My Mom's Advanced Heart Failure

Lots of horror stories out there, which make you appreciate the good ones all the more.

When my mom was at the end, her memory care unit sent her to the ER when she was found unresponsive. They called me at the same time, and I got to the ER about 30 minutes after she did. I feared the worst when I talked with the attending ER physician.

He put his hand on my shoulder and said "I've already checked her chart and I saw that she has a DNR order. Unless you want us to, we won't do anything but keep her comfortable and pain free. Does that make sense to you?"

I could have hugged the guy. Mom died peacefully two days later. The hospital wasn't especially crowded, so they gave her a private room so I could visit, and the morphine she needed. The nurses were really great.

I had the same type of experience when DW died.
 
My mom was in rehab and they did very little... diet high in carbs and little protein.... we were told they ordered her milk at every meal, but they never gave her any unless we were there insisting on it...

IMO, rehab centers are there to make money and move the patient along when they think they have gotten enough out of you...

As for protein, we bought some energy drinks from Sam's Club that has 30 grams of protein and would take it to have mom drink... she liked the flavor so it was easy to get her to drink it...
 
The average time spent in hospice is weeks instead of months, and in many cases (specifically long-suffering diseases such as COPD and CHF) this is just unacceptable. In my Mom's case, it was a God send. Her last year was tough...really tough, but the care she got was fantastic and she really enjoyed the daily visits from the CNA and social workers. And because they did SO MUCH, my Dad (who was in his 80s at the time) was able to finally rest some...something he hadn't got to do in a very long time. They (hospice providers) really became part of the family, and 5 years later, they still come to visit my Dad.

Thanks for the detailed post. It was very helpful. It sounds like it all worked as it should for your parents.

My mom was in rehab and they did very little... diet high in carbs and little protein.... we were told they ordered her milk at every meal, but they never gave her any unless we were there insisting on it...

I had much the same experience. She didn't get the protein drink all that often unless I was there. I do think that with her with us we will do better at trying to get her better nutrition and in trying to find things she will like.

We went and saw my mom this evening and talked about some of the details of moving her to our apartment. It went pretty well. She made the comment that she can't really believe this is happening to her. I think that because she was so independent for so long the rapidity of going from there to needing to live with us is really hard on her. I mean objectively she has done really well to stay independent until 94 and it has been fortunate that she has been mentally fine. She has no dementia but I think some of her recent problems are taking a toll on her (I've read it can happen with heart failure as there isn't enough blood to the brain). I mentioned her moving to our apartment and she said "Not to your house?" Well, we don't have our house yet. We are closing on it in a week but have leased it back to the sellers and can't move in for about a month. We've talked to my mom about it many times but apparently it didn't stick....
 
My mom was in rehab and they did very little... diet high in carbs and little protein.... we were told they ordered her milk at every meal, but they never gave her any unless we were there insisting on it...

As for protein, we bought some energy drinks from Sam's Club that has 30 grams of protein and would take it to have mom drink... she liked the flavor so it was easy to get her to drink it...

+1 on the protein shakes.
 
Just and FYI.... do NOT have your mom drink their protein shakes.... they are God awful tasting and my mom would not drink them... which is why we brought our own...
 
I'm glad Hospice is more available (or are more just using it?) now, as it used to be much more difficult to qualify.

Back when mom needed it the only way for dementia patients to qualify here was to either have an open sore/wound that was not healing or an infection that wasn't responding to antibiotics.

So she never qualified, despite spending most of the disease bed-bound, requiring total care.
 
Thought I would update this. So, my mom was all set to be discharged on Wednesday and come to the apartment that DH and I are temporarily living in. But, on Thursday the rehab facility did a chest X ray and found she had a pleural effusion (fluid on her lungs) and sent her to the ER. She was admitted and is still in the hospital. On Thursday they used a needle to remove a quart and a half of fluid from around her lungs which did give her some relief.

Her kidney function is pretty bad. Not yet at a point of failure, but not good. They are also giving her an IV diuretic to help with the fluid so we'll see if that helps. It is undetermined whether she will leave the hospital and come to us or if she will go back to skilled nursing for a time. She doesn't want to do skilled nursing.

The past few days have been difficult. I had done a lot of stuff to set up for her moving in with us. We had set up home health care as well as hiring a caregiver service to come in 4 days a week for 4 to 6 hours to help her with showers and stuff and to give DH and I an opportunity to go out together places. (Historically she hasn't needed someone with her all the time but until she gets stronger I don't want to leave her alone).

Then -- when she went in the hospital -- we had to cancel all of that. I went to the hospital yesterday after having spent several hours doing nothing but talking to nurses, home health care, caregiver manager, oxygen supplier, etc. My mom doesn't really understand all of that and wondered why I got there in mid-afternoon when I hadn't stopped for 2 minutes the entire days. And, then she deferred all medical decisions to me so her doctor was calling me for decisions... All of that is fine, but exhausting. And, we are getting ready to close on buying a house on Friday so this week has just been so intense.
 
Thanks for the update, K. All that planning effort shouldn’t be wasted, just postponed (hopefully) for a few days.
 
Sorry for the issues, K.

Your experience sounds nearly identical to ours with MIL several years ago, think I've written about it. Her final slope (lasting about 7-8 months at 89) consisted of multiple ER trips, rehab, falls and hospital stays caused primarily by pneumonia and CDiff. Underlying heart failure but no diabetes. As I read your first post it struck me immediately as the beginning of what I'd call the final glide path. It was frustrating to not get any prediction of how long it might last, a mixture of optimism and reality from the medical staffs. I understand fully though how it CAN last a long time, or the sudden onset of pneumonia or other malady can bring the end quickly; no Dr. wants to make firm estimates when such can happen.

My MIL was a tough case. Wouldn't do what was told, but refused to accept any reality of what was ahead. After one bad bout of pneumonia leaving her very weak in hospital, hospice was explained and the choice made. Unfortunately, when what that really meant sunk in, she decided to demand help getting up, walking, to get better. After a month of that which sort of stabilized her, hospice basically kicked her out, back to rehab. Few weeks of that, Medicare provided rehab was up, so prepared for nursing home. BIL out of the blue thought good care and food at his home would do the trick (she'd lived with us for 7 years until repeated falls and failure to follow directions sent her to assisted living). Took an ambulance to get her there, she passed away maybe 5 days later. In the interim he had us getting another assisted living apartment close to him set up which we were able to back out of and get deposits back and furniture returned.

Point is that despite the inevitability of the end, the final slope down can be maddeningly unknowable. Mix in the emotions of the family with how the patient either wants to fight it or not, and accept what is coming or not, and it becomes very painful.

All that said, we had great experience with hospice with FIL and both of my parents who we cared for in our home with H until the end. If we had my MIL to replay I wish she could have finished at the hospice, but her sudden desire to fight, with modest success, put an end to that. They probably would have let her stay and linger til that point but her insistence on having staff help her up to "exercise" became too much for them and not in their model.

In line with other comments I was vexed by the feeling that the last months of one's life becomes a cash machine for the healthcare establishment unless one decides otherwise. However, such decisions are tough for all involved. Good luck and take care of yourself through all of this.
 
... My MIL was a tough case. Wouldn't do what was told, but refused to accept any reality of what was ahead.

... we had great experience with hospice with FIL and both of my parents who we cared for in our home with H until the end. If we had my MIL to replay I wish she could have finished at the hospice, but her sudden desire to fight, with modest success, put an end to that...

Having seen elderly relatives in their final days has gotten me to reflect and think a lot about my own, when that time comes.

Nobody lives forever, and I hope that I will realize when it is time for me to go. It would make it easier on myself, and on the surviving spouse and children.
 
What a great article. Kat, so sorry to hear about your Mom.
 
No easy answers; however, the attached article resonated deeply with me. If nothing else it may help you frame your own thoughts on the subject:

https://www.nextavenue.org/know-love-now-let-die

A very grim descriptive paragraph that I wanted to quote here, but decided to let interested people read for themselves.

"She can be fed a steady diet of Ensure through a tube directly into her stomach and she can be kept alive until ..."

In the cases of relatives that I knew, it was not the healthcare providers who wanted to keep life going as long and as far as medically possible; it was the patients that wanted to hang on at all costs. The survivors were torn and did not know whether to tell the dying what they wanted to hear (which would take a miracle), or the undeniable truth that it was hopeless.

So, I have made a point of knowing as much as possible about my medical condition and the prognosis, when faced with that final moment. Not everyone is prepared or even wants to think about this.

Of course, I may not be of a clear mind when that time finally arrives. But the least I can do now is to think and to prepare for that.
 
Of course, I may not be of a clear mind when that time finally arrives. But the least I can do now is to think and to prepare for that.



And to quote the Bard, "there's the rub"...
 
Thought I would update this. So, my mom was all set to be discharged on Wednesday and come to the apartment that DH and I are temporarily living in. But, on Thursday the rehab facility did a chest X ray and found she had a pleural effusion (fluid on her lungs) and sent her to the ER. She was admitted and is still in the hospital. On Thursday they used a needle to remove a quart and a half of fluid from around her lungs which did give her some relief.

Her kidney function is pretty bad. Not yet at a point of failure, but not good. They are also giving her an IV diuretic to help with the fluid so we'll see if that helps. It is undetermined whether she will leave the hospital and come to us or if she will go back to skilled nursing for a time. She doesn't want to do skilled nursing.

The past few days have been difficult. I had done a lot of stuff to set up for her moving in with us. We had set up home health care as well as hiring a caregiver service to come in 4 days a week for 4 to 6 hours to help her with showers and stuff and to give DH and I an opportunity to go out together places. (Historically she hasn't needed someone with her all the time but until she gets stronger I don't want to leave her alone).

Then -- when she went in the hospital -- we had to cancel all of that. I went to the hospital yesterday after having spent several hours doing nothing but talking to nurses, home health care, caregiver manager, oxygen supplier, etc. My mom doesn't really understand all of that and wondered why I got there in mid-afternoon when I hadn't stopped for 2 minutes the entire days. And, then she deferred all medical decisions to me so her doctor was calling me for decisions... All of that is fine, but exhausting. And, we are getting ready to close on buying a house on Friday so this week has just been so intense.

I really think that you need to consider hospice. As I alluded to earlier, they can be an incredibly big help and unfortunately, folks who could really benefit from it rarely get to use the benefit (certainly very few maximize it, and a lot NEVER utilize it). My Dad has also been suffering from a plueral effusion, and he is having it drained on Monday as a pallative procedure. Since they haven't been able to determine the underlying cause, there is a decent likelihood that it will come back. Just today, the hospice folks came by to do an assessment and they agree that he is medically qualified for hospice care. Since the procedure on Monday is being considered a treatment, we will not enroll him until Tuesday (once the hospice benefit begins, then any treatments that are "curative" in nature will not be covered by insurance). If the effusion comes back, then it is possible that a catheter would be installed that could be drained by the hospice staff in the home.

I truly feel your pain. The last couple of months have been a very rough road with my Dad and the emotions can really put you though the ringer.

No easy answers; however, the attached article resonated deeply with me. If nothing else it may help you frame your own thoughts on the subject:

https://www.nextavenue.org/know-love-now-let-die

That article certainly pulls at the heart strings. :(
 
Last edited:
Sorry to hear, this is a difficult time for all. My dad died of congestive heart failure plus had many more ailments - diabetes, gallbladder disease, fibrosis of the lungs and about a dozen more. The last 3 years of his life he was declining and had multiple hospitalizations and stints in rehab. He and my mother lived with us during these 3 years. He was cognitively aware. It was an honor and privilege to care for him that 3 years. Despite his many medical issues, he was upbeat and positive. I miss him every day.
 
First off, as others have said, your mom is VERY lucky to have you. Many don't have an advocate when they need it the most.


My mom was 92, had Alzheimer's, was paralyzed from the waist down, heart failure, had several strokes, but my dad just couldn't let her go. Finally he passed from the stress, and I had her living will and power of attorney. Each time I went to see her, she complained about the physical therapy, lack of baths, being rushed to the hospital for x-rays (I had a nurse tell me that x-rays made patients feel better:confused:) so at her next care meeting I asked the table full of professionals who would trade places with her. No one found that very desirable so I explained I wanted her evaluated for hospice. It was quite the fight, but I won, and several weeks later my mom did too when she got out of there for good.

The money grab was quite evident and incredibly frustrating. I hate to say this, but she was private pay, and I suspect they wanted to keep that gravy train running as long as possible.

Hospice is a wonderful thing and helped me as much as it did her, even though we only got to take advantage for a few weeks.


Be nice to yourself - you're doing a wonderful thing and this process is never smooth or painless to any of us. Hang in there and be proud of the work you're doing on her behalf.
 
Last edited:
Sorry for the issues, K.

Your experience sounds nearly identical to ours with MIL several years ago, think I've written about it. Her final slope (lasting about 7-8 months at 89) consisted of multiple ER trips, rehab, falls and hospital stays caused primarily by pneumonia and CDiff. Underlying heart failure but no diabetes. As I read your first post it struck me immediately as the beginning of what I'd call the final glide path. It was frustrating to not get any prediction of how long it might last, a mixture of optimism and reality from the medical staffs. I understand fully though how it CAN last a long time, or the sudden onset of pneumonia or other malady can bring the end quickly; no Dr. wants to make firm estimates when such can happen.

Yes, exactly. It is so clear to me that my mom is in a declining condition that will not reverse for the long term. It may go up and down. The procedure they just did to drain pleural effusion and the IV diuretic has been very effective at getting rid of the excess fluid. My mom has had enormous lower legs for the last 2 months and now they look close to normal. I spoke to her kidney doctor today and he was very pleased with her response to the treatment and I can see by the labwork (which I have access to online) that her kidney function -- while still bad -- has improved a bit the last couple of days.

That said...there is no comparison between how my mom was 3 months ago (living alone, still driving) and now (mostly in bed except to get up to go the bathroom or to therapy).

My MIL was a tough case. Wouldn't do what was told, but refused to accept any reality of what was ahead.

I fear this kind of thing for my mom. She is not doing the things that need to happen for her to get stronger. She won't eat foods with protein, even foods she used to like. Without the protein she doesn't get stronger. Some of her problems are made worse due to the low protein she is eating (yes, with kidney disease she shouldn't have too much protein but her problem is the opposite).

She has been told that moving around will help her strength and help keep the fluid down. She was getting in the recliner and sitting up almost all day and going to therapy. After she got pneumonia, though, she quit doing that. Now, she stays in bed 100% of the time except to go to the bathroom or if they come to do therapy (she will do that). Once she gets moving, she actually moves fairly well (with a walker).

She is starting to get resistant. Today, I asked her if she had walked in therapy yesterday (we had to leave just as the therapist arrived). She said she didn't know. I asked if she walked this morning. She said she didn't know. My sense was that she knew but she doesn't didn't want to talk about it. She used to talk about wanting to be able to walk and get around on her own. She doesn't do that any more.

I do recognize that she doesn't feel well. She doesn't feel like getting up. She just doesn't want to do those things. But, at the same time, I don't think she accepts the reality of what will happen. That is -- I see the end of her life approaching. She thinks that she will move back home when she is somehow magically stronger. This makes it difficult. And, she doesn't really want to talk about any of this.


No easy answers; however, the attached article resonated deeply with me. If nothing else it may help you frame your own thoughts on the subject:

https://www.nextavenue.org/know-love-now-let-die

This was a good article. I was, however struck by this line

A day does not go by where my partners don’t look at each other and say, “How do we stop this madness? How do we get people to let their loved ones die?”

From my standpoint I see it as just the opposite. I am all but desperate for guidance and for people to be realistic. It is so, so clear to me that my mom is on this downward slope. Even she says her decline from where she was 3 months ago is shocking to her. She told me she didn't expect to have such a severe change.

To me -- the medical end of it always seems like a hamster treadmill. There is always something to be done. Take this medicine, have that procedure. The point at which to say "enough" is not always clear.

I am glad my mom had the procedure to drain the fluid. It was not a painful procedure for her and did give some immediate relief. Just from a comfort standpoint, it seems to have been worth it.

And, yet, I see so much being done and it just seems so endlessly futile. She has been in the hospital or rehab for all but 2 days of the last 2 months.

As far as hospice -- the nursing director at rehab said she didn't think it was yet right for her (although she did say we could get an evaluation for it -- I don't think my mom would really want it right now).

The one thing that the hospital did do that I felt was appropriate was ask her if she wanted a DNR. Well, actually they asked me. This was soon after we got to the ER. I actually thought it odd that the nurse asked me when my mom was right there in the room. I told her to ask my mom. The nurse did and said they ask anyone who is over 74. She explained some of the negatives of resuscitation especially in older patients. So she asked my mom if she wanted a DNR. My mom told her to ask me... About then the nurse said it didn't have to be decided then. My mom did mention that she didn't feel she could handle having any broken bones from resuscitation.

The next day, another nurse called me and asked again. She had asked my mom who said to ask me. I told her to do the DNR. The nurse said she felt it was right to do given my mom's age and condition and the risks of resuscitation. Later I talked to the doctor he also confirmed it with me (he, too, had asked my mom who said to ask me).

So -- at least we do have that.

But getting back to the article. It is very hard for a patient's family to be anything but aggressive in treatment unless doctors have told the family that treatment is just postponing the inevitable. You don't want to be the one to "give up" on your parent or whatever particularly if you don't have the expertise to know what will happen. I am not a doctor. I may think my mom is in an inevitable decline but I could be wrong. I look to the doctor to tell me. But, in general, they don't bring up the big picture. They talk to you about what is happening today not about what is likely to happen next week or next month. So -- for today -- there is almost always something that can be done. It is only in retrospect that you can look back on it and see that it wasn't really worthwhile (I'm thinking of when my dad had lung cancer). But no one really helps you with that and as a family member I look to the professionals to tell me that. It shouldn't be up to me to guess on this....
 
Well all I can tell you is that when I was dealing with Doctors as relates to my parents I made it absolutely clear I was making the decisions, with their input of course, but me and not them.

I remember one time a doctor wanted to do a spinal tap on my mother to rule out some highly unlikely infectious disease. I said no. We went back and forth and the Doctor shook her head and said effectively to me ”you're not suppose to be in charge we Doctors are". I simply smiled and said thanks for the compliment.

Bottom line is I drove the bus not the Doctors, but I approached every discussion without emotion and having done my homework so no one could push me around.

Edit: Let me be blunt and excuse me if I overstep. Rereading your last post you know what needs to be done with your Mom, but you are unfortunately (but understandably) looking for confirmation from Doctors.
 
Last edited:
First, let me say that it's a very tough time, especially when the parent has been independent until recently. I just watched my 80.5 year-old mom decline in a 7-week period from independent living to death, after falling and breaking a hip, then getting pneumonia, then getting MRSA, a bladder infection, and after having suffered from dementia for 7+ years. I hope that you have an advanced medical directive in place, and that you have medical power of attorney set up. Last October, my mom signed a medical power of attorney, but not an advanced medical directive. This left me in the situation of having to decide her end-of-life care. It's a gut-wrenching process, and only my wife telling me I was making the right decision helped calm my anxiety over the decisions. If I was in your shoes, I'd stick with palliative care at the most...making her comfortable, and doing things that are low-risk, low-cost, and improve her remaining quality of life, such as draining excess fluid. At this point, running endless tests and intrusive procedures likely won't help anyone but the hospital's financial status.

Since your mom is still lucid, I'd discuss the prognosis, and ask her about her thoughts about palliative or hospice care. Once my mom stopped eating much at all, she did not last long (6 weeks). Doctors and care facilities and rehab just want to treat, treat, treat, up until the end, racking up $10s of thousands in charges over a few weeks. When my mom was in the ER, and the phlebotomist was trying to draw blood and my mom had IVs in her two shrunken arms and couldn't find a vein, I thought, 'enough is enough'. I asked for a hospice consult, which was the only sane path at that point. Best wishes for a peaceful end.
 
Last edited:
If I was in your shoes, I'd stick with palliative care at the most...making her comfortable, and doing things that are low-risk, low-cost, and improve her remaining quality of life, such as draining excess fluid. At this point, running endless tests and intrusive procedures likely won't help anyone but the hospital's financial status.

Since your mom is still lucid, I'd discuss the prognosis, and ask her about her thoughts about palliative or hospice care.

I think part of it is that I am not sure about what needs to be done. That is -- I know how it looks to me but perhaps I am being pessimistic. Her regular doctor about 6 weeks ago did bring up the option of hospice/palliative care (although more in terms of if she didn't improve enough in rehab). The nursing director at rehab didn't feel my mom's decline was rapid enough that hospice was right just yet (although she did shade that a bit). But, that was before the newest issue.

On the one hand, she has really advanced heart failure, Stage IV kidney disease, Type II diabetes that is not at all controlled. She is weak enough that she often can't get out of a chair or bed by herself and sometimes can't lift her legs into bed. She has a lot of shortness of breath and has no desire to get up and move around. She is eating very little, particularly very little protein foods. She is getting to be very resistant to suggestions to eat or move.

And, yet -- except for the weakness and the not eating -- she has had those health conditions for years. Just today the internist at the hospital called me and said how well she was doing and would probably be discharged in a couple of days. The kidney doctor came by while I was there and noticed that all most all of her edema in her legs was gone. He was beaming.

So that makes it hard to evaluate. Maybe I am being too pessimistic. The biggest change between now and 3 months ago is her weakness and her not being able to easily get up and down and needing a walker (before she used a cane sometimes, but not always).

I do wonder if those doctors are just focused on the short-term improvement which does exist. She is much better today than she was when she was admitted 3 days ago. It is the big picture that I think is missed at times.

As for talking about this with my mom, I don't think it will be fruitful. A week or 10 days ago I did ask her what she wanted. She said she wanted to go home. I did ask her how she felt it would go if she didn't improve before discharge. She said not well. Then a few days later she gave up on the idea of going home alone. I do think she realized she just couldn't do it. But, since then she has in some ways just seemed defeated. The fact that she defers all medical decisions to me -- even the DNR -- seems to be part of that. Oh, yes, she has an advance directive and I have medical power of attorney. So all of that part is fine. I think she is at a point where she just doesn't want to deal with anything. But, she has never been one to want to face up to reality. So, she is not going to want to discuss any of this. It is already at a point where if I ask her anything she is starting to just refuse to answer. She will just say she doesn't know and won't engage....

Edit: Let me be blunt and excuse me if I overstep. Rereading your last post you know what needs to be done with your Mom, but you are unfortunately (but understandably) looking for confirmation from Doctors.

Not so much confirmation but expertise that I don't have. I expect them to know more than I do....

One thing I really want to do is to take her to see her primary care doctor. The one who told me that my mom was in declining condition and gave me a guesstimate of 6 months to a year. I would like to know what she thinks now. Of course, to have my mom see her she has to be discharged and then be able to go to her office.
 
God, grant me the serenity to accept the things I cannot change,

Courage to change the things I can,

And wisdom to know the difference.

Only thing I would personally add to the advice of the Serenity Prayer is to make sure you take care of yourself in this difficult time.
 
Last edited:
When my mom returned to the hospital, the young doctor was beaming and said, we have the a-fib under control, she can be discharged now! She had fixed the problem! But mom wasn't eating, drinking much, was incontinent, unable to dress or feed herself, and mentally, had given up. Doctors often seem to fail to see the whole person, focusing on what they can fix at the moment. I really feel for you. I could not get any hard estimates, and even the best doctors could be far off in their guestimates. The closest I got to a real answer was from Hospice. I was going to buy a case of Boost energy drink, and they said you won't need that much. Best wishes in what will be a very difficult time.
 
Hospice can help you through this Kats. I really feel for you. My FIL died on hospice at home last Sept. Mom died on hospice in Dec in memory care. Dad is on hospice in memory care now. Hospice IME is caring and empathetic. They do an evaluation and decide according to Medicare standards if they qualify. Once in if you mom improves she can graduate from hospice. They have counseling that really help my MIL. And she is a very private person

It hurts to have the Mother Daughter roles reverse.

my FIL was thankful for having some relief & release
 
Kats,

I am responding as someone with a mom who has congestive heart failure....and as a long-time hospice volunteer.

You have a lot to deal with and I want to offer this. Please forgive me if it has already been mentioned.
Over the years, I have had many patients released from hospice. If a patient has a life expectancy of six months or less, they can be admitted into hospice. Sometimes, that is extended over and over again.... and in other cases, the patient is released.

If you think your mom and your family might benefit (and that is very possible), I hope you look into it -- at least for six months. If your mom improves or wishes to exit hospice for any reason, that is always available---as well as re-entering down the road.

Best wishes & hugs. You and your mom are on my mind this evening. My mom refuses to accept she has CHF because she does not believe in Western medicine, which presents challenges as well.

sigh
 
Back
Top Bottom