June 26, 2016

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

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

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

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

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

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

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June 16, 2016

I have stayed away for far too long.

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

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

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

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

June 9, 2016

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

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

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

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

 

June 7, 2016

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

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

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

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

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

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 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 I would feel, in her place.

April 13, 2016

I think it’s true, that the only constant in life is change.

Every time that I feel life dragging its heels, I only need to look back-and not far-to see how many changes we’ve seen in Mom up to now. Just when you think you have a handle on things, ALZ will throw a switcheroo to see if you stumble. Mom had her first day with the new caregiver, S, and I suppose it went fine…she didn’t do very much, but she spent time talking to Mom, and seems pretty nice. I need to remember not to make any snap judgements, and give S time to settle in and find her stride. Nobody’s perfect on their first day. I saw my pain specialist on Monday, and got the surprising good news that the VA finally gave in and approved me for acupuncture. Four tries proves persistence pays. I’ve always been confused about their reluctance to approve this for me. I would think they would want pain sufferers to find alternatives to the narcotics that cause so many problems. I would have had my first session on Monday, but the doctor was running late and I had to get back to Mom. I made an appointment two weeks out for my first session. I’m very excited about the prospect, particularly after he did a ‘mini’ session, using tiny natural electric currents from metal contacts placed on various points on my hands. I think he called it Korean hand therapy. At any rate, he demonstrated how it can relieve pain, by pushing on my belly before and after. It was pretty amazing.

I left his office still wearing the contact points, and I must admit that I felt pretty good. I think that after Mom is taken care of, I may look into Tai Chi classes again. Anything I can do to take back control over my health on my own is a good thing in this uncertain world. Yes, I am finally working with an excellent pain specialist, but we both know that it is as likely as not that social codes and political maneuverings could put a stop to our efforts. His unconventional approach is not one shared by all physicians, and if I ever stop seeing him, I would probably have to accept changing back to opioids. The only really controversial method we are using is a drug called Ketamine. It’s commonly known as a horse tranquilizer, so our use is definitely off label. The reason for its use at very small doses is almost as fascinating as the effects. In our slow approach to treating the pain, one of the first things we wanted to address is sleep. I wake up in pain quite often during the night, never going deeper into the healing sleep below my dreams. His theory is that pain is worsened considerably by the ‘baggage’ carried with it. Prior experiences and PTSD amplify pain, your memories adding to your current pain. The Ketamine cuts out that added noise, allowing me to only feel the pain of the moment. It also quiets my mind, shutting down the external nuisances and allowing me some peace. I found that after a couple of days on the medication my thoughts were clearer and more easily focused. It also makes the pain more focused and sharper, less diffuse. In some ways, the pain is worse now, the clarity making it more defined. But that will, in turn, make it easier to target the source of the pain.

Mom has had a boring few days. She doesn’t get up at the crack of dawn anymore, usually rising these days at nine or ten. I’ve been sleeping every chance I get, I even catch an hour or two after I write…on the days that I do. A lot of mornings lately I just turn off the alarm and roll back over. So I have been the most boring of companions. I may get to spend some girl time with her on Friday, S has car trouble so I may need to take her in myself to have her hair done. I like the girls at her salon, and it would probably be a good time to pre-pay for some more appointments. Next week Mom has her pre-op appointment for the cataract surgery, and two weeks after that, she should be able to see a little again. She’s very much looking forward to it. She took visual impairment in stride, but not being able to see anything she can identify has got her attention. She puts on a good show, but really can’t negotiate anything outside of her path between bedroom, bath, and table. She will walk with confident strides on my arm, knowing I will help her negotiate and not run her into anything. I’m not really sure how I will be getting around for the time being-while I was at the pain doctor, the dogs ate my seat belts. Maybe, just maybe I could talk my way out of a ticket the first time, for the sheer novelty of the reason, but I’m going to have to get those fixed, and fast.

Today I talk to the social worker about placement. I have no idea what to expect. Even though the appointment is in Moms name, I really need to talk to him without her, at least the first time. Some of the things we need to discuss will upset her, and I want to move very carefully, sparing her as much upset as possible. Once we put things in motion I’ll try to keep my foot off the brakes, and get through it. I don’t want to delay things because of her surgery or the upcoming reunion. We’ll see how it shakes out…I should have a better idea of what to expect after today. Before she goes I definitely want to get her new underwear and socks. The continuous parade of new caregivers has hers and mine mixed up. All of her things that go with her will need to be labeled with her name. And we’ll have to decide what personal belongings will give her a sense of familiarity in her new surroundings. I don’t want her to take anything that would lend itself to a little thievery, but pictures of her and Daddy, her talking clock and maybe her Furby could go. Rights of possession get a little fuzzy with ALZ, and things tend to disappear. I want to get this discussion with the social worker in the can, before I get too far ahead of myself. Let’s see what today has in store…

April 11, 2016

I am thoroughly tired of being tired all the time.

This anemia, no matter what the cause, is beginning to wear me down. I’m only up for a couple of hours these days before I want to lay back down again. It has taken me all week to straighten one room, and my sister from West (by God) Virginia is going to try to make it here for a few days, in just over a week from now. If N were still here with us, she would help, but we have a new caregiver, S, starting today. It takes a while to get used to a new person in the house. And it will take a little time for her to adjust to us, too. Mom is easy care right now and mostly needs companionship and someone to fetch things for her. N would help me with other things, too, while she was here. I can’t automatically assume that the new caregiver will be so willing. We had one aide come out who refused to do anything not directly related to the patient, to the point where she would only wash the dishes that Mom ate off of, not the cooking pots and utensils, and certainly not the dishes we ate from. I have been told that the new aide will not empty the litter box, something N was thankfully willing to help me with. I’ve been avoiding the task while healing. I also have an appointment today with my pain specialist, and I should make a list of duties for the new aide, so she can start to establish a routine.

Kevin will be going to work for the seventh day in a row, overseeing one of the endless projects done during the slow season, which is almost over. I worry that he’ll never see a point where he can take some long overdue time away from it. He really needs a respite from…everything, before the stress becomes overwhelming. I may have to scheme with his boss to get him to step away from it long enough to catch his breath before he micromanages himself to death. He’s done amazing things with the two hotels in the past five years, giving the properties elegance and sophistication and setting a high bar for the other hotel properties in the area. I am immensely proud of him. I worry that he may be staying extra busy with work to avoid stress at home, but things have been much better with Moms’ new medication. He will be taking tomorrow and Wednesday off, and I’m grateful, although he never really takes a day off as long as his electronic devices work. One of his days this week started with a three am phone call. Wednesday is when I will be seeing the social worker to get started on Moms placement, and have her needs reevaluated. I’m not going to put if off because of the eye surgery or the upcoming reunion. I can still take her to the surgeon even if things move quickly. And we can probably take her out every day from a facility for the reunion, if needed. It’s going to be hard no matter when we do it, so it makes sense to get it done. Mom has been exceptionally lucid of late, and even though quite disoriented, she understands more of what’s going on around her. This makes the job of telling her about the move something I dread even more. Especially since up to now she has refused to even talk about it.

I’ve been operating on the theory that it would be better to hold off telling her until it’s a reality, so that she doesn’t have time to get anxious and worked up. I want to avoid distress wherever possible, for all of us. I hope to ask the social worker, maybe it would be better to start talking about it, and getting her used to the idea…I simply don’t know, and I’m afraid I’ll fumble it. Like I’ve said before, my Cardinal Rule is that nobody makes Mom cry. I broke that rule when it was time for her to stop driving, and I dread it happening over the difficult but necessary move. My sister will be seeing her right before the surgery with her vision down to almost nothing, and then later at the reunion, after her eyes have both been done. The change should be dramatic. It won’t give her 20/20 vision, she will still have glaucoma and macular degeneration. But the blurriness and fog should be gone. I was puttering around in the den yesterday when she came out of her room. She had detected movement, and came to the door. I stood still, just a few feet away from her, and she could not see me. I watched her face as she tried to decide whether something was there or not, and my heart ached at her indecision. She really can’t see a thing, only blurs of color that may or may not move. She puts up a good front, but fumbles more each day, feeling for each piece of furniture along her path. I make sure to tell her where each food on her plate is, and what the colored blobs are. I do it matter of factly, like a host in a fine dining establishment presenting cuisine. I feel a curious mix of pride and sadness as I watch her efforts to adapt, trying to navigate the house without running into anything.

The biggest change, though, has been her sleeping more and eating less. I’m pretty sure that she’s been losing weight. It’s one of the reasons why I think we need to make this move. She needs activity. There is also the issue of hygiene, and my inability to even gently force her to do it. As far as her new teeth go, the dentist told me that for the time being, it’s okay for her not to take them out and clean them, but that too will have to be addressed in due time. I’ve been unintentionally capitalizing on her sleepiness, giving in to it too often myself. And she needs the safety of structure. Instead of her rising early and hungry, she will now sleep in until nine or ten. She does get up, and checks her talking clock, but then turns around and goes back to bed. I’ve been pretty lax with her, although I never let her go too long without a meal, or retire for the night without at least offering a bath. While the caretaker is here, she will stay up, usually. N always made a point of getting her out of the house, even if only for a donut and coffee. Each caregiver has their own talent-we’ll have to wait and see.

February 24, 2016

Yesterday was largely lost to involuntary slumber.

It began when I turned off the alarm at four am, and went back to sleep. Mom was still sleeping in when I got up at seven, and aside from a couple of trips to the bathroom, she didn’t really rise until around ten. By then I figured brunch was in order, and made us a substantial meal. Mom went back to bed after eating, and I soon followed suit. Monday had been a really long day with the trip to Tacoma for my follow up with the plastic surgeon. Everything was fine there, but it was a long and stressful day nonetheless. On the way home, I stopped to pick up some coffee so that we would have some until Kevin could shop, and when we got home, I made a pot right away. I relaxed long enough to drink one cup, and then took the pups outside for a much deserved romp, after being in the car for hours.We played ball, they ran the trails…and then took off down the road. Keeping my worn temper in check, I went to check the mail. Thankfully, the dogs came back to the house with me. When I went in the kitchen to get another cup of coffee, the pot was almost empty. Not a big deal, but the fire I had banked under my temper began to flare. “Mom,” I began, “I wish you would ask when you need a cup of coffee, instead of pouring it all out in the sink.”

She came back with an indignant, “I don’t know what you’re talking about! I didn’t spill anything.” My tenuous hold on my tongue snapped, and logic took a hike. “You were the only one in here, Mom, who else could it possibly be?” She looked at me with head cocked, and with a defiant smile she raised one eyebrow and said, ”You?” I could only walk away at that point, but she was not in a mood to let things go, and followed. I was in no mood to continue, so I wandered the house, looking for something I had misplaced that morning. She grabbed my arm as I went by-sometimes she will do this, and then make a big production of letting go, demanding to know what I was doing. Except this time, she was digging her long nails into my arm. “Stop, Mom, you’re hurting me!” I exclaimed. She just smiled, and repeated her question. “what are you looking for?” “Nothing that would concern you, Mom.” She kept asking, and I finally said, “One, its none of your business, and two, I don’t know how you would be of any help-you can’t see.” “Well,” she stuck her lower lip out in a pout, “You could at least thank me for offering…” All the while slapping at me or trying to get in a pinch. I think my mind left me at this point. “Stop trying to hurt me, Mom!” I snapped. She came back with, “Stop accusing me of things I didn’t do!”

That brought my foaming wave of anger to a full stop, dashing its fury on the rocks of her logic. I understand that what we both really want to do is yell and strike out at the disease, not each other. In her eyes, I get angry and frustrated for no reason. For my part I realize that the person behind her actions is different from the one I confront. Still, I can’t seem to help giving in to it once in a while. In my defense, but not as an excuse, I am suffering from anemia, and we don’t yet know why. I thought I was just burned out and needing a break. It leaves me weak and exhausted-vulnerable to attack, susceptible to using anger. I very nearly had my first panic attack in a long while, as she kept badgering me. It was probably a combination of those draining encounters and the ensuing depression that had us both abed for the day yesterday. And I hold myself fully responsible for her depressed mood. I got her up for dinner, hoping she would be able to sleep the night, through, and she obliged by falling asleep in her rice. She barely made it through a bit of ice cream, and then she went back to bed. I made a point of giving her lots of extra hugs and kisses while I could-one of the worst things about this disease is that you can’t absolve yourself with an apology once you’ve calmed down. Even though she has forgotten the incident itself, if it happens often enough she will associate me with bad things in general, and I don’t want that to happen.

My last blood work shows an elevated WBC (white blood cell count), indicating I’m dealing with some kind of infection along with the anemia, weakening my defenses even further. Not that the VA is too concerned, I couldn’t even get a telephone appointment until the end of March to discuss the results. I’m quite tempted to use the Choice program and see my local doctor about it. I wanted to see him about something else, anyway. My left hand is quickly becoming useless for a lot of things. The base of my thumb is swollen and angry, and I have trouble gripping things with that hand. I really just want to know it its simple arthritis, or the more crippling rheumatoid arthritis. At least I don’t use that thumb when I type, although I guess if Stephen King can write without eyesight, I can do it without hands. King suffers the same malady with his eyes as Mom, macular degeneration. Mom’s eye surgery won’t be until May, but today we have a consult with the oral surgeon-and by the end of next week, Mom should have her new teeth. That reminds me, we will have to stock up on nutrition shakes and soft food-she will be without her partial for a few days…

February 18, 2016

It’s amazing what can get done if you just do it.

Thank you, Captain Obvious, but it isn’t always that simple. Does anyone else give names to their inner voices, or is it only me? Just because all those voices are indeed mine, it doesn’t mean they always agree. How’s it go…Roses are red, Violets are shy, I’m schizophrenic…and so am I. It was a full day, but a lot was accomplished. Mom was up fairly early, so I didn’t have to try and wake her. After breakfast I had a nice uninterrupted bath, and an early check-in for the weekly radio exercise. Mom looked adorable in the purple jogging suit my sister gave her. With a teal top underneath, she looked like a jewel. I tucked blankets around chewed-on areas of the backseat, then loaded the dogs and sparkly Mom into the car, and off we went. I hadn’t packed any goodies for the trip, planning on grabbing coffee and donuts on the way. Newton, of course, was munching on something in the backseat, most likely the seat itself. Turning to once again beg him not to eat the car, I missed the turn to the donut place. Mom didn’t complain though, and we traveled through the mists and rain without any major incidents. I don’t mind the long trip up the Peninsula to Port Angeles. The road winds around bays and mountains, and the scenery is much nicer than on the trip to Silverdale. The Olympic Peninsula is a not-so-secret treasure in the Pacific Northwest, a crowning jewel for the Emerald City of Seattle.

An hour is a long way to drive for a five minute blood draw. They are now testing me for iron; B-12, Folate, and another CBC. (Complete Blood Panel) They want to figure out why I’m anemic. The also gave me a kit for testing stool for colorectal cancer. As she handed me the kit she said, “Here you go, your chance to give the VA some shit.” You might think of a governmental bureaucracy as being humorless, but a lot of us know that it’s a circus filled with clowns. A sense of humor and a firm grasp of ironic sarcasm are essential survival gear, if you think like a real human. Having forgotten earlier, I stopped at a nursery and ordered some plants, to be picked up in the afternoon, and then we wound our way home. We had just enough time to eat lunch before J came for her shift, and when she did, me and the boys hopped in the car and went back, to pick up the plants. On the way, I got calls from the schedulers for the oral surgeon and the cataract surgery, but of course I couldn’t look at my calendar and drive. When the dogs and I returned home, I made those calls and got Mom an appointment to see her doctor.

I’ve put that one off, I guess hoping that something would change and it wouldn’t have to happen. Now I need to compose a letter for him outlining our concerns and the decision to move Mom. The voice I think of as Asshole now pipes up with, Don’t you mean get rid of her, echoing recent accusations. Even though in my heart I know she didn’t really mean those things, they have taken up residence in my head, popping up with doleful randomness. . And now the voice I always associate with my father chimes in, You’ll never be good enough. Frack. It’s like a pity party in my head today, starring Guilt, who I always imagine in a shiny silk suit with the sibilant voice of a snake-charming, but venomous. All I need now is for Mom to say ”I’ve got nobody to talk to”, and I will want to flagellate myself. Wow. I think the best course of action today would be to keep my head down and my hands on the keyboard, away from sharp things. In the meantime, I will try to turn my brain around, and concentrate on the good things. It’s only clouds…the sun is still there.