Tests and medications
Here is a philosophical question for everyone to ponder.
As healthy human beings, we all do what we can to insure as long of a life that we can have. We eat right, we exercise, we take supplements. We do all the tests that is required by our age group like mammograms, colonoscopies, and so forth. We get flu vaccinations, RSV vaccinations and other vaccinations our doctors suggest. We go to dentist for teeth cleaning a cavities filled. If we have high blood pressure, we take our blood pressure meds, if we have elevated cholesterol, we take our statins, if we need to prevent blood clots, we take blood thinners, if we’re diabetic we take our insulin and so on.
The question here is with our loved ones with dementia, should we be doing all this to help prolong their lives? Do we do it because we want our LO to be with us as long as possible, even though they don’t know us anymore. Or should we just stop with the tests and medications and just let nature take it course? If we do stop tests and medications, are we killing our loved ones? Are there any legal ramifications if we stop?
This was a topic brought up at one of my local caregiver meetings that I attend. What are everyone’s thought on this topic?
Comments
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I'll jump in. My husband has VD, has had 3 strokes, atherosclerosis, emphysema, 3 aortic aneurysms, osteoperosis, multiple health issues. We are on palliative care, basically treating symptoms not fixing anything. DH doesn't want any more physical or cognitive testing, hates going to the Dr and doesn't acknowledge his health decline. I can't see the point of anymore tests, even routine. What's the point?? We don't get covid boosters and I'm even questioning a flu shot…What are we prolonging? More struggling every day…I think not. I wouldn't want that and know he wouldn't want to go the distance with dementia if he had a choice. I will question all further routine diagnostics and if his heart stops he will be a DNR. Tough choices we gave to face but it's made with love compassion. Each spouse must do what their heart and faith tells them is the right thing to do.
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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.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.
HB3 -
When my mom was first diagnosed I felt a strong need to get things back on track. We got her a new cpap(she hadn’t used one in several years because hers had broke) and made sure she was getting her medication properly. She did do a living will which was helpful. But other things have been more difficult. She refuses to wear compression socks, elevate her legs, eat a diabetic diet and exercise. She is stage 4 and these things may prolong this more mild stage. It took me a bit to accept this was not worth fighting over. She has been getting a flu shot (it’s offered at her al and she does it on her own). I am comfortable with not testing for cancer and that type of thing since there would be no treatment anyway. As she progresses I can see a time when some medications will be discontinued. Weather or not to feed someone who can’t feed themselves, wow that would be a tough one. I hope I never have to make that kind of decision. I do feel very strongly that a pwd needs care. Leaving them in their home, because that’s what they want, without proper care, is neglect. A pwd burning down their house, dying of heat exposure because they decided to go outside in 100 degree temperatures, or being hit while wandering into traffic or falling down the steps because they are unaware of their balance issues, because they are left to care for themselves, that wrong. But we all struggle to process this awful disease at a different pace. Tough stuff.
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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.😢
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@JulietteBee said:
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.
I realize that you do not have a diagnosis at this point, but this plan sounds a bit like a violation of the first rule of dementia fight club— never try to reason with a person who has a broken reasoner.In your shoes, it might make sense to gain clarity around her diagnosis/stage from the testing you have scheduled and then decide whether to proceed or not. Sadly, she may be past making an informed and reasonable decision at this point which means it's on you without asking for input she doesn't understand.
Dad made his wishes known; he was DNR/DNI. But the SNF where he went for rehab asked him about a DNR in front of mom and me at a care meeting. He didn't know what it meant. The moron who answered said "it means "if something happens, do you want help? or should we just let you die?" Seriously.
HB4 -
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?
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It’s not a decision to take lightly, that’s for sure. My husband has COPD. He isn’t on oxygen because his levels are very good. But hyper inflated lungs along with heavy mucus buildup has really impacted him. He hates going to doctor appts. And is more and more confused. Recently after a UTI an ER doctor suggested he see a urologist again. He’s already on two meds for enlarged prostrate. He said he didn’t want to see another doctor and I agreed. I wasn’t going to schedule it no matter what and knew he wouldn’t remember. Its becoming more difficult for him to swallow pills. I won’t put him through anything invasive, or more testing. It’s just too hard on him.
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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.
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This is related. My DW has been in memory care for 3 months. I became concerned about the lack of real exercise, aerobic or weight-bearing. DW is in pretty good health except… you know. I engaged a physical therapist/personal trainer to help maintain her muscle tone, balance, and flexibility.
I suppose it's reasonable to ask whether this is foolish. However, I would prefer that she avoid a fall that results in a fracture or an injury because she hits her head on something. I would hate for her to end up in a wheelchair, at least right now, because I don't think that would be good quality of life for her. At least at this stage (5-6), I'm not comfortable just saying "whatever".
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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.
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My wife was not eating for a few days so I started feeding her telling she needed to eat to keep her strength up. Then I realized keep her strength up for what. I stopped feeding her but I still encouraged her to eat. She was able to do it herself and after a couple of days started eating again. I have started thinking about all the medications she takes, Donepezil, cholesterol, blood pressure, diabetes, and more. She is in MC stage 6 with a toe in 7 and recently broke her arm so once we get that all dealt with, I think I am going to talk to the doctor about discontinuing some of them. It would be better for her die sooner from something else then to live longer and this disease take her. I wouldn't feel comfortable saying that any where else but I think most of you know what I mean. I have also thought about me and I am not doing all the regular test for someone my age. I am not in any rush to leave the earth but I am also OK with it if I have a serious condition.
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It is very difficult to make these decisions but it’s the compassionate loving thing to do. Why prolong the suffering? I stopped all specialist visits and testing at stage 6. I did not stop medications until the very last. I learned from this online community that if you have to make difficult decisions to play the scenario all the way out. As my DH progressed he started having problems swallowing. Eventually even liquids & puréed food. When he developed aspiration pneumonia the facility nurse asked if I wanted them to do an X-Ray. At first I said of course. Then the nurse said if they saw anything in the X-Ray they would have to transport him to the ER. So I thought about what I learned here… if it was aspiration they would do a deep suction of his lungs. If it was pneumonia they would keep him and give antibiotics. If either treatment was successful, they would transport him back to the MC facility. Then I thought to myself it would happen again and again due to his swallowing issues. So I made the extremely difficult decision not to do the X-Ray. He passed peacefully the next afternoon. He would not have wanted to live that way. I pray for strength for every caregiver who has to make these kinds of decisions. 🙏💜
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It is a good question, one I thought about a lot last week during my LO’s overnight hospitalization when I had to try to discourage him from pulling out the IV needle every few minutes throughout the night. I did understand why we were doing the IV, but I was less convinced that the heart monitor was helpful for someone with a DNR in place—and those monitor cords and beeping sounds were so annoying to him.
For now (prob. stage 6) we are persisting with dental cleanings and regular checkups with the PCP who has good values and understands geriatric care. We are not doing much testing—only enough to be aware of UTIs and troubles of that kind—and I would not authorize surgery unless it was essential to alleviate pain. Like a broken bone.
I am not seeking to hasten death nor to slow the natural progression toward it. But making decisions on specific instances requires thinking through exactly what we are trying to accomplish with the intervention. It’s not always easy to be sure.
@JulietteBee The “never try to reason” advice is something I modify a lot because of my specific circumstances. My LO relates to me best and most familiarly through reason, and talking through problems is one way we continue to connect. I don’t argue, but I do talk about decisions and suggest what I think “we” should do; I usually can elicit agreement, and talking with me about himself brings him comfort and improves his cooperation. I am capable of making all the decisions on my own—I don’t actually look to my LO for the conclusions—but going through the performance of a reasoned discussion works for us as relationship maintenance.
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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.
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I feel so relieved that others feel this way! I have been feeling very guilty for not wanting to fight my DH about taking his blood pressure meds. I actually started reading this discussion to find a way to get him to take his medication. I think I have found others who understand that there is no recovery from dementia, and therefore, no good reason to fight about the meds. I just want to make every day a good day.7
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It's such a blessing to have this space to discuss these very complicated matters. After years of walking through this awful disease with my DH, I wonder even for myself, how much testing, etc. I want to do. The goal for my DH and I was to lead a healthy life and exercise, have a good diet, etc. in order to enjoy our older years and grand kids. Now, in late Stage 6, his healthiness seems to serve only to prolong his suffering. He doesn't take any meds other than anti psychotics, as he is very healthy (and 69). I hadn't thought about some of this until this discussion - even though it is hard, I feel grateful that I've now been able to think about this ahead of situations I might face with my DH.
Thank you for all of you willing to share about these really hard topics as we walk this road together…
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My wife is in state 7, bedridden, not on any types of medication, and on Hospice. I can’t see any reason for lengthening her life, for either of us. I just want her to be comfortable. She’s still alert and eats like a horse. She can’t feed herself, but as long as she can eat she will be fed. If she stops eating, there will be no feeding tube or intravenous feeding.
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I have a similar issue in caring for my wife (late Stage 4/early Stage 5).
After lumbar fusion surgery in 2022 she went through about 4 weeks of delirium and very likely a permanent reduction in cognition. This is apparently caused by the anesthesia.
Now her cataracts have progressed to the point of warranting surgery. If we do the surgery her cognition is at risk, if we don't do the surgery we are violating the recommendation to optimize her sensory inputs like hearing and eyesight in order to preserve cognition.
We are between a rock and a hard place. The thought of foregoing the surgery has occurred to me for much the same reason as in this thread: why put her through that if she won't get much benefit out of it because of her disease.
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Mom decided early on in her diagnosis that she did not want any invasive procedures, wanted a DNR, no feeding tube, etc. Her doctor asked me if I was ok with that. I told him Mom watched my Grandma die of dementia and she didn’t want that for herself. At a certain point, we cancelled certain specialists and had the PCP prescribe those medications because she was tired of too many doctor visits
Meanwhile my step-dad changed his mind every year at the wellness visit, DNR, then full code, no feeding tube, then temporary feeding tube. ‘ As long as they can fix the specific problem’. I just let him talk because he was in his 80s, had dementia, emphysema and thyroid cancer nodules in his lungs. I had his medical POA and I wasn’t going to let them break his ribs to do chest compressions. Doctors will tell you that an awful thing to have done to you.
I did not attend Dad’s hospice intake -he wouldn’t have agreed to it if he knew I was in favor of it. The AL nurse suggested it, agreed with me about his stubbornness - she attended it. They took him off about half his meds.
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We've opted for no life sustaining or extending interventions. Quality of life (i.e. no pain) only. So, for now, he's still on a statin to avoid long-term heart injury that would be either painful or require additional living assistance. In an odd way, this is an interesting question. If you had asked the pre-ALZ-caregiver me the response would have been considerably different I think. Not necessarily the outcome but definitely the logic and understanding. When you have to grapple with days where you wish your spouse had a "quicker" disease the debate over life extending pills seems a bit of a cakewalk.
Sorry if that sounds macabre. We had a rough day today and this thread struck a chord and I needed to vent.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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