February 16, 2016

The day begins cool and cloudy, with no more rain until tonight.

Not that we need anymore, after yesterday. The puddles have puddles in the yard this morning. The snowpack is at one hundred and five percent of normal, a far cry from the arid drought of last year, although I’m sure we’re not out of the woods yet on that one. I let the rain and the holiday keep me from the long drive to Port Angeles for my lab work, so I am making that a priority for today. It sometimes seems like the fates are conspiring to keep me from completing this simple task. Or perhaps my mind balks at the possibility of bad news. Or, maybe I am simply a proficient procrastinator. In all fairness, I was feeling decidedly lousy, enough so that we cancelled our time with the dog trainer, rescheduling it for a later date. The dogs themselves are doing pretty good with the lessons, except for one area-running off down the road. Unless we can at some point build a fence, we are going to have to stick to walking them on a leash. It’s disappointing because they need to run, and we have plenty of space for them to do it. If it weren’t for the attack dogs down the road, I wouldn’t worry about it so much. The rest of the neighborhood dogs are pretty friendly. They ran away from me twice yesterday, and it was a fiasco. Kevin was going to take the truck down the road after them, but slipped in the mud and fell, the first recapture attempt delayed by a change of clothes. The second time, he just grabbed a leash and walked. The dogs, when they saw him, ran right past him to the house. His reaction to them returning was just the same as mine. We are not supposed to scold them when they come home, according to the trainer. We should instead celebrate their return  like five holidays rolled into one. But we were both so frustrated and angry that the best we could do was ignore them for a while.

I very nearly sent J back home yesterday, Mom had been in bed pretty much all day. But as J was starting to check out, Mom woke up. It gave me a chance to catch up a little of posting my entries to the blog, which was just about all the energy I had. I put a pork roast in the slow cooker, and the aroma teased us with good things to come, carrying us through the afternoon-as Mom and J made cornbread to go with it. Mom almost went back to bed while J was here, but ultimately she made it through the entire visit. Of course, she went to bed almost immediately after J left for the day. She woke up again just as Kevin and I finished our own dinner, and she not only ate well, she also stuck around long enough to take a bath. Am I just not wanting to say that she is declining? Should I be using that awful phrase, failure to thrive? I’ve tried-twice-to talk to her about the issue of placement, and even though she brushed me off, is the thought of it causing her anxiety or hopelessness? Its possible that she is in a natural cycle of withdrawal, a normal stage in the process at the end of life. But her lack of hearing and sight could be forcing her thoughts inward from a lack of external stimulation. Frack. The more you chase your thoughts down that rabbit hole, the stranger it gets. And recent events have made me question myself more. The guilt that is inevitable when making this kind of decision, is even louder, now.

I hear her out there now, banging around the kitchen as she gets herself some coffee. But I’ve been waiting for the right moment to suggest that she ask for some, instead. She can see nothing but colored blurs now, and mostly navigates by feel and memory. I can help her when I’m out there, but she’s never sure that there’s anyone else in the room unless you move or speak, so she doesn’t ask. How strange the world must be to her now. Making sense of the world was hard enough when she could see-blurs and blobs of color are probably next to impossible to decipher. Yet she remains…ready for something good to happen, trusting absolutely that her needs will be met. I suppose one of the good things about her dementia is that she lives in the moment, forgetting any troubles almost immediately. There was a time when she would have been called a cock-eyed optimist. And for her, it works. She does leave herself open to the possibility of joy occurring at any moment. But for all that, lately she seems…faded, almost translucent. If the cataract surgery doesn’t work, I’m beginning to wonder if her decline would begin to spiral out of control. I think there’s a part of me that wishes she could pass before I find a place for her, but that is selfish and cowardly, meant only to absolve me from the guilt of doing it. I need to call her doctor and make an appointment, but first I need to write him a letter outlining my concerns and giving him a heads up before he actually sees her. Talking about the dementia with her there is always tricky. I need to see him at some point too, but that one is low on the list of many things to do. My brother encourages us to look for the light at the end of the tunnel, but I see a lot of road between here and there.

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February 15, 2016

The Morning rain is delivered to us frozen, just cold enough to shower us with ice pellets.

It won’t last long, the daytime temperatures have been in the fifties. Still, it’s a reminder that winter isn’t quite done with us yet. I have a ton of things to accomplish today, but instead of jumping right into it I decided to pause, and gather my thoughts. These sessions in the wee hours of the day are restorative and cleansing, sweeping the clutter of thoughts out of my brain, clearing the way for new ideas and solutions. Most of the time. When you add the human heart into the equation, the variables multiply exponentially. I am waiting for the proverbial dust to settle before trying to make up with my sister. After the barrage of accusations leveled against me by my woeful sibling, it’s going to take me some time to shake it off. Yesterday was St. Valentine’s Day, and the day made for love only emphasized the contrast between the joy of love, and the anguish that is its sometime companion. Mom got up early, so after breakfast and the presentation of goodies from a thoughtful husband, I thought we could make some family calls. We started with FaceTime and my sister in West (by God) Virginia. Here I am talking about a few measly ice pellets, and they are looking at temperatures close to zero or below. It was a nice visit, even though at the present time Mom couldn’t see them at all. Hopefully the cataract surgery will help that.

Mom has been spending most of her time in bed for the last few days, and yes, it worries me. She’s been very pale and quiet, even my sister commented on how tired she looked. And Mom, the ‘I’m fine’ lady, agreed. After the call and some chocolate, she once again went to her room. My sister in Oregon texted while Mom was napping (and I was trying to), and when my brother called later in the afternoon, she was still asleep. She did get up long enough for Kevin the Gallant to serve up a brunch of omelettes and fresh biscuits, but then back to the boudoir she toddled. We were debating whether to wake her for the special dinner Kevin had planned-Chicken Parmesan and stuffed portobello mushrooms-when Mom got up to go to the bathroom. I grabbed her before she could go back to her room and brought her out, promoting the nights’ fare. She said it all sounded wonderful…and then got up and went back to bed. I wasn’t going to try again to get her up, she can have her dinner and special cheesecake for lunch today. I had intended to call my sister and brother back, but she stayed down. Maybe its just the combination of boredom and sitting in sightless vigil that drives her, but I’ve been worried that there is something physiological going on with her. She has been doing little else but sit for the last year, and that has to be taking a toll. It has taken a toll on me, without a doubt.

I had planned on taking off early today, to get my labs out of the way. Kevin is off, and I can leave Mom and the dogs at home, making the task less stressful. But it is Presidents’ Day, and I wonder if they will even be open, being a government agency. It doesn’t help the rain is pounding on the roof, with a rhythm guaranteed to make me feel nappy. The dogs are snuggled in blankets, with the warm smell of sleepy puppy rising to my waiting nose and conspiring with the rain to lure me back to bed. So far, it’s working. But there is more to relate…when I last saw the VA doctor, I requested a consult with dermatology. She thought it would be a good idea to take a picture of the affected area, where a dermatologist in Vegas had told me was actinic keratosis-a precursor to cancer. She then sent that off to see if dermatology deemed it worth a closer look. Saturday, I got a call from American Lake, the VA campus near joint base Lewis-McChord, saying they want me to come in for a biopsy. How ironic it would be to have dodged breast cancer only to acquire melanoma. There is just so much going on right now, I wonder at times how I will juggle it all…

And then catastrophe joined chaos, as Kevin just began hopping around the bedroom with a nasty leg cramp. I heard the microwave, so mom is knocking around out there, and my quiet time is quickly being erased by the demands of the day. Newton was concerned enough that he opted to stay with his daddy while Einstein settled back in with me. Now that that fire is out, more are bound to pop up. I should start hearing the time on Moms’ talking clock at any moment. Especially after Kevin’s pounding and yelps of pain. When the muscle cramps refuse to stretch out, the only thing you can do-short of sedation-is ride it out and take a muscle relaxer to stave off another. I unfortunately have a great deal of experience to speak from. The pain can be fierce and breathtaking, and sometimes the only way to endure them is to remember that they are temporary, and the pain will eventually ease. In the meantime, for me anyway, it means panting like I’m in labor, through involuntarily clenched teeth. My spasms come in clusters, with minutes in between before letting go for good. I can definitely relate to his pain. All is quiet now for the moment, so I do believe I will take the time I have left to simply enjoy it…while it lasts.

February 13, 2016

It has been a difficult week to focus on the tasks at hand.

I guess that’s why I’ve only been writing sporadically, between being so damn tired and attempts to make sense of recent events. Just about every other day, my body says nope-and I turn off the alarm, electing to snuggle instead. I’ve needed lots of snuggles. I haven’t gone to Port Angeles yet-I was going to go on Thursday, But Mom decided she was going to sleep that day. She went to bed after breakfast, got up for lunch, and went back to bed. At dinner time, I very nearly insisted on checking her blood sugar (she didn’t want me to), as she almost face planted in her stroganoff, twice.  As far as I could tell, she slept all night afterwards. Yesterday, Mom had an early appointment-at eight o’fracking clock in the morning. I thought great, we can go right afterwards, and get this done. Not so fast, Tonto. I got into town just on time, and went to the wrong place. I sat Mom in the car to rest while I made a call to the optometrist to get the right location. Getting back into my car is a juggle. since the drivers’ side door handle broke. Once Mom is in, I have to open the back door, wrestle with enthusiastic puppies, get the other back door unlocked, go around the car and open that door, lay down the drivers’ seat, and open the drivers’ side door. Twice during the attempt, Newton got out and it took a chunk of time to get him back in. After the fourth attempt failed, I raised my head to the skies and let our a roar of frustration, turning some heads on Water Street. I couldn’t help myself-muttering curses through clenched teeth didn’t seem to be having any effect.

We were late enough to the eye doctor that they had moved on, so we had to wait a long time. The appointment itself went well, the damage from the cataracts is worse in her right eye, which was her good eye. We will do that eye first now. Cataract surgery has come a long way. The procedure they do now is laparoscopic, with just a tiny incision. The instrument then breaks up the cataract, and sucks it out of the eye. They replace it with an artificial lens. There are some pretty sophisticated lenses, now, but she will get the most basic kind. With her, the focus is on letting more light into her eye, hoping that it will improve her overall vision. Since she still has glaucoma and macular degeneration, fancy lenses wouldn’t do her much good. I should have an idea of when the surgery will be after I get a call from the scheduler. I’m hoping that it won’t conflict with getting her teeth done. I’m sure all that will work itself out. Anyway, by the time we got done there, we only had an hour to get to Port Angeles. I figured even if we made it there by eleven, when the lab closes, with my luck they would probably to an Aloha Friday, and close early. And I still needed to get gas.

We gave up on the idea once again and went home to get lunch. Mom ate really well at lunchtime, eating every bit of her clam chowder, so when N the caregiver came, I had her make cookies with Mom. She ate pretty good at dinner too, more than her usual. First thing Monday I will call her doctor and discuss placement. She needs a doctor’s order. Then, I suppose I just start looking. There isn’t much sense in taking Mom along. I have tried, twice now, to talk to her about this but have been told-in no uncertain terms-to shut up. When the time comes, she won’t want to go. But I hope that once she’s there, she would relax and enjoy socializing every day, and participate in some activities. This part of our journey is going to be hard on all of us. I believe the decision is the right one-for Mom- and that she will do better in that structured environment. But I can’t stress enough how much I do not look forward to being the villain, once more delivering the bad news. It’s going to be difficult trying to call facilities without Mom catching on. She listens for key words when I’m on the phone, and if she hears ‘mom’ or ‘mother’, she’s right there wanting to know why.

Checking out places in person will be difficult, too. I can only leave Mom at home on Mondays, when Kevin is off. I can’t just leave her sitting in the car while I take a tour. And unfortunately, most places would be far enough that I wouldn’t have time to do it when the aide is here. I’ll just have to see how it all shakes out. There are too many variables to predict what will happen next. Once she is in a facility, we can’t take her out for a week, when we have the reunion. But we could probably take her out every day, and then take her back. Or perhaps we could think about placing her nearer to my sister, and have the reunion down in Oregon, instead. She’s going through such a difficult time right now, maybe having Mom close would help her find peace…with herself, and with me. I can do little for her in her battle this time but stand aside and hope she comes to understand-when you look for and expect the worst, chances are that is what you will find. Until she drops the filter of hurt and anger, she will miss seeing the love, no matter how gently it is expressed. It’s entirely possible that she is experiencing one of the stages of grief, and will work her way through it. I truly hope so, otherwise any bad thing that may happen to Mom will seem to her to be an indication of my ‘plot’ to ‘get rid of’ our mother.

 

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.

January 31, 2016

The last few days have been filled with stress and sorrow.

A lot of deep soul searching has gone one, topped by almost constant reminders of the need to make a change. I was watching Mom with a more clinical eye, and I decided to make a list of behaviors that are problematic here, and could make placement difficult. For instance, when bored she will wander the house, snooping in drawers and closets. She not only navigates by feeling things, she explores everything that way. She has been known to try and eat inappropriate things, like the bottle of hot sauce at a Mexican restaurant. She has lost whatever verbal restraint she once had, and while often cute, not all she says is merely whimsical. And there is the kicker…combativeness. Like a toddler, she is perfectly sweet and happy…as long as she gets her way. Cross her, and she channels her inner berserker. I was surprised, as I looked back over this journal, at how many incidents of violent behavior had happened. I suppose I brushed them off more often than not as strange but unusual events, but now I can see a pattern. It worries me a great deal. I imagine the fireworks that will happen the first time someone tries to make her take a shower should rival the Fourth of July. I don’t want to be that person, I’m thoroughly tired of being the bad guy.

I’m the one who told Mom that she had to quit driving, and that was very hard-for both Mom and me. There is no pain like that of knowing that you must do something that will hurt the one you love. Telling Mom that she can no longer live in the place she has called home for close to half a century; the place where she finally gained her independence; the place where you can feel the beauty even if you can’t see it…looks like I will once again be the one to bear the bad news. I feel like the harbinger of doom. The news will, even in her diminished state, cut into her heart like a knife…and my hand will be gripping the bloody blade. She may not remember any of the things I have done for her, but she will associate me with the pain. I had been keeping my fingers crossed that she would have been past knowing who I was, at least, before contemplating moving her anywhere. Mom was fairly quiet yesterday, but she came over to me in the office about every twenty minutes or so, to see if anything was ‘going on’ yet. She was bored and lonesome, the facts of which were stated with some frequency. So she wandered, snooping in the office and master bedroom, checking closets and drawers. Why? Because she wants to see what’s in there. To my knowledge, she has never taken anything, just looked-with the exception of boxes of Kleenex.

But even that could be problematic if she were in a facility. Yes, that kind of behavior is fairly common among ALZ patients-at least in my experience, but that doesn’t mean that there wouldn’t be problems. We only had a couple of brushes with disasters concerning the chair and the dogs yesterday-maybe I’m learning to turn her away before inciting a riot. Or maybe her jets have cooled a bit. What I’m really hoping is that this last bad stretch is over, and I can have Madame Jekyll back. I’ve had enough of Ms. Hyde. And it makes me both sad and angry at the thought of anyone manhandling her or using any kind of force to get her to do something she doesn’t want to-even though I know it may become necessary for her own well being. That problem looms on the horizon, with her bathing and personal care. I think I’ll let the professionals do it, its part of the reason for so many back surgeries, moving patients who don’t cooperate. Dead weight is one thing-live, squirming, kicking, hitting weight is quite another. And like I’ve said, I don’t want to be the bad guy anymore.

January 29, 2016

Talking to my sister could not have gone more badly.

Which sort of figures, since Mom was still on a roll, too. She attacked me for the second time in as many days. This time it took both hands to hold her off, and she tried to head butt me in the chest. I was once again forced to stand guard over the animals, instead of getting anything done. This was all when Mom decided to throw her hot coffee at me as I once again told her to leave the pets alone, hitting about a thousand dollars worth of electronics-along with me and Moms chair. First, though, my sister called-and the day went downhill on rocket power from there. It actually started out pretty good. After making me feel like a criminal the last time she called, she said that while Mom was down there, she punched my sisters’ cat off the counter, bouncing her off the cupboards. She told me she was sorry for practically calling me an abuser after losing my temper with Mom one day, when she threw Einstein off the chair. I was encouraged enough to tell her about the need for placement, and that’s when the tide turned. Just as I feared, she wants to quit her job, and take care of Mom herself. She can barely drag herself through the day as it is, and I worry a lot about her health. She has lost so much weight, and nobody can figure out why. I’m certain that Mom is strong enough to knock her over.

She was hurt and insulted when I expressed my concerns, the very same concerns she had expressed about me. I believe that moving Mom down to Oregon would mean two moves, causing twice the upheaval for Mom. I can’t see my sister being able to pick Mom up if she falls, or to deal with incontinence, and all the extra work that it entails. I think sadness would overtake her as Mom fails, and that Mom would wind up in a nursing home anyway. I don’t believe she understands the pressures she would be facing. She thinks I am insulting her intelligence when I tell her that you don’t just quit your job for this gig, you literally give up your life, for as long as it takes. If Mom were to go into a slide, almost a certainty with a big change, would she be able to handle the lightening mood changes and behavioral quirks? What about when she declines, and can no longer walk, or feed herself? What if Mom were, instead, lucid and disoriented but generally healthy-could she handle giving up her own life…for years? Every single concern that I voiced just made her think that I don’t believe in her. And for the record, these are questions I ask myself, all the time. I asked her how she thought she could deal with Moms’ illness, when she couldn’t face what was happening, and couldn’t even bring herself to read this account of it. She told me that Mom didn’t have anything to do with her not being able to read the journal, she said in the beginning it was because she was jealous that I had Mom and she didn’t. She didn’t say what is keeping her from reading it now. But it’s painful to realize that she has harbored these feelings for over a year without telling me.

Maybe I picked the wrong month to break up with my therapist.