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

GG, are you your DH's health care proxy or on HIPAA forms?

If you are, you can certainly call the cardiologist and ask all these questions.

Does your husband allow you to accompany him to doctor visits? It certainly sounds as though he needs the support.

I don't think you sound selfish at all. And yes, I would ask about hospice and palliative care eligibility.

You are NOT asking a 'selfish' question at all when you say, 'what about me?' You are half of this team and you matter! Your life is being altered here with every decision your DH makes or doesn't make, so of course your input is important! He should take your feelings into consideration as you BOTH travel this path, too, because you're on it TOGETHER!

Like Barb said, you need to speak with DH's doctors about the questions you have and about his prognosis w/o medical intervention. The questions you have about salt intake & fluid intake are valid; if he's refusing treatment, why bother worrying about those things, even if it hastens his demise. If he's strong willed and has dementia, he's unlikely to follow YOUR dietary instructions ANYWAY, let's face it. So get all the 411 you possibly can from his cardiologist, and go from there.

Wishing you the best of luck with a difficult situation. Sending you a hug and a prayer for strength, too.

The future as it stands for him now looks grim. However, there are no incurable diseases...only incurable people.
If your husband is willing to make positive changes he can and will recover
In medical terms 65 to 75 is 'young old age'..so he is not as 'old' as you imagine.
However, the body is a self healing miracle.
You might consider Dr Christophers Hawthorn Syrup to strengthen his heart. Cayenne pepper...and drinking & cooking with only distilled water
2 tablespoons cold pressed wheat germ oil x 2 times daily
You can find the products on Amazon
Read about by googling Benefits of...Despite drug company owned websites claims of side effects...there are no side effects when foods are used in their 'wholesome form"
goggle "hawthorn for heart disease dr christopher legacy"
You will find extensive knowledge there for each of the foods I suggested
I have seen people who had been advised they would die very rapidly unless they had eg. pacemaker, extensive by pass etc
They are now healthy productive citizens. Nature will take care of the problems
If the person is willing.
Keep your head up

I hope you’ll be able to contact your husband’s cardiologist and get many questions answered. My dad died from end stage congestive heart failure. Several years prior he’d had his aortic valve replaced. It was a very temporary help, despite much optimism after surgery over time things only continue to worsen. CHF is slow and insidious. It makes fluid up and leaves a person panting for each breath. It zaps energy and makes an active person inactive. My dad did many trips to the hospital to have fluid removed, most often by IV Lasix. One time 16 pounds of fluid was removed. It’s a very temporary fix and the fluid returns again and again. Dad wouldn’t change his diet and the cardiologist didn’t much argue with him, they both knew where things were headed and my dad felt at his age he’d earned the right to eat as he pleased. I’m pretty sure it wouldn’t have mattered. My dad had wild swings in BP, very high at times in stroke territory and other times so low he’d nearly pass out. Sorry to be so negative sounding but CHF is cruel and relentless. Last summer my dad had another hospitalization and decided to come home on hospice. After years of CHF he’d had enough and died in about a month. I’m sorry you’re facing this, we didn’t deal with dementia, can’t imagine how all that would complicate matters. Reach out for any help you’re eligible for and practice self care. I wish you both peace

If you are his POA for health care, how is asking for clarification from a doctor "going behind his back"?

Does he have someone else he'd rather act as medical POA?

Reply showed up in the wrong place.

Ah, I see, GG. I had forgotten about that.

I think maybe "submitting" in this situation means doing nothing and letting nature take its course.

It would, however, be a shame to suffer death from CHF without hospice. My mom's pulmonologist warned me about that. Morphine is a great blessing in the end.

Or perhaps he wants to suffer. There are those from the old "Hellfire and damnation school" who feel that way.

You might bring that up for conversation, how much does he want to suffer in the end, and would he like to be connected to hospice.

Not having a valve replaced will not be helped by strengthening the heart. The Valve will continue to weaken until it doesn't work anymore. My Dad had two valve surgeries at 65 and 67 and pulled thru both. He also had a triple bypass why they were in there. Now each valve does something different and I don't remember which is which. But with Dad they put a Dacron valve in the first time and the valve clotted shut. This was not good because its the one that needs to open. They then went in and put a pig valve in. Again he did great but unlike the Dacron one that was suppose to last 20 yrs, this one only lasted 10 yrs. Which Dad said was OK because he wouldn't last 10 yrs. He pasted 12 years later and the valve was still good. He died from something else.

My question to the doctor is what happens if the valve doesn't get replaced. For my Dad, he would have died. I think at this point ur husband is with it enough to know what goes into having this surgery. What you need to do is worry about your future. Make sure everything is in order. That you are taken care of.

GrayGrammie, do you know which valve? (My husband had a "valve job" [aortic] at 55 and while it was no walk in the park, he was fine.

My MIL recently had her aortic valve done in a minimally invasive procedure at 91 and is doing great.

I've done a little online searching and I think you may be able to find some better answers on forums specific to heart failure, this is one

https://heart-failure.net/forums/

but there are several others. Although the focus is understandably on positive treatments I'm sure there will be many there who have the kind of answers you are seeking.

This absolute volte-face in a 24 hour period, when he told his PCP one thing one day and then the very next day denied all knowledge of it, is a puzzle. It also makes your responsibilities as his POA even harder, because you don't have his clearly established wishes to go on. Was he deferring to authority? Was he just agreeing to get out of there as fast as possible, without actually listening to a single word?

If he weren't your husband but you had all the information about a person that you have about him, using your best judgement, would you say that that person is competent to make these decisions, or not really?

Are you able to put searching questions to the cardiologist, such as what estimate of quality of life would be reasonable if your husband were to go ahead with the recommended treatment?

I think you're right not to confront your husband with these issues yourself, but there remains the question of whether you want to lean on his clinicians to do so. Thinking it through: I am the PCP. My patient appears to understand the plan and to agree to it. Next day, my clerk tells me, he states he never agreed to any such thing. What do I do? Do I ask him to come back to my office and clarify his wishes? Do I take his bare word for it? Or what?

I'm so sorry you're having to wrestle with this (and with your hands tied, what's more). It seems terribly unfair.

But I don't think it's possible to get the answer wrong, or right; you just have to do your best with what's available. My Dad dropped dead at 71 from myocardial infarction (classic heart attack). My mother was diagnosed with LV cardiomyopathy (classic heart failure) in 1995, and died in 2015 at the age of 90. Even if there had been any choice about it for either of them, and having been down both roads, I still couldn't say which fate was preferable.

A bit overwhelming, indeed. Hugs to you.

Yes, basically your husband has accepted that his heart will likely kill him, and sooner rather than later. And he has chosen palliative care, without further testing and procedures. This he should inform his doctor of. If POLSTS are legal in your state he should do one and it should hang in your home clearly visible so that any EMTs don't attempt to bring him back from cardiac arrest. His choice would be my own.
I think that you should refrain from encouraging him to have heart surgery. At this age this complicated surgery OFTEN goes wrong, and as a cardiology nurse for many years I can assure you of that. Clots are often a complication as they struggle to give and control blood thinners; there can be hemorrhages in brain. There can be strokes. And death or debility can come rather than valve replacement. If your husband has atrial fib there is more wrong with the heart than the valve so that the "electrical signally for a beat" (as an easy way to explain) is not functioning well as well as the mechanicals within the heart. Ablation sometimes works for this, and much LESS OFTEN than they will suggest to you it does.
With Palliative care the heart failure will be treated with diuretics to help manage fluids in lungs, in peripheral areas. This will require testing to make certain that potassium (which is washed away with diuretics and which is crucial to life) levels remain stable. Other testing would not be done. Your husband should explain to his MDs that risk of surgery is worse to his mind than allowing things to proceed as they will.
Heart failure means essentially a failing pump. Failure of left heart would mean difficulty in clearing fluids from lungs, more dangerous than right heart failure which will result in some abdominal congestion, swelling, and pitting edema in the feet and legs. Some people get what we call "Flash Pulmonary Edema" which can hit lungs quickly and severely.
Hospice isn't called for. People can manage heart failure for some time with medication and blood monitoring. But Palliative care seems to be where he is at. Do discuss with him if this is his final choice; then see a good cardiologist and get your staging information, and the way forward.
I am very sorry for this diagnosis. It is dire indeed. Informing yourself with internet on what to expect and what the diagnosis means is a good thing, but once you know the basics, stop scaring yourself to death with it. Some people manage with medications well.
Learn to do blood pressure at home. One of the most common admissions on our floor was plummeting BP. Because it is measured in MD office it is abnormally high; they give medications and it goes low low at home and the patient is down on the floor with their first trip up to the bathroom.
I wish you good luck in managing all this. If you have read "complications with valve replacement" you will see many; they may make you feel somewhat better about your husband's choices. While at 67 he sure is younger than we would want him to be, but I would, were I you, honor his decision, give him time to think, and discuss honestly what his choices mean for you both. Try to take this a day at a time. Don't let doctors rush you out the door; don't let doctors bully you. Despite their sometimes wrong ideas that they are God, they honestly aren't. Remember that much depends on the specialist you visit. As my Dad used to say "Surgeons cut cut cut cut." That's the facts. It is what they do. A good cardiologist will help you and your husband manage the facts of his condition.
I surely do wish you the best.

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.

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

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!

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))

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.

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.

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.

@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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.