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…

 

 

 

 

 

 

 

 

 

 

 

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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 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’.

May 30, 2016

The sun is striking sparks of light across the freshly washed landscape.

It’s going to be a glorious week, and just for the moment (knock on wood), there isn’t a single scheduled obligation. The flurry of medical appointments is pretty much done, for Mom. We have a few more weeks of special eyedrops to go, but that’s all right-its at least easier to bear than the weeks of surgical drains that tied me down. She’s doing really well now with her vision, and it will be exciting to see if eyeglasses will be helpful for her again. I might even be willing to play card games with her, if she can see enough to play. I stopped enjoying playing games, after a few frigid winters in the mountains of Oregon. We would get snowed in an average of two weeks a year, we lived four miles from the nearest paved road. Countless card and board games were played-enough to keep me for the rest of my life. I think I could bear to pick them up again, if it becomes possible for her to enjoy playing again. I guess the reunion will be a good test of her ability and willingness. I will have to start this week calling facilities and setting up tours. I also need to talk to her caregivers supervisor, and see if they are going to be able to handle more hours for Mom. There are a couple more agencies out there, if the current one can’t handle the increase. We’re going to have to move carefully, going forward.

Sometimes she remembers that we are looking for a place, and sometimes she doesn’t. I try to keep the discussion low key and matter of fact, and thus far she just thinks of it as ‘someday’. I’m hoping that this will eventually lead to acceptance. I would like to take things slowly, but it isn’t just my patience and peace at stake here. For the last two weekends, Kevin has tried to make us a special breakfast while Mom was sleeping. Both times, just as he was sitting down, out would come Mom. He would put his food aside, and instead of sitting down with me get up and cook for Mom. It’s the lack of time together, just the two of us, that’s difficult to juggle. The fact that after all that, she only eats a couple of bites…well, that doesn’t help. It isn’t her fault, she’s just looking to be a part of things, and you can’t blame her for that. What’s even harder for him is that he stays up late for the express purpose of having quiet time to unwind, and she often wanders at night, disturbing the peace. I will be heavily promoting social activities at any facility I show her. With back surgeries and the ensuing disability, I have gown somewhat accustomed to a solitary existence. My husband comes home every day, but I seldom see other people. Thus, the pursuits I engage in are solitary ones. Immersing myself in the natural world, writing, activist commitments online…I don’t even get to read, these days. None of these enterprises are inclusive. Boredom is her worst enemy, and I am limited, physically, in what I can do for her.

Whatever is going on with my spine, or gut, or both-has been cramping my style, and I can barely make it to the end of the driveway and back, on foot. That’s maybe a hundred yards, round trip. Pathetic. Sure makes it difficult to keep up with two rowdy, energetic dogs. Thank goodness Mom takes naps too. Physical limitations make me angry, and I suppose that’s a good thing-it at least moves me forward. Logic tells me my legs will eventually fail, but I will not surrender them easily. I will take my cues from the sunshine today though, and push my worries into tomorrow. I can’t do anything much on a holiday, anyway. And I think I will try to get out to the cemetery and take care of Daddy’s’ grave. I like to see it when the flags are there. As the dogs keep reminding me, it’s too nice of a day to waste on worry. I need to be more dog.

May 21, 2016

Daytime, as it turns out, is the wrong time for me to try and write. 

I’ve been sleeping a little longer in the mornings and trying to write at various times during the day. My desk is a comfortable place to do it, but it makes me too accessible and I find it difficult to keep my concentration. Here, in the porcelain palace, Einie settles right in on his bed. Out there, he fusses to go outside. Mom can’t stay at her table for very long, and comes into the office every few minutes to say hi, or ask “What’s going on?” Every time she does, my train of thought jumps the tracks and flies out the fracking window. On Wednesday, Moms’ case worker came out to reevaluate her needs. I should hear next week how this will affect her daily rate. I’m hoping that we can get it high enough to make finding a nice place easier. Mom, of course, doesn’t remember our breakthrough conversation of a few days ago, when we worked through this together. Except that she does seem to have retained some vestige of memory, tucked away in her subconscious brain. She doesn’t seem surprised when I talk about it matter of factly every day. She does tune it out, though. She has gone back to shoving the pets off of the furniture-whenever I’m not close enough to stop her. She even came into the office and shoved my cat off of my desk, saying, “Cats don’t belong on the table.” The fact that it’s a desk, not a table, has no bearing on the matter. She’s seen me eat there, so it’s a table.

I’m hoping for a nice, quiet weekend, to regroup and prepare for the week ahead. I know that just saying that is an invitation for Murphy’s Law to kick in…but hope is a good thing to have, when all else is stripped away. Next week is a busy one, on Monday I see the plastic surgeon for the last (I hope) time. Tuesday is Moms’ eye surgery, Wednesday is her follow-up, Thursday is acupuncture for me, and Friday Mom goes back to the foot doctor. The house is starting to look pretty good, less like a hoarder lives here and more like a collector. I’m beginning to look forward to the reunion later this summer. It’s wonderful to have a couch again, and the whole family loves to gather on it. Last night there was my husband and me, our two dogs, and one of the cats filling up the sofa. I leaned towards my husband and murmured, “A king size bed and a longer sofa.” He gave me a tired but indulgent smile. Theo the cat has been joining us at night lately, bringing the bed count up to five. The cats have been changing behaviors lately. Nicci, our wild-eyed barn kitty, has finally decided that being held or on someone’s lap is not only okay, it can be downright pleasant. It took five years for her to get to this point. Theo has just about given up on being afraid of new people, there have been so many caretakers here that he’s getting used to having strange people around. Since I’ve been letting him go outside, he has declared a truce on the urine wars. (knock on wood)

He even got into the dog bed with Einstein this morning. It is getting pretty ridiculous at night with everyone sleeping in a pile. Kevin and I are forced to opposite edges of the bed, while the pets stretch out and steal the covers. Maybe, when we get the kennels, we should just crawl in there ourselves for a little peace from the furry horde. There are still a few patches of long grass out in the yard and as it happens, that’s a good thing. It seems that Newton can’t poop unless it’s in long grass, and he’s quickly filling up his designated patch. I’m not sure what he’ll do once it’s all been mowed. Maybe I can get him to retreat to the forest to do his business.

Mom got up kind of grumpy today. As I was making her breakfast, she went into the living room to un-dog the couch. I came in behind her and told her if she kept that up, she could fix her own food. We got through breakfast without further comment, but she’s gone into the bathroom and come out dressed. I wonder where she thinks we’re going? I’ll ask. Ah-I am informed that she is going to ‘some kind’ of meeting today, and ‘someone’ will be picking her up. This could just be the kind of day its best to sleep through. The weather is quite a bit cooler than it has been, and it looks like rain showers for the day. That’s not as nice as sleeping with a good heavy rain thundering softly on the roof, but it’ll do in a pinch. I think a test of that theory is in order…

May 17, 2016

The clouds may be making a comeback, but inside the house, sunlight is breaking through.

What started out as something pretty awful, led to a major breakthrough on the home front. The day was mostly typical, although Mom did seem largely confused in the morning. At noon the caregiver arrived, and she and my hubby made a lot of headway getting things out of the living room. The home visit by the supervisor was postponed until four pm, and by the time she got here the house didn’t look quite the disaster that it was. The trouble came after everyone else had gone. Mom decided that if she wasn’t allowed to smack the dogs off the couch, she would take her ire out on them every time they passed by. She would strike out at them as they passed, or kick them if they came close enough. I asked her why she was being mean to them when they hadn’t done anything, and she fell back on “I don’t want them on the furniture.” I protested, “But Mom, they don’t know what you’re punishing them for if you just do it all the time. It doesn’t do any good.” She cast a jaundiced eye my way. “It does me some good.” She mumbled. So, when she got up and delivered a particularly hard kick to Newton-I lost it.

When I got up and approached her, she drew back the hand holding her coffee, ready to let fly. So the first battle was to make her relinquish the mug, no easy task, but I wasn’t willing to take another coffee bath. She started swinging, and I started holding onto whatever appendage was currently employed. I finally had her pinned and just held her, careful to avoid teeth. Mom holds nothing back when she’s angry. When she finally agreed to stop, I let go and we retreated to our respective corners, both of us thoroughly miserable. Mom went into the bathroom to collect herself, and when she came back out, I was waiting with a fresh cup of coffee and an abject apology. In tears, I hugged her and told her how much I hate it when we fight. I asked her to please just hang on for a little while longer, that we were working hard on a solution to the problem. For the first time, she seemed willing to talk about the move. Armed with fresh coffee, we sat at the table and really talked, and she was completely there for the entire conversation. I told her that we wanted to find a place for her where she could be active, engaged, and happy. I revealed to her that I didn’t feel like I was providing enough for her in activities and interests. I said that my goal all along has been to make her last years not just comfortable, but fulfilling. I told her that my goal was to find a place that she liked close enough so that I could see her every day…and the thunderclouds in her eyes cleared, the stubborn set of her jaw melted away, and she heaved an enormous sigh of relief. And just like that, I had my mother back.

I believe now that she feared we were going to do what we used to call in long term care a ‘granny dump’. It’s where a family puts their parent into a nursing home and just abandons them. When she realized that wasn’t the case, everything changed for her. The suspicion and resentment has been laid to rest, along with some careworn lines on her face. We snuggled and giggled together on the couch while we ate dinner, and the rest of the evening was warm and pleasant. She did say that she could be happy here, but she listened as I explained to her that my health hasn’t been the best and that the stress was passing through me to my husband, and his health was impacted as well. She expressed understanding when I said that Kevin and I needed time together, just the two of us, husband and wife. I admitted that it was becoming harder all the time to keep up with all her needs, and confessed that the whole conundrum was making me grouchy and distant. I swore to her my love and concern, and she gracefully embraced it. My heart remembered a time at the end of my high school years, when she and I lived together like sisters, sharing everything in our hearts. I cannot fully express my gratitude at feeling that way again…no matter how fleeting it may be.

I know that this window of clarity will not last forever, and that we have many more struggles ahead, but for the moment we are companions, not combatants. Her caseworker will be here on Wednesday, and will reevaluate her needs, taking us out of the equation as caregivers. This will raise what they call her ‘daily rate’ which then determines how much Medicaid will pay a facility. Her daily rate at the moment is quite low, because we do most of the caregiving. Armed with that, Mom and I will start visiting various facilities and checking them out. I told her to not hesitate to tell me if there’s something she doesn’t like about any particular place, because we want her to be completely comfortable. Taking advantage of the atmosphere, I broke the bad news. In my experience, most long term care facilities do not have bathtubs. This can be hard for a bath person, which she and I both are. It’s more than getting clean, its therapy. Mom used to watch television while she bathed, I prefer a book to read. Usually at the most they will have a whirlpool, which is cumbersome and time consuming-and thus rarely attempted by overworked staff. Before yesterday it would have been a deal breaker. But I think she realizes that there are compromises to be made, and she said we should just keep looking for the best available place. All in all, although my shoulders are stiff and sore I feel unburdened, and even Mom has more bounce than shuffle in her step. It’s a good day.

May 16, 2016

Another day, another attempt to achieve normalcy, or something like it.

I never got to the end of the first paragraph yesterday. So everything’s been upside down this week. Mom has turned nocturnal, and I’ve risen each day to lights ablaze. I have no idea how long she’s been up, and I’m not looking forward to finding out. If she’s been up for a long time, she wants conversation and breakfast, right now. I don’t function fully until I’ve had at least one cup of coffee, and even then I only speak mumble for the first hour or so. She was up when I fed the pets this morning, with her usual “Whatcha doin’? That looks like dog food.” (A hint that I should be fixing people food.) And so the day begins. We have a new supervisor for the caregivers, and she is going to make a home visit today. It’s not the best time for it, and I hope we don’t give a bad impression, because the house looks like the tornadoes in the Midwest swung by and deposited their load of furnishings in our living room. For some time now, my husband and I have been looking for a couch-we miss sitting together. A couple of days ago we ran across an ad for a free one, including delivery. It was dropped off yesterday, and they (albeit reluctantly) even wrestled it into the house for me. It’s very comfortable, and the dogs are in seventh heaven now that they can slumber next to us in comfort. The only problem is that the furniture displaced by the new addition is still here, crowding the room.

I’ve been writing and watching Mom for the last hour. She will come out, go to the bathroom and then get her cup of coffee off of her table and take it in to the microwave for a warm up. She takes it back to her table and drops it off, then goes back to the bathroom…and back to bed. She stays in her room until the coffee has had time to cool, and comes back out to do the whole thing over again. She did this three times before I simply cooked her breakfast and went to get her. She’s been losing her robe a lot lately, and when she can’t find it, she comes and gets mine, which she seems to be able to locate just fine. She wound up with both of my robes the other day, while hers was laying across the foot of her bed the whole time. Last night, as Kevin was tucking me in, we noticed that the dogs had elected to stay on the couch. It didn’t really require any thought on our part for us to take advantage of having the bed to ourselves for once. It’s been a rare occurrence  since the mastectomy and reconstruction that we have had time and space for intimacy, and it was like finding ourselves again, in each other. We were probably lucky that not only the dogs stayed out, but so did Mom. It would not have been that unusual for her to seek us out, wanting to know ‘what’s going on’.

Now that we have a new piece of furniture, Mom has made it her mission to keep the dogs off of it, reigniting our old power struggle. When I first put the couch in place, I sat down on it with the pups to try it out. Mom came stalking over and demanded that I ‘get that dog off the couch’. “No thanks, Mom,” I replied, “it’s my couch.” Her jaw tightened as she replied, “I don’t care, I don’t want dogs on it.” I looked at her with one eyebrow raised, and sighed. “Well, I don’t care that you don’t want them on the couch Mom.” She couldn’t think of a reply right away and returned to her table, obviously upset. I told her, “Take it easy, Mom, you won’t have to worry about it at your new place.” I’ve been trying to be factual about the change, hoping she will accept it. She said, “Good. When do I move?” Is it possible that she will be okay with that? I’m not sure, but it seems like a good sign to me. I know that as stressed as we have been, it has to be even harder for her. As long as she is in denial of her condition, its even more confusing for her to try and analyze what’s happening to her. The chaos with the furniture has her wandering in confusion, although I’ve made sure not to disturb or block her pathways. And this morning she is obviously hallucinating. She keeps playing with the empty air in front of her face, pulling and twisting, turning things only she can see. She seems a little unsettled today, Searching the kitchen counters for anything of interest.

Kevin brought home a rare four beers last week, and since the fridge was full and we were in no hurry to drink it, it was left on the counter in the kitchen. A couple of mornings ago I rose to find Mom wandering around with her coffee cup in one hand and a beer in the other. “How do I get this open?” She wondered aloud for my benefit. “Mom, why are you wanting to open a beer?” She has never been a beer drinker. “Oh, is that what it is?” She queried, blue eyes sparkling. Luckily, it was Stella Artois, and the tops don’t twist off. A few minutes later she came back through the kitchen, sweeping a beer off the counter as she went, full of tricks. She countered my query as to what she was going to do with that with a perfectly deadpan delivery. “Well, I thought I would drink it.” I spoke slowly and carefully, my shoulders drooping at the thought of a day of stubborn debate. “Mom, it’s five O’clock in the morning.” Her eyes twinkling with mischief she replied, “So what?” In a desperate attempt to regain  my reason, I told her it would be nice if she at least asked Kevin if she could have one, and she asserted that she didn’t have to ask anyone. Deciding that I was only beating my own head against a brick wall, I surrendered in silence. After about a half hour of trying to get the top off she eventually forgot why it was so important to her and gave up-although I had to retrieve the beer from her room later. The last thing I need right now is a drunken Doodle.

 

May 13, 2016

I’m starting today with a better attitude.

I feel better since my acupuncture session yesterday. Even just talking to my doctor helps, he treats me as an intelligent being, he’s always generous with his knowledge, and I can bounce theories off him without feeling foolish. He loves to share his passion for medicine, particularly Chinese medicine and acupuncture, combining it with western medicine and taking a holistic approach to treating patients. I like the idea of treating the patient as a whole being. He also did an extra adjustment for my inflammation, and I am much more comfortable today. My belly’s still fat, but not hard and uncomfortable. I’m determined to do everything I can to inform myself between now and the colon safari. I once again have the drive to shoulder that boulder and heave it uphill. It all comes down to will. In practice I have seen people who, if one little thing goes wrong with their health are ready to give it all up. In one Scandinavian country, incontinence is considered a valid reason for requesting assisted suicide. And I have seen others go through incredible physical hardships and yet retain their will to live. I’m fairly certain that I fall into the latter category. My father once told my mother that if he were maimed in war, if he lost a limb or an eye, he would never come home. He couldn’t seem to handle the idea of being less than whole. I’ve had more than my share of having things taken off of, or out of my body and disposed of, but I am still whole. It hasn’t taken anything from who I am. Not that those experiences don’t change us, but I tend to look at that as growth, not loss. I am surrounded by reasons to keep on going, even if it means chasing after the elusive realm of ‘what could be’. The doctor tells me that, in his opinion, intelligent people are cursed by the need to find answers, even when there aren’t any. That feels about right.

For some reason, Mom decided she wanted to go in back with me for the treatment. Not that I blame her-treatment rooms are at least marginally more entertaining than waiting rooms. Filled with the mysterious tools and appliances of the trade, they’re a drawer snoopers’ delight. I was curious about how she would take the unconventional methods my pain doctor uses. She got the quiet, closed look she reserves for lunatics and small children, so I figure she thinks of it as some whackadoodle quackery, much like how she views the healing power of crystals, and natural medicines like herbs. She kept quiet, though, while the doctor and I discussed various aspects of my care plan. She watched in silence as he placed the needles in various places. I don’t think she could see the needles, they’re so fine. When the doctor dimmed the lights and put a heat lamp on me to facilitate better results, she started playing with my feet and asking questions. “Why do we have to sit in the dark?” She demanded to know. “It’s supposed to be quiet and relaxing, Ma.” She found one of the needles and start flicking it with her finger, chanting “Ho-hum, ho hum,” as though the needle were a metronome keeping time. “Thats…not...helping…Mom.” Came out through clenched teeth as my nerves sent the energy flow into fibrillation and mild electric shocks shot through me. After that she settled for tickling my feet, something she sees as a benign pastime but had the effect of setting off a series of muscle spasms. I couldn’t adjust my position without setting off the needles again, so it was pretty uncomfortable at times. I think we’ll just have Mom stick to the waiting room going forward.

After being in the back of the truck for a couple of hours, by the time we got back home the dogs really needed a run, so I didn’t fuss much when they took off. I could hear voices out on the road, but they didn’t sound angry, so I gave my ankle a break and, grabbing their leashes, ambled slowly down the driveway to retrieve my errant puppies. They were hanging out with a couple of our neighbors here on the Point, regular walkers on the road. I apologized for the pup’s exuberance and they replied that the dogs were actually entertaining-going several times around the cul-de-sac at the end of the road at a full run, to their walking one. I decided to give the dogs a break and let them play some more in the yard. They returned the favor by running pell-mell through the yard and, I hoped, burning off some energy. The grass is now so tall that they become lost in it. All I can see of them is their curved tails, rising like periscopes above the waving grasses. Its pretty hilarious, watching them play hide and seek. Einstein will lie in wait, while Newton takes high bounds through the grass to get a better view. They need to get all the enjoyment out of it while they can, I think Kevin is going to talk to someone with a brush cutter for the first mow-can I get a hallelujah on that one. I think that Einstein may have had a really bad dream during the night. I woke up around two-thirty am to the sound of my dog whining. He was sitting on the floor at the end of the bed looking shaky and miserable. He usually only tolerates hugging, but he leaned into my worried embrace and raised a paw for me to hold as well. He wouldn’t get back up on the bed, and he didn’t want to go outside, so I moved the bench at the foot of the bed and curled up around him for a little while, after feeling around for any injuries that could be causing him distress. Once he had settled back down, I covered him with my robe and tried to go back to sleep. This morning, although still wrapped in my robe, he was fine. I take that as a sign that he needs beach therapy. Or maybe that’s me. Just to be sure, we’ll both go, and take Newton along for good measure.