Issues with elderly parents and some encouragement for Mr.

[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.

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.

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.

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.

[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.