About the Long Term Care Benefits in the Health Care Bill

By Jeralyn, Section Social Justice
Posted on Thu Nov 19, 2009 at 08:09:00 AM EST
Tags: elder care, health care reform bill (all tags)

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(Warning: This post is going to be controversial and expresses my views only.)

Both the House and Senate bills would create a voluntary federal program to provide long-term care insurance that pays small cash benefits to people with severe cognitive or physical disabilities. Like the elderly.

I don't think most people understand what long term care insurance covers. It covers nursing homes, assisted living facilities, and for the cognitively or physically disabled, some home health care costs in lieu of going to a facility. This isn't medical coverage but coverage that assists those who can't feed, clothe, toilet or bathe themselves. You aren't eligible until you can't do at least two of the above. The payments cover a fraction of the actual cost of the services. In other words, you have to be basically physically or mentally dysfunctional to qualify for what is a paltry amount of benefits. [More...]

I have spent enough time in assisted living facilities and nursing homes (both of my parents died in them, one in a rehab unit and the other after three years in a nursing home preceded by three years in assisted living) to know I have no intention of going to either. When the time comes that I can't feed, dress, bathe and toilet myself, I'm checking out. I canceled my long term care policy years ago, I'm just not going.

There is something seriously wrong with a system that shuttles the old and demented to a nursing home where they will die at an average cost of $10,000 a month. Most long term care policies pay between $75 and $200 a day (the rest of the expense is not covered by Medicare or private insurance.)

What do you do there besides wait to die while suffering indignities like being diapered and wheeled from the dining room to your room and back, to eat among strangers you can't communicate with even if you wanted to? The odds are one or both of you will not make sense due to dementia.

Even if physical therapy could help you, Medicare gets it seriously wrong. They will pay for therapy until you have reached "a peak" where they acknowledge you've gotten as far as you can. So if your head falls into your chest when you sit in your wheelchair, and they finally get you to where your head stays semi-up, they say that's as far as you will go, and Medicare cuts off your therapy. (You then are eligible for restorative therapy which consists of a nursing home staffer coming in your room to offer to wheel you around the facility once a day.)

Even if you offer to pay for continued therapy with your own money, they won't continue the therapy. They say they don't have the staff available -- their therapists are needed for those who haven't yet reached "their peak."

You then have to wait until you've lost the gain from your therapy to the point where your head is back on your chest, usually about three months, before they agree to start all over again. And then, the cycle repeats. They finally get you to the same point as before, but when you reach the peak, you're done.

Same for walking. You can get therapy to get you out of a wheelchair and walking down the hall, but once they have you walking for a few minutes, and that's likely as far as you are going to be able to walk on your own, instead of continuing the therapy so your legs don't atrophy, they have to stop the therapy. A few months later, when you're back to where you started and no longer able to even stand up when getting from the bed to the wheelchair, they'll start in again -- until you're walking for five minutes, held up by a harnass, and then, you've reached your peak and the therapy stops. In other words, you lose all the benefits of the therapy and they wait months, then repeat from scratch. The off-months are miserable for the patient, and a total waste.

Long term care benefits are a rip-off. I'd rather see the money go to counseling for end of life decisions, and laws that allow the physically and cognitively disabled who had the foresight to sign an end of life directive while still cognitively able to do so, make the choice to end their life when it comes to that -- rather than forcing them to use their life-time accumulation of assets (again, at $120k year up) to live without dignity, without quality of life, sedated into oblivion by anti-psychotic drugs so they won't make a fuss and be disruptive among other patients and strangers (whether at the nursing home or at home with part-time home health care workers) until they die.

Memo to Congress: Keep your lousy $75 a day benefit. I don't want to pay for it and have no intention of using it. Instead, expand Medicare benefits to cover the full cost of assisted living facilities and nursing homes for those who need and are willing to go, and allow the rest of us to opt out through a dignified death -- meaning we are allowed to obtain prescriptions for drugs in sufficient quantities that will allow us to implement our decision to opt-out -- without fear of criminal prosecution should we fail.

The money the Government saves from the opt-outs should be enough to allow it to change those crazy policies that cut off therpay coverage when a patient is functioning at their maximum level. The whole point should be to keep patients at their maximum level of functioning, and that can only be done with continued therapy.

This isn't the fault of the nursing homes or assisted living facilities. It's the fault of the Government, for enacting its crazy hodge-podge of regulations and limits related to providing physical and occupational therapies.

I don't see how $75 a day is going to get qualified health care workers to anyone's house to do what's needed. It's a drop in the bucket. A frank discussion with our elders about what they prefer should they find themselves in that circumstance is what's needed, and in order for that to be a meaningful discussion, there must be meaningful choices available.

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About the Long Term Care Benefits in the Health Care Bill | 41 comments (41 topical)

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It's a peculiar commentary on our medical system.. (5.00 / 1) (#1)
by mcl on Thu Nov 19, 2009 at 04:28:06 AM EST

Many observers have noted that the American medical system seems to be obsessed with providing super-expensive ultra-expert heroic end-of-life care, while ignoring the need for much more mundane medical services -- in particular, preventive health care.

The concept that the U.S. medical system ought to allow patients to decide to die with dignity clashes dramatically with the AMA's mania for heroic measures. Terminal cancer patients with 6 weeks to live routinely get expensive surgery, chemo, radiation treatments, you name it. It's absolutely crazy.

A lot of this comes down to simple hubris. Americans think they're the gods of the universe. Time and time again I hear the wildly arrogant boast "America can do ANYTHING!!!!" We're seeing this crazy mindset in the never-ending wars in Afghanistan and Iraq. And this kind of attitude toward medical care seems symptomatic of that hubris.

American doctors appear unable to admit that there are any diseases they can't cure. American health care seems incapable of recognizing that beyond a certain point, the quality of life is just not worth living for a terminal patient.

Hysterical teabaggers call what you're suggesting "death panels." Out here in the real world, rational people call it recognizing that medicine has sharp limits on what it can do. Maybe in some distant science fiction future we'll be able to cure Alzheimers and reverse the brain damage it causes, but for the foreseeable future, a living will with provisions for ending your own life with dignity if you become brain-dead or completely incapacitated simply makes basic sense.

By the way, $75 per day barely clocks in above minimum wage. Does anything think hospices and rest homes will get anyone other than ex-felons and rapists on the run to change bedpans for those kinds of wages?

Well, the nursing home lobby has a lot (5.00 / 4) (#5)
by inclusiveheart on Thu Nov 19, 2009 at 07:19:08 AM EST

to say about how this all is managed. The reality is that like my Grandmother, there are many elderly people who could actually stay at home if there were home healthcare benefits - and the cost of home health is far, far less than nursing homes.


I hope that the Medicare cuts (5.00 / 3) (#9)
by Cream City on Thu Nov 19, 2009 at 08:29:06 AM EST

do not reduce the help available for in-home care. My mother-in-law, going on 100 now, has been able to stay at home (with brief hospital bouts and one stay of several weeks at an assisted living site, so I know the frustrations with them well) owing to my wonderful daughter and her dad -- once we were able to convince him to get home health care. The daily visits and assistance by different aides and equipment and more are entirely covered by Medicare.

Somehow, I suspect that won't be there for my age group now -- the same as Jeralyn's age group. We peak-birth-year boomers have been hit time and again with finding out that what was there for those ahead of us is not there for us, because the government sees our numbers coming. . . .


Home health and medicare (none / 0) (#52)
by Molly Pitcher on Thu Nov 19, 2009 at 12:30:29 PM EST

Medicare covers the cost of the first 100 home health visits following a hospital stay. It has the same limitations as physical therapy, etc.


: Well, we'll deal with that (none / 0) (#53)
by Cream City on Thu Nov 19, 2009 at 12:41:22 PM EST

when the day comes.
And one home health care worker already already donated a day -- not for the usual care, as the reason wouldn't be covered, but to just be there with grandma . . . so that her son could get to our son's wedding reception.
The worker wouldn't take pay and said it was a gift. They all are wonderful, by and large, and thank heavens. I never thought that we could get this incredibly independent nigh-on-to-100-year-old (still has her hair dyed red every two weeks!) to accept the care, terrified as she was of nursing homes after seeing so many friends there over the years. And then we had to convince her son that he and our daughter could not continue to do it alone and needed breaks. It's all such a difficult time, but good care workers can make such a difference. Bless them.

This is an excellent post in my (5.00 / 1) (#34)
by Militarytracy on Thu Nov 19, 2009 at 10:03:17 AM EST

opinion. My grandparents wanted to be in their own homes. Nobody minded going over at times to do a load of laundry, or the dishes......I stopped expecting their homes to be spotless and when I visited a visit usually included some houseshold duties. They were happy though, they all were greatly relieved to be in their homes and not removed from them and placed into some kind of home where nothing was theirs anymore. They had the money to pay for assistance to come in from time to time but their own space and privacy was treasured by them. My mother's mom did express to me once how frightening it was for her to age and pray that her children didn't decide she needed to go to a home of some kind. She feared being honest with anyone about her daily health issues.


I have an aunt in a nursing facility (5.00 / 1) (#42)
by Anne on Thu Nov 19, 2009 at 10:40:08 AM EST

in northern Virginia; she has moderate-to-severe Alzheimer's, is incontinent, cannot bathe or dress herself, and needs assistance with eating.

It's certainly sad and upsetting to see how much she has deteriorated, but unlike some people with Alzheimer's, who exhibit a lot of anxiety, and who become combative and angry, she has retained her sweet personality, and seems both comfortable and well-acclimated to her surroundings and her routine. I've considered moving her closer to us, so we could pop in to see her more often, but I'm fearful that taking her out of an environment she knows will be a change she won't be able to cope with.

The monthly cost for her care is just over $10,000, and she has no long-term care insurance coverage (we also have a client in my firm, who wanted to stay in her home, and now has 24/7 home health aides that last year, cost $140,000 - so there is a price for being in your home, and this particular person has no idea anymore where she is, but her wishes are being honored, and she's lucky enough to have the wherewithal to afford it).

Is it a great life? Not compared to ten years ago, no. But, isn't it also true that even most of us who've been around for four or five or six decades don't have the same lives we had in our twenties or thirties? We acclimate to whatever our lives are at any given point, and I guess we each have to determine at what point our quality of life is not worth it. I am reminded of my grandmother, who once related that in her head, she still felt the same as she did when she was in her twenties, and sometimes it was jarring to look in the mirror and realize she was actually old. Now that I am in my fifties, I understand that in a way I didn't 30 years ago!

None of us want to end up in long-term nursing care facilities. None of us want to come to the realization that this is where we might be headed. None of us want to be a financial and emotional drain on our families, either.

I still think, when it comes down to it, that if we placed more value on the elderly, we might not be so afraid to face whatever old age brings us.


And there are people out there trying (5.00 / 1) (#56)
by Inspector Gadget on Thu Nov 19, 2009 at 02:09:07 PM EST

to make it possible for humans to live to 150 :)

I watched my mother reach a point where there was no quality of life left for her or my dad because she had become so weak. She was well aware that if her condition couldn't improve, she was destined for a nursing home. The last night before she went into a coma she anxiously tied up all the important "loose ends" with dad and each of us. It was so obvious that she was eager to go to sleep and slip away quietly.

I'm grateful to live in a state where medically induced conclusion is allowed.


150 years? Ugh. (none / 0) (#57)
by Anne on Thu Nov 19, 2009 at 02:26:51 PM EST

The idea of living almost 100 more years just makes me feel tired.

We all need living wills, advance directives and to have serious, pointed conversations with the people who love us, so that there is no doubt about what people want.

My aunt never executed any of these documents, and she can no longer make these decisions for herself. I remember when we had to make the decision to take my uncle - her younger brother - off the ventilator 5 years ago, she expressed that she would never want to live "like that," so I know that should she take a medical turn for the worse, we won't be taking any extraordinary measures to prolong her life.

I think when you watch someone dwindle away, and suffer in the process, when there is a loss of the essence of who someone is, it becomes a little easier to heed a loved one's plea to be allowed to go, in as much peace as possible.

Sometimes the most unselfish and loving act is to allow someone the dignity of a good death.


Fortunately, (none / 0) (#58)
by Inspector Gadget on Thu Nov 19, 2009 at 02:34:17 PM EST

my mom was clear headed and signed her own DNR at the hospital as she entered hospice care just a couple of weeks before she died. She and my dad had every conceiveable document from wills to community property agreements to living wills for decades. They even had/have plots paid for, cremation paid for, etc. Mom selected her own urn, and I'm now trying to ease dad into buying his own. They never wanted to burden (their word) us with these things.


: I'm with the comedienne who said (none / 0) (#60)
by Cream City on Thu Nov 19, 2009 at 05:15:38 PM EST

that it's all fine and good that modern medicine is adding to our longevity, adding years to our lives -- except why do those years all have to come at the end?
That was before I was informed that 50 is the new 40, 60 is the new 50, yadda yadda. Yeh, in my boomer mind, but nobody told my aching knees.:-)

In terms of what I would do personally (5.00 / 2) (#3)
by Big Tent Democrat on Thu Nov 19, 2009 at 07:00:04 AM EST

in those circumstances, my choice would be yours. On that point, you speak for me.

I am not well versed on the policy issues, so I demur on that.

Came to the same conclusion for the same (5.00 / 2) (#7)
by Boo Radly on Thu Nov 19, 2009 at 07:51:32 AM EST

reasons. I experienced my parents passing within two months of each other several years ago. It is a given in this area that you will not get adequate medical care at any age, but the elderly are targets for neglect and disregard and certain rules. This attitude of apathy drove me crazy before my parents deaths. I was a working single parent - only child. It was a nightmare to try to be there for them, protect them from the very people who were to help them. In my mother's case - her death was caused by neglect. Horrible bitter pill to swallow, did not pursue legal case. I also became profoundly deaf that year. I determined that I would never put myself into medical care for anything. Nor would I leave it in the hands of my only living relatives - two adult children - I've always had a living will. I have had no medical care for ten years except getting a case of shingles, which was brought on by stress. It's my choice. Who wants to stay in a world like we have today? Human life has been devalued by the pressing greed of what passes for society and what passes as leadership. It is painful for me to think of what my children will experience in the future.

I have a favorite blog whose owner ends most posts with these words - silence = death. So true in my opinion. It can happen to any of us and it is being determined by our government. How can anyone not see what is occurring with just the rumors of what a health "reform" bill may or may not have? I don't want to die - I just realise the options are not in my favor. I don't want my children to struggle with this insanity.

There is clearly a reason for the dithering in the case of healthcare "reform" and the rumored start date of what is passed - right after another election.

the end of life vs. ending life (5.00 / 3) (#8)
by Molly Pitcher on Thu Nov 19, 2009 at 08:23:34 AM EST

I supervised care for three different older folks as well as for my husband, in addition to hands-on care for a portion of the latter's last six years as a hemiplegic. I surely hope you all do not slide in dementia so gently you miss the point where you can end it all!

My husband was never asked if he wanted to be 'saved' after his terrible strokes (two, same day). After I gave up on caring for him and he was moved to a nursing home, he was asked by a psychiatrist if he wished he were dead. "No!" is what he answered (and tho' he couldn't walk or talk, he still knew several languages and the discipline of which he was a professor).

What was said about therapy in these cases is totally true. But what the getting-older-by-the,minute folk (me) need is more community care, care based on home workers. And $75 a day would definitely help. Near DC right now, you can get home aides for $15 to $21 an hour, 4 hours minimum. That is enough in many cases. I do not recall the cost of a day program for my husband, but it was around $50 a day, plus help to put him to bed,

Long term care paid almost all his costs, and his SS covered the rest with some left over. (I changed my policy to favor assisted living over in-home care. The latter really requires an able-bodied relative on hand most of the time.)

Don't sneer at that $75 dollars; it would help tremendously to keep folks out of those homes, which I agree are warehouses for the most part.
I do not want a nursing home in my future, but my long-term-care policy is a protection for my kids.
Be nice if all families had the additional resources!

: Agree (5.00 / 2) (#11)
by Lora on Thu Nov 19, 2009 at 08:52:44 AM EST

I agree with everything you've said.
I also agree with this part of Jeralyn's post:

The whole point should be to keep patients at their maximum level of functioning, and that can only be done with continued therapy.
We shouldn't have to choose between long-term care and therapy to keep people functioning.
Also, not everyone who needs long-term care is totally or permanently disabled, mentally and/or physically. Being in a situation where you might need long-term care does not automatically mean you are a vegetable or can only live the life of a vegetable.

There's nothing wrong with the system... (5.00 / 1) (#10)
by lambert on Thu Nov 19, 2009 at 08:31:15 AM EST

... if you're the corporation collecting the $10,000.

And since the current Democratic bills enshrine health care for profit as an operating principle, isn't there a little more at stake here than repairing a "rip off"?

* * *

With you on "checking out," BTW.

That's what my pops did... (5.00 / 1) (#13)
by kdog on Thu Nov 19, 2009 at 09:15:48 AM EST

way too soon in my opinion, but thats what he did...chose to die on his own terms, as the greatest fear he confessed to me before he died was being unable to care and provide for himself...fear of being the old man in a wheelchair who needs his diaper changed. Way too proud a man for any of that mess...

I tend to think that will be my choice as well...but I don't think there is a right or wrong answer to such heavy questions..only what is right or wrong for you. Certainly no one should be forced to off themselves or forced to live an undignified life in a home. Issues like these are what have concerned me from jump street in the healthcare debate...will we end up with more choice or less? Improved access and affordability to any and all care we want or just a different flavor of rationing and restriction? More control over our lives or less? I don't know, I don't think anybody does..but looking at the players and the playbook its probably safe to assume the worst.

If you care to comment, please (none / 0) (#55)
by oculus on Thu Nov 19, 2009 at 01:03:07 PM EST

summarize the reactions of close family members to your father's decision. And, were they aware of his decision before he implemented it?


We all knew... (none / 0) (#59)
by kdog on Thu Nov 19, 2009 at 03:33:48 PM EST

what was up, that pops was out to drink himself to death...though I was my fathers confidant and the only one he actually explained to what he was doing and why in depth...and I was kinda put in the position to explain it to moms and my siblings as best I could...though no one understood like I did, me and pops shared a common wave length and way of thinking.

None of us agreed with it because pops had good years left, it wasn't like he had a chronic illness besides alcoholism, and he had battled the alcoholism before and spent many years on the wagon.

My sister was angry, she was the one who always stood up to and talked back to pops growing up...she definitely got his strong will, me and the boys were more like moms that way, don't make waves and go with the flow. They had some screaming matches over it. Mom and pops had grown apart and really didn't understand each other or communicate much near the end...she and my brothers came to peace with it quietly in their own ways.

In a way I was fortunate to have been the one pops confided in, we had some great long deep talks near the end and I came to a greater understanding of him as a man, instead of just a father. Though it was pretty brutal emotionally at the time, and I have some guilt issues about being the one who made his booze runs for him...looking back, on the whole, I'm grateful. Though I didn't agree and it was hell to go through...at least he gave me the gift of a look at his soul that no one else got.

Hope that wasn't too rambly Oc and answered your question:)


: Not too rambly. Thank you. (none / 0) (#61)
by oculus on Thu Nov 19, 2009 at 05:21:00 PM EST

Imagine if we treated... (5.00 / 3) (#15)
by kdog on Thu Nov 19, 2009 at 09:23:32 AM EST

healthcare like we treat war and defense...meaning money is no object, whatever it costs it costs. I certainly don't want to be party to denying the sick and the old whatever treatment or comforts they wish to have in their last years.

But that would mean we'd have to change the way we pay for war and defense...meaning budget restraints and prioritization. As well as the rest of the budget that is less important than healthcare.

I think that is the key word...priorities. We need to decide what they are and act accordingly. I'd put healthcare right behind individual liberty on my priority list...really, what is more important?

Healthcare and individual liberty (none / 0) (#16)
by Wile ECoyote on Thu Nov 19, 2009 at 09:29:45 AM EST

So can a person choose whether or not to have health insurance? Can a person choose to not live a healthy life style and force someone else to pay for it? So if a person chooses to have every possible procedure done in order to attempt to extend their own life, no matter the cost, should they force someone else to pay for it?


Well... (5.00 / 1) (#20)
by kdog on Thu Nov 19, 2009 at 09:38:29 AM EST

I'm being forced to pay for the occupation of Afghanistan right now, forced to pay for my own potential arrest right now...if we flipped that script and instead I was forced to pay for fat-arse Joe Blow's third triple bypass it would be an improvement...thats all I'm sayin. It still might not be 100% righteous, but it's an improvement. Joe Blow probably doesn't deserve it after eating all those Whoppers, but I could live with that a lot better than I live with the Afghan occupation and drug war.


Forced to pay for your own (none / 0) (#26)
by Wile ECoyote on Thu Nov 19, 2009 at 09:48:27 AM EST

potential arrest right now?

Prove it would be an improvement. Donate your money to the free clinic of your choice. Individual choice, right? Let us know the name of the clinic...


: I'm down to try it Wile... (none / 0) (#35)
by kdog on Thu Nov 19, 2009 at 10:07:10 AM EST

but the DEA would never go for it if they were forced to exsist on private donations alone...my money would be on the clinic to raise more funds under a voluntary system...they actually help people.

I support Medicare for all (5.00 / 1) (#62)
by BobTinKY on Fri Nov 20, 2009 at 11:23:04 AM EST

I support retinaing private insurance & adding a robust public option available to all.

I even support allowing states to opt out of the pubic option.

I do not support the Senate bill that provides 30 million new customers to private insurers paid for by taxpayers if necessary. It is the worst possible outcome which is what I have long suspected it would be.

Democrats should be ashamed of this bill.

Sad Commentary.................................... (none / 0) (#2)
by samsguy18 on Thu Nov 19, 2009 at 05:23:03 AM EST

Well, some family members (none / 0) (#4)
by andgarden on Thu Nov 19, 2009 at 07:16:01 AM EST

have to me to absolutely never pull the plug. So it's all about what you choose. And I think it's good that more people will have a choice.

: I think one of the (5.00 / 1) (#6)
by dk on Thu Nov 19, 2009 at 07:37:33 AM EST

arguments here is that the amount of money in the bill, and the way it is being directed, does not go anywhere to give more people a choice.

I agree that long term insurance (none / 0) (#17)
by Radiowalla on Thu Nov 19, 2009 at 09:30:13 AM EST

is a rip off. I would never consider buying it for that reason.

Your plan to "check out" before the need for feeding, toileting, etc. occurs isn't that easy to accomplish, especially if you haven't the capacity, physical or mental. I'm all for physician aid in dying but it is illegal in most states and highly regulated in Oregon. Self-determination just isn't very easy at the end of life.

But then as a lawyer, you know all that.

Not controversial to me (none / 0) (#24)
by Militarytracy on Thu Nov 19, 2009 at 09:45:34 AM EST

I feel fortunate that my grandparents were able to stay in their homes. We checked on them often, and nurses came and went during different happenings. They hospiced at home and they left the world from their own homes. I went through some of this with one grandmother, she would go to assisted living and therapy sometimes after going through different lung infections. Then they would send her home. Gratefully though her last stop was her home. I don't see much overall benefit to be gained from this plan. Are they going this route in an attempt to make the babyboomer voting block feel slightly more secure as everything falls apart?

My grandparents (none / 0) (#30)
by Steve M on Thu Nov 19, 2009 at 09:50:12 AM EST

both passed a few months back, and I'm very happy they were able to get top-notch nursing home and hospice care to get them through those last few difficult months. They were living at home probably longer than they should have, and my dad, who is a saint, spent the bulk of every day attending to their needs and running around town for them and basically doing everything a good son ought to do, but it was a huge burden.

I think everyone deserves to make their own decisions, and something we can do as a society is to encourage people to think about these issues in advance when we still have our wits about us. But everyone is different and everyone is going to make different decisions. I support assisted suicide and I don't think anyone should be forced to continue living when they have no quality of life, but quality of life is an intensely personal judgment. Some people just need a little extra assistance to get through the day and I want them to have access to that.

I would rather err on the side of prolonging life. If someone with severe dementia lives for a few years and doesn't even know who they are or what they're doing, that's a shame and it's sad to watch. But I'd rather have some of that than the scenario where someone else gets to decide "Grandpa doesn't have enough quality of life, time to pull the plug." Assisted suicide, in my view, is for people who are rational enough to make their own decisions but in pain or whatever to the point where they don't want to continue. Living wills are fine, of course, for the situation where someone lacks actual consciousness. But I don't have a solution for the person with severe dementia. Setting aside the boogeyman of death panels, I really don't want to empower anyone at all to make the quality-of-life decision for that person.

Largely agree, but (none / 0) (#40)
by gyrfalcon on Thu Nov 19, 2009 at 10:24:06 AM EST

depends on whether we're talking nursing homes only or have the option of home care. And people should always have a choice. My late mother had the same feeling as you do, Jeralyn. She had such an overwhelming horror of nursing homes that when she had to spend a couple of months in one for rehab (many of the better ones do both rehab and permanent care), she immediately fell into a deep depression and refused to cooperate in the physical therapy necessary to get her in shape to get out of there and come home.

But I also saw permanent residents of the nursing home who needed the constant supervision and care but were quite cheerful, social, not suffering from dementia, and giving every appearance of still getting a good deal of juice out of life.

I cared for my mother at her home for the last years of her life as she deteriorated both mentally and physically. This was only possible because I'm single, self-employed and could work from home. I had to basically give up my life to look after her, and if she hadn't had me, she would have needed paid 24-hour home care in order to stay out of a nursing home.

You're so totally right about the PT. As soon as the follow-up visiting therapist got her to a certain point, that was the end of it. Like many elderly, she was unwilling to keep up the exercises on her own and I couldn't get her to do them no matter what I tried. If the "slave driver" therapist had been able to continue to come regularly, her physical (and mental) deterioration would certainly have slowed and made it possible for her to do more things for herself much longer, and not need 24-hour supervision.

The whole system of elder care is a terrible mess (and starts with the extreme shortage of physicians trained in the real peculiarities of gerontology), and it's going to be coming to a terrible head as we Baby Boomers get to that stage of life.

Jim's redirection of the thread (none / 0) (#45)
by Jeralyn on Thu Nov 19, 2009 at 10:46:30 AM EST

to teabaggers has been deleted as well as the comments responding to it. This post is not about that, it's about long term care insurance.

I thought I was in the (none / 0) (#48)
by coast on Thu Nov 19, 2009 at 11:03:01 AM EST

early stages of dementia when the comments went from 40+ to 20+.


: apologies to those who followed (none / 0) (#49)
by Jeralyn on Thu Nov 19, 2009 at 11:07:24 AM EST

his redirection with a response. I'm really interested in commenter's views on long term care and end of life decisions, and his distraction just ruined the flow. As he knew it would.

a rational system in Canada (none / 0) (#46)
by noholib on Thu Nov 19, 2009 at 10:48:17 AM EST

In Canada, a person can get into a reasonably-priced, well-run long-term care facility and even pay for a private room -- on the strength of their pensions, accumulated through years of employment and taxes. Yes, yeah TAXES!
My parents, who are both around 90 years old, now live in a government-supported hospital and home for the aged in Montreal. They did NOT have to deplete all their assets in order to move into this facility. In fact, the funds they still have cover the cost of a private companion for a few hours a day (to help bring my parents together from different floors, etc.)
Yes, it is a bureaucratic system, but it is reasonably priced and rational -- and thereby, humane.
I gained a lot by moving from Canada to the U.S. some 30 years ago, but now, because of the deeply inhumane approach to health care in this country, I often rue the day that I did so.
The health insurance model is fundamentally flawed, as so many on this blog often point out. It is health care that every living being requires, not health insurance. We all have pre-existing conditions - it's called life and moving inexorably toward sickness and death. Existentialism or Buddhism 101, plain and simple. A society should figure out how to provide for its members' needs, not how to deny them access to treatment and care -- which after all is the only way that private insurance companies make a profit.

As for dementia and quality of life, I think it's rather complicated. Elderly people can suffer from dementia or another form of cognitive impairment, but that doesn't mean that they cannot experience any joy from relationships and activities. It's difficult to understand that unless you've known people in that state.

I meant to note this earlier (none / 0) (#47)
by jimakaPPJ on Thu Nov 19, 2009 at 10:56:51 AM EST

but got distracted..........

If you haven't, make a Living Will.

Make an appointment with an attorney who specializes in Medicare and Medicaid laws in your state and take the appropriate action based on your situation based on an understanding of the law, not what you think it is or have been told it is by friends, relatives and/or uninformed health care professionals.

: There's also "five wishes" (none / 0) (#50)
by Jeralyn on Thu Nov 19, 2009 at 11:17:33 AM EST

that you can get at any hospital. It's a booklet that lets you fill out in specific detail what you want and don't want should you reach that point. It's valid in 35 states and the District of Columbia. Here's one I found online.

: Watching the Terri Schiavo case (none / 0) (#54)
by Cream City on Thu Nov 19, 2009 at 12:45:19 PM EST

had us drafting codicils by the day, I'll tell ya, as were doing livings wills then. Our lawyer had to laugh at a few of my proposed additions, like "nobody rips open my blouse on national tv, or I'll haunt them from the grave!"
But another caution, from what we've seen: Do not get taken to a Catholic hospital. We and another family went through so much for so long because Catholic hospitals here would not honor wishes.
And from a more recent experience, also be sure that DNR (do not resuscitate) orders, if you wish them, are on each and every record. We went through having to clarify that, as some records at a hospital said one thing, and some said another thing -- and that left paramedics in a muddle. So they resuscitated, their opt-out, despite orders otherwise but not on the records that came up on their computer.

The ultimate opt out. (none / 0) (#51)
by oculus on Thu Nov 19, 2009 at 11:52:15 AM EST

(1) Parents told adult children they would take life-ending drugs at some point and at their cabin. Everytime kids went to cabin, the feared what they would find. Parents eventually did it.

(2) Friend sd., while she was in her 60s, she would opt out at 75. Afraid she would run out of funds. But she is well over her deadline, relatively healthy, planning a trip to Australia to visit her son and his family.