Issues with elderly parents and some encouragement for Mr.

[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 ) Anonymous or not, this is a very bright, insightful, and balanced group...( even without its 'token male' )

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.