A few weeks ago my 67 yo husband was taken to the hospital. Initially they said it was pneumonia but upon release they said he had heart failure and referred him to a cardiologist asap. In less that two days, he was back in the hospital, turns out he was overmedicated on bp pills. BP was 61 / 43 when they got to the ER. (Two different hospitals as the ambulance crew that came and got him the second time thought he was having a stroke and the first hospital's machine was down.) Thirty-six hours and he was back home.
He saw the cardiologist a few days later, agreed to do the procedures required for the surgical team to evaluate whether he was able to have the surgery. Found out that he has left and right side heart failure, needs a valve replaced (has for years and has always refused it) plus ongoing afib and some other surgical interventions were also discussed.
He saw his pcp the next day, was all agreeable to the upcoming procedures. So glad they have to give a visit summary or I wouldn't have it in writing that he was positive with the pcp about getting this done.
The next day they called to schedule the procedures and he said he never agreed to any procedures. I told him he'd signed papers, so then I read them to him, and he said that there was no way he would have ever agreed to that.
On Sunday 3/14, he told me to stop pushing him about getting surgery (I purposely had not said a word) because there is "no way anyone is sticking anything up my veins or cutting me open." I told him I agreed and then . . . I told him about the two different dementia diagnoses that had been given to my daughter and I about him 2017. I told him that I was mad that no doctor ever sat down, looked him in the face, and told him these things. I'm mad that he hasn't even seen his neurologist in over a year, she should be dealing with this, not me. And then I put it bluntly -- Maybe it is God's mercy to take him sooner because of his heart than to have him in Memory Care later with a good heart. When I told him all this, he did not get upset (totally out of character) but was actually relieved and said that knowing about the dementia diagnoses actually made sense to him and answered some nagging questions he's had. So we're good there.
He has also refused to follow up with the "heart failure clinic" that is offered by the local hospital. He says he doesn't need monitored, just let whatever happens happen. Okay, so that is fine for him, he is a controlling man and no one is going to make him do something he doesn't want to do, but . . . and now I am finally at my question:
What about me? (That sounds so selfish.) I need answers. I need to know what the future looks like. I need to know -- are we talking months or are we talking years? If he's giving up, is it worth worrying about his salt intake and his fluid intake or just let him have what he wants and avoid the tension? What are things going to look like as this progresses? When does he go to the hospital and when do I say no? (He is "no CPR, no feeding tubes, no vent, or other life-sustaining measures" on paper.) Do we ask for palliative care? Or home health services? Or hospice?
I've been reading the articles here about heart failure and it is all a bit overwhelming. As far as I can tell (because no one has told me) he is in Stage 3 (or C, depending on what you read). What is the prognosis for that?
We can all guess as to what will happen, but the doctor who just saw him can be more detailed with answers.
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.
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.
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.
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!
Thank you for all your kind and informative replies.
Have safe travels!