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 21, 2016

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

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

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

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

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

May 17, 2016

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

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

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

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

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

May 16, 2016

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

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

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

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

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

 

February 11, 2016

Today I pick up my weary heart, and soldier on.

I’ve been wandering the house like a zombie for the last two days. I may have found out why I’ve been having so much fatigue. According to my last bloodwork, I am anemic. I’m going to go to Port Angeles this morning for more labs-the doctor wants to check for a GI bleed. It wouldn’t surprise me, my ulcer has been acting up. I have the terrible feeling that she’s going to order a colonoscopy. And I’ve been having dizzy spells. Not the end of the world, but a thoroughly uncomfortable experience. We shall see…going today will depend on what Mom does. Sometimes she goes right back to bed after her breakfast. I’m still reeling from the blow my sister delivered. This one is going to take some time. I don’t know how this will affect the family reunion, or the other things I was planning that involve my sister, that will be written as it goes along. All of this is impacting my husband in a very negative way, as well. Thankfully, J was here yesterday, so the boys and I took a nap.

Monday we took the dogs for their first lesson. I am really proud of them, they are so smart. We have a lot of work to do, but I have hope that they will be good, obedient dogs when all is said and done. Hopefully before Newton finishes eating my car. The trainer wants us to train the dogs separately, which could be problematic-they’re inseparable. Kevin and I have been carrying a pocket of treats for ongoing work concerning jumping up on people, and I’ve been working on them to come when called. I’m really glad we found this one. She trains using an all-positive, reward based method, and both dogs responded to their first lesson quite well. We should come out of this with two happy, well behaved dogs. Depending on how slow Kevin and I learn the right way to train, of course. Newton is growing so fast…when we got him, he was less than a quarter of Einstein’s size. Now he’s about one quarter shy, and his voice is getting deeper. I only wish it was this easy to train a cat. Theo has become a real problem, peeing on everyone’s beds. Ours, the dog’s, Moms if she leaves the door open…I thought this was some temporary tantrum, but after a year? He waits until close to our bedtime to pee on our bed, so that we’re really tired, causing as much irritation as possible. A dog almost immediately forgets what he’s done, and unless caught in the act, doesn’t know what he’s being scolded for. Cats, on the other hand, hold a grudge, and let’s face it-they can be downright vindictive paying it back. I don’t know if he’ll continue this behavior when Mom leaves us, but it all started when she came. For all the frustration, I love that darn cat, and I know he loves me.

February 9, 2016

I quite simply do not know how to go on, today.

Yesterday my sister lashed out at me with unexpected fury, and I discovered that while I naively believed that we were okay, she has been stewing for the last year with anger and resentment. According to the email that for some sadistic reason she shared with the rest of the core family members, I am a cruel and abusive bully who has been using elective surgery and puppies as excuses in a nefarious plot to ‘get rid’ of my mother-whom she is desperate to rescue from me. I am reeling with betrayal and pain, and I don’t think I should try to put my feelings on the page until I’ve had time to work things through. Right at the moment, all I can see is that I failed my mom and lost my sister. Currently I am lost in the echoes ringing in the cavernous hole it has left in my heart.

 

February 1, 2016

I would like my conundrum muddled, with a twist.

I still have the problem of how to keep Mom busy-or at least entertained-while she’s still here. J will be coming today, so that will help, as it always does. I need to get a list of facilities, and start checking them out. Even though I don’t know for certain where she will go, including the possibility of another sibling stepping in to take up the cause, I need to be proactive. Maybe if I lose myself in the mundane frustrations of paperwork, which seem to be a prerequisite to any change, it won’t hurt so much. It would help if I could mend things with my sister, but I need to be patient and let things settle. It’s difficult, because I want to fix the problem-I just don’t know how, yet. It leaves a ragged hole in my heart to have her so full of anger and resentment, and now hurt, because she doesn’t think that I believe in her. If only she knew how much I look up to her, and how much I admire her abilities. I know she has the inner strength to do this, but physically… I only worry because I know that I too am a strong person, and what the struggle has done to me. Now, if she doesn’t do this, I fear she may never recover from the resentment she holds, that I had this time with Mom and she didn’t. Yet the question remains, would it be the best thing for Mom?

I’m still on high alert with Mom, ever ready for a return to the dark side. Since it distracts me from almost everything else, I’ve spent much of the last few days just observing her behaviors with a more clinical eye, and imagining how that would translate to living in a facility. It’s not a pretty picture.When she’s bored, she wanders, which any facility that treats ALZ patients would be accustomed to. The same goes for snooping. She would not be okay without a never ending coffee supply, and the real fireworks would start the first time someone tried to take her dentures out for the night, or to give her a shower. It would almost certainly be the end of bubble baths, one of her few pleasures. Just in the last few days, she has stopped going into the kitchen for coffee, unless she goes dry. I think that her cataracts have gotten so bad that she simply can’t see to do it. She won’t ask for help, so I try to check more often and fill it for her. Even navigating the house is becoming more difficult for her, and she stumbles now and then, so she tends to stay put. Her appetite is still poor, even without the extra cookies. I still try to give her extra goodies between meals, and she enjoys those. I hope I’m not betting too much on fixing her teeth to help with her nutrition.

I just helped Mom get a cup of coffee-she said, “I can’t see a thing.” Of course, all the lights were off, but I got her situated with coffee and a cookie and helped her to her table. I always imagine it must be frightening, living in a shadowed world without clarity. She has been going through a real change with the loss of her vision. She’s not as confident, and that hurts my heart. Even when she threw a full cup of hot coffee at me, my inner voice was shouting, “You go, girl!” To see her now, hesitant and afraid, is hard to bear. It’s another two weeks until I take her to the ophthalmologist to discuss cataract surgery. Here again, I hope I’m not putting too much faith in the results. It feels a little bit like she’s giving up right now, and that scares me. And there, in the back of my mind circles the worry that if she goes downhill now, my sister will never forgive me. How selfish is that.

So let me stop this depressive slide and look at a few good things. The puppy is growing like gangbusters, and the two brothers are bonding closer every day. Newton can now keep up with Einstein in almost every way, and he’s usually the lead character when they get into trouble. They have a whining, groaning, semi-snarling sort of conversation that can go on for a remarkable length of time, and it’s so endearing… Today is the day we call a professional trainer and get them started on lessons. Einie has a few bad habits, and Newt just amplifies them. Just being with them makes life’s little struggles easier. There are also good things about placing Mom, or I wouldn’t even consider it. She would be in a structured environment, which ALZ patients need to help them feel secure. There would be professionals without hesitation that would take care of her personal hygiene, and she would have lots of activities to keep her mind occupied. There would be plenty of people to interact with, or she could just enjoy watching the hustle and bustle. It could be the key to getting that sparkle back in her eyes. It’s almost impossible to let go of the guilt associated with this decision, that dark whisper of failure circling like smoke in my head, but I’ve decided that its counterproductive and means nothing to anyone but me. I can’t let it hinder me from making the best decision possible for my mother.  I will definitely feel the loss, though. Some of this will depend on whether I can find a decent facility within driving range, so that I can visit often. If I can’t, then there might not be any reason not to let her be near one of my siblings, so that someone would be close to her. That’s aside from the mountain of paperwork, of course. It would be nice to have her close enough to attend the reunion, too, although I guess we don’t have to have that here, either. As always, we shall see.