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?
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.
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.
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!!
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.