[RavenSong]

Thanks, Janey. Yep, it's been quite a ride these past few weeks. Ups and downs...

Mom has cut out another of her meds, a statin (cholesterol med), I believe. So now we're down to 5 out of 9 meds. She's absolutely refusing to test her blood glucose levels, and I imagine the oral diabetes meds will be next to go. I'm learning to accept that her noncompliance is out of my hands, that she's a capable adult who has the right to make her own decisions.

But accept it, I must....

[kakuehl]

Hang in there.... You're doing fine. You might ask her how she plans to die? The biggest problem is that having a stroke or heart attack does not guarantee that she will die. She might end up much worse than she is now, but still alive. Does she have a living will, is she DNR? (BTW, My dad warns us not to call 911 until we're sure he can't be resuscitated.

[RavenSong]

Originally Posted by kakuehl

Hang in there.... You're doing fine. You might ask her how she plans to die? The biggest problem is that having a stroke or heart attack does not guarantee that she will die. She might end up much worse than she is now, but still alive. Does she have a living will, is she DNR? (BTW, My dad warns us not to call 911 until we're sure he can't be resuscitated.

Kathy, thanks for the vote of confidence...it means a lot to me.

No, I haven't brought this subject up with my mom yet. To be honest, I don't know if I will or not. Because...I have tried it so many times before in the past few years, ever since she was diagnosed with diabetes and hypertension. Up until the time of her stroke, she had refused to take any of the medications her doctor prescribed. And I have gotten into so many arguments with her over her noncompliance. It just isn't worth all the stress and hard feelings right now.. Either that, or I'm just a total coward. I mean, what if I bring the subject up, she gets ticked off at me for the hundredth time, I hang up the phone with hard feelings, and then she dies?? That's my childish fear right now...

When she was in the cardiac unit at the hospital a few weeks ago, her doctor told me that her noncompliance with her treatment plan had been documented. He talked with her then about signing a DNR if she wasn't going to follow his instructions. She refused to talk to him about it. But the doctor told me that if she has a future massive stroke or coronary and ends up in a comatose state, then the DNR or "no code" decision will be left up to me. I understand that both of my phone numbers have been placed on the front of her hospital chart, so I can be called immediately if she ever codes.

I get so confused sometimes about it all. My mom doesn't want to deal with the possibility of dying, yet she won't take the meds that will enable her to continue living.

I get so frustrated. It was so different when my dad was dying back in 1992. He and I sat down and went over his final wishes. He made sure I understood exactly what he wanted to happen in the event he became incapacitated. He signed a health care proxy, durable power of attorney, and living will. And when he entered a coma from a massive stroke (he was in the last stages of terminal lung cancer, but the stroke is what actually killed him), I was able to follow his wishes down to the letter. I am so grateful to him for that...it made the responsibility on me a lot more bearable.

[kakuehl]

That does put you in a very difficult situation and I understand your unwillingness to bring up the subject. I know what I would do in the same situation, but my views are formed by my own experiences and beliefs. I would recommend you ask the doctors what the quality of life is likely to be if a resuscitation is attempted. I'm not sure living on a vent, being fed through a tube and unresponsive it really "living" but I've seen families insist on it because somehow they can't let the parent "go." And of course, my dad has made his wishes very plain. (You're right it does make it easier.)

[Janeytwo]

Hey Kathy and Raven!

You guys are absolutely right about people needing to be clear and specific in what they want/don't want as far as dying goes.

It is a shame that more people can't discuss these things. I am the guardian of my mother's estate and am the one who will be making her health decisions should she be unable to communicate. It is easier knowing what our loved ones want. So many times people just expect us to know.

Raven

Either that, or I'm just a total coward. I mean, what if I bring the subject up, she gets ticked off at me for the hundredth time, I hang up the phone with hard feelings, and then she dies?? That's my childish fear right now...

I don't see this as you being childish; I see it as your mom not being able to face her death. And I know that's easy to say when we're not in the same situation but I would hope that I would not put my children through that kind of emotional pain and struggle.

But I think you're right not to confront her. Like you say, it just brings you more grief.

This is definately one of those "wait and see" situations that's so hard to deal with because there's so much "grey area" in it.

Praying for you,

Janey

[dpen6]

Raven

You could bring up the DNR question very gently..as in " I understand the doctor told you about the DNR option, Iam NOT telling you what to do but want to make sure YOU underestand" If she starts to get uptight, drop the subject..tell her its ok the ball is in her court and she can do this anyway she wants. Just wanted to make sure she understood all thats going on with her health and you KNOW she is capable of doing what she thinks iis best.(haha)

Lots of times we tend to lecture the elders..."YOU NEED TO DO such and such"....YOU WILL DIE if you don't do such and such and what happens they shut down. It becomes a big control issue and the orginal reason for the convo is gone.

The one thing that I have learned while working with the geriatric popualtion is that often being the humans we are we look at the white hair, glasses, and walker and forget about the person that is really on thie inside. Many tend to patronize(not saying you do) , forgetting that these folks may be able to teach us a thing or two about life. I am currently working with a person that was very successful in is life but is now confused, weak and helpless. I have noticed that when the aides or nurses treat him as the confused, helpless elder he is is he acts out.big time. Combative ext. Give him the time to exspress, ignore the jiberish and attempt to REALLY listen you will HEAR what he is saying...He calms right down and is compliant again. He is a very sweet inteeligant man but he will tell you after a while...in a very difficult way ..don't trreat me like a baby..

Anyway, I went off on a tangent..I know thats not the case with your mother...but my point is to try NOT to succumb to her efforts to argue, understand that it may not be you personally she is being argumentive about.but her own issues. Seperate her non compliance from you....With the stroke and age she probaly is NOT the same women she was when you were a child..but still has the basic feelings of wanting control. Give it to her as much as you can.

Did I make sense???

[RavenSong]

Originally Posted by kakuehl

I know what I would do in the same situation, but my views are formed by my own experiences and beliefs. I would recommend you ask the doctors what the quality of life is likely to be if a resuscitation is attempted. I'm not sure living on a vent, being fed through a tube and unresponsive it really "living" but I've seen families insist on it because somehow they can't let the parent "go."

Kathy, I think you and I probably share similar views on this. That's why the doctors put my phone numbers on the front of her chart, so they can get a "no code" authorization from me in the event she isn't responsive. The doctor already made it very clear to me what her quality of life would be like in the event of another stroke (which most likely will be a catastrophic one.)

I haven't done patient care in many years now, but I still remember all too clearly my patients who were in extended comatose states or vegetative states. Believe me, I have no problem with authorizing a DNR order if that happens to my mom. I'm just afraid to bring it up to her right now because I think she's kind of afraid that if she even thinks about it, it will "jinx" her in some way.

She has deep spiritual beliefs, as do I, about the afterlife. When I was 21 years old, I had a full-fledged near-death experience when I went into cardiac arrest. And I've noticed this past year that my mom has been bringing up that experience from time to time when we're talking on the phone. It seems to bring her some type of peace to be able to talk to me about it. I think she's doing a lot of thinking and sorting things out in her mind. Hopefully, we'll be able to openly talk about it one day soon...

[RavenSong]

Originally Posted by dpen6

Lots of times we tend to lecture the elders..."YOU NEED TO DO such and such"....YOU WILL DIE if you don't do such and such and what happens they shut down. It becomes a big control issue and the orginal reason for the convo is gone.

Donna, as usual your advice is filled with wisdom and is so down-to-earth. I thank you for that...

You've hit the nail on the head. In the past, I think I've patronized my mom when talking to her about following doctor's orders and taking her meds. And you are so right, it then turns into a huge control issue between us.

I am currently working with a person that was very successful in his life but is now confused, weak and helpless. I have noticed that when the aides or nurses treat him as the confused, helpless elder he is is he acts out big time. Combative ext. Give him the time to express, ignore the jiberish and attempt to REALLY listen you will HEAR what he is saying...He calms right down and is compliant again. He is a very sweet intelligent man but he will tell you after a while...in a very difficult way ..don't treat me like a baby..

This is exactly what I discovered when my mom was in the hospital last month. There were a couple nurses that couldn't stand her, and one of them even threatened her and yelled at her. They soon discovered that if I could talk to her on the phone about whatever test or procedure they wanted her to have, that she would calm down and comply with them. It soon became really apparent to me that the problems the nurses were having with her were mainly due to the way they were communicating with her. They weren't taking the time to listen to her...they were just treating her like a little kid who was throwing a tantrum. She was having a hard enough time finding the words she wanted to use (expressive aphasia), and when the nurses would get impatient with her, Mom would get really frustrated and angry. I remember calling her room once, and hearing a nurse raising her voice like my mom was deaf. I later called the nurses' station and told them her hearing was fine, that she's super sensitive to noise and loud voices (she's a musician), and that all that was happening when they raised their voices to her is that she quit listening. I don't know if I was able to make my point or not to the nursing staff...I hope so. At least they were nice to me and didn't hang up the phone, lol...

Separate her noncompliance from you....With the stroke and age she probably is NOT the same women she was when you were a child..but still has the basic feelings of wanting control. Give it to her as much as you can.

Did I make sense???

Very wise advice here, Donna. Thank you again. I agree with you...my mom is not a child just because she's old and sick. She still needs to have as much control as she can muster now. And I don't think I should take that away from her. I think it will probably be best to encourage her to be as independent as she can be, at least for the time being. And, yes, you make perfect sense...