Dad won't give up.

Yes, I went back and read carefully through the DPOA and medical directives. Mom left me no wiggle room. No exceptions. No discretionary space.

I just hope when this happens I have a compassionate couple of doctors. Her directive requires the agreement of two doctors to pull the plug and only after 7 days of "vegetative state". I fear 7 days of agony in ICU or CCU till something can be done unless there is some compassion for her.

Google "death anxiety". It seems that the natural order of things is most people go through stages of fear and worry about dying but eventually they grow out of it; as they get old they come to accept their own death as an eventuality. Maybe a necessary evil and maybe actually something to be curious about, to see as "the next thing", but not the terrifying nightmare it seems like to some younger people.

However, some people do not get to that place, they cling to the denial that if they only do everything "right" they can forestall death indefinitely.

My mother is 87. Her GP is 82. She just had colon cancer surgery and during the middle of it the surgeon came out to rant at me a bit, asking why on earth anyone thought aggressive surgery was a correct course of action for a slow growing and non invasive cancer in an 87 year old already in poor health.  In his rather abrupt words, "she'd definitely die of something else before she died of this colon cancer, in fact she's more likely to die from complications of the surgery."  I considered that at the time and when it took her nearly 2 months to get back on her feet after surgery, I felt he was absolutely correct. I later spoke to her GP and he casually threw in, "and of course it had to be done". HAD to be? Or just misplaced thanatophobia on the part of the aging doctor?

Our society has made death into something that's not only unnecessarily horrifying but disgraceful, the mark of a slacker. If you die you didn't try hard enough, you didn't have the bravery to survive, our cultural cues tell us, so in addition to our anxiety and fear, we get to be *ashamed* about making the choice to die. I think that awful combo is what pushes some people over the edge into "alive at all costs" and I think that's a true pity.

Katiekate - Your mother's medical directive may be written so that there's absolutely no room for negotiation. None whatsoever. I understand this. However, I recommend you reread the medical directive in case there's an option for some wiggle room that wasn't explained to you.

My parents' directives were written so that I make the final decision based on recommendations from the doctors in the event they are not able to communicate their wishes. This also gives me authority to override whatever stipulations are listed such as feeding tube, heart pacer, etc, in consult with the doctors based on their quality of life.

Looking back, I was so much into honoring everything my father wanted done to save his life - because he was of sound mind prior to every incident that caused him to not communicate his wishes and the POA was on file at the statewide hospital database - that I didn't think about the ramifications of his suffering, the aftermath. It's just not worth it.

Like I said, I have friends who are doctors. Not one of them will ever question a POA's decision to put the patient on hospice if this patient presents with grave circumstances or poor quality of life regardless of what the patient has stated in the medical directive.

In response to your question: Should it ever come to pass....you believe th doctors will allow me to decide to "pull the plug" against her own written directive?

My response: Yes, if you have a compassionate doctor on your side. My friends are compassionate doctors. However, not all doctors are compassionate.

Sslk, I remember my FIL talking to me about not wanting to go abroad on vacation any more, and saying explicitly that one reason was that he didn't want to be too far from his hospital, because, he said, he was frightened. I remember what a shock it was to think of him feeling like that. That generation, and a man, and him a veteran as well...

I don't know how you can feel better about seeing your father's fearfulness and desperation. It must be awful for you. Do you have anyone you can talk to about it?

Katiekate, read that healthcare directive. Both my directive and my late husband's have this wording. "My Agent has the power to make any health care decision for me." It goes on to say that the agent should follow any known preferences and should discuss the situation with the principal if he is able to communicate.

It also says "My Agent's authority to interpret my desires is intended to be as broad as possible."

The directive also gives the Agent the authority to make funeral and burial decisions.

At the family meeting where we discussed this we stressed the importance of the alternate agents to be able to follow the directive with a clear conscious. We did not want to put anyone in the position of arranging for cremation as their dad wanted if they had strong beliefs against that, for example.

As it turned out, my husband died holding my hand. He agreed to hospice care and no heat-wrenching decisions had to be made. But if a decision had been needed I would have complete authority to make it.

Careisgiven....
I quite agree with you. But, the fact remains that Mom has a VERY detailed and specific directive that is on file with every hospital in the region.

I am in terror that Mom could put herself through a total nightmare of suffering because of it. I really do not see how I can over rule her choice...or how I would be allowed to overrule it.

She is not cognizant...she could never be permitted at this stage to sign anything.

Should it ever come to pass....you believe th doctors will allow me to decide to "pull the plug" against her own written directive?

I made my comment on the assumption she/he is POA of the father and that there is a medical directive already in place. If the father can't consciously communicate, the POAs can make a different set of decisions in consult with the ER doctors; most medical directives are drawn up so that there's actually unspoken wiggle room; it's not openly discussed in the medical community, but it happens. When it's a life or death situation, many ER doctors will not pay attention to the fine details of a medical directive such as patient wants feeding tube, patient wants intubation, etc. These docs just want to know if the patient is a DNR or not and what is the immediate plan for this patient. Not many ER doctors will question a POA's decision to put the patient on hospice given the patient's overall health history even though the medical directive may state all aggressive measures must be taken. They've seen a lot and have compassion for the patient's well-being, first, then for the patient's family.

I have friends who are doctors and all of them have said they've seen way too much suffering because family members are not ready to let go and they want everything done to their loved one to keep him/her alive even though there is a medical directive in place stating minimal measures to be taken in the event the patient is unconscious.

In this poster's case, her father may very well survive again and again, just like my father did, from this or that...but at what cost is what I was trying to get at. The body and mind continues to break down because we are not programmed to live hundreds of years. If this did actually happen...Plastic surgeons will be billionaires! :-)  I'm speaking from my experience only and it's just not worth it to continue to save and save a loved because he wants it and it was stated in the medical directive. There's just too much suffering on both parties and both suffer from a poor quality of life.

With a signed medical directive....there is really no legal way to "step in" and direct anything contrary to those written wishes...right?

My Moms directive is quite to the point. Spare no effort to keep her alive. And, only after 7 full days and the agreement of two doctors that her vegetative state will not be reversed...only then can she be allowed to pass. Painkillers only.

But, oh lord...I can foresee a time when days of suffering in CCU or ICU would precede this final physician agreement.

To countrymouse : it's not so much that I want him to face reality the real issue is tjat it's extremely discomforting that he is so scared.

My father (both parents, actually) was an old school immigrant. He was born in extremely deplorable conditions in a very rural village of Northern India; no antibiotics, no toilet, no electricity for luxuries like heat and air conditioning, no running water, etc. Yes...every American's worse nightmare. We are so spoiled compared to some other countries! My father had a fight or die instinct because this was the only way to survive in his generation and circumstances and this attitude, this drive to persevere stayed with him when he established permanent residency in this country.

He refused to be a DNR - and it was horrific for me and for my mother to watch his suffering; I still have nightmares. Seriously. It was a mess what happened to him. His doctors talked to him about being a DNR. I talked to him. Home health RN talked to him. He refused and ignored every attempt because he was stubborn - he didn't want to leave me and my mother. It was so excruciatingly gut-wrenching - no traumatizing - for me to see what he was willing to deal with simply because he loved us so much. He loved his life though he was in such physical pain. He had no quality of life.

My advice is wait until it gets to a point that he isn't able to communicate his wishes, for example, in an emergency such as he's suffering from a UTI that leads to sepsis or he's having a heart attack - this is when you step in - and him on hospice letting nature take it's course. Trust me - I've been through what you're going through and it's so not worth his suffering - and your suffering because you will have to deal, have to live, with the memory of his pain. Not him. He's gone. I carried out my father's wishes because I didn't want him to hate me, so to speak, and I didn't want to feel like I was killing him by not allowing this or that treatment because he was of sound mind and wanted whatever it took to keep him alive. Looking back...I so regret not stepping in and putting an end to his misery and I would've gotten over my feelings mentioned right above - with a lot of therapy. :-) As soon as my mother showed some decline, I immediately put a DNR on her. I will not allow her to suffer like my father did. No way.

sslk, I know what you're talking about. There is a magic pill out there that will make everything better. The TV tells them these things every day. If they only take a certain pill or wear a certain device, then life will be rosy again. Of course, we know it isn't true when people reach a certain age. Sometimes these pills have unintended effects that can be worse than what they're treating. What I've learned to do with my mother is not respond at all. I know that no pill or body brace is going to make her 40 again. There is no incontinence pill that will help, since the problem is urinary urgency upon standing and walking very slowly to the bathroom. I've been with her a long time now, so I have to turn a deaf ear to her complaints. It makes me feel rather cold, but I know there is nothing that I or anyone else can do to make her 90-year old body 40 again.

I wish there was a pill that could make us younger again. My 65-year old body is starting to have aches and pains. It would be great to have a pill to make the pain and stiffness go away. I can sympathize with the older people, but know that there is no magic pill. It reminds me of the old search for the fountain of youth.

My Mom has in the past expressed this same desire. Maintain life at all cost. But, this was before her dementia really took hold. Now, even if she no longer wanted this...it is too late.

She cannot communicate any more. What little she does manage to say or write that comes out as actual words usually mean nothing in the context.

It must be terrible to be trapped inside a body and mind that holds you a prisoner.

I am sorry for all the 90 years olds.....old age ain't for sissys

Sslk, you say your father isn't comprehending what you say. But my guess is that you are not saying what he wants to hear.

He doesn't want to die. But we all die, and he, at 90 and gravely ill, is closer to it than most.

He wants a solution to the distressing and distasteful symptoms he is experiencing. He may also have or be afraid of painful symptoms, and wants to know that these will be wholly avoidable. But you cannot give him that reassurance.

Depending on what pain relief he is currently prescribed, you might also want to make allowances for the possibility that he could be as high as a kite. Which would make trying to connect him with stark reality more difficult; but on the upside save him from the worst of the fear and pain.

So what should you do? Try to see his situation through his eyes, put yourself in his shoes, go with him. When he wants to know about miracle cures, remind him that you are not a doctor, you cannot comment, and he must ask his own doctor himself. If you're not terribly impressed with the current doctor, see if you can find one with a special interest in end-of-life care to take over.

But why insist on his facing reality? I am absolutely not someone who believes in keeping the truth from people who have a right to know it, especially if they are asking questions. But I feel just as strongly that when someone consistently refuses to hear the truth and clearly prefers to deny it, there is no benefit to them in forcing them to accept it.

Your mission is to comfort and ease your father's end-of-life period and then his passing. Nothing you or anyone else can do will alter the outcome. So do what it takes: lie cheerfully, if that's what he wants. Talk nonsense. Offer all the bromides and platitudes you can think of. This is what placebos are for: to make people feel better.

Just keep checking that this is what he wants, and be ready with the truth - line up a spiritual adviser in case, perhaps - should he change his mind.

sslk1960, do you live with your Dad? Do you perform a lot of caregiving tasks for him?

Dear sslk,

Its so hard caring for an elderly parent. After many years its only natural and normal to lose all patience. I think your dad has a right to seek out all and any treatments he wants to prolong his life. It is his life. And you too have a right to tell him, if you are feeling burned out. I know you have done so much for him already. I tried to be the advocate for my dad too. But after his stroke the day to day care had taken a toll on me. I couldn't see or hear straight anymore. I was consumed with anger about why is dad asking me this? Why can't dad just listen? And it escalated from there till his passing. Now I am filled with regret about my dad's care. I should have stepped back and tried to get more help instead.

It seems that his life has only become about his health or bodily functions. The only activity he does is take his scooter across the street to pick up scripts or a few groceries. Yes it has become extremely tedious. His hearing has declined to the point that his aids barely work. These things make it very difficult to talk about anything. He is also at the point that when I try to explain something to him he will get that glazed look in his eye and I know he isn't comprehending what I say. I am just very stressed and tired.

He seems to be very focused on his health. You may be right that it reflects a denial of the facts of life and death. Others might praise him for not going gently into that good night.

Either way, all this talk about medications and health issues must get tiring, boring, and frustrating for others. Can you try to avoid these topics and redirect the conversation when he goes there? If you don't have the correct answer to anything, there really is no point in giving him answers, is there?