What does the future look like for someone with heart failure who does not want any more medical procedures?

GrayGrammie, thank you for the sad but clarifying update.

Have safe travels!

Update: We saw pcp on 4/1. He told dh that he supported his decision to not do anything that would require sedation as he would most likely have diminished cognitive abilities each time that would probably not be recoverable, so it was good to have this confirmed. Then I asked what we are looking at in terms of time left. He said, "A year, maybe two years, but not multiple years." So now I have that answer. Dh asked about traveling and he said to do it now while he can, so we have spent Easter with my father (mom died last summer) who lives five hours away from us and he wants to plan a trip to see his WV family soon.

Thank you for all your kind and informative replies.

Surprisingly I think he will last a lot longer than one would imagine. It could take a couple of yrs, in my humble opinion.

As I read your post, one thing came to mind. It appears that the diagnosis of dementia occurred at the same time his heart health declined. Could his "dementia" really be because of his poorly functioning heart? Poor oxygenation would cause a person to be forgetful.

"And he'd rather die sooner than later, caring for his heart might extend his life but what life would it be with dementia?"

That IS a concern. The progression varies, but FTD "life expectancy ranging from less than two years to 10 years or more. Research shows that on average, people live for about six to eight years after the start of symptoms but this varies widely."

Given the list of behavioral changes often seen with FTD:

"The most common signs of frontotemporal dementia involve extreme changes in behavior and personality. These include:

Increasingly inappropriate social behavior
Loss of empathy and other interpersonal skills, such as having sensitivity to another's feelings
Lack of judgment
Loss of inhibition
Lack of interest (apathy), which can be mistaken for depression
Repetitive compulsive behavior, such as tapping, clapping or smacking lips
A decline in personal hygiene
Changes in eating habits, usually overeating or developing a preference for sweets and carbohydrates
Eating inedible objects
Compulsively wanting to put things in the mouth"

It makes some sense that he might make these "decisions." Other than trying to talk with him during more "lucid" moments, the condition itself is likely going to impact what he decides to do or not do. In more lucid moments, some treatments might be more palatable. For the most part, at this point it is his decision. Even with dementia, we can't force anyone to do something they refuse to do. Even more advanced cases. You can try to reason with him, and perhaps convince him to try medications, which might help make him feel a bit better for now. It won't cure the issue, but may make him more comfortable.

https://www.medicinenet.com/how_long_can_you_live_with_heart_valve_disease/article.htm

If you have been given the exact terminology, this page may be helpful. As with any condition, there are no real hard and fast rules about how long one may live. Based on the replies so far, you can see how some were told X months and lived for many years. In other cases, one may be told it will be years and it isn't. The numbers they give are averages, so there are always the outliers.

Some of the conditions they've listed on that page do show some extended life, with management (no surgery), but often there is better outcome with surgery. In his case, you'd have to weigh the anesthesia issue that might impact him because of the FTD.

The same kind of time frames apply to many forms of dementia. He is, sadly, between a rock and a hard place. Seems like the "best" outcome for both conditions might be around 10 years after onset. However, one or the other or something completely different could change this. If you can consult with the neurologist and with the cardiologist, you might be able to get a range of life expectancy from them, but it's based on averages, so plan for the worst, hope for the best. We don't have a time clock built in, so none of us really knows when the "end" will come.

If possible, during one of his "better" moments, try a discussion like you had on 3/14. See if you can determine why he refuses any treatment. You did mention he wanted to "going home to be with his real family again.", so this may be his rationale. Maybe you can at least convince him to take non-surgical interventions, which won't extend his life, but may make what is left more comfortable for him. Whatever his decision, ask him to make a list of things he would like to do in his remaining time. Then try to accomplish those that can be done. You might want to make a list of your own - traveling by RV later is okay, but perhaps you need some "bucket list" items for yourself for now too.

It is a hard choice - surgery might give one 10 more years, but dementia might steal your mind before then! Having dealt with dementia in mom, I think I'd choose non-surgical treatment that might make my remaining time better vs surgery to extend health into lost memories. Then go for broke doing anything I can!

It sounds like you need to have some serious discussions with your husband, if he is determined not to get treatment for his heart condition then you need to be prepared to move forward with your life without him. Consult a lawyer to help with getting all the papers in order and signed.

I hope you have all his papers in order-will, POA, medical POA, living will, DNR, etc. Does he have life insurance, where is the policy? Are you a co-owner on your credit cards, do you have credit established in your own name? Are you a co-owner on any property including vehicles. Who is in charge of finances and paying bills? Does he have preferences for his funeral and burial? Is he eligible for any military pensions or funeral services? What are your/his retirement finances? Will it die with him or can you inherit it? Does he have beneficiaries assigned to ALL his financial accounts?

Most important are you prepared to take over the financial responsibility he may have been doing?

PBS recently aired a program called "Fast Forward" about preparing for aging and ill health that everyone should watch. The website has links to workbooks that help you with the paperwork.

BTW, tell him that my 91 year old mother chose to undergo both a stent and an artificial heart valve surgery with little hesitation.

My wife, who is 61 now, had a tissue valve replacement of both aortic and mitral valves in 1976 because of CHF In 1980 she had to have both replaced with mechanical valves, thus needing Coumadin every since. (Rheumatic Fever valve disorder)
In 2005, her CHF was getting hard to control and she was considered for a heart transplant. At the time(2005), due to liver disease, the drs said she would need both organs, heart and liver, and sent her home with conservative treatment (diuretics & BP meds) Somewhere around 2010 she was diagnosed with chronic A-fib.
She did reasonable well until a stroke in 2017. In and out of rehabs, SNF, and LTC facilities, she came home to stay in August of 2020. She is still on diuretics for her CHF and has to be hospitalized occasionally for IV diuretics and frequent lab work until her fluid level is back under control.
So, 45 years of CHF and still ticking.

Every situation for every person is unique. There are no guarantees for anyone ever. Once you have lived through end of life care with someone you realize that the doctors are only guessing. You also learn that lots of their advice and surgical recommendations are probably not the best.

Both my parents were at one time or another diagnosed with dementia after taking some ridiculous “memory” test that I would have had a hard time passing if under stress. Both were lucid until the end.

My uncle who was supposed to live 3 months with cancer made it 17 years. My grandma was told she was imminently -any day- dying of congestive heart failure (age 93) but lived to 98. My mom (heart-lung-and kidney failure simultaneously) was a hospice patient who was released from hospice because she got better.

I respect your husband’s wishes against medical intervention. A lot of those surgeries help one thing and hurt another.

We are not supposed to live forever. It would never work out.

Just love him for today.

Each person is different, however, more EMS visits could be in the future. I don't know if there becomes a point where someone is forced to undergo treatment if they dont want or how many EMS visits for the same reason before if ever will end up costing the recipient money for transport or care. It is going to be a bumpy ride, so buckle up.

Imho, this is so common for elders to go to the hospital, they are then advised to see their specialist(s), but they fail to follow through. If they don't ever see their specialist, then it may be a cycle of EMS rides.

I think all of your questions should be answered by the cardiologist who saw him. They know what percentage of heart working ability and the outcome of doing nothing. Every thing you have listed are valid question to ask so that you will know what to expect. Including - let him eat whatever he wants?

We can all guess as to what will happen, but the doctor who just saw him can be more detailed with answers.

I imagine part of this depends on his level of understanding and competency. If capable he certainly has every right to make his own decisions about his health care. I believe with reasonable efforts, and understanding that everyone's medical status is a bit different, he could carry on for a long while. Partly it will depend on how motivated he is. Watching fluid intake, sodium, getting some moderate exercise with the MD's blessings...Too often these days the hospitals are in it for the $$ and will pass you on to the next department who will want more tests etc..They don't make it easy but WE always have a right to say no. Maybe a chat with the neurologist would be helpful, if not with all of you than you and her.

My grandpa lived to be 98 years old. He was diagnosed with heart failure, and it got to the point where he couldn't even eat or he'd feel like he was choking to death. He started having trouble getting enough oxygen, got on an oxygen machine, and died only months later. In the care facility, he had refused to eat and we had to watch him slowly die. They wouldn't put him down to end his suffering, which I find to be needlessly cruel. Because of this experience, I absolutely despise the American healthcare system in its entirety. They don't plan out what they'll do once people start living past their usual lifespans. If you want out, the only way is to kill yourself or die a slow and painful death, while they drain your children of their inheritance. That's not right.

Perhaps he knows what is wrong with him and is aware of all the aspects of what is going to happen to him. Does he want to end it all? Perhaps it is his wish if he knows it or not? Let him make the decisions. It is his wish and his life. Go with the flow and be there for him. I say let nature take its course. You still have a life to live and you better hold on to it while you still can.

Hello graygrammie.

i may have missed this but want to make sure you consider getting long term insurance.

Im paying for both my husband and me. it costs a lot and im working to be able to afford it since my social security is not enough to cover both medicare and the insurance. But if i cant afford insurance how could i possibly afford facility care !
(My husband pays my other bills.)

insurance covers only assisted living or skilled or memory care ... not independent living. Youll be on your own for that.

it is so nice to know i wont have to rely on my children to pay for facility care. You can have the same assurance.

Dear Graygrannie,

I have been through and am still going through similar issues. My LO had the beginning of dementia when he had an heart valve replacement. He was receptive to the surgery and recovered. The dementia doesn’t go away but progresses. Because of the progressive dementia and his frequent falling I was unable to care for him at home even with home care. He went to memory care and after less than a year the memory care facility informed me he needs 24/7 sitters. I did a calculation $6000 monthly for facility $20/hr for sitters comes to well over $200,000 a year. Out of luck we found a wonderful SNF and with med adjustments he’s doing as well as can be expected. Your LO is relatively young . The pcp told me dementia could last up to 20 years. So your husband seems to have enough presence of mind to have made the right decision regarding surgery. If it were me instead I would eat all the ice cream I wanted, go places I want to, visit who I like, don’t visit who I don’t want to and most important for you is to get all affairs in order and keep records. Enjoy every minute together.

all of my best wishes to you.

Someone with CHF can live for several years. They may live longer and do better if they co-operate with lifestyle modifications and medication, but it the patient's choice to accept or decline treatment. Surgery might address your husband's valve problem, but it will not cure the heart failure and he certainly has the right to decline undergoing surgery if he so chooses.

My father lived with CHF for several years, but he was compliant with medications and mostly compliant with lifestyle modifications. He died at 92 of other causes.

I would say ask his doctor on the side, without your husband there, if possible. I would also say if he’s really giving up, to call a hospice agency. Even if your husband doesn’t go with them, they can probably give you some counseling about how to deal with this. Or refer you to someone who can give you counseling, so that you can be prepared. If a patient is cooperative with the diet and meds they can live for quite some time. But it sounds like your husband doesn’t want to go that route. Best of luck to you and your family.

Not taking time to read all answers, I will make a few brief suggestions. Let your kids and any other close relatives know his decision. You don't want them blaming you for his "premature" death. Don't let them debate this with you. If they want to discuss it with him they can, but you don't have to bear the brunt of this. You need to plan for his eventual demise. Make sure you will be protected fiscally and have knowledge of and access to all financial resources. Lastly, dementia can vary from day to day. If his children convince him to have surgery, can you be supportive of his changed decision? The surgery might lead to death or accelerated incapacity, but it might also give him a few more good years. If his dementia has a cerebral vascular component it might even improve somewhat. No one knows. Prepare for the worst, pray for the best, and take care of yourself.

MIL diagnosed with CHF at age 90, also had mild dementia, did not have any heart procedures and lived to 97. Could probably have lived longer if she had exercised. Watched diet until 95, then eating habits changed and she ate whatever she wanted.

I'm so sorry for your situation. You are not selfish and you have every right to say, think "what about me?"

Your DH is young to give up on life. My father in his 91st year ended up in the hospital for CHF where he was also diagnosed with Afib, a leaky valve and something else that I can't remember; he also had alzheimer's. Of course at 91 there was no talk of surgery. At discharge they sent him to rehab, but when he got home he said he was done, no more rehab, no nothing (he had been wanting to die for a couple of years). At his cardiology f/u appt dad advised the dr of his desire not to do anything else. I asked about hospice and the doc said it was an option. Dad was amenable to hospice, the hospice provider was wonderful and took good care of dad. Dad was taken off all meds, except for those to keep him comfortable. One day while or shortly after mom had visited dad he just peacefully died. He lasted about 7 months on hospice.

Check with one of his doctors re hospice and if it is an option contact for evaluation. If you get a good hospice provider you will find them a good support system not only for your husband but for yourself as well as the rest of the family. Lean on them and let them help.

Does your husband really want to die or is he depressed and just doesn't care? Depending on his answer can make a difference in getting treatment.

My mom died last year from heart problems. She had a valve replacement approximately 9 years earlier. She got along well with the surgery and recovered from surgery fairly well. Not cured but her quality of life was pretty good. She had about 7 good years. She was diligent about all of her care. She was a fighter and wanted to live. The last 18 months she was very short of breath, fluid retention. She became very frail. She died very quietly at home with family.

@greygrammie...
There really is no time frame when it comes to Hospice. My Husband was on Hospice for almost 3 years.
As long as there is a continued, documented decline. They can remain on Hospice
As long as the person is no longer getting treatment for the condition that made them eligible for Hospice they can remain on Hospice.
Medicare does have guidelines and recertification is necessary.
This is one of the reasons that documenting day to day changes can be important.

*Personal note about Hospice. There are 2 types For Profit and Not for Profit. In my case the Hospice I chose happened to be a Not for Profit one. I could not have been more pleased with the help, education, supplies and equipment. As I mentioned earlier interview a Hospice just as you would any other health care. AND if you feel you or he is/are not ready for Hospice ask about Palliative Care.

With dual-sided heart failure, both sides of the heart do not "pump" well. When a "pump" doesn't work well, fluid backs up. One side of the heart, collects blood from the body and pumps it to the lungs to pick up a load of oxygen. When this side fails, fluid builds up in the body - especially the feet and legs. Those lower extremities will become swollen. The other side of the heart collects blood from the lungs and pumps it to the body. When this side fails, fluids build up in the lungs - mimics pneumonia. If his heart valve is compromised, blood that normally is pushed through the "doors" of a chamber of the heart can flow "backwards" since the "doors" don't close properly. This causes similar problems as heart failure but usually not as severe.

With stage 3, or C, heart failure, you can expect tiredness and weakness. Any exercise or activity may take longer to do and he won't be able to sustain efforts. Surgery may be able to reverse some of the heart problems so he could have more energy and less fluid build-up. The best treatment for those who opt out of surgery is following heart healthy diet, limiting salt intake (depending on medications), taking diuretics (pills that make a person urinate) and limiting his fluid intake to 1 quart of fluids per day. You will be able to see if he is on the right track by keeping a record of his weight. Usually daily weights are done in the morning with same clothes (or no clothes on). His weight should stay the same. If his weight trends upwards, his energy goes down, and he has trouble breathing - he is holding onto too much fluids. In this case, he may need hospitalization for more vigorous removal of fluids (usually with medications) and oxygen. Life expectancy might be as long as 5 years.

If his congestive heart failure progresses to stage 4. or D, he will have a dusky color because he will not by oxygenating well. He will have very little energy and exerting himself will most likely result in chest pain. In this stage, life expectancy is less than 1 year.

What you need to consider:
1 - Visit lawyer who deals with family law. Make sure your husband has a will and an advanced directive. The advanced directive tells others what kinds of treatment your husband wants if he has a medical problem and can limit CPR, artificial breathing, IV's for medications or fluids, whether or not to insert tubes for medications, fluids, and/or nutrition. If he does not have an advanced directive, medical staff are required to do everything to "bring him back" or to keep him alive. While you are at it, get your legal documents taken care of: will, advanced directive, power of attorney for medical, and power of attorney for financial. This way if you are sick or in the hospital, your affairs can be taken care of by the very reliable person you name in your powers of attorney.

2 - Talk to your husband's cardiologist and/or primary care doctor. Ask him/her to be honest with you about your husband's life expectancy. If he is not expected to live more than 6 months, the doctor can prescribe hospice. Hospice focuses on comfort care and not curing disease. Basically, you let your husband eat and drink what he prefers and not worry about what it does to his health. The focus is on his comfort and relationships. Most insurance will pay for hospice. You can get home health aides to assist you in caring for him and visits from RNs to manage his comfort levels with medications.

3 - Start making plans for life after your husband passes. This may sound callus, but you need to review what your finances will look like without him. Also consider if you can afford or want to stay in the same home. What activities or relationships do you wish to nurture when it is just your needs to consider. I recommend highly joining GriefShare, a group that usually meets weekly to share helps with each other who are suffering the loss of a loved one.

GtayGrammie, following up on CountryMouse's answer below;

Is the cardiologist aware of his dementia dx? Would your husband relent and allow you to have input if the doctor said he (the doctor) needed you there?

As to my comment about suffering, I meant that honestly and without irony.

Your husband seems to hold onto a lot of old fashoned ideas, and I'm wondering, for the sake of getting inside his head, if this is one of them.

When I was young, I was told that awful suffering at the end of life was God's way of shortening your time in Purgatory. My mother certainly held that belief for a long time. Imagine my shock and surprise when, late in life, she made me promise that she wouldn't suffer in the end.

If he had his valve done back when, his life would have been so different. My MIL was a fairly active woman. But she complained of being tired all the time. Once she had the valve replacement, again 30 + years ago, she said she felt like a new person. She was 65 and died just short of her 92nd birthday. Still independent. Never having to have the valve replaced. She did not die from heart failure.

Oh, so sorry about this.
Because it is me responding..you will know what I am about to say.
Contact Hospice. Interview a few in your area. Just like selecting any health care provider do your research.
You know that with dementia any surgery is not a good idea. The anesthesia and dementia do not go well and he may not fully come back to pre-surgery cognition.
With Hospice you will get all the help and support you need. You will get the equipment that you need, supplies you need.
Support HIM in his decision. In turn we will help support YOU.
((HUGS))

GG,
I’ve read all of the responses. Such a hard season.

Watching my mother suffer the terror of dementia, I personally wouldn’t choose surgery for her, if she faced a heart issue. I would consider it a way out of the suffering from a deteriorating brain.

As your husband is refusing treatment, perhaps it will be a way to avoid that torture-for you both. Of course, this is just MY thinking.

Praying for wisdom for you both.

Hugs to you!

I can't imagine how difficult this is for you. My dad is much older (93) and he wants to live very much and says he wants them to find a fix... but he also doesn't really "want" another heart surgery or even an angiogram. He has so many other issues as well. And it's still really hard not to tell the doctor to do an angiogram and "fix him".

If it was my husband it would be 1000 x worse to watch. At some point you aren't going to be able to care for him and I guess, while he still has lucid moments, you should start thinking about where you might have him live and how you want to care for him.

I can truthfully tell you that its better to move him sooner than later because change for dementia patients makes the move so much worse.

My heart goes out to you. Good luck

GrayGrammie,

I am so sorry that you are in this situation. My goodness, I would be a nervous wreck in your shoes!

I will pray for the best outcome possible for you and your husband.

I hope he realizes how special of a wife you are. You want what is best for each of you. That is completely understandable.