Tests and medications

It's a great question and one everyone should explore as a potential caregiver not just in the context of dementia but also for other chronic conditions and advanced age.

Two books I like to recommend are these so that you have an understanding of how interventions can impact QOL.

https://www.amazon.com/Being-Mortal-Medicine-What-Matters/dp/1250076226/ref=sr_1_1?crid=10GX42YQXIU3&dib=eyJ2IjoiMSJ9.O8nlroT8DDaFjJHaURYYZxHTQL-alx3fqn08wKraCCmWlxN9IKsUSETIRMzGb3uJKf4UB_b7lCUpNTO6wA_LAkFMW7mu4TkfsICp_5DqL-nyJmk3da_f-idtFBdyDVqH8YcuNXbZObxVESt6gxhkHzEhGw6FLWhFxFo6l-_2yWcL7PJqjs_55YHWj9f-RKof3z_qtPXgdkZhyO3HkK5R2nOM80T-weOJAsX29x6oJl4.jk52TMBG8XwLWEuvCyZhrAb1iLUCgvmd34sTXz2a8Hw&dib_tag=se&keywords=being+mortal&qid=1752682467&sprefix=being+mortal%2Caps%2C165&sr=8-1

and

https://www.amazon.com/dp/099726120X/?bestFormat=true&k=hard%20choices%20for%20loving%20people&ref_=nb_sb_ss_w_scx-ent-pd-bk-d_de_k0_1_16&crid=3I0G7ZI4XMS1W&sprefix=hard%20choices%20for

I think the answer is very nuanced with many factors to be considered. My DH and I were discussing this last night in the context of my mother. She does not have dementia, but I am seeing signs of potential MCI. At 87, with multiple medical issues and a team of doctors that's currently 9 deep, it's a lot to consider. We've already opted out of much screening. With any procedure or test I ask myself "What am I going to do with this information?" She doesn't tolerate osteoporosis meds, so there's no point in doing a DEXA scan. Colonoscopy and mammography have to potential to trigger additional testing and potentially unpleasant and time-consuming treatment— not the way in which I would want mom to spend her final years if I can avoid it. I'll maintain a relationship with the pulmo who keeps her breathing as good as it can be as well as her psychiatrist and retinal specialist (she's responding really well to treatment for AMD/GA) but I'd ditch things like dermatology.

With dad, we ditched some of his meds including statins, metformin (T2D) and BP meds around stage 6 when we started a more palliative approach to his care. We did continue dad's ADT for a recurrence of prostate cancer; it was only a twice-yearly injection, and I secretly hoped flushing testosterone from his system might make him less aggressive so I encouraged mom to continue it.

A friend honored her mom's wishes not to treat breast cancer after age 80 when mom stopped getting mammograms. Her mom was diagnosed at 91 by her PCP who oversaw palliative care and encouraged hospice for pain management.

If I recall, your wife is considerably younger, so the choices with which you might feel comfortable, especially in the earlier stages, might look different.

HB

This is tough!

I was the first one in my family to draft a Living Will. As a nursing instructor, I taught students and counseled patients and family about its importance. Years prior, I had my ethics and morals turned upside down by the handling of the Terri Schiavo case.

That made me see the importance of putting my preferences in writing, and so I did.

My DM finally did hers about 12 years ago. I know it was difficult for her to make that decision so I applaud her. She is a DNR if it comes.down to her heart stopping. If she has cancer, she does not want chemo.

Only since joining this group that I have been forced to consider what my response is to your question about continuing medical visits.

With dementia in the equation, I am now of the firm belief that chasing all other diagnoses and treatments are in fact my attempt to prolong her stay here with me.

I am actually planning to have a heart to heart discussion with her this weekend about her proceeding to do a surgical procedure believed to be able to rectify a cardiac anomaly of hers. I have kept my opinion to myself thus far, but that was before her official diagnosis in December. I now believe that the anesthesia will worsen her state of mind and I am going to suggest that she not proceed.

Taking meds, I have no problems with. Surgeries are no longer viewed as a safe option.

Tough road to travel.😢

This is a very difficult question, and for me the answer changes somewhat as the disease progresses. At any stage I would want to prevent falls, and other such injuries. Cancer treatments I would not want except for pain management. But interventions for something like a heart attack, I would want during an MCI stage, but not stage 6.

I did talk to my husband about this when he was first diagnosed with MCI. Our lawyer provided a worksheet with lots of scenarios for us to think through. I am grateful I have that to rely on. But my husband is someone who has never said no to a doctor appointment or test. And despite what he told me, and wrote about his wishes, I can totally see him now wanting every appointment and test offered for any condition. He has lots of executive function deficits, but his language skills suggest otherwise. At this point, probably stage 4, I think if his doctor diagnosed some sort of cancer he would say he wants to treat it. What do I do then? My husband’s wishes now or his wishes 2 years ago?

For as long as it is well tolerated, I would continue with the regular dental exams and cleanings. I am a big believer that you do want to stay on top of the dental side for as long as possible. The other stuff is more nuanced.

My mother had in home hospice care for her stage 4 cancer. When it was obvious to everyone that the end was near, the hospice workers were still very concerned about bowel movements. I recall thinking it was odd how fixated they were on pooping when we were so close to the end. I trusted they knew what they were doing. I followed their guidance carefully and mom passed peacefully soon after. Apparently if she was constipated, it could have been a much different ending.

My point being that what you choose to focus on and what you choose to disregard is not necessarily what you might think. You wait until the decision is upon you, get as much information as you can, make the best decision and move on without regret.

She has an official diagnosis of dementia. I did request an MRI in HOPES of figuring out the type; and getting her on a specific treatment plan. I've now come to realize that there is no treatment plan that will undo the deterioration and decline she will invariably face.

I think I said it before, I learned of "cognitive reserves" here. I believe that is what surprises her healthcare team, leading them to believe she has "MILD cognitive impairment/EARLY dementia."My mom, being a retired RN, still retains her nursing knowledge. She is still capable of discussing her medical diagnosis, healthcare needs, and preferences. I now go to her appointments basically to standby.

The other day her pcp was ordering a medication by its generic name, mom referred to it by its brand name. That is knowledge she acquired almost 40 years ago. The nurse is still in there. It's her short term memory that is shot to bits.

I probably am indeed breaking the rule but I can't take away her self-determination when I see she is still currently "in there." That is why I plan to ask her not to proceed with the surgery, rather than me telling her surgeon not to do it.

The day that DH got his ALZ diagnosis, we made the decision that we would do nothing that would extend his life. He gets meds for things that will keep him comfortable. No more invasive anything. If he gets cancer or such, we will treat it only for comfort.

Having said that, when he got Covid and ran 102+ temp, I did take him to Emergency Care. Was that for comfort or healing? I can't say. I'm just not ready to be a widow.

I guess the reality is that some decision are easier to make than other. Wish you well with yours.

I think there is a category if items we normally look out for which do not themselves lead to early death, but instead are chronic conditions to be avoided. That is why this subject is so complicated. I think staying on top of dental work is in this category. Ignoring dental issues is not necessarily going to result in an earlier death, but it will take what is already a difficult situation and make it more miserable.

Some of these things we ignore at our own peril.

My DW has been in the very last stage, Stage 7f, for about six months. As I have noted here, she is considered to be “minimally conscious” but does grimace when moved or handled, so she does feel pain. We (hospice and I) have discontinued all medications and other treatments that would extend life or would only be of a long term benefit. But we continue with anything that ensures comfort or prevents discomfort from developing. For example we recently had her teeth cleaned by a visiting hygienist. I don’t want her to develop pain in her teeth that would make her final days more miserable than they already are. We carefully check for and treat sores of course.

The original poster asked “ If we do stop tests and medications, are we killing our loved ones?” My indirect answer is that at this point I would not want to do anything that would extend my DW’s misery by a single day.

My mom just had cataract surgery and there was no side effects from the very mild anesthesia. She is a solid stage 4. But I get it. It’s hard to know what is best. I have wondered if she will even live long enough to make this surgery necessary. She has vascular dementia, that progresses more quickly.

I posted here before, but I left something out. Four or five years ago my wife got a call to set up a mammogram. I took the call and informed the caller about her condition and how I felt that the concern over breast cancer was the least of her worries. The caller agreed and never called again.

Great question! I ask it all the time as DH is on a medication that is supposed to slow the progression or Dementia. I am no ethisist but to me slowing it down seems like prolonging the disease that has no cure and is always fatal. I went through this with my parents who lived to be 90 and both died with dementia. It seemed like they were being tortured for the last few years of their lives.