CARING FOR THE CAREGIVER

My Spring visit to the inimitable Doctor Amos Shirman provided a wake-call. I'm pretty much back to where I was last Spring, health wise. And I was doing so well before Mom's fall last Fall! As Doctor Shirman pointed out I haven't been taking very good care of the caregiver. Stress, worry, and lots of comfort food has taken its toll. So the "Doctor Shirman's Orders" list has gone back up on the refrigerator door. No added salt, no butter, watch the red meat and cheese, pile on the veggies, get back to yoga class, drink lots of water, get more sleep. The usual.

He is right, of course, in getting tough with me. If I fall apart, who takes care of Mom? Which is more of an incentive than the fact that I'll be able to zip the jeans. Mom is doing pretty well now. She's been home almost three weeks and is getting around the house with her borrowed walker. Still pretty weak but gaining in strength every day. We have had a steady parade of physical therapists, occupational therapists, social workers and personal health care aids. It's gotten so that I really need a bigger calendar for all of her appointments! It is enough to wear out a pro football player.

Check out the photo of Mom and our friend Mary sitting down to St Patrick's Day supper. Hard to believe Mom was deathly ill a month ago. She's one tough cookie. That's how you get to 96.

Still, it would be short-sighted of me to think she won't need my assistance for the foreseeable future. It's easy doing your duty by someone who needs your help - not as easy to pay attention to your own needs. Women tend to think they are being selfish if they take time for themselves, are taught that they're a good mom or caregiver only if they sacrifice themselves. It's something we must get over. Martyrs by definition don't thrive - not to mention that no one likes being in the same room with their self-destructive behavior. I'm keeping that in mind as I round up a crew of "mom sitters" so I can get back to yoga class once in a while.

It's been a pleasant surprise how many resources are actually out there for caregivers. At first I was so totally overwhelmed, feeling that I was doomed to house arrest 24/7 while I looked after Mom. That was before the army of social workers began showing up at our house (Thanks Gerry, Stephanie, and Selena!). I learned there are many services that provide respite care - as well as support groups where caregivers may vent and regroup. Through Medicaid, Mom qualifies for household helpers who can spell me off a few times a week. Sure, I'd heard the horror stories about how Medicaid takes away your home etc. Happily those stories seem to be urban legends. Yes, if you have to go to a nursing home your assets are tapped after you die to repay the system for your care - but assisting you to stay in your own home is so much cheaper! Thus, the in-home care programs that cost the client little beyond, in some cases, an affordable co-pay. I'm beginning to believe I can do this without killing myself in the process. Who knew?

Oh, almost forgot to mention: the dandelions are up in the yard! Already harvested and ate the first "crop". Doctor Shirman would approve - they are wonderfully jam-packed with vitamins and minerals. Yum. Called my son Paul, inviting him for lunch. He had some sort of lame excuse why he couldn't make it. Go figure.

PENNY-WISE/POUND FOOLISH

Penny-wise/pound foolish - or how Medicare saves money by "losing" patients: Here's a sneaky little trick we discovered over the weekend. When a Medicare patient arrives at the E.R. they are given written notice (double-sided) of their rights to appeal should they believe they are being discharged too early. They must sign the notice acknowledging that they understand their rights. It is stated that you must appeal to the Quality Improvement Organization NO LATER than your "planned discharge date and before you leave the hospital". Once you are out the door you have no right to appeal. Sounds good? You have an option, right?

Here's how we discovered how underhanded, sneaky and downright criminal this system is: Friday night the doctor in charge of Mom's case told me that she had one more week left of her coverage (see previous post). Did that constitute a "planned discharge date"? Nope. Just a vague indication that she was going to be in the hospital maybe until the end of the week. The very next day, Saturday afternoon at 1 p.m. I get a call from a nameless person at the hospital informing me that Mom would be discharged at 2 p.m. and I was to come pick her up! One hour notice! On a Saturday when Medicare offices are not likely to be responding. The medical attendants had unplugged Mom from all the various devices, stripped her bed, put her in a wheel chair and fifteen minutes later we were virtually shooed out the door for home. So much for time to appeal her release!

Our tax dollars preserved at the expense of the people they are supposed to be helping. Hey, I'm as patriotic as they come (seven years in the United States Air Force has to count for something) but today I'm thoroughly ashamed of a few aspects of our so-called health care system - and I also feel a bit betrayed. May the morons who are dragging their feet instead of reforming the system live long enough to get thrown out of a hospital on one hour notice - and to make it even more fun may they be thrown out in the dead of night wearing only a backless hospital gown. That outta show um, don't you think????

Health care in America - Perhaps you've heard that it's in trouble, that we have the crappiest health care system of any industrialized nation. You might not believe that. You might point to all the amazing machines and wonder drugs that seem to be able to cure practically anything that can be thrown our way. Granted, we have made huge strides in curing all sorts of diseases and patching up the human body when it's broken. So what is there to complain about?????

Imagine that you are lucky enough to reach the ripe old age of 96. Imagine that you take a fall one morning as you come in with groceries. You end up in the hospital emergency room with broken bones. Not to worry, right? Doctors and nurses will rush to your aid. You've seen this on countless TV medical shows. You hardly ever miss an episode of House. You'll be just fine in no time. We have a fabulous health care system in this country.

Not so fast. From the moment you enter the system, the clock starts ticking. Your body had better get with the program or get left behind. You have a finite number of days to get back on your feet. If, heaven forbid, you get an infection or two along the way to slow down your recovery or your body just naturally heals more slowly you are in a world of hurt in more ways than one. Your Medicare rehab money runs out in 100 days. The day after the money runs out you are on the street whether you can walk or not.

Now imagine that you are home from rehab just two days when, your body already weakened, you develop a life-threatening infection? You find yourself back in the emergency room. And the clock starts ticking once more. You have exactly two weeks to get well. Nobody really cares if you are breathing well or can get out of bed or can recognize family members or eat without help. You will be sent home to live or die on your own at the end of two weeks.

Oh sure, there are options - if you have lots of money in your savings account. However, if all you have is a thousand-dollar a month Social Security check between you and starvation you are (pardon the expression) screwed. At 96 years of age you are sent home to fend for yourself.

This is what our so-called health care system is doing to people who never managed to become internet billionaires or Wall Street wizards. This is the fate of The Greatest Generation. And this is going to be your fate too unless something is done. You are one stumble over a door sill away from utter disaster and despair. This is you, wondering how you'll get up out of your bed to use the toilet. This is you, crying yourself into a fevered sleep. You, wondering how it came to this. How? After a long happy marriage, a life of hard work building a comfortable home and rearing your children in the American Dream here you are - a throw-away in the gears of a heartless and broken system.

If my mother lived in Sweden, England or Canada she could get the care she needs. As it is she'll have until next weekend to get well. Yesterday she had a small stroke as her attendants gave her a sponge bath. She was totally unresponsive when I arrived to help her with her breakfast. She couldn't talk, couldn't move. Never mind, her days at Highline Community Hospital are numbered. Literally. I have applied for Medicaid for her though I have no illusions the paper-pushers will treat her plight with any urgency.

I never imagined that this blog would become a soapbox but I'll tell you a story. I was a high school student the year the road in front of our house was scheduled to be straightened and paved. It was a cold, especially wet Fall. Half way through the project the road crew packed up their gear and left. They had already torn out the culvert through which our creek ran, cutting us off to the east. The road west was a muddy, churned-up construction site. I set off to meet the school bus one morning through a driving rain for the paved north/south road a half mile up the hill. Nearly to the road I slid knee deep into a sucking mud hole. I couldn't move. I clawed at the mud to get out, clawing for something solid. It was like glue, like quicksand. Eventually my younger brother found me and helped pull me free. That afternoon our mother tied a wool scarf over her hair, buttoned on her old farm coat and pulled on her "barn boots" - black knee-high rubber boots she wore where she went out to the barnyard to feed the cows. Mom trudged through the rain and mud to the main road where our old Ford was parked. She drove two hours of the state capital in Olympia, marched into the office of the highway department, trailing mud and water after her. She demanded to be heard. She told them they had nearly killed her daughter by abandoning us with no safe way out. She stood her ground and demanded that the state do its job. Two hours later when she returned home the machines were already back on our road. After that day whenever Mom took on a cause we would say that she was "pulling on her barn boots again". Oh how I wish I had a pair of barn boots that I could pull on this morning and march on "city hall" to save her from the terrible pit that is even now pulling her down! But I can't fix this alone. It's too big a mud hole for me to climb out without help.