How much control over their medical decisions should a person with mild/moderate dementia have?

[pnwmom]

I'm looking for information to share with a loving sister whose way of taking care of our mother leans toward making all the decisions herself, after talking to the doctor. My mother called me after 7 this morning to tell me she was unhappy about one of these decisions.

Does anyone know any good resources for family members of the elderly with a mild/moderate degree of dementia -- with the issue being how much control the still-reasoning person with dementia should have over their own medical decisions?

My 85 year old mother has been taking one Aleve a day for pain due to a hip replacement along with arthritis. She hasn't been having any problems with that, but her GI doctor advised my sister that she should take Tylenol instead, which my mother doesn't think helps enough.

I know there are some risks with either medication, and so does my mother. She is forgetful but can still reason. (She even goes on the Internet and reads the news, although she isn't a whiz with Google.) What I have read is that taking high dose NSAIDS can raise the risk of a heart attack in the elderly from 1% a year to 2-4% a year. 'There is also a risk of stomach bleeding, which might be alleviated by taking the medication with food or one of various medications.

I'm not asking for more medical information -- I'm looking for something that can help us through the issue of how much control Mom should have in this decision. I think Mom should be able to take the risk if she wants to. But I live two thousand miles away. My sister is the one who lives with her most of the time, and has to deal with any immediate consequences.

Mom has no wish to prolong her life, especially if that means contending with pain.

[Faux pas]

1. Does she have medicaid?

If she does, you can have a visiting nurse come in to monitor her. Has she tried ibuprofen for her pain? I have spinal arthritis and fibromyalgia and it helps me a lot. Good luck to you mom, you and your sister. I took care of my mom with Alzheimer's for 10 1/2 years, what a wild ride that was!

[pnwmom]

4. Her doctor doesn't think she should take any NSAID, so that includes ibuprofen.

I understand that is the cautious approach, but Mom is 85 and not interested in being cautious if that means she's still in pain.

She's on Medicare, and so no visiting nurse. But my sister wouldn't care what a nurse said, since the doctor thinks that there are risks with an NSAID. And there are! But they also provide pain relief, so the risks have to be weighed against the benefits.

[hopemountain]

10. i seriously question the doctor said tylenol instead of 1 aleve

your mom is telling you how she feels and what she wants. she sounds fine to me to be participating in her medical care and decisions.

your mother may benefit from a medical advocate. if she is part of a particular health system or clinic, they may have a nurse advocate, health educator, ombudsman, or social worker you can contact to request advice or assistance with this issue.

hint: tylenol is less expensive than aleves.

[pnwmom]

12. The doctor who said that is a GI doc and family friend, who is adamant about that,

and doesn't even let his family members take any NSAIDs.

My sister takes his word as God, and I'm 2000 miles away, so it's tricky.

[hopemountain]

15. i am implying the doctor never said this

and that your sister made it up to not spend the extra cash - because neither aleves nor tylenol are covered by any insurance since they are over the counter meds.

unless you were in the doctor's office and heard him say it yourself.

i know it is unkind of me to think or suggest this - but as a clinical health educator for 30 years - i have heard and seen quite a bit when it comes to family interactions with doctors - and the other way around.

[pnwmom]

17. Actually, no, since I'm the one who pays the bills. She has just been scared

by the GI doc, who is a personal friend. Having done a little research on this, it seems like the specialists disagree on this. The GI doctors all hate NSAIDS and the arthritis doctors think there can be a justification for them, even on a long term basis.

[hopemountain]

19. thanks -

had a feeling there were some dynamics going on. so sorry you are going through this.

i have been on aleves for 20 yrs for inflammation. unless the weather is very warm and dry, i can only go a couple of days without them or i can hardly move. this is the difference between tylenol and aleve for me.

i will butt out now…

[pnwmom]

21. Tylenol doesn't help with inflammation, so of course you're better off with something else.

Every drug made carries some risks, but living with pain isn't a good choice either.

[Faux pas]

25. It's hard to make decisions for a parent's medical care.

Just MHO, I'd want them to be pain free. Maybe she needs a different dr?

[uppityperson]

2. Unless she has been legally ruled incapable of making her own decisions, it is up to her

If your sister has legal powers, then it is up to your sister.

As far as those different meds, Aleve (tm) is an anti-inflammatory as well as pain med, Tylenol (tm) is only pain med. One aleve a day is not "high dose" and they have found a low dose daily of nsaid will help decrease risk of heart attack and stroke. Talk to a medical provider in person or call a nurse line of your insurance company for more information.

[pnwmom]

5. Technically, I have the legal power, but my sister is the one doing day to day care

so I hesitate to exercise it in a way that will make my sister unhappy. (Actually, my Mom should have the legal power because she hasn't been ruled incompetent.)

Thanks for the info. I'll look for research on a low dose of nsaid.

[enlightenment]

7. I'm assuming you mean medical power of attorney?

You need to sit down with your sister and work this out. It sounds like you are giving her some leeway, since she is the primary caretaker - but it sounds like she is not as comfortable as you are with your mom's perspective on end-of-life care.

Work it out, really. Sooner, probably, than later, there will come a point when you (since you hold the legal authority) will have to make a decision and you want your sister at least understanding your mother's perspective, not fighting it every step of the way.

You might also talk to your mother's doctor and suggest that he/she reevaluate the cost/benefit of NSAIDs for your mom, given the apparent emotional distress this is causing. A second opinion might be in order.

Good luck.

[pnwmom]

13. Yes. Thanks for the advice. And yes, I know the situation is just going to get worse

with difficult decisions down the line. I appreciate enormously the job my sister is doing with our mother, so I don't want to tread on her toes.

I'm thinking that maybe one approach is to suggest my sister talk not just to a GI doctor, but to an arthritis doctor about the pain. Maybe that could change her mind.

[enlightenment]

23. That sounds like an excellent idea.

The docs should consult with each other, too. My mom needed pain meds for arthritis/gout/spinal stenosis - but also had GI issues (and then, in the last six months, AML). Her GP and Rheumatologist consulted at least once a month by phone.

I do understand not wanting to tread on a sibs toes - especially when they are providing the lion's share of the care-taking. It's a difficult situation.

[enough]

3. My lifeline when dealing with two elderly parents (same age as your Mom),

was the Caregivers Forum at the Alzheimer's Association website. My parents had two different types of dementia.

http://www.alzconnected.org/discussion.aspx?g=topics&f=151

There is a brief sign up before you can post on the board, but you can browse before signing up.

This is the link for the overall website, which has a wealth of information:

https://www.alzconnected.org/default.aspx



You will find information and understanding there. You can ask the question and you will get a very useful discussion of all the ins and outs of the issue from people who are actually living the reality, and from professionals who work with dementia in the elderly.

Also that site has many links to "expert" and useful resources in any area of the county.

I cannot recommend this highly enough. Nothing I have ever encountered on the Net has been more useful to me than that site.

All the best to you and your family.

[pnwmom]

6. Thank you very much. This is just the kind of thing I was hoping someone could point to!

[MannyGoldstein]

8. We have a similar situation with regard to decisions

My wife has health care decision-making authority for a relative with significant memory issues. My wife explains everything to her relative, works with her to try to come up with a collaborative answer, and will only override her relative's answer if it's a really, really bad idea (rare) rather than if it's just a different decision than my wife thinks she should make.

With regard to Aleve (i.e., naproxen): it's true that naproxen is an NSAID, and it's true that, as a class, NSAIDs in high doses raise cardiac risk. However, last time I checked, naproxen itself was not a problem - it was other NSAIDS. For example, from https://www.ncbi.nlm.nih.gov/pubmed/24697248:

"This risk seems to be related to the COX-2 inhibitory potency and has been found with most NSAIDs except naproxen."

You can review lots of papers on the subject at https://www.ncbi.nlm.nih.gov/pubmed/?term=naproxen+cardiovascular

Also note that:

- Naproxen is pretty good for relieving pain
- There's a small risk of internal bleeding (e.g., https://www.ncbi.nlm.nih.gov/pubmed/9531232), but that's rarely fatal.
- Tylenol does very little to relieve pain
- Tylenol is actually quite dangerous, IIRC it kills more people each year than any other prescription drug. You might want to look at http://www.huffingtonpost.com/news/tylenol-deaths/ and http://abcnews.go.com/Health/PainNews/Story?id=7699582&page=1, and listen to the This American Life podcast at the first link.

Given Tylenol's substantial risk, and low benefit, I'd be pretty concerned about any health care professional who recommended it.

Of course, since I'm not a doctor, you must assume that everything I said is a lie, so check it all out as you see fit.

And mostly, I wish you courage and good luck! These are challenging things to work through!

[Coventina]

9. My opinion, FWIW

My mother died of a rare form of dementia at an early age.

I am giving advice based on what I experienced in taking care of her (I was not the primary care-giver, that was my dad. I was a secondary helper).

My personal feeling is that if she wants to take the Aleve, let her.
If she is not interested in prolonging her life, it is not fair to make her live in pain.
Tylenol, IMHO, is worthless. At least, it's never done anything for me or anyone else in my family.
Of course different people react differently to different medications.
But, your mother seems to think Tylenol doesn't help.

With dementia, making the patient as comfortable as possible is the primary goal.
If comfort conflicts with long-term health, the comfort should win out.
You want her to be in a good frame of mind and happy during this last period of relative sanity you will have with her.
The memories you make now will be the ones to hold on to as she slips further away.

I hate to sound so bleak, but it is a hard journey, and I wish you and all your family comfort and peace.

[Thinkingabout]

11. There are issues with both products. NSAIDS affects the kidneys and acts as a blood

Thinner, and can result in stomach issues. Tylenol for arthritis is better controlling pain than plain Tylenol. Tylenol affects the liver. I think I would go with the advice of the physician who probably knows the medical history.

[nomorenomore08]

14. I'd say give them as much decision-making power as they can reasonably handle.

No need to treat them like small children, unless they've progressed to a stage where they need that level of care.

And I do have an almost 89-year-old grandmother suffering from early to mid-stage dementia, so this subject isn't entirely unfamiliar to me.

[etherealtruth]

16. Try the local chapter of the Alzheimer's Association

Here is the "Wiki" link (I know) ... but I don't know your location. http://en.wikipedia.org/wiki/Alzheimer%27s_Association

Additionally see if your area has active advocacy program for the elderly.

i bring these groups up because they may be able to give you (good) insight into the question you posed.

To me, the question is very complex (but is a question I am sure medical ethicists have approached)

[hedgehog]

18. That's a tough one - what you're really asking is how to tip things your mother's way

without alienating your sister. Let me know if you find an answer! I've been going through this with an out-of-town sister who is convinced that it's time for "us kids" to put our parent into a rest home. Trouble is, our parent is perfectly healthy and is not going to move!

[frazzled]

20. You should not take Aleve (naprosyn) or Advil (ibuprofen) after surgery

That is standard procedure: acetiminophen (Tylenol) is okay. If your mother's surgery was recent, that is why the doctor said this. So if she's relatively recent post-op (say within several months), in this instance, I would follow the doctor's advice. Or return to ask for another acceptable pain medication.

As for decisions: your mother sounds like she still has some of her marbles, so she should definitely have a say in her own care. That doesn't mean disobeying doctors' orders, necessarily, though.

[pnwmom]

22. Her surgery was 4 months ago, so that's not the issue.

The GI doc involved, who is a family friend, opposes long term use of NSAIDS for any reason, because it can lead to bleeding ulcers, and he doesn't allow his family members to ever take it, period.

The problem is that GI doctors and arthritis doctors disagree, with some of the latter thinking long term use of NSAIDS can be justified. My sister's only listening to a GI doctor, not an arthritis doctor. And since my sister is involved in all the day to day care, I have to tread very gently here, even though I technically have the medical P.o. A.

[hunter]

24. Jesus. I'd give my mom whatever she wants, within reason...

... and somewhat outside of reason too.

OTC meds, cannibis, opiates, nude skydiving with hot young men, whiskey, whatever.

Okay, maybe not alcohol. My mom's a berserker when she drinks. Fortunately drinking and berserkering are not her habit.

My mom's mom was a berserker whether she was drinking or not. She fought off the police and paramedics for a few infinitely long hours after the judge decided she was a danger to herself and others... biting, hitting, kicking, throwing things, breaking things... But, fortunately, she'd forgotten where she'd hidden the family guns. My mom thought she'd removed all the guns. Later, when cleaning out grandma's house my mom found the rest of the family guns with ammo, including an immaculate antique Winchester rifle, and she had to sit down. Suddenly. I've no doubt the cops would have shot my grandma if she'd remembered where her guns were. Maybe it would have been better all around. Even without the guns if my grandma had had a horse she would have ridden off into the sunset and that would have been that, the last we saw of her, her horse returning home sometime later. Grandma vanished into the eternal wilderness, dead or alive, no matter.

Sadly, grandma's death was uglier than that. We buried her in a plain wooden box, according to her instructions. The funeral home director asked, "She's Jewish?" Maybe. Wild West Jews and Catholics in Mormon territory, that's my guess. Her mom, my great grandmother, left equally odd instructions.

I have a bottle of Naproxen Sodium and time-release acetaminophen on my desk along with my other meds. Some days it's "pick your poison." Currently NSAIDS are hostile to my stomach, but the NSAID sensitivity comes and goes, well, except for the tinnitus.

When my other grandma, another strong woman of the Wild West, was dying of cancer she asked my brother for some "brownies." You know, the grandmother kind.

Easier for my brother, I think, since in grandma's delirious mind he was the speak-easy uncle. But at that point in her delirium she thought I was her dad. It was a damned hard role to play, switching instantly between the modern science fiction reading techno-geek boy Hunter and the roaring twenty's science fiction reading techno-geek dad who'd leveraged himself too far into techno-geek dreams of automobiles, airplanes, space ships, and Martian Princesses.

[Jackpine Radical]

26. I've done a lot of competency evaluations, for all sorts of purposes

from competency to stand trial in criminal cases to competency of person & estate. Each such decision has to be based on the individual circumstances (memory, cognitive status, etc.) and the consequences involved in the decision-making, so it's not possible to answer definitively absent a lot of information about the person (likely including psychological testing).

However, at first blush, considering that your mother understands and is capable of weighing the consequences of her decision, I would not attempt to interfere with her right to make this sort of choice. Does your sister have any ulterior motives for getting your mother declared incompetent?