Was I wrong? What would you do?

ButterflyWings

We are getting to a really gray area that I didn't see coming. Currently at a plateau...6d and holding for a while. The daily grind with his disease at this point definitely isn't easy but isn't terrible - for DH or me -  yet either. Some of the earlier days were actually much harder in different ways - like mid-stages omg.

I am prepared to not bat an eye with letting my DH's DNR wishes prevail. Cardiac arrest, stroke, any kind of traumatic injury or fast moving terminal anything, we will not be taking extraordinary measures to prolong his misery. That is something I know would/will be extremely sad (heartbreaking, literally) but I am clear that it is a much kinder way to go than having to ride the AD train to its bitter end in stage 7. 

Since there is no cure for AD and will not be in his lifetime, it is such a cruelly debilitating disease, and he lived a long accomplished life I definitely believe like many LOs here, that it would be a blessing if DH is to stroke out or die of something else. That could happen but is currently not on the radar since he is in great physical health for his age.  

Today, I saved his life. In a split second without even realizing it. 99.9% sure I would do it again, but that is the gray area. We were eating lunch and all of a sudden DH wasn't breathing. He either laughed or coughed, or just breathed in at the wrong time, but seemed to inhale (aspirate) a mouthful before he could swallow it. I realized it was stuck and he couldn't speak or breathe. I almost passed out myself realizing how serious things were. 

In a terrifying 2-3 seconds I realized he was about to choke (to death) and jumped up quickly, grabbed him from behind and did a really sloppy Heimlich maneuver (CPR, First Aid and AED certified annually for years but its been a while). It worked! DH thought I was crazy but started coughing (and breathing again thank goodness!) I apologized over and over for grabbing and manhandling him that way. Hugging and kissing him. I was SO relieved, but thought about it later. 

His lead nurse asked me recently to start thinking about what I will do when hospice can't (or won't) intervene -- and considering an ER override would just be prolonging the inevitable. Like, to think about when he is actively dying and (try) preparing to accept end of life, is what I think she was suggesting. Weird timing as he hasn't aspirated anything before today. 

I have responded to many posts here that I would not try to prolong a LOs "life" to extend their suffering from this horrible disease. Quality of life is a one way downward spiral here, and riding it to the bitter end is a terrible thing for any of our loved ones to endure. When it gets to the point of choosing surgeries or other extreme interventions to delay the inevitable, that is a no. His wishes and mine. However, DH isn't actively dying yet...but suddenly today, he was in minutes of being gone. I literally saved his life without thinking and was terrified it wouldn't work. 

Was I wrong? What would you do?

loveskitties

You were not wrong.  You did what needed doing.

There was a cure to the issue at hand and you provided the help he needed.

Stopping medical treatment is a whole different animal.

If it had happened to my father, I would have done the same.

Quilting brings calm

I would have done  what you did …except I’d be screaming because I wouldn’t know how to do that maneuver.   This situation  was a one time sudden issue easily solved with the maneuver. I can totally see why you never thought about not dealing with it.  I wouldn’t have  either.

However some of the issues hospice wants you to think about are things that could be fixed with simple procedures, but if not, could eventually be what he dies of.   Infections, etc.  it is something to think about and get in your mind ahead of time. 

I totally  get what you are saying about the serious medical issues too.  My mom doesn’t want to die of dementia.  She wants something  to take her first. Truthfully she wants something to take her soon, but that’s not likely to happen. She’s not got a lot of physical  issues other than mobility and some pain.    She  definitely still wants certain things like UTI’s and her feet neuropathy treated though. 

You may want to start considering that this aspiration might not be a one time thing. He may start doing that more often and it may result in pneumonia.  Which would be something that hospice nurse wants you to have a decision for. 

GothicGremlin

I have all of the same thoughts about this as you do, ButterflyWings, and I would have done exactly the same thing that you did. So no, I don't think you were wrong.

I probably would have had a minute of panic as well -- am I doing this maneuver right?? It's been awhile since I've taken CPR and the rest. Something for me to think about the next time a class comes up. Just for general principles.

M1

Wow BW, what a thoughtful  post. I would have done the same thing. No question. Something qualitatively different about an acute event like that, especially an acute choking incident.

harshedbuzz

BW-

Wow, this *is* a thought-provoking question. 

I feel like why happened in the moment was a very human reaction as opposed to a deliberate decision. Perhaps you would have acted differently to your DH's distress had you rehearsed this scenario in your mind ahead of time. Perhaps not.

I don't think what you did was wrong in any way. Further, your reaction once he was safely breathing speaks to it not being his time yet for either of you.

What would I do? Probably the same. I made a deliberate decision to continue dad's androgen deprivation therapy for a recurrence of prostate cancer over the objections of some family members who were justifiably not fans of my dad. They wanted to "allow nature to take its course and push morphine". While this was officially mom's call, she deferred anything medical to me. I was hoping to spare him the pain and potential disability of a pelvic fracture. I was hoping for a gentler landing for him and my mom. He died in his sleep most likely from complications of aspiration pneumonia less than a month after I made the decision. Hours before I brought him lunch and we had a pleasant visit where he flirted with the SLP and told me a crazy story about my sister having finally come to visit him. FTR, she died in 1994.

HB

May flowers

I would have done what you did. To me that’s not an extraordinary measure. Like when my FIL fell and was bleeding profusely from his chin, I didn’t stop to consider it, I tried to apply pressure and put on steri strips (I said tried because he was flailing, hitting and kicking at the time).

To me, choking would be a terrible way to die. A heart attack or stroke seems less so (I could be completely wrong) If a person is having trouble breathing or not eating during transition at least there are meds and support to make sure it is not as traumatic. Just my thinking anyway.

mommyandme (m&m)

I think what you did was “comfort care” for the most part.  His fear and pain dying from choking would be terrible.  I’m sure I would do the same.  I don’t think I’d be able to live with myself if I just let someone die that way without even trying.  If the Heimlich  didn’t work then so be it. That’s really scary btw…. I’m so glad you have some peace today. Thanks for sharing.

Jo C.

You did the right thing. Having him suddenly choke to death on food when preventable was a sudden, abrupt, temporary thing - Heimlich was not an extraordinary measure.  We are not intentionally killing our LOs and a Hospice nurse would have taken the same action.

This does beg however, careful watching to see what his swallowing is like.   It may be that changes in diet may have to be made and if it is appropriate, if changes in swallowing are seen, it may be helpful to have a swallow eval.   Cannot recall if he is on Hospice or not; if so, then an eval would probably not be part of their approach, but adjusting diet to accommodate his changes would be.

J.

wyoming daughter

You were not wrong, it was a knee-jerk reaction.  What is troubling is the things this disease makes care givers contemplate.  Gut wrenching experiences and decisions.  We just hang onto those extraordinary moments that do happen from time to time.  Hugs.

Stuck in the middle

You did what I would do.  This was no different than helping him put on a hat and coat before going out in freezing weather, or preventing him from walking in front of a moving car.

ButterflyWings

Thank you all for your thoughtful feedback. Helps me think through the practical things his hospice nurse was asking me.  That exact situation will probably never happen again, and if it does I will do my best to help him again. It will be something else unexpected though, as AD is always throwing curveballs. And yes, the things this disease makes caregivers have to second-guess themselves on...it contributed to my frequent headaches, I know.

Wishing everyone a peaceful weekend.

zauberflote

BW, I agree that you did the right thing, terrified as you were!. Choking was one of the issues I had to make very clear when my mother went on hospice. I could not bear the thought of allowing her to choke to death in terror and with pleading eyes. Our use of DNR meant to me, if staff discovered one morning that she had seemed to die in the night, they were not to call 911 and give CPR. (Something they were otherwise bound by law to do). 

While she was on hospice we had the difficult decision to make regarding a broken femur. Giving only comfort care, pain relief, would have caused a painful rest-of-her-life, bedbound. Even pinning wasn't guaranteed to allow her a comfortable existence. Only replacement could do that. We chose, finally, replacement. We were fully prepared for her not to make it through surgery (she was 91), but she did well. I still think we called that correctly, too. She lived another couple of months happily ambulating, and only truly began to sink fast when the place became so short of staff that they were forced to keep all "fall risk" residents rounded up in the common room. 

May you have  no repeats of that moment!

abc123

I think you did the right thing. I think I would have done the same thing.

eaglemom

You absolutely did the right thing. Chocking is totally different in my opinion than other reason's - stroke, heart attack, etc. That was a quick reaction which needed to be made. I'm glad that you were able to help him.

eagle

Olly_Bake

No, I absolutely don't think you were wrong. If you are a person with a heart and a conscience, you'll probably always wonder if you did the right thing. Should I have done this instead of that? Could I have done more? I truly know what you mean when you say, "I was relieved but thought about it later." My example, dad and the hip surgery. My thought every now and then, because of limited choices for best chance of recovery, is did I mess up getting dad off hospice and transported to the hospital a month ago when notified he was hard to wake. Oxygen was in the life-threatening stage among other issues like dehydration and pneumonia.

TheMonck

YYou are a loving caring wife .I'm glad you were able to help him.God cherishes our lives.He numbers our days.Our loved ones will slip away when God chooses.Compared to what I'm going through You are an angel.Keep inspiring us.

Michael Ellenbogen

AAll I could say is you were great!