My Mom's Advanced Heart Failure

[NW-Bound]

I had a distant cousin who refused to take dialysis when his kidneys started to fail. He knew that dialysis would extend his life by a few years, but he said it was not worth it. Other than the kidney failure, I did not know if he had any other complications. He died in his late 70s.

I also knew of another man who went through a few chemo sessions for his cancer, said "screw it", stopped treatment, and accepted his fate. He was in his 80s.

 

[Teacher Terry]

I have been with people when the died and no one looked surprised. That is interesting. The second hospice was much better. Glad you dad fly boy has a nurse he trusts. That is priceless.

 

[Katsmeow]

This already has been an eye opener to me and has had an effect on how I think about my unknown future. I am really seeing what is like when there is no quality of life there. When everything is a struggle. If that is temporary that is one thing. But if that is all that is left, well that is an entirely different thing.

Of course figuring out which it is -- well, there's the hard part.

I was thinking about all this last night. What is really affecting the quality of my mom's life right now is her weakness and lack of strength. Because of the weakness she has little interest in doing anything. She doesn't talk to us hardly at all except about medical things or helping her do X. She doesn't watch TV or read the paper (the two things she most liked doing before). And, all of that is really because she is too tired to do anything.

One of the reasons she is tired is because she lacks strength. Getting out of the bed and using a walker to go 15 feet to the bathroom, then going and standing up and going to her room is a major ordeal for her. The hard parts for her are the standing up at the start and when she leaves the toilet. Twice today she couldn't manage to get up even with a toilet riser with arms on it. (I was able to help her do it with a gait belt).

One of the reasons she is weak and lacks strength is because she isn't eating or moving much (of course, she doesn't move much because she is tired). Theoretically, that could all be improved if she ate more (she is eating more than she ate in rehab/hospital but still not eating enough) and if she could get stronger through physical therapy and moving around. And, if that happened then her quality of life would improve.

On the other hand, part of the reason she got weak in the first place is because of the heart failure. Everything exhausts. She gets tired turning over in bed, let alone getting out and doing something. Today she was very unwilling to do anything she didn't absolutely have to do (basically go to the bathroom).

And, even if she eats more and tries to get stronger -- I don't think that will appreciably improve the weakness she gets from the heart failure. That part is really not under her control.

DH and I both felt today that she is very close to just refusing to even attempt to get out of bed. We have told her that if she is completely bed bound that we can't take care of here. It would be beyond us. She knows that and has said she doesn't want that.

At the same time, if I was her and felt that even if I ate I would still be exhausted all the time I could honestly see getting to the point of just saying "enough." I couldn't blame her at all.

That said -- I think at some level she is still at a point where she thinks (maybe hopes) that this is like having the flu. Most of the time you feel awful and like you want to die ...but you don't die. You eventually just get better. Of course, heart failure isn't like that. You aren't going to just eventually get better. But I think that is what she is hoping for.

Again - I totally understand why she doesn't have the energy to do anything. When she walks 15 feet to the bathroom it is a major ordeal for her. She feels like she ran flat out for a good long time. She is that tired. So from her standpoint I am sure she feels like she just can't get up and move around because she is so tired. And, she just hopes that it will all get better.

 

[ExFlyBoy5]

This already has been an eye opener to me and has had an effect on how I think about my unknown future. I am really seeing what is like when there is no quality of life there. When everything is a struggle. If that is temporary that is one thing. But if that is all that is left, well that is an entirely different thing.

Of course figuring out which it is -- well, there's the hard part.

I was thinking about all this last night. What is really affecting the quality of my mom's life right now is her weakness and lack of strength. Because of the weakness she has little interest in doing anything. She doesn't talk to us hardly at all except about medical things or helping her do X. She doesn't watch TV or read the paper (the two things she most liked doing before). And, all of that is really because she is too tired to do anything.

One of the reasons she is tired is because she lacks strength. Getting out of the bed and using a walker to go 15 feet to the bathroom, then going and standing up and going to her room is a major ordeal for her. The hard parts for her are the standing up at the start and when she leaves the toilet. Twice today she couldn't manage to get up even with a toilet riser with arms on it. (I was able to help her do it with a gait belt).

One of the reasons she is weak and lacks strength is because she isn't eating or moving much (of course, she doesn't move much because she is tired). Theoretically, that could all be improved if she ate more (she is eating more than she ate in rehab/hospital but still not eating enough) and if she could get stronger through physical therapy and moving around. And, if that happened then her quality of life would improve.

On the other hand, part of the reason she got weak in the first place is because of the heart failure. Everything exhausts. She gets tired turning over in bed, let alone getting out and doing something. Today she was very unwilling to do anything she didn't absolutely have to do (basically go to the bathroom).

And, even if she eats more and tries to get stronger -- I don't think that will appreciably improve the weakness she gets from the heart failure. That part is really not under her control.

DH and I both felt today that she is very close to just refusing to even attempt to get out of bed. We have told her that if she is completely bed bound that we can't take care of here. It would be beyond us. She knows that and has said she doesn't want that.

At the same time, if I was her and felt that even if I ate I would still be exhausted all the time I could honestly see getting to the point of just saying "enough." I couldn't blame her at all.

That said -- I think at some level she is still at a point where she thinks (maybe hopes) that this is like having the flu. Most of the time you feel awful and like you want to die ...but you don't die. You eventually just get better. Of course, heart failure isn't like that. You aren't going to just eventually get better. But I think that is what she is hoping for.

Again - I totally understand why she doesn't have the energy to do anything. When she walks 15 feet to the bathroom it is a major ordeal for her. She feels like she ran flat out for a good long time. She is that tired. So from her standpoint I am sure she feels like she just can't get up and move around because she is so tired. And, she just hopes that it will all get better.

Kats...again, I am sorry about the situation. It's a tough thing to watch a loved one slowly die. I don't have any advice or words of comfort, but only try to do all you can to keep her comfortable and let her know every day how much you love her. My Dad is slowly coming to conclusion that the ride of life is coming to an end and it's painful to watch. Just a few months ago, he was all ready to go do another road trip or visit friends (the very few that are still around) but now he is realizing that his trips out of the house are few and far between. I initially thought that he would easily have 4 or 5 months left in him, but I think I am being very pessimistic. He's tired, and he's tired of being tired...and I can see it in his eyes.

It's especially taxing to the caregiver. You want to help them, and fix them...you want it all better...you know, the way your Mom did countless times when you fell and skinned your knee or got a "belly ache". To not be able to help them like they helped you is absolutely heartbreaking.

 

[gwraigty]

DH and I both felt today that she is very close to just refusing to even attempt to get out of bed. We have told her that if she is completely bed bound that we can't take care of here. It would be beyond us. She knows that and has said she doesn't want that.

It's good that you and your DH are being so honest with yourselves and with her. That is so important.

Please keep us updated.

 

[rdy2go]

Kat, is your Mom on oxygen? Mine got to the point where she needed oxygen around the clock to keep her O2 level up above 90. It helped her quite a bit and her needs kept increasing to where she was up to a level six on her machine, but it did help her feel better/

 

[NW-Bound]

... What is really affecting the quality of my mom's life right now is her weakness and lack of strength. Because of the weakness she has little interest in doing anything...

... When she walks 15 feet to the bathroom it is a major ordeal for her. She feels like she ran flat out for a good long time. She is that tired. So from her standpoint I am sure she feels like she just can't get up and move around because she is so tired...

My father-in-law, in his last 2 years, lost all mobility. He could not even sit up, let alone lift himself out of bed. Walking, even with a walker, would mean a miracle. His joints were all stiff, and he could not even lift a hand to his face to scratch his nose. Of course the nursing home staff had to help him with the bodily functions.

My wife and her siblings took turn to come to the nursing home every evening to spoon-feed him a home-cooked dinner. Without that care, he would not last as long as he did.

His organs all functioned normally for his age. So, he would go on for longer in that state, if it were not for a cold and the ensuing pneumonia that killed him.

I would hate to be in that state for long. And so did my FIL, but he had no choice. He just kept quiet about his fate, and only once lamented to my wife that he did not wish to live so long. He died at 91.

 

[Katsmeow]

Kat, is your Mom on oxygen? Mine got to the point where she needed oxygen around the clock to keep her O2 level up above 90. It helped her quite a bit and her needs kept increasing to where she was up to a level six on her machine, but it did help her feel better/

She is on oxygen. I am actually not totally sure that she technically needs it. When she was in the hospital using oxygen 24/7 one of the nurses commented to me that my mom was at 95 or above even without the oxygen. But my mom really insisted on using it. I think in some ways it is a security blanket for her rather than an absolute necessity. When she goes to the bathroom she usually takes it off beforehand and doesn't seem to have a problem.

That said - she does want to have it and I think it gives some sense of security to her. It is set only at 2 or 3. But, of course, it may need to be increased at some point.

My father-in-law, in his last 2 years, lost all mobility. He could not even sit up, let alone lift himself out of bed. Walking, even with a walker, would mean a miracle. His joints were all stiff, and he could not even lift a hand to his face to scratch his nose. Of course the nursing home staff had to help him with the bodily functions.

This is something that I feel my mom may be fast approaching. I have seen a huge deterioration in just the last 3 days. With her, though, it can be difficult to know what she can't do versus what she doesn't want to do. For example, she sometimes will call me in and ask me to do things that I know that she can do. If I suggest that she try to do it, she does it without problem. (The home health care nurse cautioned me about enabling by doing things for her that she could do).

This makes it often hard to know what she can do versus what is truly extremely difficult for her. But -- things that two days ago she was doing she is now saying she can't do. Just a little while ago, she called me into her room to get her glass of water off the nightstand and to hand it to her so she wouldn't have to roll over in bed (something which she had done more than once that day).

The thing that is hard is that it can be difficult to know when to do it for her, when to help her do it and when to simply encourage her to do it. Obviously, we would like to see her maintain mobility as much as possible. If she doesn't then she would be like your father-in-law. And the more we do for her, the faster that time may arrive.

My wife and her siblings took turn to come to the nursing home every evening to spoon-feed him a home-cooked dinner. Without that care, he would not last as long as he did.

I have no doubt that is true. My mom is at the point where she seems unable to eat any solid food at all. She can drink something like Boost and will eat small amounts of very soft food (applesauce, pudding, that kind of thing). Solid food is starting to just make her throw up.

And that is another one that is hard. I know that people getting ready to approach end of life often quit or limit eating. That makes sense. The body wants to shut down so why give it fuel? So some things I read says to not try to get them to eat.

On the other hand -- it is hard to know if you are at that point. I had a relative who broke her hip (and some other bones) about 6 months ago. She was already on the thin side and basically stopped eating. By the time she entered hospice she was under 70 pounds. I really thought she wouldn't be with us very long.

But -- 3 months later she has recovered. She has gained some weight -- still thin but not dangerously thin. She hasn't really gotten her appetite back but she drinks 3 high calorie Boost a day and supplements with some soft food.

But 3 months - she certainly appeared to be at end of life and was admitted to hospice. Now? She is being removed from hospice.

Given that experience, I am reticent to quit encouraging my mom to eat. (That said - my mom's situation is different. She has a lot of underlying chronic diseases that the other relative does not have).

 

[Moemg]

Every time I read your updates It reminds me so much of what we went through with my Mother .It is so hard to know how much help to give . Take care of your self .

 

[Mulligan]

So sorry for your troubles . We can never predict when our parent swill die especially when they are on a slow decline . My Mom was just like your Mom 's situation .She would have good days and bad days . Eventually a severe pain landed her in the hospital and she passed away a week later . We did have palliative care and then hospice for six months before she died . They were great. Two weeks before my Mom died she went to a St. Paddy's day party so you can never predict when someone will die .

Moemg, that is so true. And I think Doctors know this and are very hesitant to put timelines on because of the unpredictability of it all. My dad had liver cancer 2 years ago and went through the chemo and radiation...A year later they said it didnt work and he still had it. Dad said no more treatment, he will die when he dies. At first Doctor would give no timeline. Then in early October he finally relented and said 6-12 months. So we are into 9th month and Dad says he feels no different now than before he even knew he had liver cancer. When they first told Dad he accepted the fact he might be dead before Christmas and yet here we are heading into June he is living like any other normal day of his life.

 

[Moemg]

Then in early October he finally relented and said 6-12 months. So we are into 9th month and Dad says he feels no different now than before he even knew he had liver cancer. When they first told Dad he accepted the fact he might be dead before Christmas and yet here we are heading into June he is living like any other normal day of his life.

My Aunt was given six months to live and she lived twenty more years .

 

[Souschef]

My Aunt was given six months to live and she lived twenty more years .

OTOH, my late wife was given at least 6 months, and died a month later.

 

[NW-Bound]

Yes. Even in the terminal phase, there are still so many unknowns.

So, what are we doing looking at different life expectancy calculators? Plenty of people die in their 60s or 70s, even though they should live longer than that given their health history.

Yes, I know. People are just looking for something to confirm that they hope for: to live to the 90s, if not to 100.

 

[LARS]

My Aunt was given six months to live and she lived twenty more years .

And the moral of that story is get a good second opinion before thinking about blowing your stash of cash quickly before meeting your Maker.

It could really crimp your retirement otherwise...

 

[Taxman59]

I am blessed with my DM’s good health. She is 90, and she lives in her home with my sister. About 19 years ago, my parents sold the longtime home and moved into a condo. DF had been suffering from depression for years (I am convinced it is a result of the horrors of battle on top of family mental health issues). When he sold off his business, he went into a decline, and when they sold the house, he went fairly quickly. The home health care was good, and afforded my DM time to get out and maintain her sanity. He passed in 2004, and DM, with my youngest sister helping her, she began to thrive. Her daily swimming morphed into 5 days of swimming and 2 days with a personal trainer. About 4 years ago, she talked about not living to 90. My sister and BIL moved in with her which Mom celebrated as the day she avoided a nursing home. As her 90th birthday approached, she had several Afib and diarrhea which necessitated hospital stays. Luckily, my oldest sister is a nurse and can talk with the Drs and nurses getting the straight talk.
I was up there 10 days ago, and saw that her mental health is good, but not great. Her memory is not great, but she recognizes that she needs some help and will listen to us and follow our directions. She stopped me while I was taking her to the trainer (she does burpees and bear crawls!!), and told me that she wanted me to understand that she was done with any “extraordinary care”. I had talked with her several years ago about this, but she agreed that the definition of what is extraordinary has changed in the last year or so.
I saw my father kicking and screaming up until the final few days, and compare that with Mom. She saw her parents (as the primary family member in charge of care for both), her husband of 53 years, and knows too well the pain of watching someone decline. Katsmeow, hang in there and know that you are doing your best and at some level she knows it.

 

[Katsmeow]

She stopped me while I was taking her to the trainer (she does burpees and bear crawls!!), and told me that she wanted me to understand that she was done with any “extraordinary care”.

Oh, mi gosh. Your mom sounds awesome!

It is so hard to figure out what my mom knows or understands. She has been fairly sharp mentally. I mean she had some memory issues but for her age she was doing well. Just in the last month though I have started to see her slip. And, in the week she has been here there have been some really odd things. What I don't know is if they were happening in the several weeks she was in the hospital/rehab and I just didn't happen to see it. Or, is this new?

For example, she had taken off her oxygen to go to the bathroom. When she got back I handed it to her to put back on. Something she does all the time. I turned around and she was putting it in her mouth. I asked why and she said she didn't know. Another time my husband went to see what she wanted for breakfast and she wanted the leftover soup (there was no soup - leftover or otherwise). Or, the time I asked her why she didn't want to have her Boost and she said, "I'm timing" and then stopped. I asked her what shew as timing. She didn't know (I think she was trying to say she was spacing out the 3 bottles she was going to drink). Of course, all of that is rare. It is like once a day maybe that something like that happens. But, definitely totally new.

Part of the issue now is that what she says she wants/doesn't want isn't aligned with her actions. We've talked about the eating thing and getting strength. She told me the other day she wanted to get stronger and would drink 3 Boosts (or equivalent) a day plus eat a little more. She would do therapy.

When the PT therapist was arriving this morning, she asked DH if he couldn't just send him away. Of course, he said no. She did the therapy fine. She had eaten a small actual breakfast. Later I brought her one of the shakes to drink. She drank part of it and then dropped it (whether by accident or on purpose I don't know).

She knew I was making tuna salad for dinner and said she would eat some. Later she called DH in and said she was ready for it. When I brought it to her, she asked me to go take it away and said she wanted to go to sleep. She did end up eating a few bites.

At that point, I sat down and talked to her very clearly. I told her she had eaten about 300 calories today and asked her if she knew what could happen if she didn't eat more. She said she could die. I also pointed out that she could get so weak she would be bedbound and we might not be able to take care of her at our home and she would have to be in a nursing home. (We've talked about all of this before so it was not new information to her).

It was clear in the discussion that she doesn't want to die. She even commented about how dying must be terrible (she has always had an a great fear of the pain of dying). She also doesn't want to be in a nursing home and doesn't want to be bedbound.

This was a frustrating conversation. The weakness that occurs due to her heart failure, kidney disease, and diabetes is not something she has control over. The two things that she can try to do are eat more to help with strength and move more to help with strength. And those are the two things that she does not do.

I acknowledge fully that those things are very difficult for her and that even if she did them the long term outlook for her is not good. I could totally understand someone just deciding not to do those things and accepting that either death or immobility (probably in a nursing home) would occur. I understand someone deciding that they want to be as comfortable as possible for the rest of the time they have and deciding that the prospects for meaningful recovery are so low that they just won't try.

The problem with my mom is that she doesn't do those things but doesn't accept that death or immobility would occur. She will always say in these conversations that she will do them...the next day.

 

[NW-Bound]

Dealing with people who are no longer rational is tough. You can no longer talk sensical things with them. I have seen elderly people going irrational like this, and they were not physically impaired. Is this a form of dementia?

 

[Katsmeow]

Dealing with people who are no longer rational is tough. You can no longer talk sensical things with them. I have seen elderly people going irrational like this, and they were not physically impaired. Is this a form of dementia?

Maybe?

In my mom's case, I wondered if maybe it was due to lack of good blood flow to the brain due to her heart failure?

 

[Amethyst]

Your clear, detailed descriptions sound very like the way my Mom talked and acted, when she was going downhill from emphysema. She obviously wasn't getting enough air into her damaged lungs, even with the oxygen tank, and also was barely eating. She was never diagnosed with dementia, but even normal brains need lots of nourishment and air to function normally. If there's not enough air and nutrition, the brain focuses on merely keeping the body functions going. Higher level functions get stinted.

Maybe?

In my mom's case, I wondered if maybe it was due to lack of good blood flow to the brain due to her heart failure?

 

[VanWinkle]

My sympathies for what you are going through and I hope there is clarity for the path forward. I have been through the dying process with both of my parents and is the hardest thing I have done in my life. The good news is that being there was a comfort for them and for my family.

Best wishes,

VW

 

[ExFlyBoy5]

I also pointed out that she could get so weak she would be bedbound and we might not be able to take care of her at our home and she would have to be in a nursing home. (We've talked about all of this before so it was not new information to her).

You are making an assumption about the information not being "new". Because of her cognitive decline, the information may very WELL be new to her. In dementia, and other disorders of the mind, short term memories are usually the first thing affected. I am having the exact same issue with my Dad. I will explain to him how something has changed (most recently a medication dosing or timing) and he 100% understands at the time. Even quizzing him an hour later...he still gets it. The next morning (10 hours later), he will have no recollection of the change or discussions....or he will get very mixed up.

Your clear, detailed descriptions sound very like the way my Mom talked and acted, when she was going downhill from emphysema. She obviously wasn't getting enough air into her damaged lungs, even with the oxygen tank, and also was barely eating. She was never diagnosed with dementia, but even normal brains need lots of nourishment and air to function normally. If there's not enough air and nutrition, the brain focuses on merely keeping the body functions going. Higher level functions get stinted.

To add to this, with a lung disease, patients are often on supplemental oxygen. Sometimes, the O2 level will be TOO MUCH resulting in carbon dioxide retention, which causes cognitive issues. If the O2 is TOO HIGH, a patient can actually go into respiratory arrest because the body has plenty of oxyge, but can't get rid of the excess CO2, so the body basically stops breathing. It's not discussed too much in the hospital setting, because the O2 levels are constantly monitored. In a home care situation, it can be harder to manage because of the lack of real-time, constant monitoring.

When there is heart failure, it obviously affects the lungs...so although CO2 retention may very well not be an issue, I think it might be worthy of discussion to either rule it out, or deal with it. It *could* help with your Mom's cognitive issues.

 

[NW-Bound]

My mother who lives alone makes her medical appointments, gets prescriptions, drives herself on errands, etc... She appears just as any normal person.

On an occasion when she visited during lunch time, I invited her to have some quinoa salad, and touted the benefit of quinoa over other carby food and that could help her blood glucose. She wrote down the info, and how to cook it.

A week or two later, I asked if she had made any quinoa at home. No, she forgot about it. So, I invited her to try again, and she wrote down the info again.

A couple of weeks later, she visited and I asked her again. "What is quinoa and what does it look like", she asked. I gave up.

Yet, she would remember about detailed aspects of her friends' lives, what recent quarrels they had with their husbands and childrens, all matters of gossip, etc... She would talk my ears off with these stories...

My mother still has some memory facility, but she would rather commit it to things that she cares about like these gossip stories.

 

[Katsmeow]

This is all very interesting. I think it may well be that the brain is just not getting enough "fuel" of some sort as Amethyst describes with her experience with her mom. ExFlyBoy5 - That is interesting about the Oxygen. They have been checking the levels when the home health care nurse and the physical therapist come by - so that is on 3 days of the week.

As far as whether the information is new you are right that in some cases she may have forgotten. Sometimes when I repeat stuff like that she says "You already told me that" while other times it seems to be new to her.

One of the interesting things that I think is happening with the cognitive stuff is that she will be having a dream and wakes up and doesn't immediately realize that it was a dream. When she woke up this morning, she called DH into her room and asked him to call the fire department! He asked why and she said so they could get "it" off of her. He questioned to figure out what it is. It was never entirely clear, but she was satisfied when he took the sheet off of her legs that was making her hot. I think where the issue started was a dream and then when she woke up she couldn't quickly shift from dream to reality. Once she was really woke up, she was fine.

 

[NW-Bound]

You should get a finger pulse oximeter, in order to make frequent checks. It is available at Walmart. My mother-in-law who has COPD keeps one on her nightstand.

 

[lhamo]

My mom was always pretty sharp, but she started having some pretty significant cognitive issues in the weeks leading up to her last hospitalization -- when we discovered her O2 was down in the 80s. She was on oxygen at home after that, but the fuzziness never quite went away. She did keep eating but it was a struggle because she couldn't taste anything, and near the end she also had trouble keeping food down.



She did manage to make it down to breakfast on her last day -- she was unconscious by late afternoon and passed just before midnight that night. She mostly kept going to meals because she didn't want her friends to worry about her.