End of Life Decisions

[Depression = 72% of members]

My mom's county conservator called me yesterday and my mom was admitted to the ER. She is usually up walking around,  which is how we saw her two months ago,  but she had been laying (lying?) in bed for a few days. 

A doctor at the ICU called me this morning.  He told me that she tested positive for influenza A. I think they like to be specific to designate that from B and also the people who incorrectly say "stomach flu."

He told me that she wasn't very responsive and couldn't tell him her name.  I forgot to tell him to call her by her nickname,  "Bobbi" rather than her given name. 

He asked me how bad her dementia was.  I told him that she didn't know who we were when we saw her early January.  He told me that when dementia gets to a certain point that people can't remember how to swallow.  I didn't know that as it never occurred to me. 

He said that he didn't trust her to swallow and that they could insert a feeding tube into her stomach as an option but it needed to be decided.  I told him I knew what he was asking of me.  He said the decision didn't need to be made right then,  since she is on IV, but that he would call me tomorrow to see how things went.  They had her on meds,  likely Tamiflu, but I didn't ask. 

I know what my mom would want.  She told me years ago that she didn't want to end up in a nursing home and wanted to "die on the hill." Her property. I could relate to that feeling. 

I can't help but think of Terry Shiavo, but also that starving to death is a horrible way to die.  But that also she just wants to go home and not suffer anymore,  mentally or physically. 

I also need to call the conservator back tomorrow to make sure I'm legally able to make decisions.  I did sign a DNR over a year ago when she went into the home, but I'm not sure of the status now.  Don't want to end up in prison. 

We'll see what he says tomorrow. 

[Turkish]

My mom's county conservator called me yesterday and my mom was admitted to the ER. She is usually up walking around,  which is how we saw her two months ago,  but she had been laying (lying?) in bed for a few days. 

A doctor at the ICU called me this morning.  He told me that she tested positive for influenza A. I think they like to be specific to designate that from B and also the people who incorrectly say "stomach flu."

He told me that she wasn't very responsive and couldn't tell him her name.  I forgot to tell him to call her by her nickname,  "Bobbi" rather than her given name. 

He asked me how bad her dementia was.  I told him that she didn't know who we were when we saw her early January.  He told me that when dementia gets to a certain point that people can't remember how to swallow.  I didn't know that as it never occurred to me. 

He said that he didn't trust her to swallow and that they could insert a feeding tube into her stomach as an option but it needed to be decided.  I told him I knew what he was asking of me.  He said the decision didn't need to be made right then,  since she is on IV, but that he would call me tomorrow to see how things went.  They had her on meds,  likely Tamiflu, but I didn't ask. 

I know what my mom would want.  She told me years ago that she didn't want to end up in a nursing home and wanted to "die on the hill." Her property. I could relate to that feeling. 

I can't help but think of Terry Shiavo, but also that starving to death is a horrible way to die.  But that also she just wants to go home and not suffer anymore,  mentally or physically. 

I also need to call the conservator back tomorrow to make sure I'm legally able to make decisions.  I did sign a DNR over a year ago when she went into the home, but I'm not sure of the status now.  Don't want to end up in prison. 

We'll see what he says tomorrow. 

[Learnnow]

Turkish, I am so sorry that you are going through this.  I’m praying for you at this difficult time.

[I Am Redeemed]

I'm so sorry to hear about this, Turkish.

We almost had to make the feeding tube decision last year with my mother. She was dying of lung cancer, and she got to where she was confused and disoriented. Then she would barely eat. She was moved to hospice care and she did improve somewhat with the eating, so we stayed in limbo on the feeding tube thing, not knowing if it was really necessary just yet. However, she went downhill over the course of one weekend and passed away suddenly the following Monday.

It's really hard when you have to make these choices, because none of them feel exactly right. My heart goes out to you.     

 Redeemed

[Cat Familiar]

I'm very sorry, Turkish. Don't worry about your legal status. From my experience, DNRs are merely a formality.

My mom who had dementia, steadfastly refused to sign an Advanced Directive. She just did not want to confront her own mortality.

When she had a serious stroke and could not swallow, I decided to cut and paste her name onto my own Advanced Directive, copy it and bring it to the hospital. I was a bit concerned as the typeface was not a perfect match, but no one even looked at the document.

I knew she wouldn't want to be kept alive with extreme measures. Her dementia was rapidly overtaking what was left of her mind, and at that point, there were no good medical options left.

[Turkish]

Thank you both.  

My mom was a 2.5 pack a day smoker from 14 to 75. She had the cyst on her ovary 7 years ago and got a hysterectomy. About the same time it was breast cancer and she got a bi-latetal mastectomy. Her mom was dying of ovarian cancer at 49, and my aunt died of it at 53 in 1983. Neither of them smoked.

About 1989, I was amazed that my mother moved a full sized freezer off a 1973 F250 Ford truck into her house by herself.  I wouldn't have done that without at least one friend my age. She took pride in being a "tough old broad." That she was.  

I think my mom's neighbor "fenemy" might have been right about the black mild and filth contributing to her mental decline.

9 years ago, she wanted to climb on the roof with us to help tarp her roof and we convinced her not to.  I don't scare easily, but I was very careful given the slope and how slippery the tarp was.  She was definitely a tough old broad.

[Turkish]

Thanks Cat. She might get better, but i know what my mom would want.  And i would want the same. Release me.

I still can't wrap my head around starving to death though...

[Cat Familiar]

Yeah, it took a while for my mom to pass away. However, she got wonderful care from the nurses at the Transitional Care unit, who were so sweet to her and kept her comfortable.

If you've never done a long fast, it can be quite blissful. I used to do two week fasts and once I got past the hungry phase after a couple of days, I was so energized and elated, I could imagine never eating again. So I can only assume that going without food at the end of one's life might be similar.

My mom was a tough old broad too. She regularly climbed into the trash dumpster to jump up and down on the yard waste and would climb over the neighbor's fence to prune branches off their tree when she was in her 80s.

[Harri]

ask the doctor about this.  what do they do to keep her comfortable?  will she feel hungry?  Does he think she will be aware?

He should be able to answer those questions.  with the IV now, she is not feeling hungry and is not going through dehydration. 

Keep us posted okay?

  

[No-One]

Sorry about the situation with your mom.

I tend to look at 3 things:
1. What the person would want

2. Chances of ever removing the feeding tube and what level of recovery is possible from all conditions.

3. What quality of life would the person likely be left with?  Would the feeding tube just prolong misery and would they just end up only existing in a care facility.

My mom bounced back & forth between hospitals and skilled nursing facilities, during the last months of her life. Like your mom, she caught Influenza "A", while in a skilled nursing facility and then ended up back in the hospital. Personally, I don't think that nursing facilities take enough measures to prevent the spread of Influenza within their facilities.(I'll hold my rant on that)

Even without dementia, swallow testing and a possible feeding tube were brought up by medical staff on multiple occasions. We opted to NOT have a feeding tube inserted.  A ventilator was suggested as well, and we declined that.

We ended up with pursuing more of a palliative care approach.  We treated infections/conditions with meds, but we declined the feeding tube or intubation.  We did opt to keep an IV and to offer some less invasive breathing assistance.

I wish you well.  I know medical decisions for end-of-life care can be very difficult.  With my mom, I knew she loved food.  A temporary feeding tube with hope of some future quality of life would have been okay.  A permanent feeding tube and nothing to look forward was a choice I couldn't make.

[GaGrl]

Turkish, I'm so sorry you are dealing with this difficult decision.

The question about how long the feeding tube would remain and what the likelihood would be of permanent is really important.

My grandmother had emergency surgery due to intestinal bleeding (severe diverticulitis for many years). As often happens with the elderly, the surgery went fine, but she developed pneumonia. The doctor persuaded my dad that a respirator would ease her and help recovery. Dad clarified several times that this wasn't a life support situation. Then she could never be weaned from the respirator, and Dad ended up making a decision he never intended to be in a situation of making.

Take care of yourself. Try to anticipate what could happen over the next few days and weeks and months.

[Turkish]

I got a call from a nurse this morning.  My mom was better Ann's aware,  but the nurse noticed that she had a broken hip. It likely happened at the nursing home. 
I just got off the phone with an orthopedic surgeon who discussed options,  with the usual CYA. He said the best thing would be to stabilize the break.  It's still a surgery, but if it heals, then she will be bed ridden for less time, and being be ridden has its own issues.  I gave permission and I'll hear more tomorrow. 

[Harri]

Okay, good I think though I don't know about orthopedics enough to really understand.

Make sure they are having a CNA make sure she uses a spirometer while in bed to help ward off pneumonia while healing.  It is important. 

How are you holding up T?

[Turkish]

 I'm alright,  thanks for asking. It's Logic Mode Wolf. No,  I'm not supressing my feelings, just thinking through the right thing to do.  Maybe my thread needs to be retitled... though it's good to talk about these things for others who might go through it which is likely a lot here. 

[No-One]

I got a call from a nurse this morning.  My mom was better and aware,  but the nurse noticed that she had a broken hip. It likely happened at the nursing home. 

So sorry about the hip. The surgery should give her the capacity to get out of bed sooner. Just wondering how it's possible for her to break a hip and have no one at the nursing home comment on the incident (no one saw it?).

In hindsight, perhaps I do understand.  My mom didn't have dementia, but I learned that infections can temporarily affect the elderly's mental functioning.   The staff tended to NOT pay enough attention to patients, or just ignore what a patient might try to tell them. Also, later shifts seemed to not have enough staff members to attend to patients. 

Hope the surgery goes well.  Thoughts and prayers you way. 



 

[Harri]

Well, thinking out loud here is good too.  You will get support and people checking up on you though... just the way we roll here right?

Keep us posted. 

[Turkish]

The surgeon called and said that it went well. They are keeping her because the internal medicine people are treating her for the flu and also dehydration. I'm starting to wonder how well or not the nursing home took care of her. She'll be there a couple more days. I may wait until she goes back to the facility to go visit with the kids.

[Harri]

Thanks for the update T. 

Visit her when it feels right for you.

[Kwamina]

I am glad the surgery went well

I'm starting to wonder how well or not the nursing home took care of her.

Was thinking the same thing...…

... just the way we roll here right?

Yes, that's true:

[No-One]

I'm starting to wonder how well or not the nursing home took care of her.

For California, the current web address to check on nursing homes is below:
https://www.cdph.ca.gov/Programs/CHCQ/LCP/CalHealthFind/Pages/Home.aspx

You can view complaints for the last 2-3 years, along with the findings.  They used to show staffing numbers, but looks like they aren't providing that info any longer.  The trend seems to be to do more with less, or in some situations, less with less.  They definitely try to do more with a lesser skill level.  I tend to think that it's hard to find a nursing home without some issues, especially for patients who aren't able to advocate for themselves.

You might want to inquire, via the conservator, about how your mom broke her hip.  Depending on the info. uncovered, it might be best to make an official complaint.  Then, the situation at the nursing home would be reviewed for possible corrective action with the State inspectors. 

Elderly people can easily fall.  I guess the bothersome thing is not so much that it happened, but how could it go unnoticed.  She had to have had pain associated with the broken hip and definitely would have been less mobile.  Someone on staff should have noticed a hip problem, with the proper contacts being informed.