Has anyone on here had to make the decision whether you would or would not agree to your spouse having open heart surgery as recommended or any other type of major surgery that requires hours. My husband is 63 and has had one major heart attack and his doctor is doing tests now to determine if he will recommend open heart surgery. I am beside myself on how to handle this.
Does this fall in the in the situation of "comfort" care. Will he be much worse after 4 or 5 hours of surgery?? I have searched earlier blogs and cannot find anything that is as specific as this. Where do I turn for advice...what do I do...I can't handle this...
judith my own personal opinion would be if hes diagnosed AD and entering later stages i would chose comfort care at this point. you may qualify for hospice then. there is some thought that any major surgery can cause setbacks. anethesias have been under the scrutiny. there are some better than others when chosing surgery. there was some topics about it here i think. i will see if i can find it. sunshyne has offered some input i do believe on that. drs always have to offer the best remedies for prolonging life and it would be unethical to have them tell you not to go with a surgery if it would make him function better. but then you must decide if its what your spouse would want knowing he has an incurable deadly disease. its a very hard choice to make, most of us here if we have to make this decision think it would be best to do comfort care if its an option. others may chose to go ahead and get the surgery if they are pretty functioning and early in the disease. if you have family maybe a discussion to see how they feel? i wish you the best in your options! divvi
Judith-open heart surgery carries the possibility of stroke for most folks. The recovery period is long and painful-especially if veins need to be harvested from the legs. Is just stent placement an option? Yes-you do have some difficult choices ahead.
Judith, I think the main thing to consider is what stage of the AD he is. If he is still early stage and high functioning and can understand the surgery and the restrictions that will occur after the procedure and can cooperate then I would probably opt for the surgery.....but then again, I have always said, what are we saving them for...? End stage???
I don't think stents is an option because he had two put in 3 years ago. I was just so floored with this information from the doctor I couldn't think of any of the right questions to ask. For me to be speechless is something new. The major heart attack he had was a "silent" attack but a major attack with damage to 1/3 of his heart. He has been going down hill faster then usual for the at least 6 mos. and walking so slow. I consider him a stage 6. Six months ago his neuro did an EEG and he had the same type of brain damage that a person with epilepsy has but he has never had any convulsions.
Wow, this is a very personal and difficult decision you have to make. There is not a right answer but the answer needs to feel right to you.
For me the answer is clear, I would not allow open heart surgery on my DH at stage 6. I sometimes think doctors are so programmed to "fix" what is wrong that they fail to look at the whole picture of the patient.
I would look at hospice and comfort care to keep him has comfortable and functional for as long as you can.
Judith, as others have said, this is a difficult decision. Did you and your husband discuss similar situations when you made your advance directives? Do you know what he would want? When I read your original post, I thought you were asking if the surgery could be considered comfort care. I don't think of it that way. When I think of comfort care, I think of keeping the patient comfortable and free of pain without doing things intended to prolong his life.
Please keep us posted as you talk to the doctors and make a decision.
Judith, if he is stage 6, there is the good chance after surgery he would be in the final stages. And for what? I base it on others testimonies of the difficulties after their spouses had anesthesia. As others stated it is no 'walk in the park' recovery from major surgery even for the healthiest of patients. I would not even contemplate it. I would rather my spouse die sooner of a heart attack then linger for years with this disease.
I will be praying for you. You have a very tough decision to make and if you have family consult them but remember unless they have accepted this disease is fatal, they will often want to do whatever to prolong life. Did you and your hb ever talk about this type of situation in your earlier years?
Thank you all for your responses. I really appreciate your interest and concern. I wish I knew someone or could hear from someone that has direct knowledge about the affect major surgery has on a person with Alzheimer.
Judith - do a search of anesthesia and you will find others experience. Some spouses took a few weeks to come out of the fog and gain ground, but others never did - they just kept going downhill.
There are several threads here and if you google Az and anesthesia you will find many links. I myself had a close friend with about stage four. Moved to an ALF and had her own apt and microwave and played word games with others. shortly after we visited. She fell and broke her hip. After surgery to set it she went to rehab and then to a n. H. and when I went to see her she was in stage six no question. She lived for another two years in the home until a stroke killed her. Never recovered from the surgery.
There are many such stories on here. I would never want any planned surgery on my husband.
"My mother was diagnosed with dementia a couple years ago prior to having emergency open heart surgery. The surgeon indeed saved her life, however he told us that this could also progress this disease. And it has."
The others have offered interesting points of view and should be carefully considered. Were my DH facing this today, I don't know what we would choose to do. However I'll tell you our experience with 3x bypass surgery. In 2005 DH was complaining about how his legs would fatigue during golf..9 holes was all he could do. First a doppler ultrasound was done and it showed blockage in the lower legs. So DH was sent to a cardiologist who did an angiogram of the legs,and heart. The issue with the legs would not be addressed until the heart was checked out to ensure he could withstand the legs procedures. So the result of the angiogram was he needed by pass surgery. He was operated on the 14th of Feb..yep Valentines Day. The surgery was hard and recovery painful. And just a week shy of the 3month period, he became breathless ( he never had that problem before) and a trip to the ER ended up in about 3 l of fluid being removed. The following week he went in to the cardiologist for a followup and the lung was collapsed so he had a chest side procedure which is painful beyond belief. Three days in hospital and a week later the stitches were taken out, but the followup xray showed fluid building again. So he was admitted for thoroscopy (sp) and pluerodisis. The doctor went in to find the hole thorough which the fluids enter and then sprayed talc to seal it..things went ok the first day and then for 3 days it was touch and go. He finally recovered from the procedure but he was never the same again. It was after all this that I first noted memory issues which I was told is common after heart surgery..but should resolve. Well I just found my journal from that time and guess what that is when his memory problems began and proceeded to get worse. I just thought it was from the surgery...so didn't think much more about that in terms of AD. But as time went on the memory issues did not resolve and at the same time he was able to continue to do normal things...but I noted I was frustrated at having to repeat answers..or noted he seemed mystified...or didn't know howto work something or didn't turn the stove off... Then in 2007 he had a small TIA in the pons the type of which is related to hypertension in particular. Then I was told that with a TIA memory issues can pop up but should resolve..all I saw was more breathlessness and memory slips. So you have a hard decision to make. If his state is early, it may or may not affect his condition. If he should have complications, the ones I listed are not uncommon, that will be another consideration. If you have a neurologist maybe you can run this issue by that specialist to help make a decision as to what is in the best interest of the patient. All surgery and anesthesia carry risks..even the "twilight' stuff given for colonoscopies. In my view, my husband's surgery was a direct link to his memory issues. On the other hand, had he not had the surgery his life may have been cut shorter even though he was starting to show signs of AD yet managed to have a balanced life and in many ways is still ok today. He has lots of his faculites intact, just memory fails here and there. It will just get worse is all I know for sure.
Check and determine if your doctor would NOT replace the stents. I know is IS done in Houston area hospitals....and Houston is the mecca for Cardiology procedures... Fred is the name of one of my friends, and his wife said that the doctor told HER that more than likely, the initial stents would need to be replaced in 3 years...and it was almost 3 years to the date when he experienced some difficulty, and sure enough, had to get them replaced. So ask the question...if you haven't already.
JudithKB - I have posted on this topic (under another name). My husband (stage 5) has a mitral valve prolapse (no big deal) AND a Thorasic Aortic Aneurysm (a VERY big deal). His heart has been beating in A-fib for over a year (400-600 beats per minute, 10 times faster than it should). His heart is "toast". Our Neurologist did her thesis on Anesthesia in Dementia Patients, so we had a great informational source. I spoke with her at length, and she told me the risk of stroke is increased in dementia patients, but the real risk is will they or will they not be at the same dementia stage following pro-longed anesthesia. Although there is no hard data...her experience is they decline (some significantly) following anesthesia. I explained to her that because DH has AD, is it worth the risk of him ending up in a diaper unable to care for himself, or should we take a chance and NOT have the surgery his cardiologist prescribes. She said to me "I need to say these words to you. If your DH doesn't have the surgery to fix the aneurysm, and it leaks or bursts...he WILL die" I explained that even knowing this, we have decided as a family to not have the surgery, because if the aneurysm bursts tomorrow, he won't have to live another how many years with AD. It's almost a blessing in disguise. She told me that, confident that we know all the facts and STILL don't want to have the surgery, she supports us 1000%. I know there are many who will totally disagree with my decision, and I respect that. Just as I expect them to respect my decision for no surgery. Believe me, this has weighed heavy on my heart for over a year, but I am comfortable with my decision. You have to make your own decision based upon the facts, as you know them, just as I did. Best of luck my fellow journeyman. I hope this gave you a little insight from one who has been there.....D
Thanks so much for all this information. Nancy, you gave me great information to ask the doctor since my DH had the stents 3 years ago. I did do the search here and basically all I found was a long thread about medical research comments. When I first found out my DH had AZ and I was told about "comfort care" I thought that if I ever had to make that decision regarding surgery I would just say...No...but, now that it has become a real possibility I just don't know what I will do if it comes to by pass surgery.
our hearts weigh heavily having to make life/death decisions for our spouses. but we are the only ones close enough to them to know or guess what they would want if they could tell us. blossom indeed it was a brave decision. divvi
JudithKB: Others have expressed how personal and difficult this decision is. I would only say that it is your decision and I would support you which ever way you went. However, on the other hand, my DW has incurable cancer and we were treating it with chemo. It isn't growing at this time, but, I made the decision that there will be no more treatment. I can't tell you how difficult it was, but, afterward I was at peace about it.
Do what you think is best and don't look back. No regrets.
I agree with those who have remarked about the hard decision regarding to permit surgery in the face of all of this or to say no to it and opt for quality of life, such as it is for AD patients.
For those of us who have walked this road before with a mother or father or aunt or uncle, all the way to the end without the additional problems of having to decide on a surgical procedure, those last stages are beyond horrible. My mother and her younger brother both died of this disease..and to see these two strong and smart people, who had so much talent, be reduced to not being able to speak, feed themselves, sit up, go to the bathroom, have to have nurses deal with constipation problems, choking problems when they do swallow incorrectly, lapse in and out of consciousness and to find yourself wishing they were free of this part of the disease yet not wanting to let them go... the humiliation of it all for them...it will give us pause to really consider the decision not to go for surgery. We all talk about the quality of life and when faced with this scenario the metal meets the road for real. I wish you courage to make the decision that is best for your LO and peace for your heart once you do.
Once again, and I do mean all of you who have responded, thanks for your wisdom and I know so many of you have already hoed a tougher road then I have and my respect goes out to all of you. My thinking this evening has been to go for what ever the doctor suggest and if he gets worse and stays worse then I will face that problem when it happens. Getting worse is going to come one way or the other...there is no getting out of this condition alive.
My husband is now solidly in stage 6. When he was in stage 5 I decided that when his pacemaker wore out I was not going to get it replaced. At that point we were told by the RN-tech that the battery had 4 years left. Every doctor and nurse I've told my decision to has agreed that it is the right one.
We all need to make this decision. At this point his doctor has a very short list of what surgeries are appropriate and what is not. We did the cancer surgery on his hand because it was a local anesthetic done in the surgeon's private operating room in his office. We won't be doing anything much heavier than that.
Judith, I suggest that you also talk to a hospice chaplain. They are qualified to help families make the hard choices. And frankly, either way, surgery or no surgery, your husband probably qualifies for hospice care. Not that I think you have to qualify to get to see the chaplain.
Judith, I do not have experience personally with open heart surgery. I have a friend whose husband recently had it. It was his third surgery on his heart. He does not have AD, but is having a difficult recovery. After the surgery he had complications with his pancreas and kidneys. He is at home now, but his recovery is slow. I think my husband is at the same stage as yours. I would have a hard time agreeing to surgery. At this point any change in our regular activities is hard for him to accept. He would be very upset by the thought of surgery.
I possibly qualify as having experience with this. DH was not formally diagnosed with AD in 2000 when we first notice something wrong.. We were still trying to find out 'what was wrong' in 2004 when his regular cardio checkup ended up with a quadruple bypass.. He was 'out of breath', unable to keep up when we were walking..tired etc. but otherwise OK (?) He did not have a heart attack but supposedly had 80% blockages..I can tell you that he was much WORSE..afterward..BUT he did improve and it took about a year for him to get back to his 'pre-surgery condition'. That said, his recovery was not routine..He developed respiratory distress and stayed in ICU for 14 days..In 2004 he was in the earliest noticeable stage and after the bypass surgery it made sense to me that it was just a vascular problem. No need to say much more than that he continued to have more difficulties and finally in 2005 was diagnosed. TODAY..he's short of breath again. I know for a fact that we can't put him through anything like that again. He is probably at or near stage 6ish.. He would not be able to cooperate with doctors or understand the pain of any of it. His doctor is a kind fellow who reminds me to consider 'the big picture'..and I agree. Its just hard. I've been there and possibly am there again.. Bless you.
John is now on comfort care only at the NH. I remember when he had open heart surgery in 2007(?). Several weeks after he returned home, he began a very rapid decline, mentally. VERY obvious and upsetting to me. I look back and believe that all those hours on the heart/lung machine really took its toll on his brain. Looking back I really would have actively discouraged him from having this surgery. I would have had more time with him as himself...whatever that means.
While my husband has not had surgery, 2 years ago he had pneumonia and almost died. I had him treated. Seeing where he is today, I regret not being able and ready to let him go then. He was in stage 6 at the time. Now he is in stage 7 not able to feed himself or do any other of the ADL's and not living a life that he would want for himself.
This is a very personal decision. I agree with Judy that it is important to look at the big picture with long term ramifications on making a decision like this. What would he want if he was looking at the big picture and could tell you?
One thing a couple of you have brought up here is that the doctors are "required" at least in their own minds to tell you what the optimal solution for a medical problem is. I had an orthopedist who absolutely refused to do anything but whole knee-replacement surgery on my arthritic knee; no cortisone shot or anything. FOund another one, got my cortisone shot, no problem, knee feels great. Full replacement would have required ME being in rehab for several weeks and my husband likewise, to the tune of $225 a day.
The other day the Physical Therapist sent in by Hospice said that she wanted us to have a Hoyer lift. Now my husband is in a bedroom roughly 12x14. Along with the hospital bed, a large recliner, a couple of dressers, there's a commode, a straight chair (he can't sit in the recliner), and a walker. And the Hoyer requires two people. If there are always two people here, we can get him in and out of bed no problem. PT gal kept bringing up the Hoyer. I finally said NO I DO NOT WANT IT. She said, I thought tellingly, well, I'm required to tell you that is my optimum solution for this problem so that you won't hurt your back. When he's totally bedridden you won't be able to get him out of bed without it. I said, then I *WON'T*.
Sometimes the doctors are blind men looking at the patient as if he were an elephant: they focus on just one part and tell you what should happen to that part. But we, as caregivers, must focus on the whole person AND ON OUR OWN NEEDS.
One more thing about doctors. My husband's cardiologist decided to stop seeing him as soon as he knew about the dementia diagnosis. He still goes in for pacemaker checks, and those are being read by the cardiologist as well as being sent to the family doctor, but there are no ultrasounds, no stress tests and office visits. Not my choice, but his. I can't remember if he actually said it, or if I just understood it, but what he doesn't see from tests he can't be forced to try to treat. He understood that we had reached the point when you don't test and you don't treat.
briegull - what you said brought to mind our recent experience with the dentist. Now dental work is nothing compared to open heart surgery. The dentist would only look at doing crowns, not fillings. He just did not get it. We went to Geriatric Dental where they specialize in over 50 dental care. Yes, they recommended crowns but gave no argument when was told fillings only.
Judith, if you still have a problem how about asking your neurologist to recommend a cardiologist for a second opinion. Even Dr Oz recommends a second opinion before making a decision cause the first might be wrong.
Thanks for the second opinion information. I had planned on doing that. I had a friend visit yesterday and her grandmother's husband had cancer and Alz. he died a couple of months ago. She told me her grandmother said if she had known he would go down hill so fast after the surgery she would not have put him through all that pain and the recovery period. She also said he got very mean after the surgery and he was always a very gentle man. Also, she said caring for him nearly did her grandmother in.
Just got back with my DH from seeing the Neuo. I talked to him about possible affect of a long surgery. He told me to prepare for a long physical recovery and from the ALZ standpoint it would be a decline and in all probability the decline would be permanent. He told me (which I already knew) that things only go one way with this condition and that is down hill and I needed to be concerned about my ability to cope and care for my DH. I asked him how much longer he thought it might be before my DH needed to be in a home. He said he had no way of telling the future, but he would suggest I start looking and visiting homes and to be prepared. I was really taken back by that. I guess no matter how much you know about the facts when you have to face them it is like surprise.
Now get this...I was ready to kill the gals in the Drs. office. My husband is retired from a Federal job. When he talked to them about his change of address when we moved several months ago he got confused (even though I had written all the information down for him to just repeat) but when he got confused he handed me the phone. The government guy told me they were no longer able to talk to the wife even when the husband said it was ok and they would send me this form to have the doctor complete about his condition so they would be allowed to talk with me. The social security people told me the same thing. IS THIS SOMETHING NEW??? Well, I had the form and told the gals what I needed...their answer: "We can't give your husband's medical information to just anyone". I told them the government would not accept the fact that I had a POA and DPOA and they needed this form completed. I said." have my husband sign a release of his medical records"...their reply...."How could we say he was not competent if is able to sign the release". I could have cried and screamed. I said just do the best you can and mail it to me. I guess I will make an appointment with our family doctor and he probably will cooperate. What a day...excuse me while I go cry.
(((((Juidth))))) Hope you had a good cry. They were very insensitive and unprofessional. I can only think they have not dealt with this previously. I would take a copy to your PCP anyway (probably will not need an appointment, just write a note and drop it off with an envelope to return it to you) - doesn't sound like you can trust them.
I am glad you did talk to the neuro - sounds like he was very straight forward with you. Harsh but something you needed to hear and will give you some comfort if you decide not to go ahead with the surgery. Once you make your decision, please do not spend time as he gets worse second guessing yourself. He may go down physically without the surgery but maybe some of his cognitive/mental abilities will stay around longer than if he has the surgery.
My hb and I have agreed: a shorter better quality life beats a longer lingering life.
Judith-the confidentiality laws are insane. My husband passed away last month and some companies still won't talk to me. My answer has been-if you won't talk to me then I won't pay the bill.
Have to say some of these beaurocratic (sp) requirements are crazy. I truly do respect the need for and right to privacy. A couple of our Dr.'s Offices keep up-to-date Hippa Release forms on file. DH can no longer complete them nor sign them. Knowing I am his Guardian, they now hand me the form. I fill it in for him, put my name into the authorized contact space and then sign it on his behalf. They file it; we're all covered; and we have a good laugh over the absurdity.