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My mom was having a not-feeling-great-but-nothing-specific day not long ago (she in is mid-stage dementia, so she can't really be specific, doesn't even know her name anymore), so I took her to the doctor. All the usual labs done, nothing out of the ordinary. Doctor listens to her heart. Mother has had a slightly irregular heartbeat for a while, but Doctor detects maybe something different. She got an EKG. Nothing shows up. We are sent to a cardiologist to be on the safe side. Cardio doc spends 5 minutes with her and wants her to do a physical stress test. His assistant, who spent 30 minutes with Mother, and I tell him that's not a good idea due to her physical instability (she's on the verge of needing a walker). He agrees to a chemical test instead, and wants her to wear a heart monitor for 24 hours. Mother is in assisted living, so you can imagine how long the monitor lasted. I imagine they got 8-9 hours of feedback before she ripped it off.


Fast forward to a conversation yesterday with a friend (73 years old, otherwise good physical and mental health) who is getting a pacemaker due to an arrhythmia discovered during a physical stress test. He's describing the procedure and aftercare to me and it dawns on me that this is a possibility for Mother. For him, it's very doable and makes sense. For her?? Then I hear from my sister after a conversation with her best friend about her own 89-year-old mother who has been getting annual chemical stress tests and friend is questioning why? Mom doesn't have a heart problem. Is it just because Medicare will pay for one annually, so why not? Mom, who is a tough old lady, also describes the test as making her feel like she's going to explode.


I'm trying to prepare myself, and my siblings, to make some decisions. So, finally, my questions:


1. Does anyone have experience with the chemical stress test? How do you think a dementia patient would fare? Is it worth it?


2. If we do the test and a pacemaker is recommended, is that a good idea? I've been reading some really sad stories of people in total decline whose hearts just keep on ticking. And there seems to be a lot of confusion and conflicting info on getting one turned off if it comes to that.


3. If a pacemaker were installed, the procedure sounds simple enough, but the aftercare would probably require skilled nursing for a short time. What's the likelihood that all of this together is just going to send her into a further decline? Does anyone have experience with that?


4. Is this all overkill? We're getting into a new area in Mother's care that will require us to make decisions in her best interest, including maybe NOT doing something. I don't want to go down the road of having things done just to say we did, so we won't feel guilty or like we're being negligent. At what point in the life of a person who doesn't even know themselves anymore do you just say no? We don't want her to suffer, and she's not - she just doesn't feel like running any foot races.


5. We have her Medical Directives and we're all alternates on her Medical POA; has anyone had problems executing powers in the face of medical recommendations?


Thanks in advance for any and all input. I'm pretty sure of my thinking on all of this, as are my siblings, but would especially appreciate anecdotal feedback.


GA

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I placed my mom in a facility when she was 91. She had mid-stage dementia. She was physically healthy for someone her age, but I know that if she’d had some health issue that really didn’t cause her pain, I would not have subjected her to tests and monitoring. She had a mastectomy in her early 80’s and didn’t want that. We “maintained” her comfort while she was in the NH. She was easily confused and disoriented when I took her out. A trip to the dentist left her in the Twilight Zone. We treated her symptoms, but did not subject her to testing and monitoring.
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glsdaisy Aug 2018
Thank you for your supportive answer. I took her out just to get her hair cut last week and it was unnerving to her. I think you're right - "maintain".
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The chemical stress test may or may not be well tolerated by a dementia patient - it's going to depend on the stage of the dementia and the personality. My dad had panic attacks where he had a high pulse rate with difficulty breathing and thought he was going to die. I believe the stress test induces a similar feeling as the heart is chemically stimulated to beat harder and faster like someone is exercising heavily. Depending on how well your mother can understand and remember what is going to happen during the test she may have problems. Best case, your mother is uncomfortable during the test but has no real problems. Worst case, the stress test could be a traumatic event for your mother or result in her death (just like the treadmill version, sometimes these tests induce a fatal heart attack).

What treatment would be changed by the results of the test? If you decide that you would not want a pacemaker or other surgical options then there's no reason to have the test.

There are some studies indicating that anesthesia causes significant declines in dementia patients although for some reason it doesn't seem to impact vascular dementia patients to the same degree as other forms of dementia. If she has a pacemaker implanted she may not have any more periods of irregular heartbeats but she may skip a stage on her dementia journey and be much less functional afterwards.

I suggest discussing medications that might help with the irregular heartbeat before considering either a stress test or a pacemaker. My retired nurse great-great aunt choose at 92 to endure occasional episodes of irregular heartbeats instead of more aggressive treatment. She died in her sleep more than seven years later just two months short of her 100th birthday.

For anyone with mid or advanced dementia I believe in providing basic medication treatments (blood pressure, thyroid, diabetes, etc.) and comfort care to reduce or eliminate pain while avoiding other tests and treatments.
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glsdaisy Aug 2018
Thanks for a thoughtful and informative reply! Mother literally does not remember her name anymore, and is becoming more and more anxious about being out in the world. She wouldn't understand what the test was for and why this was being done to her, which just seems cruel.
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Me, I wouldn't do it and I am surprised that a Dr, recommended it. My husband had a treadmill one a few years back and I worried the whole time. They take you to the limit.
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glsdaisy Aug 2018
Thanks JoAnn,

I was surprised, too, but at the time accepted that he "knows what he's doing". I live in a small town, and when I mentioned this at work, a co-worker said "Oh, Dr. so-and-so's dad is nearing 80 but he's a marathon runner, really active, so that's the doctor's experience". Then the other incidents I talked about above made me question even more.

In my research I came upon the following article. I realize that it's about one family's experience, but it gave me some things to think about. It's very well written.

https://www.nytimes.com/2010/06/20/magazine/20pacemaker-t.html
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