Archive for the '(if) Elder (why) Care' category

Annals of Elder Care: The Joy of Power

For five years I served as my mother's financial power of attorney. She had some complicated finances, and some very complicated health issues. Anyone who has done elder care for five minutes knows that "complicated health issues" = mounds of paperwork and hours of time per week dealing with it.

When mired in the thick of elder care paperwork muck, few people have time or energy to seek out others dealing with similar issues. It's not like everyone gets together at the elder care park, letting their loved ones frolic on the swingsets and seesaws so that serious information sharing and necessary venting can take place. There's really no place where people charged with caring for ill or elderly loved ones can regularly gather, except the internet.

That's why I thought it would be worth sharing some of my experiences.

Today's topic is the The Joy of Power.

If you are FPOA for a loved one, you may find yourself in what I call a unicorn family - everyone gets along, each person does what they can, and everyone's highest concern, ever and always, is the good of the loved one.

Or you may find yourself in a, shall we say, more realistic situation. In non-unicorn cases, the FPOA is understood by some or all family members to be controlling, conniving, and deceitful, and robbing the loved one blind. In short, their absolute power has corrupted them absolutely. Sadly, in far too many cases, something like this does happen. I have seen a son rob his mother of nearly everything, leaving her destitute and malnourished (while calling in bomb threats to the local school in his spare time).  I have seen cases where siblings are denied medical information about a parent by sibling(s) in control, who then feed the parent stories about how and why the denied siblings are evil. I have seen a child trash a parent's house, be evicted, and return to do it again. Money makes people crazy. The very wealthy are not exempt - Donald Trump, for example, once cut off health care for a sick child - his grandnephew - because the child's family contested Donald's daddy's will.

But in most cases, the FPOA is just a blindfolded donkey turning the millstone, taking the wheat of conflicting paperwork and grinding out the flour of financial stability, often as not with one or more family members pulling the cord tied to the mouth, the better to keep the FPOA turning in his or her tracks.* Jesus said of little children "But whoso shall offend one of these little ones which believe in me, it were better for him that a millstone were hanged about his neck, and that he were drowned in the depth of the sea." Taking to the waters with a millstone necklace often seems preferable to continuing in the traces. But escape leaves the loved one behind.

Here's a fun memory from my time in the traces that illustrates just how delightful it is to wield all that "power" of the FPOA.

In October of 2011, a collections agency sent a threatening letter demanding immediate payment for an overdue bill for my mom's visit to a doctor at a local clinic in June of 2011. Although the visit was for mom, the collections agency threatened me (and thus my credit rating).  I spent half an hour combing through old explanation of benefit forms, and two hours on the phone with Medicare and Blue Cross to determine that the bill had actually been paid and when it had been paid. The next day I spent half an hour on the phone with the collection agency who demanded physical proof in the form of faxed copies of documents from Medicare and Blue Cross stating that they had actually paid the bill. They demanded this proof by the next day.

A special sweet irony of the whole mess is that the person at the collections agency initially refused to talk to me because even though I was mom's POA, and even though the collections letter was addressed to me and even though it was my credit rating that was at stake, and even though they were trying to get the money out of me, the medical appointment was for mom and so they didn't want to discuss the issue with me because of "privacy issues".

I spent fifteen minutes trying to figure out how to get to speak to a person, not voice mail, at the clinic’s billing department to find out why they turned a paid bill over to collections and how to get this undone.  I finally got a helpful person who promised to undo the mistake and who caught another one that was about to be sent off to collections.  Someone submits a bill with incorrect coding, it comes back from insurance unpaid because of the error, and then someone in billing sees the bill is unpaid and sends it off to collections rather than fixing the error.  So it is probably more rather than less likely that you will be dealing with this scenario in the future, if you are so lucky as the be the donkey FPOA.  The person at the clinic offered to call collections and send them documentation and I planned to check in again later to see that things had been resolved, after I received copies of everything from the helpful clinic billing person. This all took another half hour to 45 minutes. At that point, I just assumed, till I knew for sure, that I was not yet done with the issue.

If you are keeping track, that is nearly four hours of time (not counting time out for cursing and despair) on ONE issue, that may or may not have been resolved. (Luckily for me, that was the end of the story.) When I worked in pharma, at one company we tracked our time in 15 minute billable units. Alas, there was no billing code for my four hours of labor, and so my end of the week timesheet in that system would have shown ten percent unbillable hours, which is the same as not working in the business world, and I would have been on the edge of reprimand.

I do not know how people with full time jobs outside of being a FPOA manage to get all this sort of thing done. When feminists and economists talk about the unpaid labor of women, it is precisely this sort of thing they have in mind. Mind you, the 45 minutes the clinic billing person spent on the phone with me resolving this issue, plus whatever time she spent after we got off the phone, was paid but unproductive labor. No one’s unpaid bills got paid, no one’s health care status was advanced, nothing was achieved but once more subverting the malicious effects of an avaricious, antagonistic, and ill-designed health care system.

If you are FPOA donkey, turning in your traces, grinding the most illogical paperwork nightmares ever conceived into dust, day after day, I salute you.

*I thank Country Life (The Journal for All Interested in Country Life and Country Pursuits), Vol 24, Oct. 17, 1908 p. 515, for the anecdote that inspired my FPOA-donkey metaphor.

5 responses so far

Shredding Event

Some few weeks ago my township held a semi-annual "shredding event", an occasion for citizens to bring forth their accumulated piles of dossiers and documents to be fed into a giant communal shredder, lest our identities be filched and/or days of our lives given over to feeding two sheets of paper at a time into our home shredders.

This was my pile:

To be shredded...

To be shredded...

It might have been much bigger but that was all I could part with at the time.

The pile contained all the Medicare statements and Blue Cross EOB forms I had received for my mother during the time I was her power of attorney. I held on to these until her estate was closed and we were sure all outstanding issues and bills were resolved. It has been many months since the estate closed and I have no further legal need of these documents. But I found it surprisingly hard to let them go.

I browsed through them and their listings of date of service, provider, and service provided. I remembered many of these "services provided", some quite vividly. There were routine doctor visits on which I had accompanied her. There were the "pain shots", the epidural steroids to relieve the pain of her spinal stenosis. Organizing those was like planning the invasion of Normandy, given the astonishing difficulty in communicating with the doctor's office; the need to coordinate scheduling with availability of someone to take her there; and the trickiness of managing all this for someone taking coumadin.  There were the ER visits for falls and other minor emergencies. There was the mountainous paper trail generated near the end, when she bounced from assisted living to hospital to rehab hospital to nursing home and back around till the final bounce home to die. Sometimes I looked at dates and events in disbelief: did that really happen then? so close to the time she died? did all those things really happen so close to one another? Or, oh my god I totally forgot about THAT! How strange, I thought, that these impersonal medical records hold memories of my mother I'm struggling to piece together.

When my father died (young, in his fifties), my mother was devastated. She could not bear the idea that he would go underground. When my brother died, eight months before my mother, we helped her to her feet beside his coffin in the funeral home for the "last goodbye". Though she could barely stand she kind of launched herself at him, weeping over his dead form and declaring "oh Paul, it won't be long, I'll be coming after you." She did not want him to go underground, either.

When she lay dying at home, mostly robbed of speech, she communicated to me one day with great difficulty: "I'm afraid to go in the ground." I don't remember what I said to comfort her beyond "I know" and "I'm sorry" and maybe the pitiful "it will be okay".  I don't know why I didn't ask her why this fear was so strong. Lifelong devout Catholic, each Sunday at Mass she recited "I believe in...the resurrection of the body and life everlasting" and yet in the face of death it appeared this was cold comfort. When her youngest brother, the one she raised from age seven, died before her and was cremated, she did not like that any better. She fretted over how his body would be resurrected at the end of the world. I tried to assure her that if God could do anything, He could surely put her brother's ashes back together in the form of his body. She remained unconvinced.

When she died it was some time before I could leave her side. This parting, unlike every one before it, would not be followed by seeing her smile yet one more time.

I believed I was relatively blasé about the subject of corpses and what should be done with them; I often told Mr. Z he should have mine turned into compost for my garden. At the funeral home, it did not seem to me as if it were her lying there. In the bustle at the house the morning after her death, we could not find her glasses. Lying there without them, that face could have been a wax doll.

And then at the cemetery, the graveside service ended, I wept the tears of a motherless child. I did not want to leave. I knew they would put her in the ground when we left. And she did not want that. It did not matter that she was beyond wanting. Finally, my younger sister said through her sobs and tears, "We have to let her go. Come on. We have to let her go." It was like breaking a spell; her words gave me permission to leave. I let her go, I let her go underground.

A week or so after the funeral my younger sister and I both had the same experience. It was a physical sensation of lightening, as if someone had just removed a very heavy backback from our shoulders. It was not just a mental uplift; we were both still very sad, and actually perplexed by the physical sensation. It was very distinct, and strong. I can only describe it thus: it felt as if I had been literally carrying something on my shoulders, and someone had lifted it off of me. Not that I had set it down, but that the weight had been lifted off me. I had a constant feeling of that sudden lightening for about two weeks. My sister, the same.

I also quit having migraines for three months. My doctors thought that it was the reduction in stress that allowed me to stop having migraines, but I didn't think so. (For one thing, I still had all my worries about my in-laws, and while I no longer had power-of-attorney duties, I now had executor duties for the estate.) I felt that my body chemistry had been altered by grief. I felt that my body was so physically preoccupied with the sensations of grief and loss, that it had no resources, so to speak, to devote to experiencing migraines. In this way, it was similar to the period just after I had my stroke, when I was almost completely blind. I had no migraines then, either. They did not come back until my sight recovered to the point where the place in my visual field where auras formed was functioning again. After my mother's death, my migraines did not come back until I was no longer completely blinded by grief to the world around me.

Time heals all wounds, as they say, whether you want it to or not. Eventually grief lessens, the sharpness of pain dulls, the loved one recedes into memory, which is unreliable, and must be pieced together through written records and conversations with others. Sending the medical records to the shredder was sending a pile of recorded memory to oblivion. If memory is all that is left, how can we bear to part with even one tiny morsel, no matter how bitter its taste? And yet doctor's appointments and ER visits are memories perhaps not worth savoring. There are so many, they dull the taste of anything sweeter.

I gave my folders to the township for shredding. I let them go. Death is cold, the ground dark and silent, but I remember warm evenings at dinner with mom, in the summer at Apple Annie's in Point Marion, the two of us talking, and her smile.

mom apple annies [640x480]

3 responses so far

Makeshift Memorial

Feb 18 2015 Published by under (if) Elder (why) Care, Tales From The Coal Patch

When my siblings and I were young, my parents frequently took us to the cemetery to visit the grave of my mother's mother. I never knew her, but I knew how much my mother and Pappap had loved her. I could see how sad it made my mother each time we went. As a small child, I felt bad for my mother, but it had nothing to do with me. I did not imagine myself one day standing there as she did, at the place where we had cast her underground, lost and weeping.

One may visit a cemetery at any time, but certain proper times impel one's presence graveside: the days of a loved one's birth and death; Christmas and Easter; Memorial Day. Unhappily for me, my mother's birth and death dates are in December and February. The six-hour drive to the cemetery at these times is a dicey proposition.

This past Sunday, February 15th, was the second anniversary of my mother's death. We are in the middle of an arctic freeze, with frequent bouts of snow, freezing rain, 40 mph winds, and sub-zero wind chills. With the anniversary occurring on a Sunday, it seemed attendance at Mass would be a good form of remembrance. I would recite the familiar prayers, and at the end of the service, I would light a candle for mom - near a statue of Mary, if possible.

My mother, a devout Catholic, was very devoted to the rosary and the Virgin Mary. She was always "bending Mary's ear" about a cause in need of Mary's succor, whether it be restoration of the health of a sick grandchild or a conversion of non-recyclers to less earth-ruinous ways of living. It grieved my mother deeply that I had fallen away from church-going. For my part I found it simultaneously amusing, annoying, and touching to learn she had taken to lighting three candles whenever she went to a church. Whether at weekly Mass at her home church, or in other churches while traveling or visiting, the votive candles were regularly lit for my father, my brother, and me. My father was dead, so his candle was to help him get out of purgatory and into heaven. My brother was confined to a nursing home ever since a botched surgery at age 17, so his candle was for his health (and a miracle, if God would so please). My candle was to bring me back to the faith.

When I was very young, I believed that the lighting of votive candles had a magic power. The very candle itself sent up a mystic message via flame and smoke straight to God, who would see the burning candle and think favorably upon its associated prayer. You didn't burn a candle for trivial things, like winning a ballgame, or evil things, like causing harm to one's enemy. You burned them to ask for intercession in someone's misery. Heal the sick and suffering. Lift the souls in Purgatory into Heaven. Guide the lost sheep back into the fold. That sort of thing.

I don't know if my mother believed literally in the power of the candles but she did believe that in some way lighting one focused and amplified her prayer. She always, if possible, chose to light her candles on the side of the church where the statue of Mary was. Mary had been a mother. Mary understood the sufferings and special sorrows of a mother's heart. Mary was the right one to chat with, when you wanted something important relayed to God, to make sure He would get it. You know, really get it.

People without religious faith can still benefit from ritual. Since I have not yet managed to create my own set of deeply meaningful memorial rituals, and couldn't make it to the cemetery, I thought it was worth giving the Mass and the votive candle a chance.

I found a local Catholic church that seemed perfect. Catholic churches usually bear a saint's name. My hometown church was St. Ignatius of Antioch. St. Peter, St. Michael the Archangel, St Patrick's are all common; there are a lot of Sacred Hearts and Holy Family parishes, too. But the one I found was called Queen of Peace. It was a church dedicated to Mary! It was a good sign! I planned to go.

Then the butt-chappingly cold weather got even more butt-chapping, and it snowed again, and the dire newscasters warned against going out lest ye be frostbitten and die, and the winds blew a steeple off a church in a town nearby.

I stayed home.

But I didn't feel good about it.

My dear friend and neighbor then suggested, why not burn a Yahrzeit candle at home? Better than trundling off to church to light a candle I wouldn't see again after I left the building anyway! Great idea!

Scrounging around the house, I could not find any nice pillar candles, and for sure nothing that would burn 24 hours. What I did have, though, were "purification candles". These I had found and brought home with me during one of the marathon sessions of cleaning out mom's house. Purification candles are blessed (and sometimes lit) on Candlemas, the 40th day after Christmas. On that day Mary took Jesus to be presented at the temple (and to be purified for her birth-giving uncleanliness, bla bla, patriarchal religion, bla bla). All good Catholics keep some blessed purification candles on hand at home for when the priest comes by to bless and anoint a dying person. Blessed candles can be lit when someone is sick, in a sort of bedside vigil  and prayer for returned health. Or, as in olden days, they can be lit as protection against the (literal) wolves in the forest. They are quite versatile.

I had a candle, noow I needed a holder. DIYers on the internet suggested using a small jar filled with sand. No appropriate-sized jar was to be found, but I did have the perfect mug - a plain white mug my father used to drink his coffee. (My younger sister remembers once as she watched him drink it black, before going out on midnight shift at the coal mine, asking him if he didn't want milk. "The first cup's purely medicinal" came the reply from a man who could not truly be called "awake" at that point.)

Candle, mug - but I had no sand.  Searching my cupboard I ran across some years-out-of-date Minute Tapioca. Kinda sandy-like texture. I lit the candle, dripped some wax in the bottom of the mug, and held the candle in the wax till it was steady. Then I filled the cup halfway with Minute Tapioca around the candle, to catch the dripping wax. For some decoration, I taped the remains of a refrigerator magnet (sans magnet) on the side of the mug. It was a miniature straw hat with pink roses I had bought for my mother when we went to a ramp festival in western Pennsylvania. She had liked the little hat, and pink roses were her favorite. It was perfect.

Makeshift Yahrzeit Candle

Makeshift Yahrzeit Candle

It was early afternoon when I lit the candle (not sundown, as one more properly does). The ersatz Yahrzeit burned quite a long time. I carried it around the house with me wherever I went. I felt very happy about it. At one point while walking up the stairs and shielding the flame, I though of my mother very intensely. It felt to my non-spiritual self like her spirit was with me in some sense.

Later on I noticed that the flame was now level with the rim of the cup. What was of course obvious from the beginning of this candle venture now hit me with all the force of a grief born anew: the flame would burn out. Stricken, I turned to Mr. Z with this obvious and tragic observation, and I wept.

We talked for a little while about my mother and her life, how much we loved her, how much we miss her, and the examples of her life we wish to embrace. It was good to have those moments to feel and share the sadness, and to speak affectionately of mom.

The candle lasted awhile longer. I kept it near me. Eventually the little hat fell off the side of the cup, and though I tried once or twice to press it back on its sticky tape, it just wouldn't stay. Soon the flame was down to a mere wisp which licked at the wax that had earlier dripped onto the Minute Tapioca. As this wax burned and flared, some of the tapioca burned, too, giving off a scent of burnt marshmallow, and leaving a burnt-marshmallow-type ring around the guttering flame.

 

candle1

Little flame, with burnt tapioca

 

 

The aroma reminded me of family camping trips when we were all young, roasting marshmallows around the campfire, mom at the wooden picnic table laying out the graham crackers and Hershey's squares in readiness for our burnt sugar fluff sagging off our campfire forks.

Even in those last few moments when the little flame was almost nothing to be seen, it gave me something.

And then it just...went out.

I looked at the clock and by pure accident, the flame had gone out at just about the time in early evening when mom drew her last breath.

8 responses so far

The Die Is Cast

Last night was it. After an attempt to file but dimly viewed nails, I asked Mr. Z for a pair of his reading glasses. Donning them I saw the world anew. Oh yes, the nails came into sharper focus; it was a delight to see them clearly, and a surprise at just how much I'd not been seeing. What I really saw, however, was my future of increasing disability.

I've been in denial about how difficult it's become to read my iPhone, how often and how much I have to blow up the screen, how very preferable the iPad has become. No more. My near vision sucks. It's going to get worse. I will one day be as my elders are now: happy youngsters will show me blurry screens of what they say are pictures of their cat; I will nod, smile, say yes I see.  The youngsters will know my vision is bad, but they won't know it, not really. I'll know they mean well and want to include me, and that's why I'll smile. That is, if there are any youngsters who come around when I'm elder. I don't kid myself. I don't have kids.  No kidding. The youngsters, if there are any, will be full of well-meant advice, and I will tell them I don't hear that.

We know what's coming, even as we work out at the gym, we aren't stupid. Unless there's an accident or a terrible illness like cancer, death creeps our way slowly. We make jokes about the reading glass harbinger at restaurants with our friends. We ask our partner to crank the volume on Alex Trebek - and wonder why everyone is mumbling. We dutifully remove treacherous throw rugs, install night lights all over the house, grab a cane for outdoor strolls (and then indoor ones too). We put in grab bars, high-seat toilets, convert to walk-in showers with shower chairs, all on the first floor.

We sell the house and move into a two-bedroom one story condo with a patio and outside maintenance provided, become best friends with the nurses at the clinic and the ER and the technicians at Quest, and upgrade to a walker. We become fond of ramps, acquire a handicap parking pass, complain about the lighting and noise in restaurants. (But not at Eat-n-Park, where the coffee is always just right.)  We upgrade to a better walker, add in a transfer chair, and turn in the car keys (some of us more some of us less reluctantly). We depend increasingly upon our children or the kindness of strangers and home health aides to supply us with Turkey Hill Lemonade Tea. Glasses and dishes and silverware grow so heavy, but we don't have much of an appetite anymore anyway. Our pillbox metastasizes from a discreet manageable one-compartment per day to a giant gargoyle garishly color-coded for morning/noon/dinner/night, permanently perched on the kitchen counter, filled (more or less accurately) by the visiting nurse.

We stay home/move in with a child/go to assisted living and we fall and break a bone/we bleed out from coumadin/we get recurrent resistant UTIs and we get pneumonia/have a stroke/become dehydrated and we die.

Mix and match as preferred, feel free to combine as you like, all permutations are allowed. Eventually, all roads this side of the Rubicon will lead to Rome.

The way that you can know all of this, know it casually from reading or intensely from up-close personal experience, and go on living, the reason you don't start haunting the Hemlock Society website, is cognitive dissonance. You think "eh, there's no good way to go, but I can make it another year, plenty of time for that, and maybe I'll go out with a heart attack in the middle of the night when I'm 80 and still kinda strong" and THEN you fall and break your hip.  Now you aren't strong and well enough to do anything about it. Welcome to the rehab hospital. The rehab hospital is where you go to be helped to be a little less debilitated before you die.

A few weeks ago we were visiting one of our elders at a rehab hospital. At one point I took a break to sit outside - there were some lovely rockers on the "porch", the covered front entrance area, and the sun was shining. A woman older than me, younger than rehab, sat in an adjacent rocker. She was visiting with her friend who sat in a wheelchair bemoaning her condition. The visiting woman offered up the following in a very soothing voice: "Well it comes to everyone eventually, though we never think it will, we think we'll always be young and strong, but it comes to all of us, it will come to me too one day. I think 'I'm always going to be just like this' but I won't, it will come to me too." But the older lady in the wheelchair was not much consoled. Because she doesn't have access to the cognitive dissonance anymore.

Of course, there are plenty of examples of people who live into a ripe old age retaining their wits and vigor, caring for themselves at home, until they die peacefully in their sleep. You could be one of them. Or you could be poor, in which case you will probably die sooner and younger, because you won't have access to as much elaborate health care to prop up your failing body.

If you are not poor, if you are blessed with the resources, I suggest using some of them not for elaborate healthcare but to talk with a doctor or someone trained in elder care about end-of-life planning. I mean a serious and sustained conversation, not a brief chat. In another post I will talk about some things you might like to discuss during such a conversation.

Do not despair! You are young and likely don't even need reading glasses yet! Possibly you even hope to have your oceanfront home drowned by the rising oceans before any of this stuff I'm talking about comes to you!

The fear of death and disability, and the fear of talking about them, is not helpful. Not thinking about these things now means it's much more likely that you could end up in a situation you don't want to be in - experiencing poor quality of life that goes on for years long after you can have any real say over what is done to and for you. I do not mean just in the case of being kept alive by machines. This is what I'll talk about in another post.

5 responses so far

Spousal Support Part 2

It was last weekend I decided the grease-stained stainless steel tea kettle with the half-missing whistle spout had reach the unbearably uncleanable stage. "It's time to throw this out and buy a new one!" I said. Mr. Z agreed. "I'm going to buy a new one this afternoon!" I declared as I tossed the old one in the trash.

A few moments later Mr. Z said, "When are you going to get a new tea kettle?" He sounded kind of uneasy.

"In a few hours, when I go out to get the lemons. The Giant Box Housegoods store is in the same plaza as the grocery store."

"Maybe you should keep the old one for now, until you get the new one," he suggested.

"Why on earth would I keep that disgusting tea kettle for two more hours when I am going right out to get a new one?"

He hesitated. "Well...that's a lot of time between now and then. Anything could happen. You could have a migraine by then and not be able to go." Pause. "That's just how I think these days."

My heart broke with love and sadness. I said, "It makes me feel really loved to know that you would worry about me. But I feel so bad to know that you worry so much that you feel like that. I don't want to be a burden to you." I said, "If I have a migraine and can't get the tea kettle, we'll boil water in a pot on the stove. We'll boil water in the microwave. We'll manage. It's summer and we aren't drinking tea much anyway."

Dear reader, I was trying to tell him I can still cope with life even if, even when, the migraine strikes. But he knows I can't cope as well. And despite the neurologist's assurance that with ten years past, my stroke risk is just the same as any other woman my age, he sees every migraine as the terrifying potential prelude to another stroke.

Right now there are Things going on, Serious Things, with his parents, and that seems to keep changing every day. The ground underfoot is shifting, uneven, treacherous. He wants to be able to count on me going out to buy the teapot. But he can't. And neither can I, truly. The migraines have been a little worse lately. Chocolate is still my friend, but it seems peanuts, bananas, yogurt, and milk have deserted me. (But not raw onion! I can still eat raw onion! At least the scallions.) Either that, or there's a med that still needs some adjusting. I'm crossing my fingers for the med.

Right now he needs my support as much as I ever needed his. He's not a talker; what he needs is as much stability and sense of homey-ness, calm and order in our house that can be provided. He knows I hide headaches from him so as not to worry about him. So every time I'm in the bathroom if he thinks he hears a pill bottle he interrogates me: do I have a headache? what am I taking? shouldn't I go lay down? Meanwhile I know he hides a lot of the news about the Serious Things so as not to distress me any more (because I have my own family things, and lost a brother and mother in the past two years, and then just this past month my mother's sister passed.) So every time he goes outside to talk on the cell phone I think it's his sister, and more bad news, and I worry about extreme scenarios, but don't ask, because he's not a talker, and I don't want to make him talk if he doesn't want to.

He says I do a lot to help him, but because none of what I do that helps him is what I would want done for me, I feel like I'm doing nothing. And I don't know what I'd do without him, but because he can't magically prevent or stop my migraines, he often feels he is not doing anything of value for me.

If you are a talker, say thanks to your spouse for the support. If you are a doer, do something to show your thanks.

If you are in a talker/doer relationship: talkers, please try to recognize what the doers are saying with their doing; doers, please try to understand what the talkers need to do with their talking.

In the advanced talker/doer relationship, doers can endure and even start small conversations with their talker, and talkers can learn silence and the value  of "now" for getting around to that Thing That Needs Doing.

6 responses so far

Things That Keep Me From Blogging

Disorganization. Procrastination. Endless estate paperwork and ensuing depression.

Trips back to western PA to empty out the house, and ensuing depression. Knowing the house is finally empty, putting it on the market, selling it two days later, and ensuing depression.

Sunday evening making a cake while dreaming about renovating my ugly kitchen when suddenly the power goes out because the electric panel died, 24 hours before a planned trip so hello emergency electrician, goodbye 10% reno budget...and cue ensuing depression. While a supposed-to-be vacation week is suddenly and terrifyingly made a visit-to-the-hospital week, returning home with worry worry worry on the mind, and ensuing depression.

A garden that was the source of pleasure and rejuvenation now overrun with weeds, baked dry as a bone, plants dying or suffering powdery mildew - in just one week! - looking like an eyesore and a hopeless chore, and ensuing depression.

Some hours on the phone for a $$$ doctor's bill the insurance won't pay, for the same test they paid for a month prior, submitted with an incorrect procedure code, impossible! for the aggressive billing office to deal with in any way, and ensuing depression.

No thing is unbearable, but everything is. No thing is impossible to deal with, but everything is difficult and draining and filled with despair.

No thing keeps me from blogging, but everything does.

7 responses so far

I Held You In My Arms As You Once Held Me In Yours

This is something I wrote three years ago but never posted. I decided to share it because mom is on my mind, and because I want to encourage those of you involved in elder care to consider keeping a journal. I did write some during my years caring for mom, but not regularly, and not nearly enough. I wish I could have all my time with her back in writing. Here is one bit I did capture.

 

You'd been mentioning the arboretum during our phone calls, and on my last few visits.  What could you be talking about, where might it be?  An arboretum, right there in the city?  You said we went to it years ago, as Girl Scouts, when you were a troop leader. The woman from our town who took us there pointed out the spring wild flowers.  Trilliums.  I didn't even know you knew what they were.  I had recently discovered them, through a garden excursion with my own local arboretum. And thought I was fancy for learning what you had long known.

But the arboretum.  Through the genius of google, I found it, right where you said it would be.  And I asked you if you wanted to go see it.  Yes.

We stopped by the woods on a sunny autumn afternoon.  The parking lot was empty.  I got your wheelchair out of the trunk and should have known right away I was attempting something that wasn't sensible, something too difficult, something downright dangerous.  The handicapped parking spot was the only thing about the arboretum that was accessible.  Between the parking lot and the arboretum path there was a step - a small step, to be sure, but still a step.  I didn't notice then how the pavement sloped a little downwards there, too.  Nevertheless, you wanted, and I wanted for you.

I placed the wheelchair on the path, and helped you manage the few paces from the car to the chair - including that small step down.  Not bad.  The path itself was gravel - not great, but I managed.  We rolled back and forth only a short distance, as the path quickly sloped downwards at either end. As stupid as I was that day, I wasn't stupid enough to push you in a wheelchair downhill on a gravel path.

We admired what trees we could see, read what signs and markers there were to be read, and then returned to the path entrance.  And the little step, and that - oh, now I see it - sloping pavement.  How in the world am I going to get you back into the safety of the car?

I brought the chair close to the step and locked the wheels, and helped you stand up.  But that easy step up for me, from the level surface to the mildly sloping pavement, was for you a step onto a looming incline - you, with your weak legs, poor balance, and no handrails in sight.  "I'm going to fall, I'm going to fall!" you cried out.

"No, no, you aren't!"  I wrapped you in my arms and by sheer will alone I held you up.  By all the laws of physics you should have been lying on the rough asphalt with a broken hip, autumn leaves plastered to a bloodied skull.  Those are the images that flashed through my terrified brain as I steadied you, calmed you, helped you move slowly to the safety of the car just those few paces away. "How did she die?" someone murmurs at the funeral home.  "Oh, it was the daughter's fault.  Knocked her down on some godforsaken parking lot pavement and bashed her skull in." But you did not die, and we both live to drive off for dinner with your sister.

While I held you and did not drop you, and vivid images of your death flashed in my mind, this also came to me.  There is a story of my infancy you have told me over and over and over again.  How, as a baby, I was colicky, and you walked the floors with me every night, trying to soothe and calm me.  How one night, holding me so long and so late, rocking back and forth from one foot to the other, so tired from all your labors of the day, you fell asleep standing up.  You woke up just in time to catch yourself from dropping me on the floor and falling on top of me.  I am certain, from the sheer number of retellings of this tale throughout my lifetime and the way you tell it, that images of my bashed and bloodied baby skull on the kitchen floor must have flashed through your terrified brain.

I want to give you all that will make you happy, just as you did for me, but my first job is to keep you safe, just as yours was for me.  I am not an overworked, sleep-deprived mother.  I should have known better than to try something crazy like an arboretum outing, and all on my own, too.  No one gave me a manual for this.

My arboretum's paths are paved. I could wheel you around the whole of it.  But you are not here. And it is not the one you remember, with the trilliums, when you were a Girl Scout leader, when your legs were strong, when I was a girl, when life stretched long before you, when a step was just something you stepped lightly over on your way to something else.

5 responses so far

Good Reads - Elder Care Edition

Mar 05 2014 Published by under (if) Elder (why) Care, Why Aren't You Reading This?

It struck me the other day that I now have a small and growing elder care section in my personal library. One or two of these books might be of interest mostly to people who may soon, are now, or have recently been involved in elder care but most are just good reads.

Up first are the two that are most targeted to "users" - those who are caregivers and family members of elders. Caring for Your Parents: The Complete Family Guide by Hugh Delehanty and Elinor Ginzler is published by the AARP. This is especially useful if you are just starting down the pathway of elder care, and/or if you and your siblings have never had any discussions with your parents and/or each other about how the parents will be cared for as they age and become more needy. Blessed is She: Elder Care - Women's Stories of Choice, Challenge, and Community by Nanette J. Davis combines statistics and analysis with excerpts from first-person narratives culled from interviews with 61 caregivers of varied ages and backgrounds. Those mired in caregiving will recognize themselves in many places, and may find much to comfort them here.

Knocking on Heaven's Door: The Path to a Better Way of Death by Katy Butler is both personal narrative and investigative reporting. She uses the story of her father and the pacemaker that kept him alive long past the time he wanted, and the quest to have it turned off, to explore the issues around aging, quality of life, and quality of death. I would recommend this to anyone.

In This Is the Story of a Happy Marriage by Ann Patchett you will find several essays about her grandmother and her dog. They are beautifully written; they will give you new perspectives on love, devotion, and loss; and I dare say they will comfort.

The Death Class: A True Story About Life by Erika Hayasaki is not about elder care per se, but it is about students, and their extraordinary teacher, learning how to live in the face of death. This one is a page-turner.

No More Words: A Journal of My Mother, Anne Morrow Lindbergh by Reeve Lindbergh is just what the title says. You could finish this book in a day or two with uninterrupted reading. But it is not lightweight. There is much to think about here. Anne Morrow Lindbergh was left debilitated and nearly wordless by a series of strokes, and her daughter Reeve writes about caring for her in the last year and a half of her life. It turns out that even the very well-to-do, with all the assistance one could want, suffer the guilt, anger, resentment, and despair elder care brings.

It seemed like everywhere I turned in these books, and often in life, people recommended or spoke of Buddhist philosophy and belief as helpful in negotiating life as a caregiver. One book I have not yet finished, but which came highly recommend to me, is Living Beautifully With Uncertainty and Change by Pema Chodron. Elder care is nothing if not packed to the rafters with uncertainty and change, so maybe this is as good a guide as anything the AARP can tell you about navigating the Medicare maze.

Two novels I'll add to the list and be done: Emily, Alone by Stewart O'Nan, which gives you the perspective of the elder facing life alone at home, companions and acquaintances passing away, children living far off. Wish You Were Here is sort of the prequel to this book and is just as wonderful.   These are two of the best novels I've read recently.

If you've read something along the lines of the category of this post, feel free to drop a note about it in the comments. I'd love to hear about it!

Comments are off for this post

No Going Back

Feb 28 2014 Published by under (if) Elder (why) Care, Daily Struggles

I have a good friend with some chronic health issues. Our lives are very different, but we have much in common. We talk about how losing a husband or a career changes your identity and understanding of yourself. How the responsibility for young children or elder care grinds at you, day by day. How illness turns what was once a pleasure into a source of dread.

We both had our social circles, liked to eat out. Then health issues made that impossibly difficult. At my worst point I stopped eating out altogether; she went down to two places whose food wouldn’t harm her. I have since been able to reintroduce many foods into my diet and can eat at a wider variety of places; she is still mostly limited to the two, so that’s where we go when we go somewhere.

We both know what it’s like to try explaining complex dietary restrictions. “Peanut allergy” and “gluten-free” are in the general public vocabulary, but “onions give me migraines” and “I’m eating raw or plain food” are not.  A few weeks ago we went to see a favorite band, had dinner at a nearby Asian restaurant. She asked for steamed vegetables and brown rice.  It was the work of several minutes to convey this as a serious request. Usually Asian restaurants are safe bets for her; everything is to hand and it’s no big deal to throw a few steamed veggies on a plate. Why it wasn’t this time, who knows.

And then there is the discomfort your dining partners experience. They will range widely across the menu and enjoy their meals with gusto. They can’t help it, and you don’t want them to. But it makes them feel bad, when they look at you. Sometimes your dining partners are not just discomfited, they’re angry. Why don’t you just try a little x? Are you sure you can’t eat it? Do you have to be so picky? It’s so difficult every time we go out to eat! Eventually you just stop going out to eat. Except to your two places, with the handful of people who understand.

We vent together  – food, our once taken-for-granted good health now gone, the responsibilities weighing us down, the isolation we experience. One day she said “People say when God closes a door he opens a window. I’ve been waiting for my window for a long time. I try to keep hopeful, but I just don’t see it. I just keep wondering, when am I ever going to get back to myself, back to [the person I was before marriage and children and divorce]?” Here, dear Reader, was the time to blow sunshine up her ass with a cheery “keep hopin’ on that window!” Or not. I chose not.

I said that some experiences we have change us so profoundly that there is no going back. That person is dead and gone. We are now some new version of ourselves, and it is not the person we were planning to be. The door was one-way.  The view from the window is strange. We can look over our past, and should be generous to the person in those memories. But we have to grapple with this and now. Quite often, it is not a lot of fun. Not that there isn’t fun to be had, but there is also the realization that life never lets up for one damn minute, till you’re dead.

Obviously a stroke, lost career, and years of severe migraines have had their effect. But it’s the past six years of elder care that beat a lot out of me.  I know elder care made me more aware of disability issues, even helping me see my own chronic illness in a stronger light. I know it made me value kindness more highly than ever. I know it gave me the gift of long hours spent with my mother and in-laws that would otherwise not have been. But I am also a duller, slower, person with an even narrower life than before.

I am slower in part because I am older – the difference between 45 and 51 is real and I feel it. The slowness is also because the work and stress and worry of the past six years tired me out. I am disinclined to work really hard at anything. I am hoping spring and the garden will have some reversal effect on that.

I am a duller person. It takes me longer to read. I can’t always follow what’s going on in a commercial – there’s a lot of flitting from one image to the next so fast a dull mind gets lost and quits.  I am more forgetful. I struggle more for the right word or name. Some of this is due to natural aging and the effect of menopause and also no doubt to the effect of so many different meds mixing in my body. But I know that part of it is due to the long, steady drain of elder care on my cognitive resources.

And my life is narrower. The intermittent but unpredictable debilitating migraines had taken away my work connections and most of my social life. We had moved from one state to another. The few friends I once had in this area had themselves moved away. Children and church are the two other main conduits to social interactions, and I had neither. I was just taking baby steps to build a social life for myself without the usual resources of work, family, and church, when elder care arrived on the scene. Elder care is a chronic unpredictable set of minor and major disasters plus daily repetitive tasks that are always urgent and never completed. It gradually swallowed up more and more of my time. It occupied my mental and emotional energy even when I wasn’t directly engaged with it. It became my new job, family, and church all in one – just without the social contact.

In this and now, life will still not let up for one damn moment on the slower, duller version of me. I am aware that, if I’m lucky, I have about thirty good years left. I would like my slow, dull ass to do the best it can with them. The view out my window right now is blank. Apparently tilling and planting of the earth are required of me, if I want to enjoy the view.

5 responses so far

Dogs Here and Gone

Feb 27 2014 Published by under (if) Elder (why) Care, Logos, Pathos, Ethos

When I was a very young girl, some thousands of years ago, one of my favorite books was Go Dog, Go! Each reading brought the measure of delight at the end, when at last the dog party commenced, and the boy dog finally admitted he liked the girl dog's hat. Today I'm wondering if the dog party isn't very much like what dog heaven would be, if there were a dog heaven. I hope so.

I am a cat lady, but in the past two months I have made the acquaintance of two dogs I rapidly came to like very much. And just as I settled them into my heart, I lost them. I grieved a little along with the authors, a perfect demonstration of the paradox of fiction. I had never met these dogs in real life, nor even their owners. But their death touched me, and I could sense the hole their loss would leave.

Brandy was a side-story that crept into one's heart slowly somewhat like the snail,  in The Sound of a Wild Snail Eating. She was the faithful companion of the long-suffering author Elisabeth Tova Bailey.  Rose I came to know more directly in the various essays wherein Ann Patchett recounts her life with that beloved dog in This Is The Story Of A Happy Marriage.  (I highly recommend both books, and suggest you order them from Parnassusbooks.net if you are not so fortunate as to have a local independent bookstore.)  I came to know about the death of each of these dogs, and now I want them each to be at the dog party. I want them to meet each other, Brandy sporting a most fabulous hat, Rose offering effusive praise, both of them heading for the wild dog tree party, finding their favorite foods, trading stories of their owners' lives.

In "On Responsibility", Ann Patchett writes:

Is is wrong to tell a story about your grandmother and your dog in which their characters become interchangeable?

and by the time the one finishes the essay, the reader concludes with the author that the answer is "no, and please give us more."

I do not believe in dog heaven, or regular heaven; but sometimes, I treasure a fond hope of my mother welcomed at the Pearly Gates by Jesus's open arms, reunited with my father and brother, with all the chocolate she ever wants to eat.

Comments are off for this post

Older posts »