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.

[salsabike]

These are exactly the conversations I had to have with my mom in the last year, who, many of you know, died about a month ago.

I talked to lots of nurses who said if they could, they would have "DNR" tattooed on their foreheads, for exactly the reasons described in other posts above--resuscitation can break ribs, and only about 10% of people leave the hospital in the shape they came in. Finally, my best friend from 4th grade, who is an ICU nurse, came to talk with my mom. She's known Susie for 40 years, so was comfortable discussing it with her, and after that she signed a DNR/DNI order. Basically what Susie said was that at her age, resuscitation or intubation would be done only when everything medically possible had been tried, and that neither would change the effectiveness, or lack thereof, of the medical treatments.

These are conversations that really need to be had. That same friend Susie has told me many stories about ICU patients whose families insist on keeping them going far past their bodies' capacity to really live. Once a tube is in, it's a lot harder to take it out, than to never have it placed in the first place.

I spent many hours in the last year talking with my mom about this stuff. It's major emotional heavy lifting, but if you don't do it, your parent may end up in a much worse situation. You have my TOTAL sympathy here. If, Mr. S., Silver is willing to help here, I hope you consider allowing her to do so.

[BleeckerSt_Girl]

I know what I am about to say may not be the popular view here, but....
My mother died last year at 83. Four years before that she was not sick yet but named me in her living will as the person to make decisions for her in the event of her being unable to. She did NOT want to be DNR status, and made it clear to me that she wanted all possible chances pursued. This was not my preference but I was following her instructions.
Then she had a major heart/lung crisis. She was put on a ventilator and resusitated and many other things done. She seems likely to die, but she pulled through. After 4 months(!) in the hospital and rehab, I moved her to a nursing home near me. She continued to improve, and a year later she and I were able to have an entire year together where I could take her to restaurants in a wheelchair, we could tell stories and laugh and listen to music together, sit and read out loud under the trees in the courtyard. Yes she was forgetful and sometimes not happy, but that year was a precious gift we never would have had together if she had been DNR.

Later on she had more crisis, a stroke, and deteriorated again. In the end she was permanently on a ventilator and her quality of life was no longer good- she was not super aware anymore.
At that point I was told that I could supercede her DNR orders at any time, since she legally designated me to make her medical decisions. I still waited, and I rescinded her DNA orders only when her kidneys began to fail and she would need dialysis to survive in addition to the ventilator. We did not request the dialysis because we felt it would be too disturbing and unpleasant for her...and she was peacefully gone within 10 days of that, with me by her side.

I guess my point is that one can be on a ventilator longterm and still have some decent quality of life, even recover to an extent that one could enjoy good times with loving family for a while again. Being on a ventilator is not necessarily a permenant thing- vents can get you through a crisis- my mother went on and off one several times during her last 4 years. Plus, if someone is on a ventilator they can still request that their heart not be restarted if it ceases to beat. One can even feed oneself and talk while on a portable vent, which was amazing to me.
Of course there are degrees of all these things and nothing is ever as simple as we think when we head into it. I learned an awful lot that surprised me during my mothers' last 4 years and while I spent time observing others in that nursing home.
I was glad I got that extra time with her- it was difficult, but it helped me as well as her deal with her passage into her next journey.

I do agree that it is imperative to talk with the ailing person AND to get a living will and perhaps Power of Attorney drawn up legally and signed.
I think it helps to tell them that you want to be sure you can enforce THEIR wishes for them when no longer can speak for themselves. That you will speak FOR them and carry out their wishes. Tell them the "state" will make decisions for them if they don't designate you to. True, and scary!

[Running Mommy]

Mr. Silver... I don't have anything to add. Both sides have been represented quite well here I believe. And really it is YOUR decision on how to handle this. But I just wanted to give you my support and tell you that I am praying for you and your entire family.
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.
I'm sending cyber hugs your way.
Denise

[bikerchick68]

A lot of really great info has been shared here already...

Do you know what Mr Silver Dad's wishes are? If he is unable to make the decision, the time may come when you will have to. This is such a personal thing for people... their reasons why they want DNR orders or don't... and there is no right or wrong. You have to make the decision that is best and healthiest for your loved one. Which typically isn't what is best for you...:(

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

also here is some info that may be helpful about making the decision whether to use or not choose DNR:

http://www.emstar.org/dnr.html

I feel for you Mr. Silver... I dread the day, as we no doubt all do...

[wannaduacentury]

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.

Hugs to you both. My dad died of cancer in may and he spent the last 2 days in the hospitall(if he came home- we were doing hospice) and DNR(do not resc) was his request as well w/ power of attorney signed over to my mom. He wasn't as old as Mr.'s parents, but It's hard with parents. We don't want to lose them and when they are ill, it's just that much worse, but you don't want them to suffer either. The only way I know is to break it to him as gently as possible and make sure nothing else stressfull is going on at the time. My heart goes out to you. Jennifer

[solobiker]

Mr. S, as you know from some of my previous posts, I have had several years of experience working with the older population. I have seen this issue happen too many times to count. It is a very hard decision to make and not an easy conversation to have. However, it is actually easier to have this conversation done before something happens. I say this because when, and if a crisis does happen it is hard to make decisions with a clear mind and you may feel rushed and get very frustrated. I only say this with what information I have from your current situation. I do not know what is going on with your parents medically, including declining cognition (if it is). I know you will make it through this rough time as you are a very strong person. Just know that I hope you can find your strength to do what you feel is best for you and your family. My thoughts are with you.

[BleeckerSt_Girl]

This is a bit premature, but it's something I was dismayed to learn when my mother did die and hopefully someone reading this may benefit from it....
Power of Attorney ENDS when someone dies. It will no longer mean anything. Thus, whoever has POA will be unable to do anything related to the deceased person's financial/legal matters the moment that person dies. If there is a bank account, etc., it will become immediately frozen by the bank or institution and be inaccessable until the estate is settled. When a person dies, that is the moment the person's legal will takes over, and one must then wait until the estate is legally settled by a lawyer under the will's terms before being able to do anything. If you have POA, try to make all logical legal and financial arrangements and provisions before that loved one dies. You will be powerless from that point on except for what the will stipulates, and that can take time.
Don't learn this the hard way like I did. Just a tip from one who has been there.

I was lucky to have discussed my mothers medical wishes before she got sick. It is difficult and often impossible to get someone's real wishes after they have had a stroke or other serious crisis. Well worth bringing it up. When I broached the subject with my mother, I brought it up by telling her where I'd like my shaes scattered when I die someday, then I asked her. This made it a bit more of a philosophical two way street conversation.

[LBTC]

Mr. & Silver, lots of butterflies of peace, acceptance, understanding and clarity.

I really don't have anything more to add, I just wanted you to feel a bit more support right now.

Hugs and butterflies,
~T~

[silver]

Wow! you ladies are just wonderful. You've all given thoughtful and helpful and encouraging responses and I thank each and every one of you.

I've been pretty busy today and haven't had a chance til now to read the replies and I just spoke to Mr. and know that he may be now reading over this and responding.

I wanted to answer a few questions that were raised.....

they do have a legal will and a living will. Mr. and I are both POA's. (good info Lisa about POA, but I think that since Mr. is executor that may help...Mr.? ) But the Doctor pointed out to me yesterday that he's finding that living wills do not address this issue of an out of hospital crisis. The EMT's will initiate CPR/defibulator/intubation unless they have very specific instructions otherwise. The Doctor said that it would still be appropriate to obtain more routine care such as IV/nutrition/antibiotics and diabetic care.

At this point he is listed as *Full Code* at the assisted Living facility where he lives. We discussed these issues in a general sense when the wills were executed, but did not discuss it to the detail that we need to at this point, like....do you want CPR. Also, this was about 2 or 3 years ago and his health was better then. Two years ago when they moved to the assisted living facility from their home, the facility asked us about this issue and I told them DNR, but consulted with Mr. and he changed it to full code (I think that we discussed it briefly with the IL's but they were so overwhelmed by the move I don't know that they were aware). I think they would have done anything that Mr. told them to do.

So, fast forward to now......FIL has increasing dementia. He has had diabetes for 45 years. There's no one specific thing wrong, but his body has taken a huge toll. However, it's the dementia that's most difficult. In my uneducated understanding...The dementia is from decreased blood flow to the brain resulting from overall decline in the functions of his body.

Sometimes he is very clear but other times he is in a fog. The foggy times are increasing. Last year he had a very serious "episode" We didn't think he'd make it through that one, but he rallied. But his dementia has increased since then.

Addressing Lisa's very good points.....I think that if his mind was clear the decisions would be different...or if there was hope that it could get better.....

I do not believe that hospice the solution at this time because he doesn't have a specific illness and he is getting all the care that he needs now. And he could remain at this status for some time now.

as to why the issue was discussed with me rather than FIL and MIL. I've been taking them to doctor's appt for 5 years now. I consider it my job to keep up with medical info and care. I've been their advocate in this manner through I'd say 20 to 30 emergencies, illnesses and hospitalizations. I attend all their appointments and have a better idea of their medical history and prescription history than they do. Their doctor knows this and includes me in all their exams. When we were at the doctor on Monday, FIL was asleep almost the entire time. We could wake him up to ask him something, he'd reply, "I dont' know" to all questions and then fall asleep again. The doctor is completely willing to discuss this with FIL but I told him that I had to discuss it with Mr. first. The doctor offerred to meet with all of us to discuss.

I'm sure I'll think of some more issues...but that's enough for now.......

again, thank you all for your helpful and encouraging posts!!!!!

[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.:confused: :confused:

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.

[Starfish]

My mother died 8 months ago, at 81, and my dad died 4 months ago, at 85.

One difference in our situation was that neither my mom nor my dad had to go to the hospital or nursing home. For a couple of years, I lived with them, and along with 2 of my brothers, we did all their care until they each died at home.

Neither had an obviously terminal illness, and a hospice nurse was still able to be involved, for which I will always be deeply grateful. They facilitated pain prescriptions and practical care advice for my parents, but the support and information they offered to us as the caregivers was crucial. This included the moral support we needed to deal with the toll that providing round the clock nursing care put on me and my brothers. We also got a very sane, holistic approach to the dying process that we did not always find in some doctors we dealt with (although many docs were wonderful). We also got alternative opinions about such things as hydration vs. dehydration, etc, in the final days. I was alone with both my parents at the end, and I was deeply grateful for the materials Hospice had provided so that as things changed, I could recognize various signs and realize what was happening. It helped it all be less alarming. It was very helpful.

I am deeply grateful that both my parents had legal documents specifying their very specific wishes, not only about DNR orders, but also about the administration of antibiotics and all kinds of care orders. My dad stayed lucid, and was able to voice his opinions right to the end. My mom lost her marbles about 3 months from the end, and became non-verbal with about 1-1/2 weeks to go. I found that their having created those documents was a very respectful thing to have done for us kids. And, I believe that the very frank talks I had with both my parents to clarify some things were also very respectful toward my parents. And, after they were both gone, it was very comforting to know that I had done all that I could to follow their wishes, rather than flying blind and making my own decisions for them.

A couple of things I would say:

1) Each person grieves differently, and accepts situations and emotions in different time frames. My experience with my siblings is that if a person just is not ready to deal with something, no amount of forcing can change that. In our family, some were able to initiate and have the hard talks, with parents, doctors, and others. Others weren't, and still aren't able, really.

2) One reason I was grateful for having my parents' wishes already in writing was that it allowed us all to talk with my parents about things other than their care in the final months, weeks and days. We were able to focus on other deeply personal and important talks, with many big decisions made. (Of course, there were daily care decisions that became exhausting anyhow...no way to completely forestall that, but the BIG ones.)

3) Both my parents found it deeply comforting to know that we were all prepared to be honest and blunt with them about their dying processes. They knew they were dying, even my mom, who came not to know who I was. They were grateful they felt they could trust us and grateful that it was all out on the table. They articulated this over and over.

4) A very safe, non-judgmental place to process and talk, away from others in the family, was extremely helpful for me. For me, this outlet was Al Anon meetings, which I had already discovered as a God-send for other situations in life. I imagine there are others. Hospice runs groups, for instance.

Finally, Mr. Silver, Silver, and all SilverKids...my heart aches for you. This process was profoundly difficult and life-changing. While I feel utterly privileged to have had the opportunity to care for my parents (there were moments of deep beauty and blessing amidst the exhaustion and agonizing grief), I know that the responsibility and heartbreak can seem to be almost too much to bear. Please don't try to bear up under it alone. Call hospice. Call your friends. Call a counselor. Find the sources of support you will need...both for all the practical help you need, and for all the emotional help you need. Cut back on other commitments. Find the space you need. Take breaks. You may become much more tired than you realize.

Hope that all doesn't sound like a lecture. I care very much. Please PM me any time.

[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.:confused: :confused:

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. :(

[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.:confused: :confused:
Here is a link to a frankly blunt discussion thread (http://forums.studentdoctor.net/showthread.php?t=420377) 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 (http://www.amazon.com/How-We-Die-Reflections-Chapter/dp/0679742441/ref=pd_bbs_sr_1/002-0976511-3212041?ie=UTF8&s=books&qid=1185439214&sr=8-1), 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.

[Meg McKilty]

The low-down and high points:

POA, living will, will, care measures (this is a new[er] list that adds if the person becomes incapacitated if they wish for palliative (comfort) care, IV fluids, a feeding tube of some sort, etc), DNR/DNI (do not rescucitate/intubate, which ARE two very different things), funeral plans, and anything else important.

It is very important to know WHERE TO FIND THESE DOCUMENTS. We have had personal family problems in the past with someone making an unofficial will and putting in a certain place, only to have his daughter throw it away in the trash [on purpose], rendering it a useless piece of paper and defaulting every posession to her.
-Her attourney advised her to do this, by the way.

So, get a notary for an afternoon (if he can handle it) and go over everything. We had to do this with my grandmother, but you might be surprised by what they have to say.
I, being only 23, have already written out mine and made my wishes clear and known to my parents what I want in the case of the papers being misplaced or mishandled.

Place your name on the bank accounts as joint accounts. This is a simple procedure that can be done in 10 minutes with the persons permission. If they are not mentally stable enough to give you consent, you can obtain a doctors letter to state this problem to your bank. You still have access to the accounts if they die suddenly, though some holds may still be placed on the account(s). However, you may also wish to place some of the money in a separate account to have in the case of sudden passing and needing it for funeral and other expenses.

Also, hospice can be used in the cases of people without terminal illnesses at the time. I work on neuro, and see people come in with massive brain hemorrhages and other problems, which render them completely debilitated at much younger ages, go home or to a facility on hospice. Do not rule this out just yet; something tragic may happen.

It is much better to know a loved ones wishes than to wing it.

[SouthernBelle]

The mention of a POA causes me to throw in one more thing. Standard POAs technically become useless when a person becomes incompetent. It must be a durable power of attorney.

[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:( :(

[quint41]

My mother (86) has a living will with DNR, and I am her med power of attorney. She and my Dad had the whole package done several years ago so everything would be taken care of if they ever got sick.

I agree with Aquila -- why did the doctor come to YOU with this? Did he discuss it directly with Mr. S's father first? I would suggest a quick call to the doctor and ask him to break the ice with Dad. If he's like my mother, things like this are better heard from a doctor. (Older people tend to look at doctors as one step away from Gods, and will listen to what they say -- I know this from experience!)

Don't be upset that Silver brought it up, Mr. S. Not only are we all anonymous, but this is what women do -- we help each other through stuff.

[Mr. Bloom]

I agree with Aquila -- why did the doctor come to YOU with this? Did he discuss it directly with Mr. S's father first?

Don't be upset that Silver brought it up, Mr. S. Not only are we all anonymous, but this is what women do -- we help each other through stuff.

I think this is the answer...that is, the doctor needs to 'break the ice'...it's not that I am unwilling, but because of other considerations unique to us, it's a VERY COMPLEX issue...

quint: I'm not upset with Silver (at least, not about this :D :D ) Anonymous or not, this is a very bright, insightful, and balanced group...(:rolleyes: :rolleyes: even without its 'token male':p :p )

I'm frankly relieved by the forum discussion because it catalyzed my thoughts and helped bring clarity to my 'internal debate'.

[salsabike]

It's really hard figuring out who should be part of this discussion. The first time at the hospital last summer, it was three of the family practice doctors plus a nurse or two, plus me and Mom. The medical staff were very good and very nice, but still they were strangers and not people she knew well and trusted, and you could see it was kind of overwhelming and unnerving for her. And with me, I think there were some feelings of maternal obligation that got in the way too. I was lucky to have this best-friend-for-forty-years who was also a long-time ICU nurse, who could come and yak with my mother about this. It was someone she knew and trusted, with lots of knowledge about the topic. At the end of that discussion, she looked at Susie and said, "THANK YOU. You have no idea how much better I feel about this, and I'm ready to make some decisions about it."

So it's complicated, you know? Sometimes the doctor, sometimes the family member, sometimes a trusted friend or advocate...and it seems to work differently for each person--that is, who is the best person to have the discussion.

[northstar]

I wanted to let you two know that I am thinking of you and your family. I haven't been through anything like what you are sorting out, and my heart goes out to you.

[silver]

My mother (86) has a living will with DNR, and I am her med power of attorney. She and my Dad had the whole package done several years ago so everything would be taken care of if they ever got sick.

I agree with Aquila -- why did the doctor come to YOU with this? Did he discuss it directly with Mr. S's father first? I would suggest a quick call to the doctor and ask him to break the ice with Dad. If he's like my mother, things like this are better heard from a doctor. (Older people tend to look at doctors as one step away from Gods, and will listen to what they say -- I know this from experience!)

Don't be upset that Silver brought it up, Mr. S. Not only are we all anonymous, but this is what women do -- we help each other through stuff.

Actually I believe that the living will may have a DNR somehow imbedded in it.....Mr. can you check....

but what the doctor is saying is that they need an "Out of hospital Do Not Resuscitate Declaration" That can be filed with the Assisted Living Staff and close at hand to give to EMT's if they are called. Otherwise CPR/defibulation/intubation will be initiated and continued probably until they reach the hospital.

And I'm sorry, I answered this above about why the doctor communicated this to me and not FIL.

"as to why the issue was discussed with me rather than FIL and MIL. I've been taking them to doctor's appt for 5 years now. I consider it my job to keep up with medical info and care. I've been their advocate in this manner through I'd say 20 to 30 emergencies, illnesses and hospitalizations. I attend all their appointments and have a better idea of their medical history and prescription history than they do. Their doctor knows this and includes me in all their exams. When we were at the doctor on Monday, FIL was asleep almost the entire time. We could wake him up to ask him something, he'd reply, "I dont' know" to all questions and then fall asleep again. The doctor is completely willing to discuss this with FIL but I told him that I had to discuss it with Mr. first. The doctor offerred to meet with all of us to discuss. "


And I'll elaborate....I was in the room with my FIL the entire time that the doctor was there. MIL was having her exam in another room. Just prior to the doctor entering the room, I had asked for a private conference with the doctor to discuss a specific matter concerning my MIL. I went back to the room with FIL (a nurse stayed with him while I was gone to make sure he didn't fall out of his chair) Dr. came in and began to go over issues. FIL was asleep. We could wake him up to answer a question but he'd answer "I don't know" to every thing we asked. The doctor went through the list of problems and I ended up supplying answers for everything. At the end of this, he asked me what code status he had and I said full code. He said that we may want to discuss and reevaluate that. He said that it was unlikely that he would come through CPR/defibulation/intubation well considering all the decline in overall health that we were seeing. FIL was there but asleep.

I told the Doctor that I needed to discuss this issue with my husband before we did anything else. The doctor wrote a note on the orders to schedule a meeting with all of us ASAP.

Then I took them back to their home so they could get lunch and went to the store to get some "supplies" for them. I went back and went into the nurse's office to discuss issues with them. The nurses told me that just after lunch that FIL had fallen asleep again and they couldn't wake him up. His blood pressure was very low. She said that it quite a bit of rousing to get him awake. They report these kinds of things to the doctor and the doctor replied back to tell me to rush the out of hospital DNR discussion.

I hope this answers why the discussion happened the way that it did.

[makbike]

Silver Family:

You guys are in my thoughts and prayers during this very difficult time. I simply can't imagine what you must be going through.

[cyclepixie]

Silver and Mr. Silver - I've been lurking for months - registered just to share this with you. My husband has an Alzheimer's related dementia. Early on we did all the paper work - POA, living wills, wills, medical proxy, estate planning for us both. At diagnosis he was 55, i was 42 and our kids were 16 and 12 - so we really needed to cover all bases. In NJ only a special state out-of hospital DNR form would be honored if he coded - my daughter (an EMT) has told me so many horror stories that I carry the DNR form and medical proxy form in both my purse and car and have one on each floor of the house.
I love my husband dearly. As hard as it is to refuse certain medical care I know he would never ever want to live this way. His right to dignity comes before my selfish need to keep him with me. There ARE worse things than death.
My thoughts are with you - cyclepixie
PS: I hope everyone out there has thier own living will -

[Bad JuJu]

Good point, Cyclepixie--let's let this discussion at least remind all of us to make sure we have our own living wills.

Silver and Mr., I can't add much to the thoughtful, intelligent, sensitive responses already here, except that in my own experience, it is sometimes actually easier for the non-child to deal with aging parents.

My mom passed away with Alzheimer's 9 years ago and now my dad is in an assisted living home with the same awful disease. And in both their cases, the Chief (DH) was such a dear, sweet SIL to them and was able to get my mom to sign her name long after my dad and I had given up trying. (Eventually, of course, she lost the ability, but somehow the Chief was able to calm her and get her to focus when she still could.) And then, when the dementia was getting a grip on my dad, the Chief was the one who stepped in and helped out with showers and other grooming tasks that Dad simply would not have wanted his daughter to be involved with. And the Chief initiated the living will/POA/DNR conversation, too.

Two things: (1) the Chief is just better than me at that kind of thing, and (2) though he loves my folks, he doesn't have the emotional baggage that I have with them, so it can be a more reasonable, less emotional situation between them.

None of this may even apply to your situation--just my two cents, in case it can help. My heart absolutely and completely goes out to you.

[Mr. Bloom]

So, what catalyzed my thought?

Good objective feedback from our friends here based on personal experience.

But mostly, I visited Mom and Dad a little while ago. When I was leaving, Dad said "I Love You" in a different way. It was like he was saying "Good Bye". While I don't think that it's imminent, maybe he knows...who knows?

So, what am I going to do?

First, I will convey the doctor's comments to them
Second, I will pose the question to BOTH of them and ask what they want
Third, I will honor their wishes


I hope this happens tomorrow, but this is a conversation that has to happen at the right moment...so, now we have to create the right moment.

I know this is the right thing to do...at least for us. Wish us luck!

PS: CYCLEPIXIE: Stop lurking...hang around for a while!

[Starfish]

Mr. Silver, I sent you a PM.

[silver]

Silver and Mr. Silver - I've been lurking for months - registered just to share this with you. My husband has an Alzheimer's related dementia. Early on we did all the paper work - POA, living wills, wills, medical proxy, estate planning for us both. At diagnosis he was 55, i was 42 and our kids were 16 and 12 - so we really needed to cover all bases. In NJ only a special state out-of hospital DNR form would be honored if he coded - my daughter (an EMT) has told me so many horror stories that I carry the DNR form and medical proxy form in both my purse and car and have one on each floor of the house.
I love my husband dearly. As hard as it is to refuse certain medical care I know he would never ever want to live this way. His right to dignity comes before my selfish need to keep him with me. There ARE worse things than death.
My thoughts are with you - cyclepixie
PS: I hope everyone out there has thier own living will -

Thank you so much for sharing and for making your first post here to do so.

And to each and every one of you, thank you for sharing little pieces of your lives to help us.

[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:(

[Starfish]

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

Oh Mr. Silver, this is so very true. I'm so sorry.

[Tuckervill]

Just want to pass my warm thoughts in your direction, Mr. This is not easy, but you are handling it very eloquently.

Karen

[Cindyloo]

Mr. Silver,

I have been following this post but didn't really have any advice to give. I know as an only child that, God willing, I will be faced with this someday. I appreciate you and Silver for bringing up this topic and giving me something to think about and some solutions before I have to face this situation.

[Mr. Bloom]

Oh Mr. Silver, this is so very true. I'm so sorry.
Well, I'll add a little levity to the whole debate about the night that we swapped roles about 4 years ago:

They go to church on Saturday evenings. We made plans to pick them up at their house after church to go to dinner.

When we picked them up, Mom was upset - indicating that she 'nearly had a wreck' in the parking lot at church.

At dinner I inquired more...here's the story:

She was backing out of her space
Her foot was 'stuck' so she couldn't stop
She 'may have hit' this car, but there was no damage:confused:
Dad said: "she was saying she couldn't stop, but I couldn't GET OUT OF THE CAR TO STOP IT because of the the automatic door locks!":rolleyes: :rolleyes:


Later, I inspected her car, saw another car's paint. Called the church, called the sheriff, but no complaints. Phew:) :)

So, that night, I had to counsel:

my mother on the virtue of not leaving the scene of an accident:eek: , and
my father on the prudence of not getting out of a moving car (at least not without his walker!!):eek:


The next night, the police called to report a "hit and run"...there was $11,000 in damage done to the other car that mom "may have hit".:o :o

This is why I favor regular renewal of elderly licenses!:)

[cyclepixie]

LOL
That story reminds of when I started cycling after a 20 year gap and I said to my daughter -"well when I get too old to drive and they take my license away - at least I can still ride my bike"
So my daughter says " Ummmmm - Mom think about that!":eek:
PS - Great job on 'the talk'

[Starfish]

Mr. Silver, thanks for your amusing story. It is true. Amidst all the angst of the past year, there were some really funny moments created by my mom's mental regression/disorientation.

One day when I was feeding her breakfast, she made a face like she no longer liked the breakfast she'd been eating for years (yogurt with almonds). I told her she didn't have to eat anything she didn't like.

She looked right at me and defiantly turned her head and spit a whole almond out as far as she could, about 8 feet, and then just looked at me sideways with a wicked smile, like she knew she'd done something naughty.

[maryellen]

thx for posting this, Mr Silver. especially your dad's comment about wanted to get out to stop the car. I'm in the midst of dealing w my 93 year old dad's decline over the past year and definitely needed some humor.

PS, years ago I had to report my father to the state authorities as someone whose driving abilities were questionable (he lives in Florida where they have a designated form for so doing). That was hard.

[quint41]

Hey, Silver .... might I just say ...

... quite a guy you've got there. I've got to find one like that!!



Take care.