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Being Mortal - highly recommended book is also a film. Link here
ButterflyWings
Posted: Saturday, June 18, 2022 5:52 PM
Joined: 12/11/2018
Posts: 1036


I did not know this was a film. Will be watching it tonight. Expecting to help me accept what I know is coming with my DH (and all of us at some point!). With so many decisions asked of us as caregivers, it can be tough to know what is best at times. 

Just like with 'fiblets' I learned here that the right answer is the one that provides the most comfort. That was our early-mid-stage reality. Now that I have a late stage 6 LO who is knocking on the door of the final stage...7. More than just a number on the chart, it is end stage. He could go any day (as could I actually, life is like that we know) -- so I thought I should take a look at this material as a reminder of how to make this rough journey as smooth as possible at this point of his progression. Turns out it is the same answer in a way: what will make him the most comfortable? 

Here is the link. I imagine parts will be hard to hear, and watch. Though I have lost extremely close LOs before, and was the primary in-home hospice caregiver for a stroke victim who I dearly loved -- this is my husband. Truly the love of my life. It is breaking my heart daily when I don't just immerse myself in trying to stay one step ahead of AD. This man is, or I should say was, my other half in every sense of the word. I could not have had a better partner to share the last 20 years with and I hate that he is almost gone most days now, anyway. Yet still here, which is different from Stage 8. All the more reason to reflect on "Being Mortal" now. 

I hope some of you will also check it out and that it helps face the facts and the fear, if you do.


​fesk
Posted: Sunday, June 19, 2022 6:33 AM
Joined: 1/11/2013
Posts: 130


ButterflyWings, thanks so much for this link. I recently purchased the book and have not had the opportunity to read too much yet. I am trying to prepare myself. I don't know if I'm strong enough. It's a devastating disease and emotionally exhausting.

I will keep good thoughts for you and your husband.


dayn2nite2
Posted: Sunday, June 19, 2022 7:31 AM
Joined: 6/20/2016
Posts: 3100


BW, although I saw this when it originally aired, I'm going to watch it again, so thank you for this link.
CaringMate
Posted: Sunday, June 19, 2022 10:49 AM
Joined: 9/5/2018
Posts: 90


Thank you Butterfly Wings for letting us know that this incredible book is now a PBS Frontline film.  I have purchased dozens of this book for friends and loved ones over the years and will watch the film version today.  The book was a must read for every caring and thinking person trying to navigate healthcare in today's world.  I come from a medical family and I can tell you that while there are parts that are hard to hear, it is all true.  Thank you so much for posting this!
​fesk
Posted: Sunday, June 19, 2022 10:56 AM
Joined: 1/11/2013
Posts: 130


CaringMate, would be interested in how you think the film compares to the book. I haven't been able to read much of the book yet, but I would think it covers more than the film could at only an hour.
CaringMate
Posted: Monday, June 20, 2022 10:25 AM
Joined: 9/5/2018
Posts: 90


The documentary film does a very good job of showing patients how important it is to make decisions regarding your healthcare for yourself and not to depend solely on the doctors.  It is a touching and very realistic view of the state of medicine in today's world.  It does not, and can not in the limited time it has go into the detail of the book.  For as many books as I tried to give people to read, for the most part they would not.  The subject matter is too scary for most to deal with and would rather allow doctors to make decisions for them.  That is a horrible approach to end of life care as many doctors are at the mercy of the hospitals they work for and patients are routinely subjected to tests and treatments that do more harm than good.  The book explains this in great detail where the film only covers it briefly.  I would say that everyone should take the time to view the documentary as it is very well done.  After seeing it, take the time to read the book which will fill in the gaps left out by the film.  I can't stress enough how important both film and book are for people who want to leave this world under their own terms.
ButterflyWings
Posted: Monday, June 20, 2022 5:26 PM
Joined: 12/11/2018
Posts: 1036


My pleasure. I am happy to have found and been able to share this, and I did watch it last night after DH went to sleep. Very well done. Important conversations and the families' point of view in hindsight, was important to hear. And yes, quite interesting hearing doctors say the system isn't set up to approach this the right way. I think there should be more training on the palliative care, quality of life approach to health care. We really do not have that in our system.   

Even my DH's [former] long term PCP was surprised when I told them no, we are not doing any more colonoscopies or other elective procedures, and we're not doing new bloodwork or multiple labs and tests before ruling out the UTI I suspected was causing his issues. (And was right). It was a bit of a battle twice when I was just seeking a urinalysis with culture and oral treatment if bacteria is found. Period. They strung us along for 2 weeks with DH's behavior going off the rails. When I explained we were in a palliative care situation because DH, nearing 80, is terminal the PCP said "I didn't realize that". Though he was the one who delivered the memory clinic's assessment and should have understood it from the AD diagnosis. 
 
My beloved has a fatal disease and cannot be cured. So, if I think he has a silent UTI; let's not see this as an opportunity to admit him and run all sorts of random tests just because. It was clear the medical training and habit is to do every routine or extra test that insurance will pay for, even if it makes no sense. The author's honesty there was important. It took a bit of me pushing back repeatedly to prevail, and eventually I changed to a geri specialist for his PCP,  but many would not have that time, energy, or confidence (I had learned SO much here in this forum, and also researching on my own, but most of us rely on the Drs.) It does put too much on the docs shoulders as they are only human too. 
 
Being Mortal - must view/must read, I agree.
 
It is very hectic at our place still, leaving me no time to read a book of any kind honestly, but certainly not one like this that I want to really focus on. So the documentary was perfect and I will be taking your advice to read the book next, CaringMate. I now will not feel lost by picking it up and reading 10-15 minutes at a time since I got the framework and overview from the film.

Wishing everyone the very best.


​fesk
Posted: Tuesday, June 21, 2022 6:57 AM
Joined: 1/11/2013
Posts: 130


Thanks for the comparison, CaringMate.

Like ButterflyWings, I'm trying to get through the book in 10-15 minute windows. Not ideal.


mommyandme (m&m)
Posted: Tuesday, June 21, 2022 11:03 AM
Joined: 2/16/2020
Posts: 586


Thanks for sharing this!  I’ve found the book and the film.  Now, which do I start first?  I can do either while on the exercise machines… hmmm

I’ll figure it out, just want to say I appreciate it! 


 
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