Issues with elderly parents and some encouragement for Mr.

[silver]

So, at the risk of upsetting Mr. I'm going to post a little about the issue that we are faced with.

This is difficult for Mr. and he needs a little encouragement.

He is an only child and his parents are in their late 70's. They live in an assisted Living Home that is very near us and I help them with doctors' visits and shopping and any needs.

His father is declining and yesterday the doctor advised me that it may be time to .....well....I don't know how to say this in an appropriate manner.....but think about how to let him go with dignity.

He's still doing OK and may have plenty of time but the doctor has suggested that make arrangements that if he has an emergency that the EMTS and nursing staff at the home NOT initiate CPR/defibulater/intubation. The doctor said that we should still direct that he get IV fluids/nutrition, antibiotics, diabetic care in the case of trouble but that he would be unlikely to come through the trauma of CPR/defibulation with any quality of life. EMT's are obligated to do this unless we take action to request that it not be done.

In order to do that, we must discuss this with him and have him sign a form stating this fact.

I'm willing to discuss this with him but Mr. is not.

Obviously, Mr. is having a trouble with this. Please give him some positive encouragement and ask him to please forgive me if he's upset with me for posting about this.

If would also be helpful if anyone else have experience on how to deal with these issues in a positve manner and with the most dignity possible.

[SouthernBelle]

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.

[KnottedYet]

We had to do this with my dad. I agree, do all of it at once. That way nothing gets singled out, and you can discuss all of it in context.

[Blueberry]

Hugs to you all!

Mr. Silver - This is a very difficult issue, but it is *much* better dealt with now than when something happens. When my Grandfather passed away, he did not have the appropriate paperwork for EMS to not attempt to use defib. The county where they lived had recently changed the requirements, and his forms weren't enough. He had been in a decline for weeks, and we all knew it was coming, but they still had to attempt to revive him (even though it was obviously way too late). This is not a way to die with dignity. Please, please talk to him before you mother has to go through what my Grandmother did. Remember that all you're doing is giving him the choice about his life and the quality of life he chooses.

I've been blessed that my elderly relatives have all initiated the conversations themselves, and let us know what they wished (and had the appropriate forms in place) with the exception of my Grandfather. I don't have advice to give on how to start the conversation, except to say that you want to know what he wants so he has the choice.

Good luck - my thoughts are with you!

[Aquila]

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?)

I'd get the family together with the doctor and have the discussion. Yes, it's hard. BUT, a doctor can explain what happens when they start doing all the electronic shocking and stuff, and how very few people (of any age) leave the hospital (even if they were inside already when the code was called).

I've heard about lots of broken ribs, and about a 15% chance of success (=leaving the hospital alive) at best. It doesn't sound like a good way to go at all.

BUT, the doctor can also help you get the directives so there's pain management and so on.

Editing to add: /comfort to Mr. Silver. These discussions are incredibly hard all the way around, and I'm sorry that you have to face this. I'm glad you have Silver's support, though, and wish you all well working together.

[indysteel]

Silver and Mr. Silver. I'm sorry that you're faced with this. My parents are still in decent health so I have not had to deal with this personally, but I feel for you all the same.

Have you thought about talking to someone at your local hospice organization? For one, Mr.'s father may be eligible. For another, they may be able to help Mr. deal with his own feelings, responsibility, fears, etc. and find a way to approach this matter with his father in a loving, respectful and calming way.

Just a thought. In any event, I will keep both you, Mr. and his parents in my thoughts and prayers.

There may be others, but here's a link to a hospice in Evansville. http://www.vistacare.com/locations/site.php?13

[Duck on Wheels]

When Trek's and my mutual Dad was nearing this point, he took the matter up himself. We didn't have to introduce the topic, just listen and respect his wishes. Also, the hospice folks, when things progressed to where our Mom needed their help, took the initiative to discuss what they would and wouldn't be a party to (it happened to be a Catholic hospice, the only one that covered that area). Basically, they said that if he chose to die, they would respect that. They would offer him food and water, but not force feed him. If he made it clear that he was choosing not to eat or drink, they would provide him with mouth moisteners to stave off thirst, pain relief to stave off pain and hunger, and any other comforts they could provide. If he did not eat or drink, he would die within two days. And that was what he did do, although it's unclear whether he chose to do so and quickly slipped into a coma, or whether the coma came on and he therefore didn't have to choose.

My deepest sympathies, Mr. Silver. Losing a parent is painful, even though intellectually we know it must happen eventually and know they've had a long and fulfilling life. Talking about it beforehand is also painful. Our culture tends to prefer denial rather than openly discussing death. Maybe the staff at the care facility can help out? They're used to dealing with the final stages of life. Or maybe just sit quietly, make yourself available, and let your parents bring up the topic? Or take your time, work out the words, and with a good hug from Silver for courage, find a way to ask your Dad if this is a decision he wants to make on his own and, if so, how he might signal his wishes.

[mimitabby]

gee, don't wait. We tried to have this conversation with Raleighdon's mother a number of times. she always responds that she has lots of time to do that later. Now her alzheimers is so bad she doesn't know what house she's in. It's too late to get her to do anything.
She absolutely refuses. But when we had the conversations, neither RD or his brother were able to even bring it up. I had to (they were cool with that)
so it's sort of like good cop bad cop, if you possess the wherewithal to discuss this with your father in law, go ahead and do it (with Mr's blessing of course)

[SouthernBelle]

Hospice is a great thing, but doesn't appear to apply here. He isn't suffering from a terminal disease except old age.

Second the point that the doctor should be more involved here.

[KnottedYet]

Basically, they said that if he chose to die, they would respect that. They would offer him food and water, but not force feed him. If he made it clear that he was choosing not to eat or drink, they would provide him with mouth moisteners to stave off thirst, pain relief to stave off pain and hunger, and any other comforts they could provide. If he did not eat or drink, he would die within two days. And that was what he did do, although it's unclear whether he chose to do so and quickly slipped into a coma, or whether the coma came on and he therefore didn't have to choose.

When my dad was at that point, Hospice very clearly explained to us how much morphine was an overdose and what would happend if my dad was accidentally given that much morphine. (he had a push-button morphine pump)

"accidentally"

I love Hospice. Truly, they are wonderful caring and generous people. They understand. Don't be afraid to ask them for help if you have trouble or can't bring something up. And they are very good about handling paperwork and legal forms and bringing them up to the clients.

[Mr. Bloom]

We had the conversation. Without hesitation, both parents affirmed that they want NO effort made in prolonging their life.

Here's a challenge to each of you who may face this issue going forward. We spent a small fortune getting my parents affairs "in order" a few years ago. BUT, now so many questions remain unaddressed in all the documents that were signed.

Starfish kindly found and sent me copies of a document that her mother executed before her death. Here are specific questions that you might consider if you face this problem:

• do you want cpr?
• do you want any mechanical breathing assistance?
• do you want artificial nutrician and hydration?
• do you want major surgery?
• do you want dialysis?
• do you want chemotherapy?
• do you want minor surgery?
• do you want invasive diagnostic tests?
• do you want transfusions?
• do you want antibiotics?
• do you want simple diagnostic tests?
• do you want pain medication?

Some of these have easy answers, some are complex. While I think the consensus of all the posts here are in support of "having the talk", the devil's in the details...and I may have not even thought of some of these issues.

At the end of the day, my parents said to "keep them comfortable, but let them go..."

It's a tough day when the kids and the parents swap roles

[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.