June 26, 2016

The sun is up and shining, and is supposed to continue thus for at least a week.

I’ve spent the last two days mostly sleeping, trying to recover from Seattle. On the way home from the hospital, I got a text from my sister in Oregon. She said that she hoped they found something, so that they could fix me. I didn’t reply, I am at a loss to find anything to say that she won’t twist into some unintended meaning, although not answering at all may well accomplish the same thing. I’ve been a little surprised at myself, that I have been taking all of this so calmly, and I did not expect what happened next. It’s been as though all of the pain inflicted by our dilemma has been building up under the skin of my psyche, like a boil of blood and pus. For some reason, although it was probably well meant, her text stuck a pin in that boil, and it burst. Our debarkation from the ferry was greeted by sheets of rain, and my tears seemed to take their cue from them. The wish that someone fix her broken sister led my mind back to the worst of her accusations, a hurt so old and deep that I had nearly forgotten it.

One of the very worst experiences of my life happened when I was seventeen. We had been living in the mountains of southern Oregon, and by then I was the last kid left at home. My mom was working at the hospital in Klamath Falls, about an hour away-in good weather. In the winters, with snow, the commute was brutal for Mom to drive, and so for my junior and senior years she and I stayed in town. I had been going to school in Chiloquin, a predominately Native American school, where I believe my graduating class would have been around twenty-five students. For my last two years of school I attended Klamath Union HS, with a graduating class of over four hundred. I think that during summer break we all went back to Sprague River, but I can’t be sure. Anyway, Daddy wasn’t too keen on spending money for nine more months of rent, so in my senior year the decision was made to bring the cabover camper into town, and the three of us would live there, until I graduated. Three people living long winter months in some forty square feet of space is asking a lot, especially of a seventeen year old. My bed was where the table was during the day. The television sat at the foot of my bed, and my father would stay up late, watching. He would sit on the steps next to my bed, which led up to where he and Mom slept-drinking beer while I tried to sleep. I mostly tried my best to never be home except to sleep or change clothes. There was a subtle unease in our oh so cozy abode. My fathers alcoholism was in full swing by then, and he sat there and drank every day. I don’t know how long he had been having blackouts by then, but I am sure he had one on that fateful day.

When I got home from school one day, I knew it was a bad day the moment I opened the door. My father was sitting at the table in just his shorts even though there was snow outside, and had obviously been drinking for some time. Daddy was a melancholy drunk, and he seemed lost and lonely, so I stayed. It was a rare day when my dad would confide in me, and he was in the mood for confidences. He spoke of disappointments. He lamented that there was something that my mother wouldn’t do for him. He said that at one time he had hoped my sister could help him, but that hadn’t worked out. What he wanted was oral sex. I was shocked by his words, but the fact that my father was confiding in me held me there-until he took his limp, shrunken penis out of his shorts and left it there, lying on his leg. The man I saw that day was not my father. Not the one that I or anyone else in the family would recognize. The father and husband we knew had the highest moral standards. Standards so high that we could never hope to meet them. My sympathy soured to pity at the lost and pathetic picture before me, and I fled. I wandered the streets and neighborhoods of Klamath Falls, trying to sort out what had happened-nothing really, my mind said, leave it alone. Trying to see a way forward I felt guilty and soiled, nonetheless, as I wrestled with the fear that although nothing had really happened, there was a part of me that would have done it, wanted to do it, if it would earn my fathers approval. I believe that made me run as much as his lewd suggestion. My first instinct was to find my sister, who also lived in town. I don’t remember why, but she was not available. Although it was the last thing I wanted to do, I called my mother at the hospital and asked her to meet me at the Denny’s restaurant when her shift ended. Then I sat there, trapped in misery, waiting.

Telling my mother what had happened was the hardest thing I had ever had to do, at that point in my life. I knew that my father hadn’t been ‘himself’. But I feared that if it happened once it could happen again. What if next time I gave in? What would that make me? That tiny camper had become a pressure cooker that I didn’t want to return to. My mother was shocked, of course, but like I’ve said-she had also been around to see the worst effects of alcohol on him. Neither of us would have dreamed that of all things his alcoholism would bring him down to this level. In fairness, my mother took me to stay with a friend in Chiloquin for a few days, and she went back to my father to hash things out. My father was outraged, he told her he had no memory of the incident at all. I believe that. One of the hardest thing for me to deal with, even now, is knowing he went to his grave believing that I lied. He blacked it out completely. The very lowest point for me came when my mother came to take me back there, giving her husbands’ account more credence than mine. No one believed me, not at first. It was said, among other things, that I made it all up so that I could have Mom all to myself. (Jenny’s always making up stories and telling lies) After some time and observation, Mom finally came to believe that what I had told her was at least possible, and we got an apartment together for the remainder of my senior year. Mom simply kept us apart for the few months that remained until graduation. I was lucky to graduate, I went from the honor roll at the beginning of the year to barely passing. I spent that summer before going in the Navy half with my brother in Vallejo, California, and the other with my sister in Virginia. I was actually inducted into the Navy in Richmond.

I’m not sure how this equates to ‘getting rid’ of my father, as my sister alleged. He and my mother were only apart for a few months. She became a born again Christian during that time, and she decided that no matter what, her place was at her husbands’ side. I do treasure those months of just Mom and I, although I learned more details of her sex life than any daughter should. We were more like roommates, sharing everything. We even went to Al-Anon meetings together. She imposed no rules on my homework or behavior, and I was probably tougher on myself that she would ever have been. It was not, however, an easy time. Then, as now, I was deeply hurt at how much easier it was (and apparently still is) to believe that I lied. It has hardly been spoken of all these years, at least within my hearing. Remarkably, I had forgotten that part of the whole affair. I guess that’s why I feel the need now, to share my side of that sorry tale. I think daylight is the best disinfectant, and ignoring some things for too long only encourages them to fester, and grow. I release my hold on this dirty little family secret so that it can poison me no longer-and leave the judgements, reader, to you. Let he who is without sin…

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June 24, 2016

Sitting here again in the wee hours, feels like seeing an old friend.

The homecoming is all the sweeter after the trials of the last few days. Tuesday was spent in hurried preparations for the overnight trip to the VA hospital in Seattle. Wednesday, Kevin had to put in a full day at work before we could leave. He had just picked the truck back up after a tune-up, and although he did his best to get away it was still late afternoon before he was free. My brother arrived to watch over Mom, and once Kevin got home we threw everything in the truck and took off for whatever adventures the city could supply, considering. The consideration was that I was going to be stuck in a hotel room doing prep for the colonoscopy, and since we got to the hotel so late-around seven thirty-I was pretty much sleepless, sore, and vacant by the next morning. Trying to hurry the process along only made me vomit, and it was midnight before the entire gallon of prep finally went down, followed of course by hours of running to the bathroom. The hotel they put us up in was south of Seattle in Renton, requiring a trip down I-5. We knew that could be trouble with rush hour traffic in the morning, and Kevin spent some time mapping an alternate route, just in case.

The room was overly warm, considering how cool and lovely the day had been. We tried to cool it down-if we could have thrown the windows open it would have been fine. But we were on the ground floor and the windows would only open a crack. The air conditioner was almost useless, although it did get a bit cooler after Kevin unplugged the refrigerator in the kitchenette. By morning, the room was only fractionally cooler than when we started. And to add to the fun, we discovered that the newly tuned truck was leaking fluid. We awoke to the sound of rain and the news of a major accident on I-5…and the advice on the news was to avoid it at all costs. I had given myself only twenty-five minutes to throw clothes on and get to the hospital, but Kevin slept through his alarm and had to take a shower and bolt down some breakfast. We were a half hour late just getting out of the hotel. Siri was not cooperating with the alternate route that Kevin had programmed, and kept trying to send us back onto the freeway-and we probably should have listened to her. Much of our travel ran parallel to the freeway, and as we sat stuck in that disaster we could see that although traffic on I-5 was heavy, it was at least moving. Apparently everyone had taken the traffic reports to heart, and were now with us, on the alternate route. All in all, our twenty-three minute travel plan got us to the VA hospital an hour later. I had called while we were cursing our way there, just to make sure they saved me a table. No way did I want to have to do this again.

Luck is sometimes how you look at it, and as luck would have it, everyone seemed to have hit snags getting to the hospital-and it wasn’t just the traffic jam. One nurse sleepily took the wrong freeway, some of the staff were with us or on the FUBAR freeway, and the physician got stuck in a fire drill. So, luckily, we were all pretty much on the same page by the time things got going. I greeted the bottle of Propofol hanging on the IV pole in the surgical suite like a savior. Take me away, Milk of Amnesia! Unfortunately, just as you are really starting to get some good sleep, they start waking you up again. As they wheeled my bed into the recovery room, I could hear one of the nurses singing an old Joni Mitchell tune-one of my favorites.

My analyst told me

That I was right out of my head.

The way he described it

He said I’d be better dead than live

I didn’t listen to his jive

I knew all along that he was all wrong

And I knew that he thought

I was crazy but I’m not, oh no…

“I bet you don’t remember that one!” she said to her patient. I just had to jump in, surprising everyone.

My analyst told me

That I was right out of my head

He said I’d need treatment

But I’m not that easily led, he said

I was the type that was most inclined

When out of his sight to be out of my mind

And he thought I was nuts-

No more ifs or ands or buts.

With a grin and a high five, we sang it together-

Now they say as a child I appeared a little bit wild

With all my crazy ideas- but I  knew what was happenin’

I knew I was a genius

What’s so strange when you know that you’re a wizard at three

I knew this was meant to be.

Now they say little children we’re supposed to sleep tight

That’s why I got into the vodka one night

My parents got frantic didn’t know what to do

But I saw some crazy things before I came to, now

Do you think I was crazy?

I may have been only three, but I was swingin’

They all laughed at angry young men

They all laughed at Edison, and also at Einstein

So why should I feel sorry if they just couldn’t understand

The idiomatic logic that went on in my head

I had a brain it was insane

Oh they used to laugh at me when

I’d refuse to ride

On all those double decker buses

All because there was no driver on the top

~spoken, with feeling~

No driver on the top? This chick is crazy, man-Boop Shooby, I mean, split city!

And brought it home to applause-

My analyst told me

That I was right out of my head

But I said dear doctor

I think that its you, instead, I said

I’ve got a thing that’s unique and new

To prove that I’ll have the

Last laugh on you

Cause instead of one head

I’ve got two.

And you know two heads are better than one…

And thus we changed the mood, and left behind a more cheerful staff. I will leave the end result of the day for another chapter.

 

June 22, 2016

As I made coffee this morning, I was greeted by the sight of a doe peacefully grazing.

She was feeding out back, and I tried not to alert the dogs to her presence. I love to watch these gentle creatures move through the yard, and I miss the mamas bringing out the new crop of Bambi’s. Most critters avoid our clearing these days, with two eager dogs in residence. It’s been a really busy week, and I haven’t had many opportunities to write. I feel that muscle beginning to atrophy like all the others I haven’t been using. I really need to exercise my writing muscles more often, but it’s been difficult. Getting up at four am is harder than before, since I’ve started trying to stay up longer with my hubby. Trips to the VA in Seattle are always a whole day affair, even though the appointments themselves are only fifteen or twenty minutes. Monday was one of those. We left at ten, barely making the eleven-thirty ferry. Traffic in Seattle was, well, traffic in Seattle. We got to the VA hospital only five minutes late for a twelve-thirty appointment, and were lucky to get back to the ferry terminal just as they were loading the boat. We stopped long enough to devour a burger at Sonic, and made it home ten minutes before the caregiver was due to leave, at five-thirty. It’s the price we pay for living on an island instead of the city, and it’s worth it.

I spent yesterday turning the master suite from a pile of laundry and chewed up blankets into a bedroom and bath, with a bed and a floor, and other surfaces that I haven’t seen for some time. It looks three times as large and open. Our space is the last in the house to get clean, and my laundry the last to get done. I celebrated the accomplishment by taking a bath in our large tub. That doesn’t happen very often, because it’s a real pain in the ass to fill it. The water only comes out in a trickle in our bath, and has to be supplemented by pots of water heated up on the stove. But it’s a large tub compared to the one in Moms bath. I love to lay back with the window open and gaze at the cedar in back. Hot water and a cool breeze are a wonderful combination. If it had been dark, I would have lit the dozen or so candles placed around the tub. I slowly relaxed until the sweat on my brow ran faster than the breeze could cool it. After a bath like that, I find bed to be the next logical step, if only because my rubbery legs won’t get me very far. I lay down and was almost immediately bracketed by furry warmth as the dogs settled in with me. I can’t imagine a more welcoming way to fall asleep. Problem is, that when I have a restless night from the pain, it’s hard to adjust my position around all the blanket stealing dogs.

Authors’ note

And here, reader, is where the day overcame me…

 

 

 

 

 

 

 

 

 

 

 

The Pulse Of Hate

A week after Orlando…a reminder.

June 18, 2016

It’s been awhile since last I sat here, in the wee hours.

It will be difficult to return to the habit of getting up so early, but is seems to be the only reliable time to write. And then only if I hide back here in the porcelain room. This morning, getting up early was simply due to surrendering to the fact that I wasn’t getting any sleep. Mom was already on the prowl at four am when I made coffee, and she would be up now wanting breakfast if I were out there. Mom is going through a period of lucidity that has me uneasy. She tried to tell me last night, again, that she didn’t need me to run her bath for her-she can do it herself. I mumbled something about it being no bother, and she threw up her hands, turned with a dramatic sigh, and trudged her way to the bath. The problem there is not just that she doesn’t do it, (I remember the seven weeks it took to get her to  bathe when she first came home) it would hurt her feelings if I told her so. When she’s lucid like this, she doesn’t believe that she is or ever was, forgetful. And she’s a little  too alert to discuss the matter of moving. When she’s on her game, it’s impossible for her to believe that she needs any help, at all. In this mood, she would be upset at the thought of moving into long term care. With two trips to Seattle and a couple of appointments, this next week would be no good for touring facilities, so we’ll aim for the week after to get started on the search.

If my sister were here and saw her this aware, she would be certain that I am railroading Mom, or gaslighting her, or something selfish and nefarious. Maybe I’m being paranoid. The pain in my neck and back has flared up, and it makes everything seem worse, perhaps, than it warrants. The pain is as bad as its ever been, this morning, and on top of it all my gut feels bruised inside from all the bloating. I don’t really expect any great revelations from the procedures this week, just ruling out another thing that isn’t the cause of my grief. I wish I could crawl back into bed and try to sleep the day away, but I have to take the truck into town for an oil change, and drop it off at the mechanics’ for a tune up. Mom has a caregiver from nine to five, and hopefully whoever comes will be cool with me leaving the dogs here while I go to town. You would think that they couldn’t get into too much trouble in the back of the truck, but Newton has managed to chew up the wiring from the truck to the canopy, and has peeled the felted headliner about halfway off. He is a rascal, through and through. Adorable, but dangerous left alone.

It is nice to sit here with my boys again. It feels right to be surrounded by furry warmth as my thoughts wander across the page. My words are more soothing when I can reach over and caress a silken ear, or scratch gently behind an elbow as I try to untangle the latest conundrum. Animals have always been my touchstone, far easier to understand than most humans. They somehow make sense, in a sometimes senseless world. I learned at an early age that non-verbal communication is by its very nature honest, and to look beyond words to find the truth. I believe its what led to my love of working with non-verbal patients. Not only those who are stricken by dementia, but those who are trapped in their bodies by stroke or some other disease like Parkinson’s, who have lost their voice.

With dementia, simply playing along with their confabulations while gently guiding them usually works. With stroke patients and those who have lost their voice but not their minds, communication is more of a challenge. They don’t want to be coddled or cajoled, and they certainly don’t want to be patronized or treated like children, although that is unfortunately often the case. What they want is to be understood, and that takes careful thought, respect, and keen observation. I miss those challenges even while faced now with others. With Mom, at the moment what I describe as lucidity is just another confabulation, one that she adopts whenever she feels that her abilities are being questioned. She’s so good, in fact, that if you didn’t know better you would swallow her act whole. But when she tells people that she lives here alone and always has, or that she regularly takes walks all the way to the end of the road and back, or that she was a nurse-in the Army…you can spot the places in her narrative that were blank, now stitched together in a way that she can somehow accept. One moment she will insist that she bathes every night, and the next she will claim that she never takes a bath in the evening-and deliver both with absolute sincerity. Soon a new leg of our journey will begin…

June 16, 2016

I have stayed away for far too long.

I guess over the last week I haven’t felt up to communicating. My brother came down over the weekend, and Kevin and I escaped for an overnight getaway. It was long overdue. We normally would have spent three days in Port Townsend for the Steampunk festival, but neither of us felt particularly steamy this year. We didn’t travel very far, an hour or so to the bottom of the Hood Canal. The road along the Hood Canal is winding and beautiful, and when I say winding, I mean that you’d be well advised to follow the speed limit. There’s at least one bend that qualifies as a ‘hairpin’. Along the way, brave folk have built houses on incredibly narrow waterfronts along the water-or sometimes over it-on improbable stilts or crumbling concrete. There’s a huge hydroelectric plant along the way where they’ve captured water from a river above and channeled it through enormous pipes down to the plant. At least they didn’t dam a river and doom its salmon population. Given its proximity to both fresh and saltwater, (there are many streams and rivers) the trees are heavy with mosses and vines. Some of the worlds’ best oysters are found in places along the way, and the canal itself is rich with shrimp.

The place we went to is called Robin Hood Village. As cartoonish as that sounds, it’s a really lovely place. It was built by the man who designed the sets for Errol Flynn’s Robin Hood movie. The grounds are lovely and not too wild, with comfortable paths wandering through. There’s a stream that meanders down one side of the property, and the ‘Swingwood Forest’ has trails with swings and benches in prime locations. It has a tether ball area, horseshoes, a forest glen set up for weddings, and a covered pavilion for events. Lodging is in individual cabins evocative of staying in a combination camper/single wide trailer. They’re even narrower than a single wide, and about half as long. The tiny house thing is not my style, but it was worth it-there was a nice deck with a picnic table, and we had our own fire pit and hot tub. We were only there for one night, or I would have taken advantage of the free kayaks. You can also go down to the beach at low tide and harvest your own oysters-eat ‘em right there or take them to your cabin to cook. A long soak in the hot tub, a good meal, and a little time by the fire pit looking at the stars did the trick for me. We had a choice between staying at RHV or to go a little farther, to Alderbrook Resort. Alderbrook is a four-star resort, with a spa and fine dining. It would have been luxurious, but we both thought casual and relaxed would do us better, and I think we made the right choice.

Mom has had her new schedule of caregivers for a week now, and I must say that she is loving all of the attention. I have told all of the caregivers not to worry on the days when there’s not much housework to do. Just spending time with Mom is wonderful, as far as I’m concerned. Companionship and activities are her biggest needs. They read the paper or magazines to her-and to the delight of us all, Mom can now see well enough to play Uno, tic tac toe, and Skip-Bo. I think if we got her a deck of cards with bigger characters, she could do even more. How wonderful it would be if she were able to play games during the reunion, just like she used to. It will be interesting to see if eyeglasses would help her, since the cataracts have been taken care of. Most days now, she is willing to get dressed. In fact, while my brother was here, she got herself up and dressed every day, all on her own. Being able to see better seems to have made her more conscious of her appearance. All of this is strengthening my conviction that she will blossom being in a facility, surrounded by activities and hustle. Regardless of how it affects all of us, I honestly believe that Mom will be fine. I’m going to try and set up a few tours today. I would like to check places out myself before I take my mom there. Unfortunately, I have to spend a few days in Seattle this coming week for more tests to try and figure out my anemia. It will, I am sure, be a draining experience. My brother is kindly returning this week, since we will be in Seattle overnight. I hope we find some answers, because going any further will just be more invasive and painful. I am quite tired of looking and feeling like I’m pregnant with twins every day, as my abdomen swells taut through the day.

My sister can’t seem to get a break. Her meltdown came along with her husbands’ admission to the hospital with a lung infection. She had been operating on no sleep and little food. I think he’s been discharged to home now, and with any luck she’s getting some rest. I still don’t dare reach out and risk another explosion, but I hope that rest and time will help her outlook overall. I feel completely helpless, but I know the wiser course is to wait, and hope. As long as there’s love, there’s hope.

June 9, 2016

Recent events have left a grayness in my soul to match the clouded skies.

Family dynamics. What do you do when a loved and trusted family member turns their anguish into anger…and directs it at you? The answer is usually to just listen. But when the vitriol is intensely focused on the most tender and wounded parts of your heart, can you listen without trying to defend yourself? I tried. In the last year, my sister has been struggling with depression. It’s no surprise, really. She has had something seriously wrong physically, for several years, that is slowly consuming her-to the point where she resembles a victim of the Holocaust. It isn’t anorexia or bulimia, but the doctors haven’t been able to find the cause. I know what that’s like. The physical toll is inevitably accompanied by the dark shadow of depression. The depression has been there for some time. The anger that erupted so spectacularly is the result of repressing her feelings for even longer. In my darkest moments I fear that she is experiencing the stages of dying. Family members to some degree, go through the same stages that their loved one does. Depression and anger are two of the seven steps a person goes through at the end of life. Her outward appearance lends weight (or the lack thereof) to this fear. Although she tells me that I am the cause leading her to seek help from a therapist, I’m glad that she has done so. In her eyes right now, everything horrible that I have ever experienced has been the result of me plotting to get people out of my way so that I could…take over, I guess. In her anguish, she’s reopened my deepest wounds. I forgave her the moment I received the first blow…but the pain is going to take some time to recede. And the worst thing is that although I want to reach out and comfort her, everything I’ve tried so far has only made things worse, and I’m the last person she wants comfort from.

So far, reaching out has only intensified the attacks. The tally of accusations up to this point is that I ‘got rid of’ my father, my children, two husbands, and now getting rid of my mother and herself…and anything else standing in my way. I even planned my mastectomy and reconstruction and got the puppies to give myself an excuse for ridding myself of my mother. She claims that she heard me screaming-“Mine! It’s all MINE!”  I feel like I should be wearing a monocle, with my pinkie poised at the corner of my mouth, or perhaps twisting the tip of my oily mustache while glaring at my cowering mother from beneath the rim of my black top hat. Muwahahaha! Actually, I feel like regurgitated crap. But I do not feel guilty or ashamed of how I have cared for Mom over the last year and a half. I know that some of my sisters’ pain is from jealousy for not being the one who gets to spend every day with Mom, especially now that the number of days are uncertain, but certainly coming to an end-before we are ready. We always thought that, in our family, we were united in our philosophy concerning Mom. None of us cared if she had nothing to pass on to her children-it was okay if nothing was left, not a penny, as long as Mom was happy and had everything she needed to live out her days in comfort. We congratulated ourselves on our unity, believing that the twilight of Moms’ life was guaranteed to go smoothly, without strife and rancor. I think that all of this has taken all of us by surprise. This is one of those times when the giggling from upstairs is sharp and sour. Death of a loved one is a seminal experience, going on to bring out the best and worst in people.

I’m hoping this doesn’t shoot a big hole in the reunion. It would be tragic if she didn’t come-none of us knows when the sands will run out for Mom. Could be ten years, could be tomorrow. What if she passes away before the next opportunity? And yes, part of me wants her to come because she will blame me if she doesn’t, especially if something were to happen. I’ve been trying hard to be like a duck and let things roll down my feathers like beaded drops of water, but this girl can only take so much blame on shoulders already worn by the burdens of daily pain and worry. I had the whole day basically off, yesterday. I could have taken the dogs for a run on the beach, or even travelled up to Sequim to see a friend-but the last angry text (ironically, written in the wee hours) was waiting for me when I got up, and I was too weary and baffled to do anything but take a nap. In my experience, it does not matter how much you try to prepare for the loss of a loved one, nothing actually does. We knew that my father was slowly dying a decade before his passing, but the pain of losing him was still shocking in its intensity. As closely as I am entangled in the situation with Mom-and that won’t stop when she leaves here-I am expecting the assault of self-judgement to be fierce following her passing. Was it because of the move? Did I do everything I could for her? Was she happy? Was her death in any way brought on by something I did-or didn’t-do? Are the accusations against me valid? No one can run me through the guilt wringer like I can. If I could I would tell my sister that nothing she can say equals the cut of my own self-doubt. I have had ample opportunities to question my own motives over the years from every possible angle, and I find myself flawed-but not a bad human being. I have forgiven myself for my mistakes, while still owning up to them, and not a single day goes by that I don’t try to make things better, for all of us.

 

June 7, 2016

I woke early hoping to have quiet time, but Mom’s already on patrol.

I bade her good morning and escaped into the writing room. Perky first thing in the morning is too much for me. Staying out there would have meant having Mom pop over every two minutes to ask what I’m doing, and incessantly checking the time on her clock. If I am able to feed the animals, I should go ahead and feed her, right? Nope-can’t do it. The pets’ food doesn’t need to be prepared for them, and I don’t do prep before a couple of cups of coffee. Today will be the first day with even more caregivers, Moms first full day of care from the agency. Mondays are a half day, I didn’t want anyone here early on Kevin’s day off, so that he can sleep in. But we did go out to lunch and shopping, which I rarely get to do. I’m going to have to discuss this new schedule with the supervisor. At around thirty-seven hours a week, that’s like a full shift. The supervisor tells me that they don’t want to give all the hours to one person, in case they call in sick. I can understand that, but split shifts still tie me down, because I have to be here to sign them in and out. I can’t plan anything that takes a whole day, that way. I think I will propose that she try having people work a full shift, just not every day. If someone is here a full day, it will give me a bit more freedom. Some of my best friends live some distance away, and half days don’t cut it for a visit.

There is also another possibility, although I hesitate to propose it. I don’t want to get anyone’s hopes up. We will see how it works out with more help, and whether or not we would be able to handle keeping her home. I think it’s only fair to consider the possibility. The question is, could we handle the constant parade of relative strangers in our home-and if so, for how long? A year? Five years? For us, the majority of stress comes from not having any time together as a couple. I’ve been staying up much later just to have some time with my Honey. There really is no place we can escape to, and we can’t go somewhere else, leaving her here alone. Yesterday, just going out to lunch together was novel, and we spent it basically catching up with each other. Even though we spend every evening together, we can rarely talk. And no, a closed bedroom door is no impediment when she comes looking. Mom has to know what every conversation is about. I spend so much time, on a daily basis, pondering the Mom puzzle-that there’s little time to think of anything else. And that won’t stop when she leaves here, it simply means that I will be spending a lot of time driving to see her. I figure that the first few weeks, I will need to be there to reassure her every day. I think, or maybe hope that once she settles in, she won’t need to rely on me as much.

I’ve been talking a lot about how this has affected my husband and myself. On one hand, I don’t thing it’s talked about enough. We keep these thoughts to ourselves, thinking it selfish to express them. On the other, caring for someone you love should be a selfless act, philosophically. I think I’ve been obsessing over the issue lately because my motives in this have been questioned. I made this commitment with my eyes open, and caring for my mother will not end if she stops living here. My sister has expressed an interest in moving her to a place in Oregon, where she can be closer to Mom-and I have no objection to that, really. We all feel the time running out ever faster that we have to spend with Mom. It’s getting harder for my sister to travel here. I only hope that she’s not still thinking that she has to rescue Mom from my evil clutches… I still don’t really know what she’s been going through, but communicating with her is like walking through a minefield with the wrong map. She’s so fragile, both physically and emotionally, the fault of whatever has been wasting her body away for too many years now. Normally at this point I would feel I have to balance this narrative with all of the positives I see for Mom in this. Not this time. I think there is a real need to discuss the huge impact that caring for a loved one with dementia has on those who care for them.

I feel no guilt in my treatment of Mom the last eighteen months, nor do I regret making the decision to move her to long term care. Sure, there have been times, maybe even many times, when I wish I had held my temper or my tongue. All I can do is learn from my mistakes, try to make amends, forgive myself-and carry on. My goal for my mother is the same as it has always been-for her to live the rest of her life happy and secure. I believe unequivocally that this move will benefit her in many ways, providing her with activities and stimulation that I cannot. It does not mean that my commitment to her ends when she leaves here, only that here will be a place I can escape to.

June 5, 2016

The windows were open all night for the first time this year.

Now that I’m current with my blog posts, I hope to get back on track. The ability to adapt to changing circumstances really does get harder as we age. Resetting my internal clock ain’t as easy as it used to be. But once Mom is resettled, I shouldn’t have to get up quite so early to get quiet time for writing. Last night Theo the cat was out all night long, and doesn’t appear to have spent it underneath the house. That big, brave boy usually goes out after breakfast, and within an hour he’s under the house-for the rest of the day. At dinnertime  I go out and open the skirt around the house and out he comes, yawning after a long day creeping in the shadows and ready for food. There’s been another kitty hanging around, making me glad that he’s been neutered. All of our animals, with the exception of our cockatiel, spayed or neutered. We want companions, not breeders.

***Authors’ Note***

Life with Alzheimer’s comes with a lot of daily fires waiting to be put out. On this particular day they were almost continuous, and I could never get back on track. It’s on the list-the long, long list. I probably jinxed myself by saying the word ‘current’.

June 2, 2016

The sun has been holding me hostage for the last couple of days.

There was some laziness and procrastination in there, but mostly I was in recovery mode after a long week. This has been a rare week without doctors appointments, and I took advantage of that to just rest. Mom, too, has been catching up on her naps. When we were out in the car yesterday, I asked her what she could see. She described for me the trees, the sky, and the road ahead. It made me happy that she could see better, but at the same time I was grateful that the temptation to drive is no longer there. The improvement in her vision has refueled her spirit, and I sense that this will make the move more contentious. I’m sure that her recent willingness to address the issue has been forgotten, and is unlikely to return. I should get an email with the new schedule for the caregivers today. It will basically be four to eight hours a day, six days a week. We will have two caregivers splitting the shifts, so that if one calls off sick, we still have the other. I will use this time to find the right place for Mom. I want to narrow the search down to just a few before I take her to see any. I’ve done some research online, and have the list down to about a half dozen. I’m willing to be on a waiting list, for a good place, and I already have one in mind. No matter what, it’s going to be at least a forty-five mile drive, probably more. And I have new pressure to get this done.

Something happened yesterday that tells me the sands are running out on my mobility. I was walking into the kitchen, and my legs simply buckled, dropping me to the floor. I’ve had them try to fail me a few times over the last year, but this was the first time they gave out altogether. I try to visualize my spinal cord as glowing lights, flowing unimpeded. But my mind sees the stenosis squeezing ever tighter, cutting off communications with my lower limbs. I still don’t look at this as the end, more like a warning sign. Time will grind on inexorably as my spine slowly breaks down, and time runs out. The struggles of the past year have made a battlefield of my face, and when I catch my reflection I see every minute of my sixty years writ large upon my features. I want to get Mom moved and settled in before I lose my mobility. I would like to have the use of my legs after all is said and done, for as long as possible. Right now I have enough to worry about. Besides, with the VA it would be a long and arduous road. The red tape alone could take a year.

I’m certain that it will all work out, eventually. One thing that’s done wonders for the whole family is the couch we picked up for free. During the day, I usually have both dogs and at least one of the cats up here with me. Einstein can keep a watchful eye out the window from where he lays, and there’s a cat perch in front of the window. In the evening, I can snuggle with my Honey and somehow we all fit. Mom usually just shakes her head at the pups on the couch, but when one of them leaves her an opening, she will snuggle with me. The layout is more open, with room for the dogs to play. Everyone has relaxed, and the urine wars have stopped. I’m starting to believe it could be magic, this couch. Today I have the mind-numbing task of searching through paperwork for a VA authorization from a year ago. But my mind today is on the upcoming elections. I try to abstain from punditry in politics, but this primary season has been so preposterous it baffles me. I am not as disturbed by the frighteningly successful antics of the Donald, as I am about his popularity. By turns I feel angry, saddened, and afraid. Has his rhetoric expanded the polarization in our country, or simply shown the spotlight on what was already there? For the last (nearly) eight years I have observed our congress obstruct our President in a manner that is pure racism sold as philosophy, to anyone really paying attention, paving the way for someone like Trump to rise to power. Has the ‘dumbing down’ of America really progressed this far? I think this whole thing is darkening my outlook as much as anything else.

I’m not trying to climb up on a soapbox here, or go on a rant. I only bring it up because of its effect on me. Right now, Moms nose is buried in her arm like a little puppy as she naps at the table. This week, she has decided to nap at her table again until after lunch. Then she will usually nap in her room in the afternoon. She was up all day yesterday because she had an accident, and I had to wash her sheets. I was in the living room when she got up to go to the bathroom, and I noticed that she only had her pajama top on. She would be in there for a while, then go back into her room for a few minutes, then come back out to start it all over again. “Hey, Mom,” I called, “you don’t have any bottoms on. How come?” She struck a pose that managed to be both coy and nonchalant, and replied, “Oh, I put them somewhere, I guess.” I had my answer when I went into her room. I think she would smell what was on the sheets when she would lay down, and go to the bathroom to try and clean it off of herself. She went through a roll of toilet paper in the process. The sun is supposed to be back later in the day, and hopefully lift my mood with it.