Back from the Home

Sharon October 6th, 2009

In high school and college, I worked a lot in nursing homes.  I thought the work was more interesting than burger flipping, and I liked many of the patients.  I liked that I did something that mattered.  And I came to realize that if it were at all possible to avoid, I didn’t want to see my parents or grandparents in a nursing home.

It wasn’t that the homes I worked in were awful – they mostly weren’t.  Oh, I worked in one bad one, but since all nursing homes always needed more workers, I could pick and choose.  It wasn’t that the staff weren’t kind – most of them were low income workers, some illegal, others immigrants.  Despite the fact that they often weren’t treated that well, that the job was physically demanding and the pay appalling (it was good by my college student standards, but I didn’t have to support a family on it), with a couple of exceptions, everyone was kind, patient and generally, as responsive as they possibly could be.

But even then there weren’t enough staff to go around.  There wasn’t enough light or air or individual attention.  Privacy disappeared, those whose minds were intact were often treated as though they weren’t, and the institution ruled all.  Often patients were stuck in front of the tv, or otherwise managed to make them need as little as possible.   Sometimes they were utterly abandoned by their families, and the staff was unable to begin to help those losses.  I remember an elderly Greek woman with alzheimers whose children abandoned her – she spoke no english, had no idea where she was most of the time.  I took the time to go get a Greek-English dictionary out of the library and copy out basic terms, so that we could speak to her, but her children never did as much – they didn’t even respond to frantic queries by staff to please help us understand her. 

Moreover, even when the staff was the best possible staff, even when the circumstances were the best possible circumstances, the reality of institutions is that there is little particularity of care – that is, one cares for a group of disabled elders, rather than for a particular person, accomodating their particular ways. 

Don’t get me wrong – having cared for many people with alzheimers and after strokes, I don’t judge those who can’t care for elderly parents and grandparents at home.  We were fortunate in many ways – we committed to keeping Eric’s grandparents out of a nursing home, but Eric’s grandfather was only truly disoriented and failing deeply for a matter of a few months, while Eric’s grandmother, instead of a long decline, had an accident and a comparatively quick death.  And we were fortunate enough to have me be able to be at home – two adults with full time jobs caring for an adult who needs constant physical attention is exhausting and frustrating.  There is a place for skilled nursing care in the world.  There are elders who simply cannot be kept at home.

That said, however, every nursing home I ever worked in also contained patients who could have continued to live with family, had there been anyone to be even reasonably accomodating.  One of my favorite patients was a woman who had had a stroke, and was unable to walk – her strong, healthy and retired son and daughter in law visited daily during the 7 years she lived in the nursing home – and enjoyed lively conversation with a woman of deep intellect and humor. All she required for daily care was a little help transferring from bed to chair to bathroom, and I admit, I was completely mystified as to why she was stuck in a shared room with three other women, sitting in her chair, waiting for her children to visit.  I enquired, and she told me that when her son had suggested a nursing home, she’d agreed, because she could see he didn’t really want her living with him.

Most of us, if we envision something other than wholly independent old age, probably hope for something like an affluent person’s assisted living community or a senior residence.  The reality is that these places are available only to those with substantial savings or income, or high value housing to trade.  And it is also the case that when your savings are gone, you are removed from such places – it is not at all uncommon for someone to enter assisted living and outlive their income or housing value, and have to move either back in with family or into a nursing home.

Affluent assisted living, funded by a rising housing market and stock market growth is simply not something most of us will be able to count on.  Which leaves one of two choices - the care of loved ones or nursing homes.  And the nursing home option is about to get a lot worse:

http://news.yahoo.com/s/ap/20091004/ap_on_re_us/us_meltdown_nursing_home_cuts_3

“The nation’s nursing homes are perilously close to laying off workers, cutting services — possibly even closing — because of a perfect storm wallop from the recession and deep federal and state government spending cuts, industry experts say.

A Medicare rate adjustment that cuts an estimated $16 billion in nursing home funding over the next 10 years was enacted at week’s end by the federal Centers for Medicare and Medicaid Services — on top of state-level cuts or flat-funding that already had the industry reeling.

And Congress is debating slashing billions more in Medicare funding as part of health care reform.

Add it all up, and the nursing home industry is headed for a crisis, industry officials say.

“We can foresee the possibility of nursing homes having to close their doors,” said David Hebert, a senior vice president at the American Health Care Association. “I certainly foresee that we’ll have to let staff go.”

The funding crisis comes as the nation’s baby boomers age ever closer toward needing nursing home care. The nation’s 16,000 nursing homes housed 1.85 million people last year, up from 1.79 million in 2007, U.S. Census Bureau figures show.

Already this year, 24 states have cut funding for nursing home care and other health services needed by low-income people who are elderly or disabled, according to the Center on Budget and Policy Priorities, a nonprofit research firm based in Washington, D.C.”

As our population ages, the choices for caring for them are about to get much narrower – fewer options, fewer people with enough wealth to pay for all the amenities, and much worse public care for the elderly.   We were always facing this crisis – the baby boomer’s aging was always going to put a massive strain on our financial resources and ability to do elder care.  The situation is rendered more acute, however, by our collective crisis, and we must, quite rapidly, begin making plans for how we will care for aging parents and grandparents.  If before it was marginally possible to imagine putting them in a “home” fairly soon, it will not be.

I know many people who will say that they’d rather endure anything than be dependent on their children.  But the truth is this – that for most people, times will come in their lives when they are dependent – on spouses, and then, perhaps, on children.  It is part of our lives – we have a long stretch of dependency as children, grow up, have a long stretch of being the one to do and care, and a short or long stretch at the end.  You can either be dependent upon your children, or upon strangers who are paid to care for you – but either way, many lives will include periods of dependency.

You can view this in one of two ways – as completely normal, part of the structure of family life, or you can view it as becoming an intolerable burden.  You can shape the future of this dependency in several ways – we can structure our family life in such a way as to make it as pleasant and easy as possible, or we can do as we do, and make it as hard and unpleasant as possible.  We can, as much as possible, come together as extended families to spread the obligation around, or we can throw it back on the nearest child who happens to live the least long distance away from aging parents.  And we can keep parents idependently far away from us as long as humanly possible, so that when they do need to rely on their children, they are incapable of reciprocating and offering help in the house or with grandkids and good companionship, or we can combine households early, as people age, so that families can serve one another, and the transition to dependency is simply another part of a long history of inter-dependence.

There are no easy and good choices here – I know many people who beg their parents to consider living with or near them, and the parents won’t consider it.  I know families that can’t get along.  I know people with plenty of good reasons to be far away from those who need them.  None of this is simple.  None of the changes we need to make will be easy.  But they are necessary, and they might as well begin sooner, rather than later.

Sharon

18 Responses to “Back from the Home”

  1. DEEon 06 Oct 2009 at 10:40 am

    As a nurse working in long term care for years I’ve seen the best and worst of it. There have been many improvements but still a lot more that can be done. I’ve worked in places that were so disgusting we used the bathroom in the Taco Shak across the road for our own needs. I’ve worked in hoity-toilty assisted living palaces and everything in between. My MIL recently went into one of the best ones I know of…not that the family wouldn’t care for her…and bachelor BIL took over the care of my 50 year old blind autistic SIL when she did have to be placed ….but we all knew her dementia was getting dangerous to herself and Jenny. In fact, MIL and her two sisters tried caring for their mom after a major stroke and wore themselves out doing so.

    My best design would be care homes where a family could accept someone without family/resources and be paid a decent amt. for caring for them. In MI they had a program like this for awhile. A neighbor had two elderly but healthy gentleman that she care for and was paid enough that she could be home with her children. Many of these people only need supervision for any meds, meals and bathing.

    On the other hand I’ve seen residents arrive from horrific neglect situations thrive in our nursing home. A lady who lay on the floor three days with a broken hip and her son left her there because she “was bad for falling”–another whose family kept taking her home for her SS check…as she lost both legs and an arm to diabetic complications. So many residents say they were so lonely at home…they come, join in activities,make friends. So we can’t be too hasty to judge. True,the best part is when someone arrives and you see them prosper,get well, and leave! But this can’t happen for them all,unfortunately.

    Most caregivers love their residents…they really do as the poor wages,working conditions and heavy physical labor sure scare away those who don’t. Try caring for 400+ lb. residents for 8 hours…..the obese and diabetic are the majority of our residents now. We all go out of our way to provide the little enjoyments for them. I routinely take flowers, garden produce,honey for their tea, pick up a book they might like,taught a couple ladies to knit. Others take them shopping or bring in clothes they;ve found for them. Some days are hectic and we do have critically ill residents but it is a home and the residents look out for each other in many ways. We know the ones who never have visitors –or have family that promises to visit but never will.

    In my rural area there are four nursing homes that I’ve worked at and I wouldn’t hesitate to put my loved ones in any of them. Isn’t just their defiency-free status but the loving atmosphere that you feel when you go in. Pets, a wheelchair accesible garden, fruit bowls, music….well, I could ramble on for pages but will spare you! DEE

  2. Kay in Wisconsinon 06 Oct 2009 at 3:22 pm

    My dad died a year ago after having had dementia for several years. My mother kept him at home for as long as possible, but eventually she put him in a nursing home. He declined quickly from there — I’m not sure it was even a few weeks before he went into the hospital and then a hospice, where he died.

    That was May 2008 and I still have not cried over his death. He was a cruel, mean, small man who made my childhood a living hell and left me with many issues I still grapple with. I admit it was pathetic and sad to see him so confused and scared, and I felt sympathy for the man he became, but I kept my distance and never could have welcomed him into my home and cared for him.

    I hope if and when the time comes my own child feels more compassionate toward me.

  3. Cathyon 06 Oct 2009 at 3:28 pm

    Your post is very timely for me. Mom (age 87) has been in a nursing home since mid-June due to serious complications from a broken ankle. Her 100 days of Medicare coverage for nursing home coverage has been exhausted. So now what? The nursing home has contacted us to discuss a discharge date for her – even though there is no way that she can live on her own right now (and they know it).
    We’ve applied for Medicare, but have been refused because her home is owned by a living trust in her name – so now we have to remove it from the trust and that eats up even more more time.
    We’ve also applied for a reverse mortgage but the value of homes has fallen so drastically that a reverse mortgage will only provide a few more months of income to pay for the nursing care ($6,000+/mo).
    We kids are at our wits’ ends trying to figure out what went wrong and how this can be paid for our mom.
    Mom worked her entire life, paid into Social Security, and saved what she could. What’s wrong with this picture?

  4. ceceliaon 06 Oct 2009 at 4:50 pm

    My mother had an aneurism some 18 years ago and ended up with some loss of mobility and speech. She was reasonably independent for about 10 years – she lived with me and I was able to continue working full time and could still enjoy an active social and community life. However, the last 5 years she has grown increasingly unable to be alone and I now work part time.

    It has not been easy the last five years and there have been significant financial consequences for me. But I am happy to do it. My mom cared for her mother at home and the way I see it – she also made huge sacrifices to care for me as a child.

    One of the problems is that medicare is essentially used for nursing home care. If we could use medicare for home health aides/personnel care attendants and respite care for caregivers, it would make it easier for more families to provide care at home.

    My grandmother spent the last three months of her life in a very expensive nursing home that was reputedly so great. Within a week of admission her lovely bedclothes and bed jackets had all been stolen as were her radio, her music box , her wedding ring and her scented powders. We took turns visiting her every day and so would feed her dinner to her. On those days when we did not come or came late, no one bothered to feed her. The stench was so bad that I vomited routinely in the parking lot after leaving.

    This horrifying level of care cost over 90,000 for less than three months.

    So I care for Mom at home and pray she dies peacefully here.

  5. Shambaon 06 Oct 2009 at 7:03 pm

    I grappled with all these problems for about 9 years, with my dad and my mom, until my mom passed away last year in September. My dad died in 2001.

    My heart goes out to those of you who have posted here about the family and financial problems you are grappling with.

    It seems to me that each family is so different and the thorny issues that have to be decided on simply depend on the situation and the people involved.

    Kay, you had to make the best decision you could at the time based on your family and you.

    My question is what about all the boomers, single or couples, who have no children? Of course, having children is no guarantee just as having parents is no guarantee of a happy, safe childhood.

    And if the health care system deteriorates much in the next sa, 5-10 years, and there isn’t as much care for aging boomers, then will they live as long as their parents? If there aren’t as many heart surgeries, bypass surgeries, phamaceuticals that help heart health or bone health, and fewer joint replacements , I could list all kinds of procedures that have helped extend life and make life easier for those over 65, or even over 50\, how will long will this aging population live?

    Thorny difficult issues to deal with in this post.

    Peace to all,
    shamba

  6. Teresa Noelle Robertson 06 Oct 2009 at 8:06 pm

    We’ve been wrestling with this issue. My mother is an independent 76, but won’t always be. She doesn’t want to hear about the possiblity of moving in with us and in any case, it presents some very real logistical issues: my husband’s work isn’t particularly transferable, so we can’t easily move to her; my mother’s NY teacher’s pension would be heavily taxed in Massachusetts, so she can’t easily move to us; and neither her house nor ours is well set up for the purpose. It could be done either place, just not particularly comfortably.

    Sigh.

  7. Apple Jack Creekon 06 Oct 2009 at 9:20 pm

    I suppose I am in many ways fortunate to live in a family that openly discusses these things before they are needed.

    My parents recently moved back to live nearby (within an hour, which counts as nearby for Alberta), and we live in a house that was purposely designed so that if it needed to house more than one family, it could do so fairly easily – it can be broken up into two separate but joined houses, if need be, and has reasonably decent access for wheelchairs and such (not great, but the doors are at least wide enough).

    I think that given the variety of personality/mental health issues involved in our situation, it’s probably best if we are able to make use of community care / long term care if it comes to that, and fortunately for us, that’s a reasonable option (the Canadian system has it’s faults, but at least this part of it works fairly well). However, if things were such that we needed to have a parent live here for some length of time, at least we are set up for it, mostly. We all know it’d be difficult, but we also know we’ll do what needs doing.

    The local vintner better stay in business, though, I’ll need a regular glass of wine to get through it!

  8. suze_ozon 07 Oct 2009 at 5:23 am

    Caring for both my parents has become my life. My dad has a combination of post polio syndrome, Menierre’s syndrome, several blood disorders and Alzheimer’s among other things. My mother has a complicated medical history too. Dad has needed care since 1994. It is definitely a difficult journey and one I would rather not drag my children through.

    We were just about to begin respite once a week and dad needed surgery. I hope they keep the place but I will see what happens as there are others that need a break too.

    My marriage broke up 10 months ago and since then we have been together 24/7. I cannot complain because without my folks I would be homeless. But I do wish my mother had not promised dad that we would never put him in a home…..Because with Alzheimer’s the day is likely to come. I worked as an RN in geriatrics so I have a fair idea what this journey entails.

    I admire anyone who manages to provide care for those who need it.

  9. MEAon 07 Oct 2009 at 9:21 am

    I tried to have “the converstaion” with my otherwise very resonable mother.

    She put a nice stop to it by saying, “I will decided when I’m too much trouble, and then I will just stop eating.”

    My biggest fear is what will happen with my father. He’s not that heavy for an adult male, but even together, my mother and I can’t lift him, and I’m not sure we could even turn him unless he was able to assist. That might well mean a nurshing home for him long before he really needed one –

    Exccept, I’m so certaint that with the crash that’s already started, sooner or later there will come a winter where he doesn’t survive his annual bout with pneumonia becuase the supportive care won’t be there and he’ll die at home without a long, long decline. I think I can rely on the help of neighbors for a few days help lifting while we nurse him. It doesn’t sound all that bad, actaully, compared to some of the lingering deaths I’ve seen.

    The women in my mother’s famioly tend to live into their 90s with no health problems, and just fade away, dying quietly in a chair or in bed after a normal day. (Now that that point, that day might have consisted of mostly sitting, doing the veg in the morning and a five minute walk in the afternoon.)

    That’s what I’m hoping for.

    MEA

  10. Sharonon 07 Oct 2009 at 10:03 am

    Suze and all the others dealing with this – you have my absolute sympathies. I do hope we’ll be able to keep funding for some kind of community care – and in home care.

    Sharon

  11. Fernon 07 Oct 2009 at 10:10 am

    My mom’s currently 92, and usually lives alone. Right now an alcoholic cousin of mine is living with her. Other cousins (we have a BIG family, most of whom live in Chicago) are pushing Mom to move into ‘assisted living’.

    Mom is forgetful, and getting more so. It’s hard to measure, since she has always been … ‘flighty’. She DOES remember that she is no longer to light Shabbos candles if no one else is around. She has also always been somewhat paranoid, but now she is sure that folks SOMEHOW enter her appartment during the night and take/break things. This is a typical sympton of the age related dementia in our family. She’s legally blind and mostly deaf. But she handles her own finances, can do her own cooking and cleaning, has meals on wheels daily to make sure someone LOOKS at her every day, has a wonderful helper who takes her shopping every other week, and talks to several of us family members on the phone daily.

    The cousins pushing for the nursing home don’t believe that when if she runs out of money the expensive ($4500 per month) ones they are looking at will kick her out. At that point she would be MORE frail, MORE vulnerable, and BROKE. I think that approach is nuts.

    The decisions are all up to Mom and me, since I’m an only child. Right now, we both feel she can live alone as long as there is enough support. For now, the level of support IS enough. When it no longer is enough, we’ll go for a new living situation – possibly starting with some aids living with her. All options are still open, what her health needs at that time will be, as well as her mental capacity, as well as what is going on in the economy/society will determine what path we take then.

    Living with me is not an option, as I live on the east coast away from family (and she clearly wants to be near the greater number of family members), my home has to many stairs, and she does not even NOW respect work at home business hours.

    Getting old can suck – but it still beats the alternative most of the time.

    Frondly, Fern

  12. Ameliaon 07 Oct 2009 at 11:56 am

    This is strangely prescient, Sharon; a woman of my acquaintance is seeing her mother through the end stages of Alzheimer’s at home, and just posted today about the GP’s home visit — essentially, they will increase the dosage of the painkillers and keep her comfortable until she goes.

  13. nlon 07 Oct 2009 at 5:23 pm

    The easiest solution, it seems to me, is to have elderly live at their kids’ house, and hire one of those people of the sort who work at a nursing home. Instead of $4500 a month, you can pay maybe $1500 a month if you also include room and board. Also, you have 1 on 1 care.

  14. Brad K.on 07 Oct 2009 at 7:49 pm

    @ nl,

    Much of the reference to taking care of elderly parents at homes overlooks a fundamental change in America since that was the norm: We stopped having children expected to care for their parents.

    Instead we have “the American dream” as being a single family dwelling. Combining generations doesn’t fit the “now” generation. We would need to start raising a child or three, each family, expecting to remain with and care for the parents. It is too late, now, to impose the life style and life goal changes on adults – the changes are more fundamental than accepting that nations could change sufficiently to ameliorate the effects of climate change. We don’t have the social structures to support caring for the elderly, nor the financial structures. Today it would take an affluent family to undertake care of their parents. In the past, families of modest means were capable of caring for parents at home, and could be capable again, in a couple of generations.

  15. nlon 07 Oct 2009 at 8:09 pm

    “Instead we have “the American dream” as being a single family dwelling. Combining generations doesn’t fit the “now” generation. We would need to start raising a child or three, each family, expecting to remain with and care for the parents. It is too late, now, to impose the life style and life goal changes on adults – the changes are more fundamental than accepting that nations could change sufficiently to ameliorate the effects of climate change. We don’t have the social structures to support caring for the elderly, nor the financial structures. Today it would take an affluent family to undertake care of their parents. In the past, families of modest means were capable of caring for parents at home, and could be capable again, in a couple of generations.”

    Translation:

    “No real problems that I can see. Good idea!”

  16. GeekyGardeneron 07 Oct 2009 at 10:04 pm

    But what of those who cannot have children and have chosen not to adopt? I fully expect to be involved in my parents’ care as they age (helped my father, will help my mother & stepfather). However, my collection of dogs & cats will not be able to take care of me when I get old (and we don’t have plans to have kids).

    So I am saving a lot of money for a retirement home … independent of social security. A growing number of people are choosing to be child-free, at the last census the percentage of women who where child-free (ages 40+) was double the figure 30 years ago. Fully 20% of women have not had children by the time they reach 44. I’m assuming numbers are the same for men and will continue to climb.

    If anything, this trend will indicate a growing need for nursing home beds.

  17. Sharonon 08 Oct 2009 at 7:10 am

    The child free are a big issue – one of my hopes is that older adults who have chosen not to have families will take on extended families by choice – that is, consider combining households with younger people, and acting as honorary aunts and uncles and grandparents. Or working with their other family – for example, my husband’s childless aunt was cared for by two nieces. The reality is that unless we can count on good institutional resources, which I fear we can’t, we are going to have to count on tribal relationships – and it is worth establishing them sooner rather than later.

    My husband and I represent another pole on this spectrum – our parents are divorced and remarried, and between us, we have 7 parents. For four of those parents, we are effectively the only means of support, plus I will have an obligation to two of the other three. We expect to be stretched rather thin – and I’m not the only one in this situation – there are simply more baby boomers than their are Gen X children.

    Sharon

  18. [...] post breaks down the fall of the middle class , while Sharon Astyk’s has to kick me in the soul with what our economy is doing to the care and future of [...]

Trackback URI | Comments RSS

Leave a Reply