Mom (93) has CHF, AFib, incontinence, and stage 3b kidney disease. Is her pacemaker keeping her going beyond the life of other body systems?

My husband also has Congestive Heart Failure. He began coughing very much last summer and his doctor has doubled his diuretics. She also has told us to limit his fluid intake, which I have done by cutting it almost in half.

Does she have a cardiologist? This is the person you need to speak with regarding the pacemaker. It’s my uneducated opinion, but if there is much fluid around her heart, it will eventually overcome what the pacemaker can do. The pacemaker doesn’t keep the heart beating, it regulates how it beats. If she hasn’t been to her cardiologist lately, can you take her just for your own peace of mind? .

No. 'Tisn't. Although if this is the sort with a defibrillator you'll want to discuss what to do about that, when the time comes, with whoever is leading her end of life care.

Having said that, new battery time is a crossroads, and a good opportunity to review her decisions if she would like to.

Before the appointment for that, if possible, ask for a strong focus on getting her oedema under control because it must be making her feel like *poo*. There are other diuretics, or it may be that her Lasix needs adjustment. It should be possible to improve things even if not to make it completely better. The reason to push for this is that it is not fair to make quality of life decisions until the maximum possible has been done to support her quality of life.

Do you happen to know what her most recent Ejection Fraction was? (measured by echocardiogram)

My family was told the pacemaker would not keep the person alive if the other organs were failing. All it was supposed to do was keep the heartbeat regular for as long as it continued to beat.
If you can get a Palliative Care consultation, it might help you a lot with health care decisions going forward.

Nymima
My mom and my MIL both died with their pacemakers. It won’t keep your mom alive.
My aunt who is on hospice for Parkinson’s had hers replaced while on hospice. Her cardio said that if the battery ran out it would be unpleasant for her. So they replaced it without incident.
Your mom certainly has a lot going on.
Hugs to you both.

Does she take any rate controlling / antiarrhythmic drugs to prevent or treat AFib episodes? There are a number of drugs that may reduce or prevent AFib episodes and the many symptoms they cause. Without a pacemaker, the dosage required to treat or prevent AFib can result in bradycardia (low heart rate too low), however a pacemaker prevents this problem.

Because she is having daily AFib episodes, it might be a good idea to ask her cardiologist (or an electrocardiologist) if a change in medications or dosages would be helpful in preventing/reducing them. Having AFib under better control may make her more comfortable even considering her many other medical issues.

It's my understanding that a pacemaker does not prolong life unless it is a implantable cardioverter defibrillator (ICD).

Best wishes to you during this difficult time.

Nymima, I don't understand this bit - your mother is supposed to be taking 60mg Lasix but at the moment she's on 40mg? How come?

Get this seen to as soon as you can. Today would be good.

Diuretics' effectiveness doesn't work on a steady sliding scale. It's more - nothing, nothing, nothing, WOAH there you go! It's critical to reach that 'watershed' dose, if you'll forgive the pun.

If your mother seems to be spending all day in the bathroom but she's still visibly awash with excess fluid, there may be other things going on such as a u.t.i., or perhaps there's a limited flow, or whatever - I'm not a doctor, I've just been through this with my own mother.

But meanwhile the amount of oxygen her blood can carry to all her vital organs is hugely compromised because of the dilution. That's why she feels so dreadful. I should get her to her doctor's office and refuse to leave until they've either addressed this or fully explained why they can't.

My mother really minded the getting up throughout the night effect, so her wise GP cunningly adapted the instructions so that she took her second at lunchtime, and that worked for a while. Later on, she was switched to a different diuretic that she took only once a day, which worked very well for her. I'm not saying that either solution would suit your mother, only that it is worth being a squeaky wheel about the problem because there *may* be better options.

A palliative care approach certainly would be the right one, and I warmly encourage you to pursue that.

It's very important to avoid the pervasive background feeling that palliative care amounts to getting the coffin ready. No such thing! It's about focusing medical attention on symptoms and addressing them, rather than treating underlying disease. No heroics, like valve replacement or aggressive therapies, but every possible measure to improve her feeling of wellbeing.

Patients who will not take their medication as prescribed...

Oh dear. What can you do.

Can you... get her to give it a trial period of x days? Perhaps tied to a promise to give her additional support getting to and from the bathroom, or pre-emptive measures such as absorbent pads for her clothing or furniture?

Shock/stun her out of it by telling her brusquely that people who ignore their doctors' instructions are idiots?

Enlist a scientifically accredited family member to sit down with her and draw her pictures of how her diuretic works, and why hers can't as long as she goes at it half-assed?

Or, if her doctor is unaware that she is doing this, rat her out at the next appointment and leave it to him/her to read the Riot Act.

Or ask him/her if we could try a different formulation or type.

I whole-heartedly second the idea of palliative care!

When my mother left her home to move into an Independent Living facility, one of the benefits was that there was a geriatrics doctor who had an office at the Assisted Living "sister" facility across the parking lot. Mom could get to her own appointments! Her former PCP, while a nice guy, was constantly referring her out to cardiology, neurology, etc, etc. Each trip required my taking a day off, lots of anxiety for mom waiting for results, lots of med changes which confused her.

The geriatrician did a review of all her meds and took her off all but her BP meds and adjusted those. He talked frankly with her about the need to use incontinence products if/when the need arose (My mother was the master of saying "oh, I couldn't possibly!"). He got her to see a geriatric psychiatrist who was able to get her to take her anxiety meds BEFORE she became anxious.

My point is that most of what ailed mom had to do with the fact that she was 89 and it wasn't going to get "cured". But the symptoms could be well managed without a lot of meds with side effects.

Finding a doctor who specializes in the care of the elderly with multiple systems gone awry might be a really good move to make.

It sounds like your mom still has a good mind so you need to do what she wants done. That's what I would do with my mom.

This is a difficult question that so many children find themselves trying to answer. When is it time to start decreasing medical treatment and just focus on maintaining a comfortable quality of life without the invasive procedures and battery changes. My question is whether your mother has said what her preferences are or what is referred to as the goals of care. What are her goals at the age of 93 with multiple medical problems? Does she want to keep living at all cost or is she saying that she is getting tired and wants to have less aggressive care? Or does she want to let nature take its course now. That is an important discussion to have with the help of her physician or with a palliative care physician who is better at these types of discussions. I do agree with many others that palliative care is the next best step, in general but I do not know what your mother wants. A battery change is relatively easy and you can always turn it off in the future, if desired. But you will have difficult questions down the road so it is better to establish a game plan now that respects her preferences.

I suggest Katy Butler's book, "Knocking on Heaven's Door". Her post stroke father was given a pacemaker on the insistence of his surgeon to treat a low resting heart rate prior to a minor surgery. It was unrelated to his neuro problems. Unfortunately it became a nightmare for her mother (primary caregiver) and herself, a long distance caregiver.

Question, what is her sodium intake? I'm talking about mg, not daily percentage. With CHF, usually restricted diet. I keep MIL about 1400 mg and she went from fluid retention and crackling in lungs to clear lungs and no swelling. She also has lasix and potassium daily. Creative cooking, fresh or frozen vegetables, fresh fruits, no salt butter, LOTS of label reading, homemade waffles instead of frozen, organic maple syrup, low sodium baking powder (I found at target) got waffles down to 35 mg, compared to 610mg for frozen. No salt chips are a great treat with a little bit of dip. Good luck, don't know if this will help.

I haven't read all the responses but I saw where you listed her meds, she should be on potassium with lasix, it strips it from your system. This could be an underlying cause of fatigue, our electrolytes keep us moving and having one that is stripped by a med can cause serious issues.

My dad has similar issues to your mom and I have had an education over the last 18 months. Trying to get doctors to look at the natural side of things can be tricky. I had all my information and when they said no, i quoted reasons for yes and asked them to help me understand why no is better. He got the natural minerals and nutrients prescribed to help him feel as good as possible.

Best luck getting her whole self treated.

If it were I, I'd be looking seriously at Eliquis. One of my newsletters has this as a do not take drug.

Nymima, essentially your mother is already receiving palliative care in that she herself has ruled out the more aggressive options. But there's no need to call a spade a spade, not if it frightens her - you can suggest a focus on symptoms, comfort care, alleviations which amount to the same thing.

Again, if it's going to frighten her and make her lose trust in you, don't push the hospice assessment. But there's nothing to stop you contacting hospice and getting their advice. You can't possibly be the first loving relative to recognise the benefits but not know how to start the conversation, and they may be able to help with the first steps.

When it comes to the battery itself, perhaps this had better be a very specific discussion about what happens if we do/what happens if we don't. I would expect you'll find there isn't that much of a hurry to make the decision, in reality - her pacemaker won't conk out as soon as the recommended replacement level comes around.

But unless that oedema is shed it's probably going to be a moot point. Remind her that her heart is weak, and she's asking it to pump - this is a guess - an extra 3, 4, 5 litres of water around her body. At the same time, because the water is in her bloodstream, her heart muscle is getting even less oxygen from her diluted blood, as are her kidneys and her brain.

Since she's very resistant to taking the higher dose, I'd push for a switch of diuretic. It's slightly sneaky, but for example she might find it much more acceptable to take 1mg of an alternative instead of her px'd 60mg Lasix.

I assume her electrolytes are checked regularly, yes?

nymima: With A-Fib and CHF, I would be concerned of a stroke risk. This happened to my late mother as she had both A-Fib and CHF and did suffer an ischemic stroke.

She has edema in lower legs which causes restrict blood vessels, which causes the disease heart to work harder.
I think even with her pacemaker her heart will give out. Plus, the fluid in her lungs doesn't sound good.
Once one system or organ shuts down the others will follow. Her circulatory system is compromise at this point. If her lungs keep filling with fluid than she won't be able to breath, therefore, causing a lack of O2 throughout her body. So no, her pacemaker will not keep going as other systems shut down. In most cases, the pacemaker just stops because the heart stops and the brain will be deprive of O2. I wouldn't be surprise if she has standing blood in the bottom parts of her heart, which in turn makes the heart work harder.

This is the best guess I can give you with what information I have.

I am sorry if I seen harsh. But I am just trying to walk you through my thought process.

I hope this helped. May God be with you.

Can I be honest the crackling is the fluid in her lungs. The pace maker is something seperate from the the congestive heart failure. The lasix that she takes the fluid down but destroys the kidneys. Diet and limiting fluid is what they prescribe and medicine to keep the fluid at bay but eventually the body simply wears out. The heart and kidneys and liver shuts down. She is 93 lived a good life. Right now use this time to be with her and find out her wishes. If she is near the end I bet there are foods she would like to have and things she wants to say. That is all you can do. And keep her comfortable.

My father just died in my arms with CHF it was painful for him. Hospice that we had was terrible. I think having the person at the hospital or facility would of been less painful all around. Physically due to the fluid retention they become hard to lift and with incontinenence they people that can lift and dress and undress. They need it meds that makes their pain not felt. They can give them pills, but they still feel it.

No no one should die like my father died. It wasn’t peaceful. I think I’m a facility they can coontrol a great deal of things.

I hope this helps you. It isn’t easy losing a parent or someone you love.

“Shes a tough bird when it comes to medication. She does take metoprolol, Eliquis, blood pressure meds and thyroid medication. She doesn’t fight the doctor with those meds.”

I was reading through all the posts and noticed the metoprolol.
Metropolol is a med that my aunt takes for her BP. She’s been on it, along with amlodipine and one other for years. I can’t remember the third one right now.
Anyway, I noticed one day on her HHC log (twice a week reading) that her pulse was running in the 50s and sometimes 40s fairly often.
I was concerned about the need for a pacemaker.
A little while later, when picking up meds from her pharmacy, a pharmacist came to the counter to explain a new med and picked up the metropolol by mistake and was explaining the reasons one takes metoprolol. When he mentioned that metoprolol slows the pulse I was glad he made the mistake. I didn’t realize that was one of its purposes.
Long story short, we began to monitor her bp/pulse each morning before her medication. It took awhile to get the right combination.
If her pulse was below 60 we give an extra amlodipine and hold the metoprolol. If it is over 60 she takes the metoprolol and only the one amlodipine.
It took awhile for this practice to adequately manage her bp as well as it was managed on the daily metoprolol. It would be in the 140s/70s or maybe even /80s in the beginning. Now it is down in the 120s/70s.
So you might ask about the metoprolol. Your mom may need it daily for its other benefits but in my aunts case, taking it three or four times a week has worked well.
My aunt doesn’t want a pacemaker. She is 92.

Nymima, my dad takes lasix and potassium as needed. If his weight goes up 2 or 3 pounds over night he takes lasix for 2 or 3 days, until his weight goes down.

His kidney function has actually improved using this method. It took 2 months and 2 amazing doctors to work this out. It is a tight wire balancing act, as you are learning. It is diuretics in general that are very hard on kidneys that are diseased.

Ask the cardiologist about a similar regimen, this gives my dad freedom to get out and about without the worry of the lasix kicking in.

He was hospitalized and had lasix bombs to get 70# of water weight off his body, that was what I believe makes this work. They did iv diuretics so it started at no water weight in the tissue.

If your mom can not get the water off, she may need a hospital stay to get all of this water off.

Just my opinion from my experience but everyone is different. I hope that your moms doctors can find something that gives her quality of life.

Have you considered asking for a Hospice evaluation?

I know what you mean, I said my dad was like having a 300# toddler that you couldn't put in time out or spank.

I think barb is right, a hospice evaluation should be done. If she can't skip one day, it doesn't sound good.

Have a talk with her cardiologist about what the reality is, so many people don't want to know that drs tend to not tell unless asked right out.

Hugs for all you do!