asked was how has her eating been with regards to sodium, sugar and fluids. I told them what I saw during dinner and even though I gave the rehab a list along with the doctor orders they didn't follow through properly.

Yesterday the ER doc talked about hospice and I said okay, but I won't be rushed into a decision. I felt that way when she released last week and now see how that's worked out. She actually looked very well the day before, was eating and moving around fine. I have learned much about medical care that has not been pretty and I'm not one to typically jump on how bad something is or complain but I've seen it up close myself. If she survives, she won't be going back to that rehab that's for sure. But it's not just the rehab, I notice how expendable minded doctors are toward the elderly too which ticks me off.

I know the feeling do you plan for dinner or a funeral. I know it's not funny but I got a slight chuckle to relieve a little of my stress.
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Makes3 my heart goes out to you. My mom will be 96 in a couple of weeks and has well controlled CHF. We've had periods where she's been up and down but (knock on wood) she's been fairly stable for a couple of years. I keep a close watch on her (she lives in Independent Living) with a lot of help from me. She's got a great cardiologist who is open to my suggestions. For example, he had her on a third heart med that he added after an ultrasound of her heart (which I'd refuse to do again). It slowed everything down so much, she was always tired and her BP was low, as well as her level of heartbeats per minute. When I took her back, I took the record of those measures and he took that med back off.

The only advice I have is to really take action the minute you see anything start to develop or change. That's worked well for mom and me. Hugs to you - I know exactly what you mean about how long this will continue and the emotional ups and downs we go through as caregivers. These old gals are made of iron I think!!
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Ah yes, the low sodium diet. My mother could never wrap her head around this one. Whether it was ignorance, an effort to make dad happy, or an effort to kill him - she was forever feeding him all the wrong things. A particularly bad meal would always be followed by a rough few days and extra lasix until the water came off ( did I neglect to mention daily weigh ins?). Dad had to stop driving in the last year but could always get my mom to take him to McDonald's for french fries.
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I think our answers will help you get some perspective, but (1) they're really anecdotal, and (2) each person is different, depending other issues such as personality and determination to fight as well as co-morbidity factors.

Having said that, my father first went into CHF in 2000, and has been in it a few more times since then. I don't even remember when the last time was, but it's been several years.

Somewhat to his annoyance, I monitor his health as closely as I can and if I suspect something, off we go to the ER. More recently the issue has been pulmonary rather than cardiac. He's now 97 and still fighting.

I think you could benefit from a frank discussion with your mother's cardiologist as to her specific condition. It can also help if you monitor her fluids, edema (especially ankle edema), sodium intake (keep it low so it doesn't hold fluids), and ask about cardiac specific PT and diet (if she's not already on one). If you can get her to exercise it would be even better.

I don't know enough about cardiac issues to know if a closing heart valve could be remedied or compensated for by a pacemaker or by surgery or stents, but it's a question I would ask. Her age and overall health condition would obviously be a factor in any surgery under consideration though.
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My father passed from complications due to CHF. For the first several years you wouldn't think there was anything wrong with him. This was when he was in his late 70s and early 80s. He was on lasix which he hated because being tied to a bathroom really interfered with his lifestyle - he was very active. Eventually he started playing around with his lasix which would lead to not feeling well but a dr visit would take care of it - never the ER. The dr would adjust the lasix. At 83 he ended up in the hospital/rehab for a prostate issue which lead to UTIs. Somehow these illnesses opened the door for the CHF to get a grip on him. But from there things went relatively quick. It only took a year for him to surcum. During that time I can only recall two ambulance rides to the hospital. One lead to a 3 day hospital stay and the other he went home the same day. On these two occasions and on one planned dr visit his lungs were drained. Breathing was his main problem. He always felt pressure in his chest and at times he had a very hard time getting his breath. Overall he was weak and tired easily. He was put on oxygen in his last few months which seemed to make him more comfortable but over all didn't really help - if that makes sense. He went on palliative care in early May but was switched to hospice by the end of the month. Dad died July 24th at 10:30 pm - he would have been 85 the next day. I don't really recall a lot of ups and downs - just a steady decline. I stayed as strong as I could for him. I was my daddy's little girl and nothing upset him more than to see me upset.
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I'm going to be brutally honest with you. My mom has CHF, has had a stroke and a broken hip. She's in NH, where they take far better care of her than I could at home. The catch the symptoms of pneumonia, pleural effusion and other things that might kill her far faster than I would, and of course there is always medical staff on hand to deal with the emergencies. I'm not saying that we don't think that mom is at death's door at least once a year; it's just logistically somewhat easier.
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