New Here - Difficult Decision Coming Soon

BaxterF

My mother wrote a notarized 'Advanced Health Care Directive' that instructs us to not replace her pacemaker/battery if she has been diagnosed with dementia and there is no chance of improvement. She watched her father and mother both experience alzheimer's and it was deeply disturbing to her.

She has a year left on the pacemaker. She was diagnosed with Alzheimer's in October 2019, She is in slow decline, but is able to care for herself. Her short term memory is shot. She cries at night and I hear her saying "I hate my life" to the darkness. She has become more reclusive and seldom leaves her room only to sit on the porch or eat dinner with us. She does not ask for anything, even the basic necessities (toilet paper, soap, etc.). We feel like her attitude is that she doesn't want to bother us, but she says she doesn't need anything. Her response to most questions about her needs, her health, etc. is either that she is fine or "I don't know how to answer that."

All of her lifelong friends have passed. One of her younger sisters is in stage 4 cancer and can barely talk. She asked us to delete her # on Mom's phone because she calls to see how she is multiple times a week and in the middle of the night. Her other sister is frustrated because Mom tries to be her mother/caretaker. Her brother has alzheimer's as well. She has no one to talk to but us but seldom does. if we discuss anything, she does not remember any of the conversation after about fifteen minutes.  She refuses to go to adult day care because she doesn't like to be around 'those people' and declares total disinterest in games, crafts, exercise, etc. I set up trial days at centers and she gets 'sick' on those days.

My dilemma: Do I have her battery/pacemaker replaced so her heart beats for another 10 years no matter what her brain does? Or, do I honor her Advance Health Care Directive even though she has not yet declined to the point where she cannot attend to her own hygiene and is still able to recognize family members?

Her quality of life, as I see it, is poor. It appears that it will only get worse. If I get new batteries, she is going to experience the things she was trying to avoid with the advance health care directive.

I don't wish to kill her intentionally, yet I don't want to have her suffer the indignities she watched her parents go through. 

This is so difficult. I'm not sleeping well and think about this all the time. I'm at a loss.

M1

Hi Baxter.  Have you discussed this with her docs--primary care and cardiology?  That's what I would do.  I'm not sure how reliable the "dates" on those batteries are--while it might have approximately a year left, I doubt that it's that specific (like expiration dates on other items).  That said, my instinct would be to honor her initial, competent request.  But I would absolutely discuss it, especially with the cardiologist.  They will have had other patients in similar scenarios and should be able to give you some advice.

loveskitties

This appears to be both a legal and ethical question.

While in our right mind, we make out these Advanced Care Directives based on our knowledge and feelings at the time.  We expect not only family but physicians to abide by them.

From what I have read on the subject, there are no "legal teeth" to these directives particularly from a physicians' perspective.  It seems that if they feel the life of the patient can be sustained by performing the procedure, they can and most likely would do the procedure.

A lot can change in the year you have to face this head-on.  It is possible that her overall physical condition will be such that neither you or the doctors will feel it is medically appropriate.

You might want to talk with her cardio doc about your concerns.  You might also want to talke with her neuro or pcp to see about an anti-depressant for the current situation.

Wishing you and her the best.  So many hard decisions to face with this disease.

Stuck in the middle

I concur with the antidepressant.  If she still wants to discontinue treatment with her cardiologist when the antidepressant has had time to work, I would honor her request.  She has the right to refuse medical treatment.

JDancer

Is she "pacemaker dependent"? Some hearts need the implanted pacemaker to initiate all beats, with others, the pacemaker kicks in as needed if the rate slows. If she's not pacemaker dependent, her heart might function after the battery expires. Also, battery life is hard to predict if the pacemaker works as needed.

harshedbuzz

One person's opinion-

Your mother has already made this decision for herself. She went so far as to make a specific plan regarding the pacemaker (writing a notarized AHCD) rather than just a wish (talking about it in vague terms as my mom insists on doing- her AHCD stipulates that I make the call based on available facts at the time) or leaving you to interpret what she might want as it relates to the pacemaker. She made this plan at a time when her cognition was intact, and she made it as informed as an adult who had lived through her own parent's dementia. 

Anecdote: My late BIL was an ER physician who had seen people die in about every manner possible. He had serious heart issues and CAD and was a candidate for a pacemaker which he decided against. He felt it would rob him of the option of dying in his sleep and force him into a life he didn't want. He also worried that there may come a time when it would be appropriate to deactivate the device and he felt strongly that he would not want the responsibility of the falling to his wife or his children. So he opted out and succeeded in having the gentle death he hoped for during an afternoon nap with his dogs. 

For your mom, allowing the pacemaker battery to run out, could spare her the worst pain and indignities of the later stages of dementia. By the point a PWD reaches the later stages of the disease progression there is often a sense that the onset of some other swiftly progressive fatal event would be a blessed release from a wretched existence. 

That said, I would look into getting her an appointment with a geriatric psychiatrist to see about medication to alleviate her depression to some degree. My dad's geripsych was able to cobble together a cocktail to blunt his depression and even added a medication to activate him a bit so that he was more engaged with us for a time. 

I feel like your mom has given you the gift of relieving you of this task. It was her choice to make and she did so. 

HB

dayn2nite2

I would honor my mother's wishes, which were made when he had full capacity to decide.  If you went against them, believe me you would question yourself and beat yourself up for the rest of your life.

mommyandme (m&m)

I think honoring your mother is honoring her wishes as she instructed while she had her wits.  I don’t think I could live with myself if I abandoned my moms directives. What if some kind of terrible living was to come to her that’s even worse than Alzheimer’s and she had to endure that while her heart kept beating.  I don’t know, I’m just talking, really I know nada. 

I can only imagine the worry and heartache you are going through.  So sorry.

sandwichone123

I would hope that my son would follow my expressed wishes in this regard. Remember that removing/decomissioning artificial life support is not killing someone--it is allowing a natural death.

I would also be cautious of offloading this question onto a professional, like a cardiologist. Healthcare professionals also have their own biases as people and as people whose entire lives and livelihoods are based on keeping bodies going longer. If you wanted to offload onto a professional, an ethicist might be a better choice.

glitterqueenscare

Honor her wishes and what a blessing that she had the fore thought and took the time to make those wishes known to you.  She sounds like she knew the possibility of facing this disease and wanted to avoid lingering through the advanced stages if possible. 

Both of my parents had it and Grandparents and Great Aunts, etc. I know what my family medical history means. My biggest fear is getting it and lingering on for years as some of them had to endure.  

It sounds like your Mom had a clear understanding of what this type of diagnosis would mean and made her wishes known.  I applaud her strength and admire her ability to face the facts and make a difficult decision.  I actually think she did it with a lot of love for you and her family too to spare her loved ones the pain and agony of the protracted grief of watching someone unravel over such an extended period of time is very hard.

Her wishes were clear.  It is likely a physician would advise against it too.

May flowers

I am sorry for what you and your mom are going through. I agree with those who said that your mom made her wishes clear. Please don’t think of it as killing her but as letting her die a natural death. I see a pacemaker in the same way as a ventilator, it is a mechanical way of keeping someone alive who may not want to be kept alive by artificial means. 

We had a difficult experience with my mom who had ALS... she had a very clear DNR, signed as soon as she found out she had a dx of ALS. She knew how hard the end would be. She did stop breathing, she would have passed quickly with my sister and I at her side singing hymns to her. My brother would not produce the DNR, and called the paramedics to resuscitate her. She ended up languishing in the hospital for weeks and her death was much more painful and uncomfortable. She was crying for us to let her go...

I know it’s not the same, but i know my brother lives with a great deal of guilt for not honoring her wishes 25 years later.