Alzheimer's Disease, Long Term Care, and your Retirement Finances

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Gnirk
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Re: Alzheimer's Disease, Long Term Care, and your Retirement Finances

Post by Gnirk » Wed May 23, 2018 5:45 pm

celia wrote:
Tue May 22, 2018 6:33 pm
Gnirk wrote:
Sat May 19, 2018 5:50 pm
pintail07 wrote:
Sat May 19, 2018 5:24 pm
Even those with the ability to self insure, a long tail yearly claim of 100,000 in today's dollars for 10 or more years is a very tough pill to swallow.
Yes, that’s very true. I speak from experience; my mom suffered from Alzheimer’s for 12 years, 8 of those years in a private care home specializing in dementia care ( $60,000 -$65,000 per year).
I see costs like these thrown around often without them saying what the care is for. I suppose for someone who needed nursing care due to not being able to care for their own multiple medical conditions and loss of several Activities of Daily Living (ADLs) and having Alzheimer's (or not), the care could cost $100K per year. But just because someone has Alzheimer's, it does not mean nursing care is needed. In many cases, the less-expensive assisted living will work out just as well. In fact, a patient who is placed with other patients who need more care than they do, will often feel out of place. See Assisted Living: A Self-Assessment Checklist to help figure out which is more appropriate.

For those who find that Assisted Living will work, the cost will be more reasonable. I placed a relative in a small group home for $2,000 a month (10 years ago which should be a little under $3,000 now) when she had cancer and Alzheimer's. You should be able to find these homes for your area on the Assisted Living licensing area of your state's website. If you've never looked for them, you may be in for a pleasant surprise that it is not as dire as the pundits say it is. A survey by Genworth shows the average costs for assisted living for patients without Alzheimers and with it at: Assisted Living Costs (see the middle of the page). The average cost for each state does not seem to correlate with the average cost-of-living for each state. I suspect it correlates more with the supply and demand in the state.

But for those who compare their options reasonably, there are often less-expensive choices.
Celia, my mom’s care at the private care home, which are called Adult Family Homes in our state, started out at $4,000 per month...she couldn’t dress, bathe, cook, etc. As her disease progressed, the costs increased as her care needs increased. She required feeding for almost 6 years. She was in stage 7 for several years, receiving almost one on one care. She had no other health issues, other than AD. A nursing home would have been $100,0000 per year in our area. Sadly, no where in our area is there quality care available for $3,000 per month. And I researched every option before making my decision. I figured it was her money, and it was going to be spent on the best quality care for her. And we were blessed to find such amazing care.

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VictoriaF
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Re: Alzheimer's Disease, Long Term Care, and your Retirement Finances

Post by VictoriaF » Wed May 23, 2018 6:35 pm

2015 wrote:
Sat May 19, 2018 6:32 pm
Here's my long term care plan:

https://www.cnn.com/2018/05/10/health/d ... index.html

I have no intention of enduring Alzheimer's in any form or fashion, and would be gone long before LTC would be required. I don't personally consider such a minimal existence as "living". YMMV.
I want to think that it's my plan too, but there are too many variables. The trick is not to do it too late.

Victoria
WINNER of the 2015 Boglehead Contest. | Every joke has a bit of a joke. ... The rest is the truth. (Marat F)

TravelforFun
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Re: Alzheimer's Disease, Long Term Care, and your Retirement Finances

Post by TravelforFun » Wed May 23, 2018 6:50 pm

Bohemiana wrote:
Wed May 23, 2018 2:07 pm
My parents purchased 4 years of long-term care insurance and paid into it for 20 years. My dad had Lewy Body Dementia for 7 years (dementia plus Parkinsons) and lived his last 6 months in a memory care facility outside Nashville, TN and total cost was about $5k per month, which LT care paid about half. (There was a monthly limit). Dad died at 74. During dad's decline, mom developed Alzheimer's. After dad died she went down hill pretty fast and we found a great place for her, which is where see currently lives. She is 76. It's a Brookdale facility and she lives in "independent living" but we have added many extra services like taking her to meals in the dining room, coming in to give her medication 3 times per day, helping her choose clothes to wear, etc. This has kept her costs low compared to if she had to move to the assisted living section or especially a nursing home. Her monthly cost is about $3500 per month and she is using the LT care insurance.

In both cases, every time we moved them to a new place or new room, their dementia got a lot worse so we are hoping this independent living will be the last move for mom. Mom's long-term care insurance will be over in a year but she has the financial resources to pay for quite a long time. I think the ideal situation is to find a facility like where my mom is that allows a pretty low base cost and you can add services as needed as they decline but stay in place.

My husband and I are considering retiring next year at ages 57 and 58 because both my parents were relatively young when they got dementia, and my husband's dad died in is 50s with cancer. We don't have kids so worst case our money (about $2m now) runs out and we will end up on Medicaid.
Worst case is one spouse going into LTC, exhausts the couple's savings, then passes.

TravelforFun

visualguy
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Re: Alzheimer's Disease, Long Term Care, and your Retirement Finances

Post by visualguy » Wed May 23, 2018 7:39 pm

VictoriaF wrote:
Wed May 23, 2018 6:35 pm
2015 wrote:
Sat May 19, 2018 6:32 pm
Here's my long term care plan:

https://www.cnn.com/2018/05/10/health/d ... index.html

I have no intention of enduring Alzheimer's in any form or fashion, and would be gone long before LTC would be required. I don't personally consider such a minimal existence as "living". YMMV.
I want to think that it's my plan too, but there are too many variables. The trick is not to do it too late.

Victoria
That plan makes the most sense to me too in case of a number of horrible conditions, including Alzheimer's. It can definitely be tricky to do it at the right time, particularly since the rate of progress of these diseases varies from person to person, and is hard to predict. The lack of availability of this solution domestically makes it even trickier. I hope I don't need it, or at least that it will become more available by the time I need it. We provide it for pets, but deny humans.

I find it hard to bet on being able to do that, and this really complicates financial planning for retirement. If I could rely on that option, it would make things a lot simpler, and would enable earlier retirement from a financial perspective. Not being able to rely on it means having to save more and work longer, and it's hard to determine when you have "enough".

pennywise
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Re: Alzheimer's Disease, Long Term Care, and your Retirement Finances

Post by pennywise » Wed May 23, 2018 8:06 pm

2015 wrote:
Sat May 19, 2018 6:32 pm
Here's my long term care plan:

https://www.cnn.com/2018/05/10/health/d ... index.html

I have no intention of enduring Alzheimer's in any form or fashion, and would be gone long before LTC would be required. I don't personally consider such a minimal existence as "living". YMMV.
I think this is easy to say in the abstract but very doubtful you will 1) even realize you have a problem 2) know when you reach the point at which you need to say adios 3) understand enough to have the wherewithal to do yourself in even if you surmount obstacles 1) and 2).

Everyone is quick to say they will be outta here if X or Y or Z happens. In reality the life force, it is strong and it's a minority of people who commit suicide. And in the case of Alzheimers or dementia it's horribly sad to watch someone's mind evaporate while they insist they are just fine, no problem here. The essence of mental decline is that one no longer knows how to reason coherently!
Last edited by pennywise on Fri May 25, 2018 8:06 am, edited 1 time in total.

TravelforFun
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Re: Alzheimer's Disease, Long Term Care, and your Retirement Finances

Post by TravelforFun » Wed May 23, 2018 8:49 pm

pennywise wrote:
Wed May 23, 2018 8:06 pm
2015 wrote:
Sat May 19, 2018 6:32 pm
Here's my long term care plan:

https://www.cnn.com/2018/05/10/health/d ... index.html

I have no intention of enduring Alzheimer's in any form or fashion, and would be gone long before LTC would be required. I don't personally consider such a minimal existence as "living". YMMV.
I think this is easy to say in the abstract but very doubtful you will 1) know when you reach the point at which you need to say adios or 2) even realize you have a problem or 3) understand enough to have the wherewithal to do yourself in even if you surmount obstacles 1) and 2).

Everyone is quick to say they will be outta here if X or Y or Z happens. In reality the life force, it is strong and it's a minority of people who commit suicide. And in the case of Alzheimers or dementia it's horribly sad to watch someone's mind evaporate while they insist they are just fine, no problem here. The essence of mental decline is that one no longer knows how to reason coherently!
I keep hearing 'the older you get, the more you're afraid of saying adios'

TravelforFun

TN_Boy
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Re: Alzheimer's Disease, Long Term Care, and your Retirement Finances

Post by TN_Boy » Thu May 24, 2018 7:39 am

Gnirk wrote:
Wed May 23, 2018 5:45 pm
celia wrote:
Tue May 22, 2018 6:33 pm
Gnirk wrote:
Sat May 19, 2018 5:50 pm
pintail07 wrote:
Sat May 19, 2018 5:24 pm
Even those with the ability to self insure, a long tail yearly claim of 100,000 in today's dollars for 10 or more years is a very tough pill to swallow.
Yes, that’s very true. I speak from experience; my mom suffered from Alzheimer’s for 12 years, 8 of those years in a private care home specializing in dementia care ( $60,000 -$65,000 per year).
I see costs like these thrown around often without them saying what the care is for. I suppose for someone who needed nursing care due to not being able to care for their own multiple medical conditions and loss of several Activities of Daily Living (ADLs) and having Alzheimer's (or not), the care could cost $100K per year. But just because someone has Alzheimer's, it does not mean nursing care is needed. In many cases, the less-expensive assisted living will work out just as well. In fact, a patient who is placed with other patients who need more care than they do, will often feel out of place. See Assisted Living: A Self-Assessment Checklist to help figure out which is more appropriate.

For those who find that Assisted Living will work, the cost will be more reasonable. I placed a relative in a small group home for $2,000 a month (10 years ago which should be a little under $3,000 now) when she had cancer and Alzheimer's. You should be able to find these homes for your area on the Assisted Living licensing area of your state's website. If you've never looked for them, you may be in for a pleasant surprise that it is not as dire as the pundits say it is. A survey by Genworth shows the average costs for assisted living for patients without Alzheimers and with it at: Assisted Living Costs (see the middle of the page). The average cost for each state does not seem to correlate with the average cost-of-living for each state. I suspect it correlates more with the supply and demand in the state.

But for those who compare their options reasonably, there are often less-expensive choices.
Celia, my mom’s care at the private care home, which are called Adult Family Homes in our state, started out at $4,000 per month...she couldn’t dress, bathe, cook, etc. As her disease progressed, the costs increased as her care needs increased. She required feeding for almost 6 years. She was in stage 7 for several years, receiving almost one on one care. She had no other health issues, other than AD. A nursing home would have been $100,0000 per year in our area. Sadly, no where in our area is there quality care available for $3,000 per month. And I researched every option before making my decision. I figured it was her money, and it was going to be spent on the best quality care for her. And we were blessed to find such amazing care.
Sure, but that was the point of Celia's post; when numbers are tossed around, it is important to understand the level of care needed. Where I live (medium cost area), you can get a decent amount of services for 4k a month. This would be enough for assisted living, including help with mild dementia. Full-blown memory care (which includes more or less lockdown so they can't wander) will be more.

For someone needing almost 24x7 care, including help with eating, bathing, dressing -- basically everything -- it's easy to see how the numbers would skyrocket. How could they not? Fortunately, it's pretty clear that cases requiring years of this sort of very expensive care are relatively infrequent.

CULater
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Re: Alzheimer's Disease, Long Term Care, and your Retirement Finances

Post by CULater » Thu May 24, 2018 10:16 am

A competent adult can refuse medications and refuse care, but there's a question about what the reaction would be by the care facility where they live. In my mother's case, she has occasionally refused certain medications in her assisted living facility. However, if she were to refuse a medication frequently or refuse all her medications, this abrogates the physician instructions that the facility is obligated to follow. In this case, the physician would need to amend the medication instructions or the family would be contacted to help remediate the situation. If neither of these occurs, then the facility would have a legal obligation to evict the resident, since the facility is bound by ethical and legal concerns to protect the safety and welfare of residents.

I know of only one situation in which the resident has the option of refusing all medication except for palliative care and remain in the facility; that is if the person has been diagnosed as terminal within a short time (usually a few months) by a licensed physician and is receiving hospice care. At this point in time, I don't believe that a healthcare directive instructing caregivers to withhold medication and usual care could be honored by the facility for dementia or Alzheimer's per se. There's a fine line with assisting suicide that a care facility just can't cross.

Unless things change, I don't believe that a healthcare directive or medical POA that instructs others to withhold all but palliative care from a person with dementia would be honored by any healthcare facility; but perhaps I'm wrong. I'd like to discuss it with the assisted living facility where my mother resides, but I frankly don't think this is something they'd be prepared to discuss because it's simply too complex an issue. I'm virtually sure all I'd get the "party line" detailing the usual and "normal" procedures they follow.
May you have the hindsight to know where you've been, The foresight to know where you're going, And the insight to know when you've gone too far. ~ Irish Blessing

2015
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Re: Alzheimer's Disease, Long Term Care, and your Retirement Finances

Post by 2015 » Thu May 24, 2018 12:22 pm

pennywise wrote:
Wed May 23, 2018 8:06 pm
2015 wrote:
Sat May 19, 2018 6:32 pm
Here's my long term care plan:

https://www.cnn.com/2018/05/10/health/d ... index.html

I have no intention of enduring Alzheimer's in any form or fashion, and would be gone long before LTC would be required. I don't personally consider such a minimal existence as "living". YMMV.
I think this is easy to say in the abstract but very doubtful you will 1) know when you reach the point at which you need to say adios or 2) even realize you have a problem or 3) understand enough to have the wherewithal to do yourself in even if you surmount obstacles 1) and 2).

Everyone is quick to say they will be outta here if X or Y or Z happens. In reality the life force, it is strong and it's a minority of people who commit suicide. And in the case of Alzheimers or dementia it's horribly sad to watch someone's mind evaporate while they insist they are just fine, no problem here. The essence of mental decline is that one no longer knows how to reason coherently!
I've posted previously the unique advantage I have is while others theorize about all this stuff I've actually lived it. The so-called life force, which to me is more like the walking dead in situations involving physical or cognitive decline, is of no consequence as I have experience defeating it.

As in all personal matters such as these many might have different views on what constitutes "living" to which they are more than welcome.

Regarding the hysteria around dementia as (yet another) reason to "work longer" and "save more", maybe all of these "reasons" are not as dire as the financial media continues to have us believe:

https://khn.org/news/now-more-of-us-can ... ia-bullet/

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celia
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Re: Alzheimer's Disease, Long Term Care, and your Retirement Finances

Post by celia » Thu May 24, 2018 1:59 pm

I find a statement in this referenced article as questionable:
https://khn.org/news/now-more-of-us-can ... ia-bullet/
Langa’s research shows that the prevalence of dementia has fallen in the U.S. — a trend observed in developed countries across the globe. A new study from researchers at the Rand Corp. and the National Bureau of Economic Research finds that 10.5 percent of U.S. adults age 65 and older had dementia in 2012, compared with 12 percent in 2000. . . .

More years of education, which is associated with better physical and brain health, appears to be contributing to this phenomenon.
Although there can be correlation between more years of education and better physical and brain health, I don't think it implies a cause and effect.

If the study is referring to individuals, rather than more education contributing to a lower chance of having dementia, I think it is the other way around. Those who are least likely to have dementia in old age may be more likely to get more education when they are younger. Maybe their brains are more active (when younger AND older) or their brains are wired differently than the general population.

If society, as a whole, is becoming more educated, then that might account for the drop in dementia percentage-wise. But it might not be just a correlation between 25-year-olds' educational level and the cognitive health of 65- or 75-year-olds 40 years later. Some people continue to learn challenging things between those years. And the education doesn't have to be formal education (with diploma). It can be self-taught, webinars, travel, or other.

Jackson12
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Re: Alzheimer's Disease, Long Term Care, and your Retirement Finances

Post by Jackson12 » Thu May 24, 2018 3:59 pm

CULater wrote:
Sat May 19, 2018 12:47 pm
There have been some discussions about long term care expenses on the forum, and I've found these to be very valuable. I just attended a session presented at the Banner Alzheimer's Research Institute in Phoenix that shed some additional light and concerns that I thought I'd like to share. The Banner institute is one of the leading centers for research on Alzheimer's Disease in the world, and is conducting research from a preventative aspect. They are particularly interested in genetic factors related to the development of Alzheimer's Disease.

Here are some interesting take-aways from the session, related to the cost of medical care in retirement and retirement planning:

1) By the time a person is 65, virtually everyone is showing the biological and possibly the behavior precursors of Alzheimer's Disease.
2) Age is the primary risk factor for Alzheimer's Disease.
3) The risk of Alzheimer's Disease doubles every 5 years after the age of 65.
4) One out of two persons living to age 85 will develop Alzheimer's Disease.
5) If future treatments could delay the onset of the disease by just 5 years, the population in long term care facilities would be reduced by 50%; if treatments could delay onset by 10 years, the long term care population would be reduced by 75%.

In other words, the Institute is saying that there's a really good chance you'll end up with Alzheimer's if you live long enough. Secondly, if you end up in long term care at some point in your life, you're likely to be there with or because of Alzheimer's Disease. There is a very strong correlation between long term care and having Alzheimer's Disease.

In my view, retirement planning needs to take these facts into consideration. It's not longevity risk that we need to fear as much as it is the Alzheimer's Disease that is likely to result from longevity. Planning for longevity risk and long term care risk should heavily weight planning for Alzheimer's risk. I'm not exactly sure what the answers are but I think it provides an important perspective that I see missing in most discussions about retirement planning and I think it's important to pull heads out of the sand.
[/b]

While I plan for the likelihood of Alzheimer’s , I am also aware of many people, famous or not, whose minds are still extremely sharp . Bogle had a heart transplant at age 66 http://www.philly.com/philly/business/p ... plant.html

And while I don’t know his exact age, I believe Taylor Larrimore is at least as old as Bogle

I use family history as my strongest predictor of Alzheimer’s . It doesn’t run in my family. We’re not sure about my spouses family ( early death seems more if a risk) but we’re planning financially for Alzheimer’s .

Our plan:
1. Having enough funds on hand, mixed with some LTC insurance, to cover 3 years of nursing home care- or at home care if staying at home is possible.
2. We’re planning on selling our home, downsizing, and putting any extra funds into savings and investments slated for long-term care. We don’t need the profit to add to our basic retirement savings. So it’ll go to long-term care...or our kids if we don’t use it. .


Two factors affected my parents’ cognitive abilities :
1. Several Heart surgeries ( father). Having bypass surgery, especially multiple times) does carry risks and may result in cognitive damage. Watching what he endured is all the motivation I need to eat well and exercise.

2. Living beyond age 85. My mother and an an aunt lived to their late 90s, one without cognitive issues, with the exception of my mother...and that was primarily the challenge of balancing her monthly budget. So we took charge of that, at her request, and funds were deposited only monthly so she couldn’t run through her assets.

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VictoriaF
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Re: Alzheimer's Disease, Long Term Care, and your Retirement Finances

Post by VictoriaF » Thu May 24, 2018 4:48 pm

celia wrote:
Thu May 24, 2018 1:59 pm
Although there can be correlation between more years of education and better physical and brain health, I don't think it implies a cause and effect.
It's a good point, Celia. One of my favorite authors, Dame Iris Murdoch, a brilliant author and an Oxford professor, had Alzheimer's.

Victoria
WINNER of the 2015 Boglehead Contest. | Every joke has a bit of a joke. ... The rest is the truth. (Marat F)

ncbill
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Re: Alzheimer's Disease, Long Term Care, and your Retirement Finances

Post by ncbill » Thu May 24, 2018 5:06 pm

CULater wrote:
Thu May 24, 2018 10:16 am
...At this point in time, I don't believe that a healthcare directive instructing caregivers to withhold medication and usual care could be honored by the facility for dementia or Alzheimer's per se. There's a fine line with assisting suicide that a care facility just can't cross.

Unless things change, I don't believe that a healthcare directive or medical POA that instructs others to withhold all but palliative care from a person with dementia would be honored by any healthcare facility; but perhaps I'm wrong...
Sorry, my mistake, dementia is not specifically described as a terminal disease within the language of the model health care POA for my state.

Here are the 'springing' conditions to activate the POA:

"I have an incurable or irreversible condition that will result in my death within a relatively short period of time.
I become unconscious and my health care providers determine that, to a high degree of medical certainty, I will never regain my consciousness.
I suffer from advanced dementia or any other condition which results in the substantial loss of my cognitive ability and my
health care providers determine that, to a high degree of medical certainty, this loss is not reversible."

But the default language of the document grants broad powers to the agent appointed:

"Giving consent for, withdrawing consent for, or withholding consent for, X-ray, anesthesia, medication, surgery, and all other diagnostic and treatment procedures ordered by or under the authorization of a licensed physician, dentist, podiatrist, or other health care provider. This authorization specifically includes the power to consent to measures for relief of pain. Authorizing the withholding or withdrawal of life-prolonging measures."

So whether or not the facility agrees with the decisions of the appointed health care agent...they (legally) still must comply with refusals, same as if the patient themselves were telling them "I don't want this medication or that treatment."

Now, it's very common for specific treatments not wanted to be mentioned, e.g. feeding tube, IV antibiotics.
So in my case, adding "no antibiotics" shouldn't present a problem as regards the enforcement of the directive.

Again, all this is to minimize the chances of a "long-tail" stay (10+ years) in skilled nursing care, which would likely bankrupt my estate.

CULater
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Re: Alzheimer's Disease, Long Term Care, and your Retirement Finances

Post by CULater » Thu May 24, 2018 6:15 pm

So whether or not the facility agrees with the decisions of the appointed health care agent...they (legally) still must comply with refusals, same as if the patient themselves were telling them "I don't want this medication or that treatment."
I see no reason to dispute that; however, as I previously stated, whether it comes from the patient or the patient's surrogate I don't believe facilities will simply comply with refusal of care for an indefinite time, because they have a duty to protect well-being and safety. A resident of a facility may also refuse to eat, refuse to comply with rules intended to protect welfare and safety, etc. Ultimately, the facility has to weigh it's ethical and legal responsibility to protect well-being and safety against the rights of the individual, and they are under no obligation to allow the individual to remain in the facility.

I am skeptical that a facility would simply comply with the instructions of either the individual or a surrogate to withhold treatment without consulting with the licensed medical practitioner responsible for that individual's medical treatment and care. It might be tough to get a licensed practitioner to simply issue "do not medicate, do not treat" orders in the case of dementia per se because of ethical and legal issues involved where it is very difficult to make medically-based predictions about how long a patient might live.

This is a very slippery slope verging on "assisted suicide" and, unfortunately, I don't think we've worked it out yet in the case of dementia/Alzheimer's. I hope I'm wrong -- I want to be wrong because I think you have a very good idea here to include this in your healthcare directive and POA. But I would like to be more sure than I am at present that my wishes are actually going to be honored uncritically.
May you have the hindsight to know where you've been, The foresight to know where you're going, And the insight to know when you've gone too far. ~ Irish Blessing

ResearchMed
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Re: Alzheimer's Disease, Long Term Care, and your Retirement Finances

Post by ResearchMed » Thu May 24, 2018 6:22 pm

CULater wrote:
Thu May 24, 2018 6:15 pm
So whether or not the facility agrees with the decisions of the appointed health care agent...they (legally) still must comply with refusals, same as if the patient themselves were telling them "I don't want this medication or that treatment."
I see no reason to dispute that; however, as I previously stated, whether it comes from the patient or the patient's surrogate I don't believe facilities will simply comply with refusal of care for an indefinite time, because they have a duty to protect well-being and safety. A resident of a facility may also refuse to eat, refuse to comply with rules intended to protect welfare and safety, etc. Ultimately, the facility has to weigh it's ethical and legal responsibility to protect well-being and safety against the rights of the individual, and they are under no obligation to allow the individual to remain in the facility.

I am skeptical that a facility would simply comply with the instructions of either the individual or a surrogate to withhold treatment without consulting with the licensed medical practitioner responsible for that individual's medical treatment and care. It might be tough to get a licensed practitioner to simply issue "do not medicate, do not treat" orders in the case of dementia per se because of ethical and legal issues involved where it is very difficult to make medically-based predictions about how long a patient might live.

This is a very slippery slope verging on "assisted suicide" and, unfortunately, I don't think we've worked it out yet in the case of dementia/Alzheimer's. I hope I'm wrong -- I want to be wrong because I think you have a very good idea here to include this in your healthcare directive and POA. But I would like to be more sure than I am at present that my wishes are actually going to be honored uncritically.
I think it is easier IF the patient has more of a physical problem (e.g., cancer, although that certainly isn't to be desired!) where pain in part of the condition. A directive to emphasize pain control (rather than concern for "risks") can ... have multiple goals and outcomes.

RM
This signature is a placebo. You are in the control group.

montanagirl
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Re: Alzheimer's Disease, Long Term Care, and your Retirement Finances

Post by montanagirl » Thu May 24, 2018 6:25 pm

TravelforFun wrote:
Wed May 23, 2018 8:49 pm
pennywise wrote:
Wed May 23, 2018 8:06 pm
2015 wrote:
Sat May 19, 2018 6:32 pm
Here's my long term care plan:

https://www.cnn.com/2018/05/10/health/d ... index.html

I have no intention of enduring Alzheimer's in any form or fashion, and would be gone long before LTC would be required. I don't personally consider such a minimal existence as "living". YMMV.
I think this is easy to say in the abstract but very doubtful you will 1) know when you reach the point at which you need to say adios or 2) even realize you have a problem or 3) understand enough to have the wherewithal to do yourself in even if you surmount obstacles 1) and 2).

Everyone is quick to say they will be outta here if X or Y or Z happens. In reality the life force, it is strong and it's a minority of people who commit suicide. And in the case of Alzheimers or dementia it's horribly sad to watch someone's mind evaporate while they insist they are just fine, no problem here. The essence of mental decline is that one no longer knows how to reason coherently!
I keep hearing 'the older you get, the more you're afraid of saying adios'

TravelforFun

Yes, easy to be "brave" when the end still seems far off.

CULater
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Re: Alzheimer's Disease, Long Term Care, and your Retirement Finances

Post by CULater » Thu May 24, 2018 7:18 pm

Here's one individual's take on an Advance Directive regarding Alzheimer's / Dementia to provide an example for changing the paradigm to fit one's own criteria and circumstances. Currently, my Advance Directive and healthcare POA do not address this, and I intend to have them revised to do so.
I have witnessed the ravages that Alzheimer’s disease and similar progressive dementias produce. I wish to be allowed to die upon reaching a degree of permanent mental dysfunction that I deem to be intolerably demeaning. For me, this means mental deterioration to a point when I can no longer read and understand written material such as a newspaper or financial records such as a checkbook.

This wish to hasten my post-competence demise is not based on prospective suffering or distress, but rather on my personal vision of intolerable indignity and degradation associated with cognitive dysfunction. For me, it is critical to shape the post-mortem recollections of my loved ones and to preserve the lifetime image as a vital, critically thinking individual that I have strived to cultivate. In addition, it is important to me to avoid being an emotional, physical, or financial burden on my family and friends, even if they would willingly assume such burdens.

I fully understand that my determination to avoid prolonged, progressive debilitation could prompt my demise even though I might appear content in my debilitated condition. I am exercising my prerogatives of self-determination and bodily integrity to shape my lifetime narrative, including my dying process, in accord with my strong aversions to mental dysfunction and to dependence on others.

My determination not to prolong my life at the described point of debilitation includes rejection of any and all life-sustaining means. This includes simplistic medical interventions such as antibiotics, blood transfusions, and antiarrythmics, as well as more complex interventions like CPR, mechanical ventilation, dialysis, and artificial nutrition and hydration. Indeed, if my dementia or any other affliction has produced inability or unwillingness to feed myself – for example, because of swallowing difficulties, or other eating disorders, or just indifference to eating — I instruct that my caregivers refrain from hand feeding unless I appear receptive to eating and drinking (show signs of enjoyment or positive anticipation). If I am indifferent or resistant to hand feeding, I do not want to be cajoled, harassed, or in any way impelled to eat or drink.

The only limitation on my advance rejection of life-sustaining medical intervention is adherence to humane treatment. That is, I have no desire to subject my future incompetent persona to a torturous or agonizing dying process. I presume that palliative steps — including medication for pain, anxiety, or agitation — will be taken to ease my dying process.

The question may arise as to whether I have had a change of mind and revoked my advance directive. My wish is that no revocation be found unless I do so while still capable of a considered choice, including appreciation of all the major elements involved. I urge my decision-making agents to avoid the temptation of manipulating my future, incompetent persona to contradict or alter my advance instructions. And I direct that my original instructions be honored absent an aware, considered change of mind (as opposed to uncomprehending expressions by my demented persona).
http://blogs.harvard.edu/billofhealth/2 ... irectives/
May you have the hindsight to know where you've been, The foresight to know where you're going, And the insight to know when you've gone too far. ~ Irish Blessing

Gnirk
Posts: 776
Joined: Sun Sep 09, 2012 3:11 am
Location: Western Washington

Re: Alzheimer's Disease, Long Term Care, and your Retirement Finances

Post by Gnirk » Thu May 24, 2018 8:11 pm

CULater wrote:
Thu May 24, 2018 7:18 pm
Here's one individual's take on an Advance Directive regarding Alzheimer's / Dementia to provide an example for changing the paradigm to fit one's own criteria and circumstances. Currently, my Advance Directive and healthcare POA do not address this, and I intend to have them revised to do so.
I have witnessed the ravages that Alzheimer’s disease and similar progressive dementias produce. I wish to be allowed to die upon reaching a degree of permanent mental dysfunction that I deem to be intolerably demeaning. For me, this means mental deterioration to a point when I can no longer read and understand written material such as a newspaper or financial records such as a checkbook.

This wish to hasten my post-competence demise is not based on prospective suffering or distress, but rather on my personal vision of intolerable indignity and degradation associated with cognitive dysfunction. For me, it is critical to shape the post-mortem recollections of my loved ones and to preserve the lifetime image as a vital, critically thinking individual that I have strived to cultivate. In addition, it is important to me to avoid being an emotional, physical, or financial burden on my family and friends, even if they would willingly assume such burdens.

I fully understand that my determination to avoid prolonged, progressive debilitation could prompt my demise even though I might appear content in my debilitated condition. I am exercising my prerogatives of self-determination and bodily integrity to shape my lifetime narrative, including my dying process, in accord with my strong aversions to mental dysfunction and to dependence on others.

My determination not to prolong my life at the described point of debilitation includes rejection of any and all life-sustaining means. This includes simplistic medical interventions such as antibiotics, blood transfusions, and antiarrythmics, as well as more complex interventions like CPR, mechanical ventilation, dialysis, and artificial nutrition and hydration. Indeed, if my dementia or any other affliction has produced inability or unwillingness to feed myself – for example, because of swallowing difficulties, or other eating disorders, or just indifference to eating — I instruct that my caregivers refrain from hand feeding unless I appear receptive to eating and drinking (show signs of enjoyment or positive anticipation). If I am indifferent or resistant to hand feeding, I do not want to be cajoled, harassed, or in any way impelled to eat or drink.

The only limitation on my advance rejection of life-sustaining medical intervention is adherence to humane treatment. That is, I have no desire to subject my future incompetent persona to a torturous or agonizing dying process. I presume that palliative steps — including medication for pain, anxiety, or agitation — will be taken to ease my dying process.

The question may arise as to whether I have had a change of mind and revoked my advance directive. My wish is that no revocation be found unless I do so while still capable of a considered choice, including appreciation of all the major elements involved. I urge my decision-making agents to avoid the temptation of manipulating my future, incompetent persona to contradict or alter my advance instructions. And I direct that my original instructions be honored absent an aware, considered change of mind (as opposed to uncomprehending expressions by my demented persona).
http://blogs.harvard.edu/billofhealth/2 ... irectives/
I think this is well thought-out, and hope that it is honored by all involved. My mom often told me, with sincerity, that if she ever got Alzheimer's to the point when she couldn't care for herself, she would just stop eating. Sadly, she did get Alzheimer's and of course, when she got to that point, she was already past the point of making or carrying out that decision. After living through her Alzheimer's, managing her care, watching her and being with her as she continued to deteriorate, I know for a fact I do not want that for myself or have my loved ones go through it with me. I have set aside enough to self-insure for my care for a long as necessary, but should I follow in my mom's footsteps, I hope that by withholding other medications and procedures, I will pass due to some other health issue.

pennywise
Posts: 439
Joined: Sat May 31, 2014 6:22 am

Re: Alzheimer's Disease, Long Term Care, and your Retirement Finances

Post by pennywise » Fri May 25, 2018 8:10 am

2015 wrote:
Thu May 24, 2018 12:22 pm

I've posted previously the unique advantage I have is while others theorize about all this stuff I've actually lived it. The so-called life force, which to me is more like the walking dead in situations involving physical or cognitive decline, is of no consequence as I have experience defeating it.
Respectfully, unless you are posting from The Great Beyond, this is not actually possible, ie reporting from individual personal experience regarding the decision to terminate one's life due to mental incapacity.

If you are still posting to online forums, you haven't :D . Unless you have defeated the life force of other people, in which case I'd strongly advise you say no more about THAT on an online forum :?:

bikechuck
Posts: 274
Joined: Sun Aug 16, 2015 9:22 pm

Re: Alzheimer's Disease, Long Term Care, and your Retirement Finances

Post by bikechuck » Fri May 25, 2018 8:37 am

2015 wrote:
Sat May 19, 2018 6:32 pm
Here's my long term care plan:

https://www.cnn.com/2018/05/10/health/d ... index.html

I have no intention of enduring Alzheimer's in any form or fashion, and would be gone long before LTC would be required. I don't personally consider such a minimal existence as "living". YMMV.
I feel the same way but this could be difficult to manage. At what point do you "take action". I have a spouse, daughter's and grandchildren all of who will be impacted by my actions. Act too soon and you give up a lot while negatively impacting loved ones. Act too late and you might not have the mental capacity to implement your plan.

This is a very difficult thing to navigate.

10YearPlan
Posts: 240
Joined: Tue Dec 22, 2015 2:58 pm

Re: Alzheimer's Disease, Long Term Care, and your Retirement Finances

Post by 10YearPlan » Fri May 25, 2018 9:56 am

I am, unfortunately, very familiar with this topic. Both of my parents got sick, more or less simultaneously. Both ultimately required full time care: one parent went to an assisted living facility specifically for Dementia and the other was cared for by a FT caregiver at home in the final months. Both had hospice care, one for years and the other for approximately 6 months.

The parent with dementia had the early-onset variety, so unfortunately when it struck, we were unprepared (not that you can ever really be prepared). We did have advance directives but they were not specific enough, I guess, to cover the situations I found myself in A LOT. As an example, people with Dementia can fall quite often. If you are in assisted living, this usually results in an ambulance ride, ER visit and potentially hospitalization. Typically, these falls are caused by something medical, and in many cases that cause is a UTI. UTIs are of course, not necessarily life-threatening. But untreated, they can lead to pain, and eventually but only possibly, death. So even while on hospice, I was always sort of strong-armed into providing antibiotics each and every time. In fact, whenever I questioned it, doctors, nurses, hospice case workers, all looked at me like I had just grown an extra head. So, antibiotics were administered and parent got temporarily "better" for a while. The last UTI I refused antibiotics and it was kind of a battle. They were setting up the IV antibiotics as I was arriving at the hospital and I had to stop them. Even in my parent's extremely debilitated state, this was not looked at like a rational decision. I felt so alone.

There was never a moment-with either parent-when it was as simple as not providing CPR. That would have been an easy choice and likely would not have been met with resistance. And even with hospice on board (two entirely different hospices btw) the end of life was prolonged and painful and gut-wrenching for all. Morphine was hard to come by until things got pretty bad and death was imminent. In my opinion, weeks too late for both.

I don't know what I will do, but I hope for my kids' sake that this is not their experience. Financially, we had no long term care insurance and it really depleted my parents' assets. But thankfully they had those assets to deplete. I read once that the average care of a nursing home stay is 3 years. So that is kind of what I plan around. Obviously it could be much longer, shorter, or hopefully not at all.

CULater
Posts: 1040
Joined: Sun Nov 13, 2016 10:59 am

Re: Alzheimer's Disease, Long Term Care, and your Retirement Finances

Post by CULater » Fri May 25, 2018 11:37 am

10YearPlan wrote:
Fri May 25, 2018 9:56 am
I am, unfortunately, very familiar with this topic. Both of my parents got sick, more or less simultaneously. Both ultimately required full time care: one parent went to an assisted living facility specifically for Dementia and the other was cared for by a FT caregiver at home in the final months. Both had hospice care, one for years and the other for approximately 6 months.

The parent with dementia had the early-onset variety, so unfortunately when it struck, we were unprepared (not that you can ever really be prepared). We did have advance directives but they were not specific enough, I guess, to cover the situations I found myself in A LOT. As an example, people with Dementia can fall quite often. If you are in assisted living, this usually results in an ambulance ride, ER visit and potentially hospitalization. Typically, these falls are caused by something medical, and in many cases that cause is a UTI. UTIs are of course, not necessarily life-threatening. But untreated, they can lead to pain, and eventually but only possibly, death. So even while on hospice, I was always sort of strong-armed into providing antibiotics each and every time. In fact, whenever I questioned it, doctors, nurses, hospice case workers, all looked at me like I had just grown an extra head. So, antibiotics were administered and parent got temporarily "better" for a while. The last UTI I refused antibiotics and it was kind of a battle. They were setting up the IV antibiotics as I was arriving at the hospital and I had to stop them. Even in my parent's extremely debilitated state, this was not looked at like a rational decision. I felt so alone.

There was never a moment-with either parent-when it was as simple as not providing CPR. That would have been an easy choice and likely would not have been met with resistance. And even with hospice on board (two entirely different hospices btw) the end of life was prolonged and painful and gut-wrenching for all. Morphine was hard to come by until things got pretty bad and death was imminent. In my opinion, weeks too late for both.

I don't know what I will do, but I hope for my kids' sake that this is not their experience. Financially, we had no long term care insurance and it really depleted my parents' assets. But thankfully they had those assets to deplete. I read once that the average care of a nursing home stay is 3 years. So that is kind of what I plan around. Obviously it could be much longer, shorter, or hopefully not at all.
Thank you for posting your experience, dreadful as it is to hear. This exactly describes the terrible complexity and the difficulty of withholding care from a person with advanced dementia or Alzheimer's -- even if they had prepared an advance directive and healthcare POA to enable that. The care system is not on your side, and you are in a horrible struggle with your own conscience about what to do. You are so correct to describe the fact that there are many, many common and non-terminal incidents such as falls, UTIs, and the like that are responsively treated and the person has a very good chance of surviving if they are treated. This has happened with my mother over the years also, and we responded by taking her to the hospital ER for treatment and she has bounced back from every one of them, a couple of them requiring that she be placed in rehab treatment in nursing homes for a few weeks. She has dementia and she wanted to be treated for all these episodes. What would you do, even if your loved one had prepared an advance directive and healthcare POA conferring you the authority to withhold care after a fall, the flu, a UTI, an infection, etc.?
May you have the hindsight to know where you've been, The foresight to know where you're going, And the insight to know when you've gone too far. ~ Irish Blessing

delamer
Posts: 4819
Joined: Tue Feb 08, 2011 6:13 pm

Re: Alzheimer's Disease, Long Term Care, and your Retirement Finances

Post by delamer » Fri May 25, 2018 1:38 pm

CULater wrote:
Fri May 25, 2018 11:37 am
10YearPlan wrote:
Fri May 25, 2018 9:56 am
I am, unfortunately, very familiar with this topic. Both of my parents got sick, more or less simultaneously. Both ultimately required full time care: one parent went to an assisted living facility specifically for Dementia and the other was cared for by a FT caregiver at home in the final months. Both had hospice care, one for years and the other for approximately 6 months.

The parent with dementia had the early-onset variety, so unfortunately when it struck, we were unprepared (not that you can ever really be prepared). We did have advance directives but they were not specific enough, I guess, to cover the situations I found myself in A LOT. As an example, people with Dementia can fall quite often. If you are in assisted living, this usually results in an ambulance ride, ER visit and potentially hospitalization. Typically, these falls are caused by something medical, and in many cases that cause is a UTI. UTIs are of course, not necessarily life-threatening. But untreated, they can lead to pain, and eventually but only possibly, death. So even while on hospice, I was always sort of strong-armed into providing antibiotics each and every time. In fact, whenever I questioned it, doctors, nurses, hospice case workers, all looked at me like I had just grown an extra head. So, antibiotics were administered and parent got temporarily "better" for a while. The last UTI I refused antibiotics and it was kind of a battle. They were setting up the IV antibiotics as I was arriving at the hospital and I had to stop them. Even in my parent's extremely debilitated state, this was not looked at like a rational decision. I felt so alone.

There was never a moment-with either parent-when it was as simple as not providing CPR. That would have been an easy choice and likely would not have been met with resistance. And even with hospice on board (two entirely different hospices btw) the end of life was prolonged and painful and gut-wrenching for all. Morphine was hard to come by until things got pretty bad and death was imminent. In my opinion, weeks too late for both.

I don't know what I will do, but I hope for my kids' sake that this is not their experience. Financially, we had no long term care insurance and it really depleted my parents' assets. But thankfully they had those assets to deplete. I read once that the average care of a nursing home stay is 3 years. So that is kind of what I plan around. Obviously it could be much longer, shorter, or hopefully not at all.
Thank you for posting your experience, dreadful as it is to hear. This exactly describes the terrible complexity and the difficulty of withholding care from a person with advanced dementia or Alzheimer's -- even if they had prepared an advance directive and healthcare POA to enable that. The care system is not on your side, and you are in a horrible struggle with your own conscience about what to do. You are so correct to describe the fact that there are many, many common and non-terminal incidents such as falls, UTIs, and the like that are responsively treated and the person has a very good chance of surviving if they are treated. This has happened with my mother over the years also, and we responded by taking her to the hospital ER for treatment and she has bounced back from every one of them, a couple of them requiring that she be placed in rehab treatment in nursing homes for a few weeks. She has dementia and she wanted to be treated for all these episodes. What would you do, even if your loved one had prepared an advance directive and healthcare POA conferring you the authority to withhold care after a fall, the flu, a UTI, an infection, etc.?

If your mother was able to communicate her preference to get treatment to you and her caregivers, then would the POA and directive be relevant?

When I was making decisions about my mother’s care, she was no longer able to make her wishes known.

NHRATA01
Posts: 464
Joined: Sat Oct 22, 2011 1:57 pm
Location: New York City area

Re: Alzheimer's Disease, Long Term Care, and your Retirement Finances

Post by NHRATA01 » Fri May 25, 2018 1:40 pm

montanagirl wrote:
Thu May 24, 2018 6:25 pm
TravelforFun wrote:
Wed May 23, 2018 8:49 pm
pennywise wrote:
Wed May 23, 2018 8:06 pm
2015 wrote:
Sat May 19, 2018 6:32 pm
Here's my long term care plan:

https://www.cnn.com/2018/05/10/health/d ... index.html

I have no intention of enduring Alzheimer's in any form or fashion, and would be gone long before LTC would be required. I don't personally consider such a minimal existence as "living". YMMV.
I think this is easy to say in the abstract but very doubtful you will 1) know when you reach the point at which you need to say adios or 2) even realize you have a problem or 3) understand enough to have the wherewithal to do yourself in even if you surmount obstacles 1) and 2).

Everyone is quick to say they will be outta here if X or Y or Z happens. In reality the life force, it is strong and it's a minority of people who commit suicide. And in the case of Alzheimers or dementia it's horribly sad to watch someone's mind evaporate while they insist they are just fine, no problem here. The essence of mental decline is that one no longer knows how to reason coherently!
I keep hearing 'the older you get, the more you're afraid of saying adios'

TravelforFun

Yes, easy to be "brave" when the end still seems far off.
That is very true. At 38 it is hard to know what my mindset and feeling will be when I am at that point. I know I can say right now I would not want to live lacking most of my cognitive ability, if not physical.

It is 2 years to the day actually, since my father passed at 70. The last 5 months were bouncing between nursing homes, and his 60 day (or 90?) medicare coverage was about to run out and he would be on the hook for $10.4k per month to private pay. Between the less than ideal care, overall environment, and extreme financial burden I have no desire to subject myself or loved ones to handling putting me in a nursing home. OTOH his mother, my grandmother is about to turn 96 and was living alone, with part time help until very recently when she could no longer stave off dialysis - and is now fortunate to be able to live with my retired aunt.

My only wish though is that we can at least allow the option for choosing to end one's life when they are near the end of life. Short of a massive paradigm shift in how we chose to structure and fund end of life care at facilities, I don't ever see a rosy picture for nursing home life. So I am hopeful that over the next 40 years or so it becomes easier to chose to end one's life here in the US as the 104 year old doctor did recently.

ResearchMed
Posts: 6432
Joined: Fri Dec 26, 2008 11:25 pm

Re: Alzheimer's Disease, Long Term Care, and your Retirement Finances

Post by ResearchMed » Fri May 25, 2018 2:00 pm

delamer wrote:
Fri May 25, 2018 1:38 pm
CULater wrote:
Fri May 25, 2018 11:37 am
10YearPlan wrote:
Fri May 25, 2018 9:56 am
I am, unfortunately, very familiar with this topic. Both of my parents got sick, more or less simultaneously. Both ultimately required full time care: one parent went to an assisted living facility specifically for Dementia and the other was cared for by a FT caregiver at home in the final months. Both had hospice care, one for years and the other for approximately 6 months.

The parent with dementia had the early-onset variety, so unfortunately when it struck, we were unprepared (not that you can ever really be prepared). We did have advance directives but they were not specific enough, I guess, to cover the situations I found myself in A LOT. As an example, people with Dementia can fall quite often. If you are in assisted living, this usually results in an ambulance ride, ER visit and potentially hospitalization. Typically, these falls are caused by something medical, and in many cases that cause is a UTI. UTIs are of course, not necessarily life-threatening. But untreated, they can lead to pain, and eventually but only possibly, death. So even while on hospice, I was always sort of strong-armed into providing antibiotics each and every time. In fact, whenever I questioned it, doctors, nurses, hospice case workers, all looked at me like I had just grown an extra head. So, antibiotics were administered and parent got temporarily "better" for a while. The last UTI I refused antibiotics and it was kind of a battle. They were setting up the IV antibiotics as I was arriving at the hospital and I had to stop them. Even in my parent's extremely debilitated state, this was not looked at like a rational decision. I felt so alone.

There was never a moment-with either parent-when it was as simple as not providing CPR. That would have been an easy choice and likely would not have been met with resistance. And even with hospice on board (two entirely different hospices btw) the end of life was prolonged and painful and gut-wrenching for all. Morphine was hard to come by until things got pretty bad and death was imminent. In my opinion, weeks too late for both.

I don't know what I will do, but I hope for my kids' sake that this is not their experience. Financially, we had no long term care insurance and it really depleted my parents' assets. But thankfully they had those assets to deplete. I read once that the average care of a nursing home stay is 3 years. So that is kind of what I plan around. Obviously it could be much longer, shorter, or hopefully not at all.
Thank you for posting your experience, dreadful as it is to hear. This exactly describes the terrible complexity and the difficulty of withholding care from a person with advanced dementia or Alzheimer's -- even if they had prepared an advance directive and healthcare POA to enable that. The care system is not on your side, and you are in a horrible struggle with your own conscience about what to do. You are so correct to describe the fact that there are many, many common and non-terminal incidents such as falls, UTIs, and the like that are responsively treated and the person has a very good chance of surviving if they are treated. This has happened with my mother over the years also, and we responded by taking her to the hospital ER for treatment and she has bounced back from every one of them, a couple of them requiring that she be placed in rehab treatment in nursing homes for a few weeks. She has dementia and she wanted to be treated for all these episodes. What would you do, even if your loved one had prepared an advance directive and healthcare POA conferring you the authority to withhold care after a fall, the flu, a UTI, an infection, etc.?

If your mother was able to communicate her preference to get treatment to you and her caregivers, then would the POA and directive be relevant?

When I was making decisions about my mother’s care, she was no longer able to make her wishes known.
I can also envision a situation where the patient with dementia (but still verbal, if not necessarily coherent) sometimes makes statements about wanting something care related, and other times refuses it. Even if the advanced directive is clear... that's a hard situation. Worse, if one had had just this type of conversation in advance, and thus knew the "lucid" preference... how would the care facility deal with withholding certain types of treatment, or managing pain aggressively as directed, etc.?

This has to be among the worst types of situations/decisions with respect to loved ones, and in some cases, when it's a spouse, it obviously is going to be the way the marriage/relationship ends.
Not a pleasant thought in any way... if one starts thinking through the possible "details", and as is said, the devil is in the details.
It certainly is, in this type of situation.

Specific advanced directives *and* advanced explicit conversations with medical professionals could probably help with this?
Has anyone dealt with this particular problem?

RM
This signature is a placebo. You are in the control group.

User avatar
JPH
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Re: Alzheimer's Disease, Long Term Care, and your Retirement Finances

Post by JPH » Fri May 25, 2018 2:12 pm

I saved and invested as much as I could, and I'm trying to make it last as long as possible. That's about all I can do at this point.
While the moments do summersaults into eternity | Cling to their coattails and beg them to stay - Townes Van Zandt

delamer
Posts: 4819
Joined: Tue Feb 08, 2011 6:13 pm

Re: Alzheimer's Disease, Long Term Care, and your Retirement Finances

Post by delamer » Fri May 25, 2018 2:19 pm

ResearchMed wrote:
Fri May 25, 2018 2:00 pm
delamer wrote:
Fri May 25, 2018 1:38 pm
CULater wrote:
Fri May 25, 2018 11:37 am
10YearPlan wrote:
Fri May 25, 2018 9:56 am
I am, unfortunately, very familiar with this topic. Both of my parents got sick, more or less simultaneously. Both ultimately required full time care: one parent went to an assisted living facility specifically for Dementia and the other was cared for by a FT caregiver at home in the final months. Both had hospice care, one for years and the other for approximately 6 months.

The parent with dementia had the early-onset variety, so unfortunately when it struck, we were unprepared (not that you can ever really be prepared). We did have advance directives but they were not specific enough, I guess, to cover the situations I found myself in A LOT. As an example, people with Dementia can fall quite often. If you are in assisted living, this usually results in an ambulance ride, ER visit and potentially hospitalization. Typically, these falls are caused by something medical, and in many cases that cause is a UTI. UTIs are of course, not necessarily life-threatening. But untreated, they can lead to pain, and eventually but only possibly, death. So even while on hospice, I was always sort of strong-armed into providing antibiotics each and every time. In fact, whenever I questioned it, doctors, nurses, hospice case workers, all looked at me like I had just grown an extra head. So, antibiotics were administered and parent got temporarily "better" for a while. The last UTI I refused antibiotics and it was kind of a battle. They were setting up the IV antibiotics as I was arriving at the hospital and I had to stop them. Even in my parent's extremely debilitated state, this was not looked at like a rational decision. I felt so alone.

There was never a moment-with either parent-when it was as simple as not providing CPR. That would have been an easy choice and likely would not have been met with resistance. And even with hospice on board (two entirely different hospices btw) the end of life was prolonged and painful and gut-wrenching for all. Morphine was hard to come by until things got pretty bad and death was imminent. In my opinion, weeks too late for both.

I don't know what I will do, but I hope for my kids' sake that this is not their experience. Financially, we had no long term care insurance and it really depleted my parents' assets. But thankfully they had those assets to deplete. I read once that the average care of a nursing home stay is 3 years. So that is kind of what I plan around. Obviously it could be much longer, shorter, or hopefully not at all.
Thank you for posting your experience, dreadful as it is to hear. This exactly describes the terrible complexity and the difficulty of withholding care from a person with advanced dementia or Alzheimer's -- even if they had prepared an advance directive and healthcare POA to enable that. The care system is not on your side, and you are in a horrible struggle with your own conscience about what to do. You are so correct to describe the fact that there are many, many common and non-terminal incidents such as falls, UTIs, and the like that are responsively treated and the person has a very good chance of surviving if they are treated. This has happened with my mother over the years also, and we responded by taking her to the hospital ER for treatment and she has bounced back from every one of them, a couple of them requiring that she be placed in rehab treatment in nursing homes for a few weeks. She has dementia and she wanted to be treated for all these episodes. What would you do, even if your loved one had prepared an advance directive and healthcare POA conferring you the authority to withhold care after a fall, the flu, a UTI, an infection, etc.?

If your mother was able to communicate her preference to get treatment to you and her caregivers, then would the POA and directive be relevant?

When I was making decisions about my mother’s care, she was no longer able to make her wishes known.
I can also envision a situation where the patient with dementia (but still verbal, if not necessarily coherent) sometimes makes statements about wanting something care related, and other times refuses it. Even if the advanced directive is clear... that's a hard situation. Worse, if one had had just this type of conversation in advance, and thus knew the "lucid" preference... how would the care facility deal with withholding certain types of treatment, or managing pain aggressively as directed, etc.?

This has to be among the worst types of situations/decisions with respect to loved ones, and in some cases, when it's a spouse, it obviously is going to be the way the marriage/relationship ends.
Not a pleasant thought in any way... if one starts thinking through the possible "details", and as is said, the devil is in the details.
It certainly is, in this type of situation.

Specific advanced directives *and* advanced explicit conversations with medical professionals could probably help with this?
Has anyone dealt with this particular problem?

RM

I honestly don’t know how probable the situation you describe is. The original statement was about treating easily survivable conditions. Would health care providers agree to withhold treatment for a UTI because someone had dementia?

CULater
Posts: 1040
Joined: Sun Nov 13, 2016 10:59 am

Re: Alzheimer's Disease, Long Term Care, and your Retirement Finances

Post by CULater » Fri May 25, 2018 2:47 pm

The wording in the typical Healthcare POI is that the person must be incapacitated in order for the POI to become effective (springing POI), or that the person must be unable to communicate their wishes before the agent can exercise their authority. Mine reads "in the opinion of my treating physician I am unable...to make or communicate a decision regarding my healthcare." My mother's POA reads that she must be unable to communicate "even by blinking my eyes."

I see now that this wording seems all wrong, because it assumes the individual is making and communicating decisions as a "coherent self," and doesn't take into consideration that their apparent decisions may be at odds with even their own desires as a coherent self. "Mary, blink if you want to take these pills to help make your flu go away." Mary blinks and she gets the medication. It should be clear in one's advance directive and healthcare POI that the agent has authority based on specific criteria of diminished mental capacity which supersedes the individual's own apparent decisions. Tricky business if the individual is not completely comatose.
May you have the hindsight to know where you've been, The foresight to know where you're going, And the insight to know when you've gone too far. ~ Irish Blessing

CULater
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Re: Alzheimer's Disease, Long Term Care, and your Retirement Finances

Post by CULater » Fri May 25, 2018 3:26 pm

I honestly don’t know how probable the situation you describe is. The original statement was about treating easily survivable conditions. Would health care providers agree to withhold treatment for a UTI because someone had dementia?
Let's look at a few different scenarios:

1) Hospital: Mom is hospitalized, I can't imagine that the treating physician would withhold treatment for a UTI or similar treatable condition. Mom could refuse treatment, or her surrogate with authority could refuse and ask that treatments that have been initiated be withdrawn. In this case, Mom would be discharged from care.

2) Assisted Living: The medical care staff at the ALF would contact the Mom's physician and/or the responsible parties to initiate diagnosis and treatment for her condition. Mom or her empowered surrogate could refuse treatment or have treatment withdrawn, but the ALF is under no obligation to allow Mom to continue to reside at the facility if this conflicts with ethical and legal responsibilities. In my experience, ALFs are extremely sensitive about issues that present any risk to state licensure.

3) Long Term Care: Again, treatment can be refused or withdrawn but if this conflicts with the institution's legal and ethical responsibilities they are under no obligation to allow Mom to remain at the facility.

4) Independent Living/Living at Home: Even here, those responsible for the supervision and welfare of the individual should be sensitive to issues of elder abuse/neglect. There are state laws that apply. Let's say that you have Mom living with you and she has dementia. She has a UTI and you decide not to see a physician or not to administer antibiotics. Your well-intentioned neighbor drops in and notices that Mom is ill and learns that you aren't giving her any medication or that you haven't taken her to see a doctor. Your concerned neighbor doesn't think that things smell right and contacts the authorities, who come to see you regarding possible charges of neglect or abuse.
May you have the hindsight to know where you've been, The foresight to know where you're going, And the insight to know when you've gone too far. ~ Irish Blessing

10YearPlan
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Re: Alzheimer's Disease, Long Term Care, and your Retirement Finances

Post by 10YearPlan » Fri May 25, 2018 3:55 pm

CULater wrote:
Fri May 25, 2018 3:26 pm
I honestly don’t know how probable the situation you describe is. The original statement was about treating easily survivable conditions. Would health care providers agree to withhold treatment for a UTI because someone had dementia?
Let's look at a few different scenarios:

1) Hospital: Mom is hospitalized, I can't imagine that the treating physician would withhold treatment for a UTI or similar treatable condition. Mom could refuse treatment, or her surrogate with authority could refuse and ask that treatments that have been initiated be withdrawn. In this case, Mom would be discharged from care.

2) Assisted Living: The medical care staff at the ALF would contact the Mom's physician and/or the responsible parties to initiate diagnosis and treatment for her condition. Mom or her empowered surrogate could refuse treatment or have treatment withdrawn, but the ALF is under no obligation to allow Mom to continue to reside at the facility if this conflicts with ethical and legal responsibilities. In my experience, ALFs are extremely sensitive about issues that present any risk to state licensure.

3) Long Term Care: Again, treatment can be refused or withdrawn but if this conflicts with the institution's legal and ethical responsibilities they are under no obligation to allow Mom to remain at the facility.

4) Independent Living/Living at Home: Even here, those responsible for the supervision and welfare of the individual should be sensitive to issues of elder abuse/neglect. There are state laws that apply. Let's say that you have Mom living with you and she has dementia. She has a UTI and you decide not to see a physician or not to administer antibiotics. Your well-intentioned neighbor drops in and notices that Mom is ill and learns that you aren't giving her any medication or that you haven't taken her to see a doctor. Your concerned neighbor doesn't think that things smell right and contacts the authorities, who come to see you regarding possible charges of neglect or abuse.
I will provide some additional examples of the thousand ways we can potentially over-treat someone in the later stages of dementia or other terminal illness:

Pneumonia vaccine-This was a requirement of the assisted living facility so unable to refuse. Had parent not been in assisted living, would have not opted for this.
xRays and/or MRIs (after falls). These were not presented like options. But I can tell you they can be very traumatic to demented persons.
Catheterization-Also not presented as if there is an option. Needed to collect urine samples to determine whether parent had UTI. VERY traumatic each and every time.
So many blood draws.

It was not until my parent was actively dying that the pressure to prevent, diagnose, and/or treat related/unrelated conditions relented.

For non-demented parent with pacemaker and cancer, protracted discussions around when to turn off pacemaker occurred. Doctors wanted to do a biopsy on suspicious skin growth (when already dying from another cancer).

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Re: Alzheimer's Disease, Long Term Care, and your Retirement Finances

Post by CULater » Fri May 25, 2018 4:34 pm

10YearPlan - Thanks for the detailed info. You are so correct about this. Another example: my mother has Type 2 diabetes and is on oral medication. For years, her doctor had her using lancets and strips to test for sugar daily. In the ALF they took over that responsibility but have to use their standard lancets for everyone, which were quite painful to my mother. Nothing could be done to allow the smaller, less-painful lancets to be used for her and she complained loudly and repeatedly. Finally, we prevailed on the house physician to dispense with the daily finger prick and test A1c only since she was not on insulin. Sure, not as medically exact as daily testing but who cares? It would probably make sense to do away with A1c as well.
May you have the hindsight to know where you've been, The foresight to know where you're going, And the insight to know when you've gone too far. ~ Irish Blessing

2015
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Re: Alzheimer's Disease, Long Term Care, and your Retirement Finances

Post by 2015 » Fri May 25, 2018 6:20 pm

bikechuck wrote:
Fri May 25, 2018 8:37 am
2015 wrote:
Sat May 19, 2018 6:32 pm
Here's my long term care plan:

https://www.cnn.com/2018/05/10/health/d ... index.html

I have no intention of enduring Alzheimer's in any form or fashion, and would be gone long before LTC would be required. I don't personally consider such a minimal existence as "living". YMMV.
I feel the same way but this could be difficult to manage. At what point do you "take action". I have a spouse, daughter's and grandchildren all of who will be impacted by my actions. Act too soon and you give up a lot while negatively impacting loved ones. Act too late and you might not have the mental capacity to implement your plan.

This is a very difficult thing to navigate.
I know what you mean, and I've always handled this by engaging in honest and open communication. It seems I read almost daily the mess some family has on their hands because they put off or never engaged in having the "difficult" discussions so crucial to estate planning, to include end of life wishes.

2015
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Re: Alzheimer's Disease, Long Term Care, and your Retirement Finances

Post by 2015 » Fri May 25, 2018 6:29 pm

pennywise wrote:
Fri May 25, 2018 8:10 am
2015 wrote:
Thu May 24, 2018 12:22 pm

I've posted previously the unique advantage I have is while others theorize about all this stuff I've actually lived it. The so-called life force, which to me is more like the walking dead in situations involving physical or cognitive decline, is of no consequence as I have experience defeating it.
Respectfully, unless you are posting from The Great Beyond, this is not actually possible, ie reporting from individual personal experience regarding the decision to terminate one's life due to mental incapacity.

If you are still posting to online forums, you haven't :D . Unless you have defeated the life force of other people, in which case I'd strongly advise you say no more about THAT on an online forum :?:
Rather than restating the point you missed entirely, I advise going back and reading my post. The post will in no way be actionable to you unless you understand that one does not have to die to defeat any so-called "life force", whatever that's supposed to be. Even then, YMMV, and I wouldn't presume to suggest otherwise to you.

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VictoriaF
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Re: Alzheimer's Disease, Long Term Care, and your Retirement Finances

Post by VictoriaF » Sat May 26, 2018 4:24 pm

ncbill wrote:
Thu May 24, 2018 5:06 pm

Sorry, my mistake, dementia is not specifically described as a terminal disease within the language of the model health care POA for my state.

Here are the 'springing' conditions to activate the POA:

"I have an incurable or irreversible condition that will result in my death within a relatively short period of time.
I become unconscious and my health care providers determine that, to a high degree of medical certainty, I will never regain my consciousness.
I suffer from advanced dementia or any other condition which results in the substantial loss of my cognitive ability and my
health care providers determine that, to a high degree of medical certainty, this loss is not reversible."

...
I am wondering about the clause "to a high degree of medical certainty." In the probability theory, certainty is equivalent to 0% or 100%. Everything else is uncertain. Could not imprecise language be used as a reason to dishonor one's stated preferences?

Victoria
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