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…


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 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 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.

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 20, 2016

It wasn’t long before yesterdays plans fell apart.

I could almost count each and every muscle that was sore and complaining-it felt like I had  been hit by a train. I only made it through two paragraphs before I had to lay back down. My gut, which is usually deflated by morning, was still tight as a drum, awakening all my painful spots with the pressure. After lunch, both Mom and I went down for the afternoon. I’m going to make another adjustment to her medication. It’s really strange, when she gets a half dose of her medication, it knocks her out. When she takes a whole one, it wakes her up and whacks her out. 

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, don’t want dogs on it.” I looked at her with one eyebrow raised, and sighed. “Well, 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 9, 2016

I think Mom may be palming her meds on occasion.

She is frighteningly sharp this morning, and she stayed alert all day yesterday, too. If I’m out there in the office, she is at my desk every few minutes, and I can’t concentrate on accomplishing anything. It may be paranoia on her part, but it has a drastic effect on her outlook when she doesn’t take her medicine. I’ve been cutting her pills in half because they made her so loopy at night that it’s a struggle to get her to go to bed. We usually wind up turning off all the lights and telling her it’s the middle of the night. By giving her a half dose twice a day instead of a full dose at night, it keeps her on an even keel. If she takes them. She started this morning by going around and turning off all the lights, which is a good clue to a bad mood. I dread the thought of a grumpy day, we’ve been getting along so well lately. Last night she complained about not being able to take a bath when she wants to, saying she ‘is perfectly capable of doing it herself’. And she is capable physically, she just doesn’t do it. I sense another power struggle building up. and here I was, dreaming about her being cooperative regarding the move. The ‘I can take care of myself’ argument will come into play once again, and now if I try to bring up the move, I expect quite a  lot of resistance. The mood swings when she is off her meds are drastic and unpredictable.

Kevin has an appointment this afternoon, and I have M to deal with. I may have to run away. I need about a month of me time. The fact that I’m not going to get it anytime soon doesn’t help either. What I should do today is set up visits to various facilities, and get started on taking Mom around to see them all. Right now I should get her breakfast going and start compiling a list of duties for the caregiver. I wish I could put a wall around my office, so that I could close the door and work in peace. I’ve become so accustomed to sitting cross legged in my bathroom that I actually started to believe I was more comfortable this way. Sure, except that my legs go numb after a while, especially when the words are flowing well and I forget to adjust my position. Plus I tend to slouch over the screen on my iPad, Not the best thing for a bad back. Growing up in a family of six, bathroom time was the only time you could really be alone, and everyone respected that closed door. I suppose that’s why I feel safe in here. Not that she won’t do it, but Mom seldom opens the door when I’m in here. She’s showing signs of hallucinations today, she was heading into our bathroom while I was out for coffee, and when I stopped her she said, “But my bathroom is full of people!” I had to take her there and show her before she believed me that no one was in there.

I hope that her improved sight doesn’t mean an increase in hallucinations, they are confusing and a bit unnerving for her, and I can’t help her with what I can’t see. I think that many of her declarations of independence are rooted in the denial of her condition. She cannot accept the diagnosis of dementia, nor can she explain her lapses in memory, so she gets very defensive. Her mind may be telling her that she takes care of herself, but she certainly can’t prove it. It may come to that, though, as I try to convince her that she needs more assistance than I can give her. Compelling her to stop driving was a long and painful process, and not one that I am eager to repeat. The sooner done, the sooner we will reach the conclusion, and I’ve learned that it’s a mistake to delay the inevitable. Get it over with and start the healing process. The reason that I may have to force the reality on her is that she must agree with the move. She hasn’t been declared unable to make a decision, and she could refuse.

That would leave me in the untenable position of forcing my mother out of her own home. It doesn’t matter that we are buying the property and have been paying for it and all the improvements we’ve made over the last five years. It doesn’t make a bit of difference that my husband and I now occupy the master bedroom. In her mind this is and will always be, her house. And why not? She is the one who paid off the property and managed to retire here comfortably. To me this will always be her home, even though it’s no longer legally her house. It makes the whole ordeal more painful, because I can’t play that card without feeling like Snidely Whiplash. Amend that-I can’t play that card, period. It’s only been easier to let her believe that she still rules the roost, and now I need to get her on board the terrible truth express. No more illusions or delusions until we achieve acceptance, and then she can bend reality and reasons once again. She will eventually think of some justification for her making the decision herself.She has done so with driving, claiming proudly that she knew when to quit, and can’t understand those who don’t. And the only other option, which I also shy away from, is to have her declared not competent. In some ways her thinking has been quite sharp…and then she forgets her own name. I fear that she might see involuntary admission as a slap in the face of her intelligence and sanity. I am trying to give myself a pep talk in the face of this big step, but mostly all I can think of is how would feel, in her place.