A couple months ago my husband decided to let his meds expire and not see the doctor anymore to get renewals. He was simply tired of his (lack of) quality of life; mobility issues, incontinence issues forcing him to stay home. The wellness coach at Cigna got wind of this and talked him into going to his Medicare wellness exam and encouraged him to renew his meds. Basically the doctor took one look at him and said "I want you in the hospital for overnight observation because I believe you're in heart failure" based on his extreme edema in both legs and feet. They were successful in getting most of the fluid off during his overnight stay and he was told to take the Lasix (which he had quit taking on his own because it makes him pee too much). We had a follow-up visit with the doctor several days after hospital and he said he wanted to have an echo done which we did. We had a follow-up to that this past week (in a rainstorm) wherein the doctor told my husband that he had moderate aortic stenosis and said if/when it gets worse my husband can go (90 miles away) and have a valve replacement. (He also doubled the amount of Lasix!) My husband also has moderate kidney disease. My husband is 86 and as I mentioned, has mobility issues. He uses crutches to get out to the truck and it is almost impossible for him to lift his legs high enough to get in (he has virtually no feeling in his legs due to neuropathy which is why he gave up his drivers license). Each and every trip out of the house is a potential fall waiting to happen. But yet the doctor wants to see him AGAIN in 4 weeks. In addition to all of this I believe my husband has at LEAST a mild cognitive impairment due to his online activity with strange women (see my bio if interested) and we have no long term care insurance, any outside help, no kids to help, etc. etc. I am the sole caregiver and I've been doing it, without a vacation, for nearly 7 years. Neither my husband nor I (age 68) has a good quality of life. I'm on Bupropion, I meditate and exercise daily to keep my stress in check but it doesn't always help. I have an issue with my left arm that I'm thinking of seeing that same doctor for and during the exam voice my opinion about prolonging a person's life when there is so little life to prolong. And yet I feel like that would be stepping over the line. I know it sounds harsh but I was actually hoping my husband WAS going to succumb to heart failure. I am tired and I would like to travel and do some fun things before I'm too old to do them. (There! I said it!)
Have either of you told the doctor no more treatment, no more tests?
Have you asked for a referral to Hospice?
Can you access a social worker and explain that your husband has had enough?
Sure there are medications and procedures that will extend his life, but at what cost?
Valve replacement...I think they have improved the procedure since my Dad had it done 30 yrs ago. But it still means having to be put under. With all your husbands health problems should he really get this operation?
You do have options. If DH ends up in the hospital and/or rehab have him evaluated for 24/7 care. If found he needs it, then tell them you can no longer care for him. He can be placed in a Nursing facility and you will become the Community Spouse. Medicaid allows for your assets to be split. You will remain in the home and have a car. You will be given enough to live on.
You may want to see a lawyer now, well versed in Medicaid. See how you can protect your share. With your husband talking to these women, he may start sending them money. You need to protect yourself. Even if its opening up an account of your own and putting half of you joint account in it.
Talking to atty is excellent idea - now before hubby has heart failure, stroke or some other issue. And DEFINITELY I would remove his access to money. Online fraud is a huge business for those people who pretend to be looking for 'love' as their income. Disgusting.
You might go with him on some information-gathering medical interviews: i.e. does heart surgery for an 86 y.o. really make sense? Not sure whom best to interview, but it certainly should not be a heart surgeon.
A U.K. doctor would be best because in their system they look at quality-of-life-years to decide if a procedure makes sense. Maybe you can set up a telehealth interview with a U.K. doctor.
But can you tell me what a U.K. doctor is??
Instead of talking to the drs, you need to be talking to hubby. If his choice is to stop the meds, he is making a choice to let his life play on out and possibly lingering in a state of not being able to get around at all. You cannot manage that care alone and there's no one to step in to help. No meds?- He needs to think about a NH to live out his days. No problem with you visiting all the time, but you cannot manage his care alone and you aren't ready to give up on living. Let him decide if he wants to try things to get moving again.
After he decides - then you can talk with a doctor to see if his medical needs meet the requirements for NH care. Be very specific about all the tasks you have to handle for hubby and be sure dr understand hubby doesn't want any more meds. It's possible he would qualify for palliative care (under the umbrella of hospice) instead of curative.
If doc says yes - apply for Medicaid NH and see how it works out. They do not take all of his income to pay for NH when one spouse remains at home. That is to prevent home spouse from becoming impoverished by his move to NH.
Best wishes to both of you.
Talk honestly to the doctor about discontinuing active treatment and ask for a referral for hospice. Interview more than one hospice provider. The one we selected was a not-for-profit company and they took excellent care of dad and the rest of the family.
May you both be blessed with peace and grace.
Lasix does, yes, cause frequency and urgency for some hour, and it does get rid of some of that excess fluid (fluid in the periphery (legs, abdomen) often means Right sided failure. If there is an inability to breathe easily or if the person needs to sit up through the night there is likely fluid in the lungs and some left heart failure also (more dire).
You do have choices. But they need to be informed choices. That means you need to educate yourself about Congestive Heart Failure, to understand the medications and other options and to make choices for yourself. You should also ask for a consult with a palliative care doctor and see if this might be a choice your husband would like until it is time for hospice. BUT be certain you understand the disease, the medications, the procedures, the consequences of action or inaction before making a decision that is truly one of life and death. I wish you the very best.I am 79. I would never at this point accept heart surgery or dialysis. I would, however, take medications, attempting to time them so that I get the "bathroom time" out of the way in the morning hours. We all come to a point where we make our own decisions; just be certain they are "informed decisions" and make certain they are fully in writing and a POA for health care understands our belief and choice, and will honor them if we are unable to make these decisions.
If any of the illness that he has if left untreated would lead to his death he can ask to be placed on Hospice.
If the doctor refuses he or you can contact Hospice yourself and ask for an evaluation. After discussing Hospice with you and probably discussing the alternative, Palliative Care if you choose Hospice they will contact your/his doctor.
Some doctors just do not listen to patients, of if they are listening they do not hear what is being said.
1) is this doctor his PCP or a cardiologist (sounds more like a PCP)?
2) does husband have dementia (if yes, sounds minimal for now)?
3) has anyone asked him what HE wants to do?
My dad had valve replacement done twice. In general it is good for about 10 years. His lasted 20 and he requested the pig's brother for the second surgery! The first one also included repairing an aneurysm on the aorta. The first surgery went well - he was probably mid 50s at that point and all was good. The second one wasn't as good - certainly the valve seemed to work okay, but from what I heard, they "lost" him for a bit when transitioning off the heart-lung machine. He was still younger than your husband, but in general much healthier. No high BP, no compromised kidneys, still quite mobile, etc. My mother tried to claim they gave him Alz, but he was having memory issues before that surgery. The anesthesia would likely have made it worse, esp given his age. He also couldn't take the meds they Rxed, for life. Bad reactions and cut until they had him on baby aspirin. He did have to take other heart meds later.
Anyway, a lot may depend on what your husband wishes to do AND what a cardio surgeon would do. There are doctors who will look at the whole picture and say nope. They don't want or need to lose patients - if they don't think a patient will do well in surgery, they may not agree to do it. These docs like to keep their "numbers" up. Of course there are doctors who will do it anyway.
This isn't a short fix and in many cases will require being on a heart-lung machine. With all his other issues, the complications of surgery and post surgery need to be considered carefully!
"Recovering from valve surgery usually takes most people between 4 and 8 weeks. If you had minimally invasive surgery, you may recover even sooner. Before you leave hospital, you'll be given detailed instructions for exercise, medications, ongoing wound care and resuming normal activities."
"Possible risks of heart valve repair or replacement surgery include: Bleeding during or after the surgery. Blood clots that can cause heart attack, stroke, or lung problems. Infection."
I recall my dad had to take a lot of medication and if he had dental cleaning/work, he had to take antibiotic before.
If this doctor isn't a cardiologist, in particular a cardio surgeon, I would highly recommend consult with one and ask ALL these questions regarding the surgery (risks, complications, etc), make sure the doctor knows about all his other issues, and what post-op will entail.
Personally, it doesn't sound like he would be a good candidate for this surgery, given his other conditions, lack of mobility, etc. But, if he gets to hear and understand all that this entails from a cardiologist AND the surgeon is confident he will do well despite his other issues, then it is his decision whether to proceed with the surgery or not.
Of course with mechanical valves she has now ben on coumadin 41 years and now I check her INR 1 or 2 times per week.
She has multiple other medical issues but her aortic and mitral valves are going strong.
Cruthces? Shouldn't he be using a walker or wheelchair? PT eval is needed.
I think you and husband need to explore the idea of hospice.
I think you need to see YOUR doctor to discuss your mental and physical health.
I think you need to see an eldercare attorney to figure out how to afford facility care for husband.
May I suggest that you get some other people to help. Try family, friends, members of community of faith, and/or paid help. You need time off to meet your own health care needs, to rest, and to nourish your own soul.
I can understand that your husband may not enjoy the lifestyle he needs to comply with in order to live. If he does not take his medications or follow his doctor's advice, it will shorten his life. If this is his desire, please make sure HE TELLS his doctor this. His doctor can make a referral to hospice if your husband is deemed terminal. Then, most insurance companies will pay for home health and nurse visits to keep him comfortable until he passes.
This communicates healthcare wishes clearly to the providers. If you find it confusing, discuss it with his doctor. We had a mPOA already for my mom, but we completed my state's advanced directives when mom came to live with me and we had that signed and witnessed and uploaded to her medical record in her PCP's office.
You should also complete one for yourself.
Also, if your husband was a veteran, he may qualify for help through the VA.
If your husband no longer wants to live, then seek hospice help.