Why are you looking at me?

I was late to work tonight because we took my Dad to the emergency room. He had some outpatient surgery on Friday to remove an infected tumor on his neck and a basal cell cancerous growth behind his ear. He was OK the next day but seemed a bit out of it on Saturday, and Sunday afternoon he got so weak he couldn’t stand up for a while. The skin graft on his neck was swollen, red, and smelled bad as well, so we took him in to get looked at.

My Dad is 72 and has developed some health problems in the last several years - myasthenia gravis, diabetes, and more recently has experienced a lot of mental deterioration. It’s been diagnosed as Alzheimers but we suspect it may be something else, possibly related to some of his medications which can cause dementia over time - anyway, my wife worked in a nursing home and says my father doesn’t seem like he has Alzheimers at all. He is normally alert and in a good mood but has lost a lot of his short term memory, and while most of the time you can’t tell there’s anything wrong with him there are a few things he can’t remember, like where the bathroom is (despite his having lived with us since before Thanksgiving). He realizes that there’s something wrong and he always phrases questions that he knows he should know the answer to so it’s like we are just confirming something that’s slipped his mind. Sometimes though, especially at night, he gets more confused and can get very angry with my mother, who admittedly doesn’t deal with the stress sometimes and is bad about not hiding her frustration with him - even before this started happening he would sometimes blame her for not keeping track of stuff he happened to forget, and now that he’s forgetting stuff more it comes up more.

Dad was pretty out of it tonight. He was eventually able to stand up and walk around and we got him to the car, though it took about 15 minutes and sometimes he would just stand still and not budge, even when we tried to help him. We get him in, get him admitted, and hang around while they do some of the first tests. I’m already worried about later tonight after he’s alone, as he kept trying to get up and walk around even though he had a heart monitor and an IV on him. We’d tell him he had to sit down or he’d pull the IV out and he’d nod, but a few seconds later he’d forget again. Anyway, he’s finally getting moved upstairs and my mother and I are talking to the latest doctor outside the room, who is agreeing that he probably should be sedated tonight and asks if he is ‘demented’. Then he asks if he has a DNR (Do Not Resuscitate) order - no, but he used to talk about it. Then he asks us if we want to give a DNR order.

Mom starts to say yes, but then goes indecisive, and after several seconds looks at me and asks ‘What do you think?’ The doctor looks to me too. I paused for less than a second in which I briefly consider asking Dad, then say ‘yes’. It’s decided, the doctor pats us both reassuringly on the shoulder and tells us there’s probably nothing to worry about, but they had to ask before we left.

In the car Mom tells me not to worry too much about the DNR, they asked before his last trip to the hospital. I told her I wasn’t worried, I knew that that’s what Dad would want, he always said he didn’t want to be dependent on some machine. When he was hospitalized the first time for myasthenia several people had to hold him down to get the tube down his throat for the respirator - he would be dead today if he had made the arrangements instead of just telling family about it. Mom then agrees, yes he used to, but she’s not so sure what he would say these days.

So now I’m at work, thinking about how if my Dad dies tonight it could be because of me, and that I made a decision for him that he might not agree with in his current state. Luckily Sunday nights are really slow.

It’s not like you’re killing him or anything. It’s a judgment call. Personally I wish more people would have the courage to make the decision, if not for themselves, for their family members. The choice you make is the right choice. If you thought he would want to keep struggling then you would know the DNR is not right. If you thought he didn’t want that kind of fight, then you know the DNR is right.

He might or might not agree with it in his current state. Can he even communicate that right now? If not, the best he can do is to know that he raised a son who can make decisions.

…not much consolation, is it. Well then I guess all I can say is that I always feel better after carrying through with a decision I made by instinct.

BTW, I hope he makes a quick recovery.

Perhaps you should ask the doctor about the details of a DNR order. If it’s only applied if the patient falls into a vegetative state, then you can surely rest easy knowing you are doing the right thing. DNR only apply in situations where the person is no longer able to move or express themselves, right? Just being demented doesn’t qualify I’d hope.

If the person’s mind is gone, or permanently unconcious, and they will not come out of it, than what use is there keeping the body alive?

We spent a lot of time thinking about this kind of thing in my medical ethics class. Everything boiled down to the quality of life of the patient. Someone who is mentally competent might say he/she wouldn’t want to live if they were demented… but once they are actually demented, they may be happy. This paragraph probably doesn’t apply to your situation.

Good luck to you. You are being very courageous in an extremely trying situation.

Well, he’s doing a lot better today. My Mom spent a good part of the day with him up at the hospital. He was able to get around just fine and my Mom said he seemed to have it together mentally although he didn’t remember going to the ER. Later they gave him one of his medications for his MG, the name slips my mind but it has a th and a aza in it, I believe is a steroid, and one of his doctors once said that it can cause personality changes. He takes it 4 times a day but missed a few doses, and when they gave him his pill my Mom said he started getting really beligerant and foul-tempered. When I went to go pick my Mom up, he had recently pulled out his IV and had earlier shaken his fist at her and said ‘One more time…’ when she had told him not to leave her room, which is completely unlike how he used to be (he was always one of the most level-headed and non-violent people I ever knew). Anyway, after we left he apparently pulled his IV out 4 more times and they put a restraining vest on him.

We’re going to try and get a doctor to reduce his dosages on the crazy pills (thiazapin? azathiaprin? still can’t remember), but we are concerned that my Mom isn’t going to be able to take care of the hole in his neck because he fights her whenever she tries to clean it (he winces when the nurses do but allows it), and they might try to send him home tomorrow or the day after. I’m beginning to wonder if we have grounds for a malpractice suit against the doctor who removed the tumor. When my Mom called him on Saturday he told her it couldn’t be infected yet and that it was normal, when my wife called him later that afternoon he said that he suspected it was going to get infected because there was so much pus in the tumor that he wasn’t sure he could get it all. Why the hell didn’t he prescribe some antibiotics if he feared an infection, especially since my Dad is diabetic and they have problems with skin grafts? Also, they are going to have to abrade away some of the healthy tissue in this gaping hole in his neck because the surgeon had stuffed it with cotton (UNDER the skin graft, which sounds weird but is supposedly normal) and it healed around some of it. The wound nurse apparently was surprised at the state of the wound considering a doctor had just worked on it a couple of days before.

Got off track there for a bit, vicadin will do that to you. Anyway, he now has this two-inch wide hole in his neck that he’s already had infection problems in, he can’t take care of it himself and he won’t let my Mom near it because he’s belligerant and paranoid on his medication. I hate to ask my wife to help though she does have some experience (she used to work in a nursing home and has some kind of certification though she’s not a RN) but I may have to if they send him home early. My brother thinks we need to put him in a nursing home. My Mom’s at her wit’s end and the combination of working nights and taxiing everyone around town during the day is getting to me too. I’m actually beginning to look forward to my lay-off because I’ll have some time to devote to taking care of it all, at least until the next semester starts.

I would advise getting some kind of nursing help for your dad. I actually can’t believe they’re going to release him in his condition with his medical history - your mom, who must also be advanced in years, shouldn’t be expected to look after a patient who probably needs 24 hour supervision for his own protection. Not to pass judgement on your mom or your family, but if you can afford help, get it. This must be very difficult for all of you.

(Oh, about the nursing home - if you want him placed in one, you probably know that the waiting lists are long, and you probably need to get on one as soon as possible.)