Friday, July 29, 2011

Letter to a Rehab Director: Part IV (conclusion of four part series)

This is Part IV of the series. (click for Part I)  (click for Part II)  (click for Part III)

SUMMATION:  Caveats about Elder Care in Rehab Centers and Nursing Homes

The letter to fictionalized "Katherine Doe, Executive Director of Pillow Elder Home"  in (Part I) (Part II) and (Part III) identifies issues typical of nursing homes and rehabs. I know this because friends' parents have ended up there or in nursing homes and they have told me their experiences or I have seen the places for myself. 

From the letter, we see that Mrs. White hired a personal assistant, who with additional help from nieces and other family cleaned up Mrs. White and changed her bag, brought in quality food, dressed her, washed her hair, put on her make up, gave her additional PT and OT and fulfilled her needs. Why? The rehab nurses and aides were lovely, but the rehab was understaffed.  

This impacted the overall quality of care spreading the staff so thin to produce a situation of neglect. The situation forced Mrs. White to be left in her feces at times for up to an hour. Staff, busy with other things, overlooked her Thrush. Staff could care less she wasn't eating. (What could they do about it? Whose responsibility is it that the food is bad?)  Whose responsibility is it that the rehab didn't give her PT and OT 6 days a week and when it was given it was scheduled in a disorganized fashion? Such problems are systemic; such issues are organizational; one can easily push the blame toward others. And if you add quality control it is time consuming, adds paper work and can further gum up the mess which really relates to understaffing. This is typical of a bureaucracy.

So Mrs. White paid double for her care in the rehab. First, she paid her federal taxes going to Medicare and Medicare insurance, and then she hired her personal assistant (and a second one the last four days she was there). This is in addition to her nieces flying in from Florida and Rhode Island (taking off from work, using their paid leave time or taking the hit of not being paid at all) my care giving (I am retired.) and the visits of friends and other family who brought food, friendship and emotional support to reduce Mrs. White's stress level. Need I remind of the lack of sleep one gets in these places? Sleep is one of the most critical components of healing...that and low levels of stress as the body is already stressed by surgical intervention, medications, catheters, poking and prodding and complete lack of stabilization. Naturally, institutional healing takes twice as long if not longer, especially for the elderly because of lack of restful sleep and stress.

In spite of these issues, Mrs. White was lucky and maybe it wasn't all luck. First, she had the means to hire personal assistants and she had extended caring family who wanted to give back the generosity she had shown them over the years. Most elderly do not have this tremendous support network. They end up not rehabbing in a month's time because of issues similar to the ones Mrs. White experienced (and they aren't as sick as Mrs. White was...some just fall and don't even break bones, but falls take a toll on the elderly). Oftentimes, they don't recover and many don't because of the issues listed (1. PT and OT are not administered consistently-6 days a week; 2. The elderly are overmedicated (sedatives) or with drugs that have little effect (aracet, namenda...for dementia) and negative side effects; 3. They have Thrush which decreases their appetite and weakens their immune system; 4. On top of that the rehab food is unappetizing, not fresh and mostly processed...all decreasing the elderly's strength and immune systems.) If they don't recover quickly enough, they are put in nursing homes. This occurs especially if there is no one to care for them and they need 24/7 care.

This happened to my friend's mother and another relative of mine. Both had been initially living at home and managing; in the instance of my cousin, her mother needed care because of her senility and it was decided by siblings that their mom would be better off not living at home. Their mother was placed in a typical nursing home with a fairly good reputation. The average time given for patients to live in nursing home facilities is two years. In great physical condition, she is still there four + years later. However, mentally she has deteriorated greatly; her appearance which had looked better (even in her early 90s) is now crone-like. I attribute this to neglect, poor facility implementation of their "mission statement," lack of concern from an understaffed, youthful population of staffers with a skewed set of values and non empathetic imaginations, a non stimulative program and routine and general malaise of "we're just the gatekeepers to usher them into the next world" mentality. Sorry, but there it is.

My friend's mom, has been in an assisted living center because she cannot have 24/7 care at home. Initially, she had fallen and was taken to a hospital. She had no broken bones, but it took her a long time to rehab and PT and OT did not feel she was ready to be released. (I wonder why????) She went from the hospital to the rehab center and then to a nursing home (not a rehab which must make you mobile) which she disliked intensely and then to the assisted living center. She has not recovered to where she was before she fell. She has a walker; she is on Depends; she is weakened; she says the food tastes bad, something she complained about in the nursing home. (She has been on antibiotics. And she is on a med for dementia, though physically she has no other diseases like diabetes, etc.) She used to take great care of her personal appearance, going out, having her hair done, and this was at 88; she will be 89. Now my friend tells me her mom looks old; her hair is a mess and she is a picture of neglect. No one cares, least of all she. She is not actively engaged in much of anything; she doesn't play the piano any more. She does not attend church and officiate like she used to during the service. There is little stimulation; there is deterioration.

My relative and my friend's mom are the same age. The difference is in the social network. With my relative, there was a vast social network that teamed support: family and friends. They pushed hard, the doctors, the rehab, the OT and PT because they were THERE, PRESENT AND WATCHFUL. They were Mrs. White's advocates. On the other hand, my friend was unable to do the same for her mom. There wasn't a vast social network; the siblings were spread far and wide and there wasn't the monetary means to fill in when friends and family could not. 

Then again, one can have the means, but if the caretakers are wicked, then the elderly person is lost. The Astors had the means and look what happened to Mrs. Astor? Her caretakers abused their fiduciary responsibility of managing her estate and her resultant lack of care augmented to egregious negligence when her old age could have been in a time of comfort. The old are vulnerable even if they are billionaires. So it isn't always about having the means. Perhaps it gets down to the basics: empathy and the golden rule (do unto others...). Oh, and there's one more quality, let's see...what is it?  Duh....LOVE?

Some would say "These are elderly folks. What do you expect? You want them to live forever? Be reasonable! They are on their way out and if the inefficient, negligent and incompetent care in these facilities hurries the ancient toward the grim reaper's scythe, isn't that merciful?" AFTER ALL, IT'S A BOON FOR THE CEOs and UPPER LEVEL MANAGEMENT. Wow!  Head up a predominately Medicare patiented facility and GO TO TOWN! $$$$$ Sky's the limit! Who's really watching and better than that...enforcing? Haven't you heard...enforcement is down in every government department. Budgets? Ha, ha. The country is going to default. So, regulations? Easily gotten around. Quality control issues. Ha, ha, ha. The government requires the minimum of bureaucracies. LOOK AT CONGRESS' RECENT BEHAVIOR!!!! 

The only problem for CEOs and the officials is extended social networks of loving family and friends who ARE AROUND AND ADVOCATING AND PAINS IN THE ASS (sorry P-G ratings). And I don't mean virtual networks...which are abjectly useless in this instance...unless the elderly have webcams posted in front of their faces day and night linked to the internet of some nonprofit monitoring of the elderly in rehabs and nursing homes, a sort of Amnesty Greys for the ancient. Hmmmm, not a bad idea.

Old age is a hard pill for everyone to swallow. And everyone will get there, unless they find a way out sooner (Suicide is painless.) But for those who have made it and have thrived to reach their 80s and 90s, those who are walking, sentient and purposeful, don't we owe it to honor them for their guts, their grace, their persistence and long suffering through this tough existence we refer to as "life?" Or should we look at them and ultimately ourselves as "throw-aways," not fit for the dust heaps after the age of 80?  And thus, by degrees, low class and cruel, should we slowly doom them and ourselves to a gradual weakening and decline, by not helping them recover to full strength from a fall or whatever? We can do this because we can. They are old and vulnerable and no one is around to pounce like a vulture if they are neglected, given substandard care and shoved into a much worse state (than before they arrived at the hospital or rehab or nursing home) because of systemic institutionalized neglect.

Healing? Stress. Healing? Stress. What happens to a culture that neglects its young and old? What happens to a ruling elite that through its own incompetence and shameful failures of mission promotes such neglect? Nada? I think not. The neglect of the young and old is representative of what lies beneath in each of our government bureaucracies. The waste and mismanagement has burgeoned and "whomever is responsible" has neglected to do anything to change or reform it. And of course, no one is responsible...the "other party" is responsible...the Council of 300 are responsible, The Bilderberg Group are responsible, the Illuminati are responsible...the Taliban is responsible. Everyone is responsible. Ad nauseum. You see how effective passing the blame is.

Neglect has a horrible way of coming back like a monstrous nightmare that can only be ended upon the death of the mind dreaming it. Neglect breeds inefficiency and waste. Inefficiency and waste breed debt. Debt breeds default. The neglect is systemic, running all throughout the system, like a fungal Thrush. And those in power, including the officials who are in charge of Rehabs seem to have no appetite for reform's uncertainty. Nor do they appear to have the strength and will to envision and perpetrate a successful system beyond "doing the minimum" of what regulations require. They need to go to hospital, then to rehab, to see for themselves, that what is needed is basic humanity and empathy. There's nothing like a little concern for someone else to heal what's ailing oneself. And no joke, these folks (power elites and those in charge) are ailing...riddled with sickness...immobile, inactive. And all the medicine in the world won't help.


Margo Dill said...

The universe works in weird ways. Our neighbors just had an experience with understaffed nursing home/rehab center when he was there after a knee surgery. He was literally wheeling down the hallway shouting for someone/anyone to help him. Finally a custodian heard him and helped him. It is so sad. But like so many professions, working in a center like this is HARD work and the pay and benefits do not match the amount of hard work--and emotions that go with a job in a nursing home/rehab center. Carole: Thanks for drawing attention to this topic.


Carole Di Tosti said...

It truly frightens me. The staff are not to blame; they mostly do the best they can. It's the administrators who are profiting from others' illness and their neglect because they don't have advocates to step up for them. I see things are not better in your neck of the woods. I thought it was just something that happened in big cities. (not really...just thought I'd say that)
Thanks for sharing, Margo.