Issues with elderly parents and some encouragement for Mr.

[Mr. Bloom]

First, thanks to all for feedback, support and encouragement. I am a bit surprised by the post, but value the feedback

Does he have a living will? Does he need to change anything in his regular will? The easiest time to do this is as a package. Will, living will, durable power of attorney, DNR, funeral arrangements. If you start with the will review it easily segues into the other.

Yes, we have everything...all of those things and even more, including trusts of which I'm already the trustee over all their assets (Lisa is correct, the Powers of Attorney are worthless, post death). That's part of the problem...as all of this was being executed, while my parents were in full control of their mental faculties, I looked them in the eye and told them - with the attorney present - what their living will said:

• we would not take heroic means to sustain life
• we would withhold fluids, etc (which is essentially starvation...that was a tough one to discuss...)
• we would do everything to preserve comfort and dignity

So, this begs the question: Is basic CPR, absent any terminal illness, heroic?? In my view, no, it's not heroic...and herein lies my struggle based on what I've already discussed and conveyed to my parents.

In addition, if my dad collapses and his heart has stopped, my mother would be standing there (they're ALWAYS together...so she WILL BE THERE when he dies) expecting someone to do something...and will likely be pleading for them to do so. Psychologically, what impact does that have on her, in the moment, to have no one respond to her pleas for help. This, TO ME, is a gut wretching scenario that is totally unlike him dying in his sleep.

Why is the doctor not discussing things directly with the patient? (If I were the patient, I'd be seriously pissed if a doctor went behind my back to a family member UNLESS I were incompetent, in which case, I'd be incompetent. Is that the case here?)

This is exactly what I said last night. In my view, it's awkward and I frankly feel that I have a 50/50 chance of finding him to be adequately lucid to comprehend what we'd be discussing with him. In addition, along with the dementia comes paranoia...do I want my dad thinking that I'm trying to hasten his death? He honestly believes my mother is tired of him and wants him dead.

Don't get me wrong, he is mentally and spiritually ready for death. Ironically, on his 70th birthday, he shared that his only prayer in life was to see me graduate from high school (he thought he wouldn't live to be 55! - what a tear jerker that was!). But this is not a decision that I can make for him...and I'm uncomfortable with playing "God" with someone's life.

Silver and Mr. Silver, I want to share this with you too... I'm sure you already know this, but sometimes reading it can be helpful. Mr. Silver is IN the grieving process... and he may go in and out of the stages, which is totally healthy and OK too. I just think it's useful to understand the process...

http://www.counselingforloss.com/article8.htm

Thanks. I've been familiar with EKR's work for years and actually apply it in business (when you're a banker dealing with someone in financial crisis, they go through the same stages...). Last year, we thought dad was on death's door and frankly, I had come to 'acceptance'...but I was still vascillating toward 'anger' at the unfairness of the 'way he was going...'. But, he goes in cycles and right now he seems to be more improved than any point in the last year...so am I in denial or am I simply asking "why is this an issue, when he seems to be improving???" I don't know.

Over the past few months I feel like I have gotten to know the Silver family, so it breaks my heart to see you have to deal with this.

Thanks. It's amazing how enjoyable and trusted this forum has become to the Silvers! Ironic how small this forum makes the big world feel

Finally, Silver has been great in how she's stood by them, despite PLENTY of frustrations.

[BleeckerSt_Girl]

...I looked them in the eye and told them - with the attorney present - what their living will said:

• we would not take heroic means to sustain life
• we would withhold fluids, etc (which is essentially starvation...that was a tough one to discuss...)
• we would do everything to preserve comfort and dignity

So, this begs the question: Is basic CPR, absent any terminal illness, heroic?? In my view, no, it's not heroic...and herein lies my struggle based on what I've already discussed and conveyed to my parents.

In addition, if my dad collapses and his heart has stopped, my mother would be standing there (they're ALWAYS together...so she WILL BE THERE when he dies) expecting someone to do something...and will likely be pleading for them to do so. Psychologically, what impact does that have on her, in the moment, to have no one respond to her pleas for help. This, TO ME, is a gut wretching scenario that is totally unlike him dying in his sleep.

My own opinion is that CPR is not "heroic" measures to sustain life. I feel that attempts to restart the heart are logical and do sometimes work. Giving oxygen with a mask can be helpful too. It's when they want to intebate you (did i spell it right?) -stick a tube down into your lungs and have a breathing machine breath completely for you- that I feel is where it crosses into "heroic"- and that's when it becomes "life support" (whether temporary or permanent)....not when they use paddles to start or correct irregular or stopped heart rhythm or CPR. If one's heart truly wants to stop beating, no paddle in the world is going to be able to jump start it again. So for me the heroic part begins when the want to put you on a breathing machine with a tube down your throat to breathe for you. (and my mother WANTED heroic, so that's what she got). Once they have you on a breathing machine, they can give you drugs to help keep your heart beating as well.
Personally, I believe in continuing water drips while someone is dying as a matter of comfort- only because I have heard that severe dehydration can be extremely uncomfortable.
It's such a tough call when someone is not actually actively dying from an illness- when they are just fading away and getting sleepier all the time. There comes a time when they no longer eat enough and that's yet another hard decision to make.

[Starfish]

Personally, I believe in continuing water drips while someone is dying as a matter of comfort- only because I have heard that severe dehydration can be extremely uncomfortable.

Many hospice nurses have a very different opinion on this, and I won't duplicate here what anyone can read through their own hospice organizations. Fluid in the body of someone who is not moving can cause its own problems with pressure points, and so forth, as well as the need for much more jostling for cleaning the urination, or the problems that can arise with a catheter.

With my mom, based on both what her living will stated and what the hospice nurses told us, we did not have a drip. We did all the pain meds we needed to keep her as comfortable as possible, and it was easy to gauge by the furrows (and lack thereof) in her brow, etc. Fortunately, her desire for pain meds was also spelled out in her living will, and Hospice was a Godsend regarding helping us make our own decisions about dosages, etc. I did give her all the ice chips she seemed to want, and did use a wet washcloth to keep her mouth cleaned and moist.

[BleeckerSt_Girl]

Yes I do understand what you are saying Starfish. I guess there are varying opinions on the subject. Sounds like you and I both were "there" for our mothers in loving caring ways at the end.

[salsabike]

One of the major points in all this is: HAVE THE CONVERSATIONS while your loved ones are still able to fully participate, so that you can be doing what they would truly want instead of struggling through the agonizing process of trying to figure it out when you're in the midst of the situation.

And you will need to be pretty concrete and specific. My parents both had living wills that said "no extreme measures to be taken to prolong my death". The hospital staff said that was pretty much useless to them. Does the person want CPR? Under what illness conditions? Intubation? Food and water through a tube? Etc. This is not fun stuff. It's even less fun when you find yourself trying to divine what your parents might want if you've never had the opportunity to discuss it with them at all.

My parents were pretty clear about what they wanted and didn't want. My spouse---youngest of three boys--has never had this talk with his remaining parent, his dad, and it really needs to take place.

If you--the general you, this is addressed to--have a good primary care doc, they can help you walk through a form that specifies all this. And, by the way, we should be doing such forms for ourselves too--for exactly the reason I just described.

[Starfish]

Yes I do understand what you are saying Starfish. I guess there are varying opinions on the subject. Sounds like you and I both were "there" for our mothers in loving caring ways at the end.

Definitely, Lisa.

It is one reason I was so very grateful for Hospice. Despite my parents both having very specific and good living wills, there was just no getting around many, many decisions on a daily basis. All while exhausted; all while emotionally wrung out. I was very grateful that the Hospice nurses were available as sounding boards, as a source of alternative opinions I could weigh, and as simply a true comfort...reminding me I was doing the best I could with the information I had available.

[Mr. Bloom]

Here's what dad's Living Well says:

If...my physician certifies in writing that 1) I have an incurable injury, disease, or illness; 2) my death will occur within a short time; and 3) the use of life prolonging procedures would serve only to artificially prolong the dying process, I direct that such precedures be withheld or withdrawn...

This to me is clear...and it doesn't cover death by old age.

So, the moral is: Don't limit the conversations to terminal illness or heroic acts. Frankly, I believe that if I was reasonably healthy and being asked if I would expect someone to administer CPR if my heart stopped, then I would say "sure"...

This is VERY frustrating and very complex to me at a moral, spiritual, and relational level

[Dianyla]

So, this begs the question: Is basic CPR, absent any terminal illness, heroic?? In my view, no, it's not heroic...and herein lies my struggle based on what I've already discussed and conveyed to my parents.

Here is a link to a frankly blunt discussion thread on a doctor's forum wherein they discuss the ethics of coding futile patients, especially at the request of the family. It might give you another perspective. In some cases, coding a frail patient is quite harmful, not heroic. ETA: Warning, you have to wade through some fairly macho MD-on-MD pissing wars in that thread. Sorry 'bout that.

In addition, if my dad collapses and his heart has stopped, my mother would be standing there (they're ALWAYS together...so she WILL BE THERE when he dies) expecting someone to do something...and will likely be pleading for them to do so. Psychologically, what impact does that have on her, in the moment, to have no one respond to her pleas for help. This, TO ME, is a gut wretching scenario that is totally unlike him dying in his sleep.

Another thing you may be interested in reading is How We Die, by Sherwin Nuland. He talks about all of the various ways that people actually cease to live. One thing that struck me when reading this is that he deconstructs the fantasy of a dying with dignity. Very few people are granted the luxury of a clean and easy "go in your sleep" death. Most deaths are rough, unpleasant ordeals not unlike the violent way we come into this world. There's rarely any dignity about it, unfortunately. He also discusses the concept of dying of old age. While many people die due to a major identifiable cause, but those that truly die of "old age" typically have 3-5 or more major organ systems in trouble that are ready to go at any moment. If it's not one thing, it's another. Being able to code a patient's heart back into service temporarily won't do anything to prevent any of the other major problems from claiming their life the very next day or week.

I hope this information may be of some help.