My 94 yr old mother is on hospice for over a year for end stage congestive heart failure. During this time, she has been on 40 mgs of lasix and 20 mgs of metazolone daily. The metazolone is only on Mon Wed and Fri. For the past year, when her blood pressure starts to plummet, the nurses will take her off the water pills slowly and slowly her b/p will come up to near normal. Right now, her b/p is 80/56. So I except she will come off the water pills soon. But then she fills up with edema. It takes a few weeks for this to happen, and then they will put her on water pills again. This has happened at least four times within the last year. She is also at the end of her battery life in her pacemaker. She does not want to get a new one. But the ups and downs of the b/p is taking a toll. How long will this continue? I hate to see her fill with fluid again. It is so debilitating.
She died before she should've. She died in the hospital . . not in her home where she wanted to. She died leaving me with a mess.
Whatever you're going through , this elderly parent thing sucks. Sometimes it doesn't. But it seems most of the time it does from the stories I read or know about through friends.
My mom's CHF seemed to only last a year. In some ways . .. her quick demise (and a year is quick for 89 years) . . . was a blessing for me and my husband. It's not what I wanted. But it is what is was. Sucks. Doesn't matter how or what you do . .it all sucks.
Suck it up. "Gettin old ain't for sissy's" Do what you're heart tells you. It's not going to be pretty whatever way it ends up. But it will end - at some point.
Perhaps I should be fortunate for my mom's quick out. It still sucked.
Sorry for being so forward.
Take good care - of yourself especially
and going to bathroom one weekend, mid-week she couldn’t get out of bed, inserted catheter on Wednesday, slept 20+ hours a day for next two days and she passed on Saturday.
However, I’m confused about the pacemaker thing. My brother passed from CHF two years ago. When he agreed to hospice, they discontinued his maintenance drugs and deprogrammed his defibrillator/pacemaker combo. I watched as they did it. Is hospice saying you should replace battery or is your mom concerned? I know different states may do things differently but in MD, once patients sign forms all artificial means and maintenance drugs are discontinued. I pray your mom passes peacefully.
But I'm not sure, as I remember it, that it is quite so horrible for the person who is experiencing it. The main symptom - is this so with your mother? - is extreme fatigue.
If in spite of everything you can ensure that she is not frightened, not in pain, and as far as possible not depressed and frustrated by her lack of energy, you will be doing well. Assuming that neither you nor your mother like the idea of rousting out a couple of cardiologists, banging their heads together, and hoping they'll come up with better, smoother, more orderly management of her diuretics, I should try to focus on how she is feeling in the here-and-now. As long as she's okay, then you must try to be okay.
I should also try not to worry about her pacemaker's battery - they don't just conk out, all of a sudden, even when you're long past the "change by" date. What is the pacemaker actually doing for her? Does it have a defibrillator built-in?
Hospice was so good before the virus outbreak. Now we only get one nurse a week and her cna once a week. But if we needed them more, they would come. I help her manage, but I have to be careful as I am treating for cancer. I have non Hodgkin’s lymphoma. Mom doesn’t know it though. I tell her I’m treating for 2 auto-immune diseases and she believes me. I actually have the auto-immune diseases too and treat with immuno therapy for them.
I expect the hospice doctor may take her off the water pills soon because of her low b/p. But then she will blow-up with more edema. It’s a roller coaster ride.
Sounds like you're in a similar situation with your mom. At this point I would just honor her wishes about the pace maker(does it really make sense at this point anyway?) and make sure that she is as comfortable as possible. Best wishes in the days ahead.
W/O replacing the battery on the PM. she will not last long. An elderly woman I knew kept on top of that UNTIL she was in end stage heart failure--and she refused to replace the battery. She was done. Died quietly a couple of days after the battery was totally discharged.
At some point, you need to ask yourself exactly WHAT you want for mom, and what she wants for herself. Living for the sake of being alive--with no QOL is a very personal thing.
Keeping her comfortable with the water pills is one thing. Replacing a pacemaker battery to buy a few more months is another.
My dad was on hospice for CHF for about 6 months when he passed. He had both leg edema and was on an oxygen concentrator. He just got weaker and weaker, His last EF, from an echocardiogram done about 4 months before he died, was about 30%.
Father in law had same issues, in AL with full time private caregivers, had an EF of 13% shortly before he passed away.
So depending on the EF, could be months to weeks. When the pacemaker battery dies, that may be the end as well.
She still lives in her own home. I visit daily and do things for her. She is still mobile, although she’s becoming more of a fall risk. She told me the other day that when the time comes to send her to the hospice facility, to send her there. She said she will know when that is. I’ve tried to get her help within the home, but she only lasts a few days and them she lets them go. She misses her privacy she tells me. I’ve been caring for her for over 8 yrs. She’s been fairly healthy except she is almost blind. It is only this past year that she’s been on hospice and more is required of me. But I am not well either. So I have to be careful. (Cancer of non Hodgkin’s lymphoma - a blood cancer). I just finished 6 months of chemo.