Voices in the Wilderness, pt. 1
November 26th, 2006
I’m doing better since my last post, which is interesting to me, since nothing external has changed. Except, maybe, my hormones–which I know are internal but I think fueled my anxiety last weekend. So the medical researchers out there who are looking for a way to use that extra NIH grant money might consider studying the effects of menopause on middle-aged caregivers. There would be no shortage of participants, I imagine.
While on the subject of caregiving, I want to link to this post by Gail at Mom & Me Journals dot net. She originally wrote it almost a year ago, but has revised it recently. I’ve been thinking a lot lately about the psychology behind the advice I often hear given to caregivers–basically, if we don’t ask for help we shouldn’t expect to get it. Can you imagine giving that advice to, say, someone with serious depression or cerebral palsy?
There are few absolutes beyond death and taxes, but one of them is that all caregivers want help. ALL OF US. Many of us are so immersed in the particular world of our care recipient that we are just too tired to write memos detailing the particular areas of need. But some of us do. Some of us turn to blogs because the experience is so solitary and isolating, and we no longer know who to turn to. This will come as a surprise to the folks that Gail refers to in her post, but it’s true.
I can speak best for adult “children” of infirm parents, those of us who might also be caring for our own children, or working outside the home. Most of us have had the experience of being sucked into the institutional care maw, whose processes serve mostly to perpetuate itself. “Economy of scale” is the prevailing principle, or, “You’re going to get this service whether you need it or not because it’s easiest for us.” And you either take the package, or nothing at all.
An example is my mother’s recent hospital stay for a pulmonary embolism. I will reluctantly admit that I appreciated the hospital’s obvious brush with TQM (Total Quality Management) had made a real difference in the way we all were treated. The institution was making an effort to reach out to its customers. But behind this customer service model lurked the same harried generalizations that underlie institutional “efficiency.”
It amazes me that hospital professionals still seem surprised when an elderly patient exhibits delerium. I would imagine that most of the patients at any given time in a hospital are over the age of 60–shouldn’t we be paying more attention to the psychological effects of hospitalization on these older patients? A number of years ago I saw my father go from lucid to delerious during the six or so hours we spent waiting in the emergency room before he was admitted for his spinal stenosis. Not once did a doctor or nurse mention that this is a relatively common occurrance for the elderly patient. I had to research it on my own. This occurred about eight years ago, and the only improvement I can see is in the nature of the restraints that are used. Instead of being tied down, like my father was, my mother was discreetly alarmed in the nursing home.
But my point here is that when my mother exhibited delirium during her recent hospital stay, the social work staff were pressuring me to make long-term care plans based on that transient state. My sister and I might say to them, “No, she isn’t this agitated and delerious at home,” and I sensed they thought we were refusing to face the truth. In addition, my mother’s embolism weakened her–as expected–but the same staff were counseling us to ditch the plans for assisted living in favor of a nursing home, based on my mother’s pre-rehab state. “She doesn’t look like she can walk to me,” one of the social workers snapped when I resisted her.
Maybe, since Alzheimer’s Disease alone would not qualify her for Medicare benefits (ARE ANY MEMBERS OF THE SENATE SPECIAL COMMITTEE ON AGING LISTENING TO THIS??) the staff were trying to find some disability that would keep her in rehab as long as possible. But isn’t that just another sign of something wrong here?
So back to my original gripe about having, on top of everything, to ask for help or forever hold our peace: there’s help and there’s help. Institutional help usually means orchestrating a spectrum of unaffiliated services or dealing with a monolithic institution (see also Mike’s experiences at Fading from Memory, as well as Bert’s at Had a Dad). We have to figure out what’s private pay and what’s paid for by insurance, which usually induces apoplexy at the disconnect between Washington and the rest of America.
And why are our Congress members NOT looking at the fact that a nursing home costs upwards of $6000 a month: How many people of retirement age earn that much from their social security and pension? How many of them can afford this, or assisted living, without impoverishing themselves? And what further toll does this take on the caregiver, who is by this time exhausted but still wants the best care for her charge? The caregiver must now enter the world of the housing market, on top of everything else, just to “spend down.” Instead of coming up with an institutional solution for this disconnect, the burden is again placed on the person responsible–the caregiver. As long as we rely on this tortured misuse of Medicaid we are not facing the primary problem of our responsibility to our most vulnerable citizens AND we are keeping a dirty little secret that is anything but, and which is a further insult to the unpaid caregivers whose collective role we don’t really want to acknowledge.
I’m going to continue this post tomorrow.
November 26th, 2006 at 10:11 pm
So true!
November 27th, 2006 at 1:50 am
Whoa, well, I’m looking forward to tomorrow’s post! Thanks for leaving the comment at my site that led me to this. One of the areas I haven’t talked about in my journal is the area of financing, since it doesn’t, yet, affect us. I am vaguely aware, though, of the “spend down” strategy; and the policy of impoverishment in order to pay for institutional (or institutionalized) care that is inadequate, anyway. I’m glad you’re addressing this. I love your spirit in this post, Deb.
November 27th, 2006 at 2:37 am
Deb,
You ask, “And why are our Congress members NOT looking at the fact that a nursing home costs upwards of $6000 a month:”
Maybe Congress gets their bogus, outdated, useless information from the Alzheimer’s Association Statistics page. Their site states:
“The average cost for nursing home care is $42,000 per year…”
Totally false.
According to the Metlife Mature Market Institute’s 2005 report, the average cost is $203 per day or $74,095 annually!
[www.metlife.com/WPSAssets/43838610601138293556V1F2005NHHCSurvey.pdf] page 4.
And I need to point out, we’re at the end of 2006…
We’ve written to the Alzheimer’s Association, we’ve given them the current stats, they don’t update their information. After two months, I’m left with no choice but to wonder why a group as prestigious as the Alzheimer’s Association would want the world to believe the cost of “average” long term care is HALF what it actually is?
In my humble opinion, the reason why Congress isn’t looking at the fact an “average” nursing home costs over $74,000 per year may be because, quite literally, their looking at “facts” that state its only $42,000 per year.
When my father was ill we turned to the web for info. The Alzheimer’s Association was my first stop and for years I never questioned what I read. But my experience, over the course of eleven years, taught me to be very, very wary of anyone calling themselves an “expert” on Alzheimer’s. My experience told me to check the numbers. And when I did, I learned a lot more than I wanted to.
I believe there will be insufficient funding for Alzheimer’s disease because their is an equally insufficient sense of urgency. We are living with projected numbers that are outdated, inaccurate and false. There is real danger in that. Not just to each of us trying to care for our individual parents, but for our country as a whole. Our parents are getting clobbered by this disease - over 4.5 million people - and what it’s costing us for care is being reported as HALF what it actually is. Why. Is. That.
My suggestion is to write your Senator and make sure Congress has the correct numbers. Anyone else have any ideas?
Patty
November 27th, 2006 at 7:24 pm
Deb, thanks for this thoughtful post. I think until dementia patients and their caregivers are more visible, there will be no sense of urgency. Could dementia patients and their caregivers stage “sit-ins”? For obvious reasons, many people with dementia can’t travel. But it would be interesting if we could get even 50% of caregivers and people with dementia in a given congressional district or small town (hey Patty, how about Palm Beach Gardens?) to gather outside the office of their U.S. representative for a couple of hours one day. If this were repeated around the country, I think the level of urgency would rise.
November 27th, 2006 at 8:32 pm
Hi, Deb–
I could SO SO identify with what you wrote about your Mom’s hospital stay. My Dad was hospitalized for a wandering incident which caused hypothermia last winter. During the course of the week, he pulled out two catheters (OUCH) and numerous IV’s. Their solution: tie him down. Keep in mind the catheter was unnecessary–reason given, “unsteady on feet (!?). Dad was kept so medicated he was practically comatose. After a week stay, the nurse announced he would be discharged that day to a “long term” care facility. My brother, an attorney, informed them it was illegal to discharge without 24 hours notice to the family and their tune changed. However, they said he would need a nursing home because he couldn’t walk. I asked them how they knew he couldn’t walk. He could walk when he came in! We insisted a physical therapist evaluate him. She gave him a couple nudges and said he couldn’t be awakened. I started shaking him, begging him to wake up. In a panic I practically forced him to sit up. Within minutes he was walking down the hall, with all medical in total amazement (or were they?) We knew Dad would be disoriented in a nursing home, so we bucked the system and took him back to his independent living apartment with 24 hour hired care. Within a few days, he was totally recuped. And they were insisting he needed to be in a nursing home. Your experience with your mom’s hospitalization and their unwillingness to acknowledge the temporary delirium really struck a nerve with me. What do the folks without advocates DO????
I don’t know much about the financial end of things either. I appreciate the wealth of information I’m getting from you Deb. Hang in there. I’m glad you’re feeling better. Laurie
November 27th, 2006 at 9:55 pm
Well, how about this idea?
Let’s call for a “National Day of Respite Care.” Our Senators would all support that, right? Here! Here! Respite Care! Alzheimer’s what a shame. Damn shame. Here! Here!
And in honor of our 50 Senators who are - each and every one - strong advocates for the elderly, we will give each and every one of them a special, individualized Alzheimer’s Award - as unique as they are. Their Grand Respite Award? A full “day” with our Alzheimer parent! And off the bus will come 50 Alzheimer’s couples - parent and child, hand in hand.
Senator Obama, meet my mother Florence, she hates door bells and can’t eat without having the TV on and then off and then on again. Other than that, she’s a piece of cake. Senator McCain, meet my father Bob, he’s sweet as can be but may swing at you for no reason. Don’t take it personally, just be prepared to duck. Senator Clinton, meet Charlotte, she’s fine as long as she can walk and walk and walk. Just don’t take your eyes off her for a second or she’ll be gone! Senator Klein, meet Richard, he will only nap with his shoes on. And nothing but his shoes on.
And one by one, we place our parents’ hands in theirs. And we leave.
It’s kind of like a sit-in, only we don’t have to sit there. We can go lay down under a tree, enjoy having a day off and understand America is great because not only can we imagine doing something like that, we actually can imagine DOING something like that!
Volunteers?
Patty
November 27th, 2006 at 10:22 pm
AMEN sister! My family’s experience is that my Mom was admitted to psychiatric hospital after becoming dangerously combative. The first words out of hospital social worker’s mouth: What is your choice of nursing home to release her to. No way I said - one big reason she is here is to stabilize so she can be accepted at our choice of assisted living Alz unit. No way she can be released to assisted living she said. She EVEN then put the paper in front of me to sign to ok release when time came to a nearby nursing home! I just looked at her and walked out. Called the assisted living facility. Their nurse called the hospital. Two weeks later my Mom was calmer and more at peace than we had seen her for many months. The assisted living facility took care of her release and even transported her in their van to her new home. Our experience was a concerned doctor at the hospital that methodically and with good success adjusted her meds and a healthy, stimulating, safe, and caring enviroment for Mom at the assisted living unit where the people not only take good care of her but her entire family. I’m ready to play whatever part I can in trying to bring about a change. Maybe a mass and public “encouragement” to the Alzheimer’s Association to be good stewards of what they are supposed to represent? Thanks Deb you sure know how to rally the troops! Pam