This has been a week from HEL... My husband had a massive heart attack on Saturday morning. I got him to an ER in time to save him, (we were on Lake Shore Dr on our way for a picnic). They saved him by cardiac cath. Tues, they did triple bypass. He is in stage ~4. I have been posting here for quite sometime so won't go into all the dynamics. Now we are dealing with a massive MI, anesthesia, and ALZ. I have so missed having contact on the board. I haven't been able to read or catch up since last Fri. Just wanted to say I am still here, just really stressed and tired. Dealing with a issue such as this and ALZ is so difficult. If he had been in much later stages, probably wouldn't have opted for surgery. But he is early yet, just hope anesthesia doesn't push him further along. Geez I hate making all these kind of decisions, won't even go into scene at hospital with oldest son who wanted to control everything. Nurses and doctors didn't want to even deal with him (oldest son). Thank goodness they found ways to deal with me alone and decisions were made. Sorry to ramble a very long scary stressful week. Hope to be back in discussions real soon. He is still in ICU and will be for awhile. I would just like to deal with one major health issue at a time thanks, this is a little overwhelming. Anne To those of you who are familiar with this, he occluded his left main coronary artery, not a good thing at all. But he did survive, and how he did is a really long story.
Anne, how awful everything that has happened. on top of the AD its just overwhelming for anybody to have to make these kind of decisions. take care of yourself as well, you sound so depleted in all areas, please know we are thinking of you and hope for a speedy recovery -my best, Divvi
Oh, my gosh. I sometimes I think I have problems. I am so sorry you are going through this. Starling said it best. Take care of yourself, then DH and after the dust has settled, deal with your son. He's got to be pretty sad to say anything untoward to his mother at a time like this. But, it is still unacceptable.
Anne - Please take care of yourself and try to get rest while your husband is in the hospital. By the way - am I the only one that keeps getting disconnected from this site? I wrote more and didn't time out, I'm sure of that.
Yes, I've sort of been where you are right now. DH didn't have a heart attack but had a heart cath and we ended up spending the nite at the hosp with quadruple bypass surg scheduled for the next day.
After the surgery,he developed a respiratory distress that caused him to be kept 'unconscious' in ICU for 2 weeks. We knew he had memory difficulties and the drs. were worried that the longer he stayed on the 'vent' there was risk for 'brain damage' (duh).. He had already been diagnosed with MCI but I didn't know if the dr's had that information. This was in June of 2004. However, it took at LEAST 6 months to overcome the effects of all that. Honestly, the rehab therapists did a wonderful job and I suspect that it wasn't because of the bypass complications that his short term memory never got better. He managed to go back to work in January of 2005 but was officially diagnosed with Alz. in September after he had a PET scan. Thankfully, his office staff helped him manage things at work until he retired in January of 06. We had some hair raising days while he was in ICU. Those times are a blur now..It was like being carried along on a wave of some kind... So , I'm thinking of you now and hoping you can get some rest..
Scary part here is he is not at hospital that his primary care physicians are on staff, because of emergency situation. He took Trazadone for agitation, aggression, related to ALZ. His vascular surgeon put him on Haldol to control his post anesthesia agitation, etc. I am getting really scared now. I have tried to find out who, and why, put him on this drug. I am told surgeon did Psych consult and they decided that was the drug of choice. They won't call his neuro guy, different hospital. Give me a break the hospitals are less than 5 mi apart. He is where is because we were there when he had the MI. Am going to call his internist and neuro tomorrow. Really want to get him back to home base with his MDs. This is so awful, why can't docs talk to other docs? This is my husband, find out who he is and what is going on with him and treat what is going on now. What is the problem with that? I am just going crazy, and soooo tired. I don't want to lose him, not yet, he still is early in AZ. I just don't want to lose him, not yet.
Anne, I am so sorry for you and your husband, I wont comment on the step son... at the moment. I did want to say that Docs DO talk to other doctors! If the one where he is at isn't willing to talk with your husband primary doc and neuro, there is something truly wrong with him! I would call ASAP to get his regular doctors on board in your husbands care, transfer him if you have to. My neuro is 2 hours away from my local hospital ANY TIME I go to the ER, they ALWAYS contact him. That is really ticking me off! You have enough to worry about with doctors and their damn egos! I hope DH does well and is able to come out of ICU and that you too are able to get some rest. Take care!!
Part (but not all) of the problem of doctors "not speaking" to other doctors has to do with the government. The HIPPA law (I don't remember what it stands for) is designed to protect patient privacy by not allowing any transfer of information without the patient's consent. If the patient is unable to give that consent, the doctors are afraid to talk to each other. The whole thing is stupid, and many doctors will go ahead and give information to other doctors. If his surgeon called a Psych consult without asking you, I would complain to the hospital administration. There should be someone on the hospital staff who is designated to act for patients and their families (Ombudsman). This person may be part of the hospital chaplaincy department, another source of help. Did the psychiatrist know about his AD? If not, why not?
Thank you all for your support, I can't tell you how much it means to me. Nikki and marsh, thanks for your input. I am a retired RN, (about 20 yrs ago), so I know some of the medical dance steps. But my brain has not been working well these past days. Yes they called a Psych consult w/o asking me. Yes I made them all aware of his AD. They insist to go the psych route rather than neuro. I am extremely concerned about the Haldol being given to him. I am contacting his primary docs again today to discuss moving him. I was told earlier by primaries that moving him at this point was extremely dangerous. I am so frightened I may make a decision error, I just would like some support from his kids. Crying again gotta go
Anne, it sounds like you could use some help from the hospital Chaplain for yourself. Give him/her a call (ask a nurse). These people are trained to help you regardless of your religious affiliation, or lack thereof.
Anne, I'm so sorry for everything! The others have given you good advice, so I won't add any. Frankly, I wouldn't worry about the support from his kids. They will be thinking about themselves (and think that they know more than you) and not what is best for you and your husband.
I too am a step mom of grown children, and during the past 7 years my huband had 2 heart attacks and 2 other operations as well as AD. Brace yourself, because in my experience they do take a big step downwards after any kind of major health event - I don't know if its the anesthesia or the unfamiliarity of the hospital environment, or lack of oxygen or what. When he had his last heart attack he was in stage 6, so I made the very difficult decision not to treat except with nitro patches and morphine and I signed a DNR order on him. (A year and a half later he's still alive and in stage 7.) I had to deal with that and the kids. Most of them were supportive, but one of them just blew me out of the water. I had no idea he harbored such resentment or thought such awful things. I told him that if he thought he could do a better job of taking care of his dad that I would sign him over and he could take Dad home to live with him and change his diapers. That shut him up! I didn't mean to go on and on, but I do know how you feel and it's hell. And to have to deal with what passes for a health care system in this country as well. I am so sorry you are going through this.
The original intent of HIPAA was to keep people from accessing other people’s heathcare info inappropriately, i.e. without a medical need, not to impede medical care. That of course is not how it always works! Frequently, either out of lack of understanding or being overly concerned about HIPAA, (or because someone in the system is at fault) the act is misinterpreted.
My DH (before and/or early in AD) was a healthcare consultant who advised on this stuff for a few years. It was a constant struggle to get facilities to either take the provisions more seriously or to not set up roadblocks that were inappropriate.
In the case of someone being treated by an ER dr., for example, for that dr. to contact other treating drs. would be appropriate for continuum of care. Of course, their could be lots of other issues, like the time factor or hospital policy that came into play.
Anne, reading these notes just now & it is heartbreaking that you have to deal with Alz, then your husb's other issues, and then the step-kids too...The Alz alone is enough to make us 'forgetful'. You are doing a great job!! You just keep on doing the best you can, and that will be the best! Praying for strength and wisdom for you and the dr's caring for your husb in the days ahead. Debbie