Windows and Waterfalls

Tears have always been my nemesis.  Only babies cry.  Only girls cry.  Professional women who work can't let any men see them cry.  Certainly the stoic women who raised me, the entire community of them, were much too busy with real misery and issues to waste time crying.  I just knew it was a sign of weakness.  I have since been learning that it is perhaps the loss of control that frightens me about crying.  I do know that it is not a pretty sight to see and perhaps some of that is caused by legions of repressed and cry-able things stored up inside me.  When things get saved up that way and finally come bursting out, they are seldom attractive to watch or to witness.
I started crying--secretly of course, in the shower, in the car--when we first started looking for diagnoses for my old guy.  It was fright crying...I am familiar in my adulthood with that model.  Fright crying is really nothing more than nervous mental pacing.  I paid little attention to it.  Probably thought it was appropriate and tension releasing.
As we learned the diagnoses, I continued crying over what I thought was appropriate to mourn.  I wasn't actually mourning, of course, as my old best friend, 'denial', was hard at work keeping actual change and loss away from my emotional door.  These tears were more about the drama of it all.
I sort of gave up the crying in the middle of dealing with the issues of Altzheimer's and her wicked sister, Lewy Body Dementia.  I felt noble, I think, and 'unafraid' and 'capable' and able to deal with any and all of it.  "Bring it on!" I would shout in my head, raising my virtual fists at our fate.  And to my old guy, "I am not losing you down that rabbit hole!  Not on my watch!"
Crying sort of slipped back in as the valiant warrior behaviors began to exhaust me in the face of the relentless and increasing enemy strength.  This crying shamed me.  It was self centered and self pitying.  It was really all about me, of my loss of freedom and of choice.  It was also fatigue crying, not an uncommon adult model either.
A new crying has begun lately.  He doesn't want to hurt my feelings but every chance he gets, he checks with someone else about who I am.  He asks his children, his neighbors, his friends.  I can't even pretend to be stoic like my ancestor womenfolk in the face of this new pain.  I finally wailed so loud that he took me in his arms and tried clumsily to comfort me.  I kept apologizing and explaining that my head understood and that I knew he would never hurt me.  But I had to tell HIM, my own person, that it DID hurt me that the one absolute in my life was now not so sure.
My sister's husband left her and she looked me in the eye and shook her finger in my face and said, "It can happen to ANYBODY.  Do you hear me?  ANYBODY!"  I nodded sympathetically, but secretly knew that it would not, nor could not ever happen to me.  The one thing in this strange and ever changing world that has been constant for me is his love.  It has been the bedrock of my life.  I was prepared (well, as much as one can be) for eventually losing him to death, I suppose.  But I knew I would never lose him to another woman.  I guess I was right about that, but it turns out my sister might be right too.  That kind of loss can happen to anyone, and in fact, feels like it's happening to me now.  So these tears I am proud of.  I have real reasons to mourn.  These tears might be personal but they are not self centered.  I am absolutely losing him, and we both deserve to mourn openly.
As he continued to comfort me on the couch and search for things to say that would make me feel better, he shared this, "You know, just the other night, I was going to ask you."  "Ask me what?" I gulped out between sobs.  "You know, ask you to marry me."

Waste Management

He has always been the heart in our family.  People think I am just the sweetest thing.  They have no idea.  I come from strong stock....my stock has been trampled and beaten and starved.  My stock were warriors.  My idea of dealing with adversity is to fight, and to fight hard.  I don't have that willowy, bend into it, yogic reaction to this loss.  I am royally pissed off.

When you deal with a small child, you have the entire future to imagine.  When they put deodorant on the top of their head, you laugh playfully.  When they plug the toilet to overflowing, you scold them lovingly, wondering all the while, what in the world they got into and what world they were exploring whilst ruining your plumbing.  When they ask you the same question over and over and over, you smile indulgently and appreciate the expansion of their mind and the growing storage capacity.  When they wander outside and talk to neighbors and strangers, you watch them carefully, never wondering what it is you will have to explain to said folks, or if you DO have to explain something, both of you will laugh heartily at the whimsey of youth.  When they put on 2 pairs of underpants and no undershirts, when they have on three pair of pants, buttons done all wrong, zippers undone, you know they will learn.  When they use the electric razor to brush their teeth, the remote control to answer the phone, or put their pajamas in some safe place, never to be found again, you shake your head in amazement.

When he does all those same things, I get angry.  Maybe I talk about anger so much because I am ashamed of it.  I know he can't help what he does.  I know he's suffering from the devastating confusion.  I really do know that he has amazing grace about what he's going through and that I could never match it if our positions were reversed.  My heart breaks watching him suffer through it and aches for myself as I struggle to release the anger and just love him.

I gaze outside while he brushes his teeth for the second time, because he was trying to shave.  The wind is blowing in that gorgeous way that only an autumn wind can blow, bringing the excitement of imminent change. The sun is shining, intermittently, playing chess with the dark harbingers of the winter to come that are scudding across the sky under the jackhammer blinding light of an autumn sky.  The trees are bowing gracefully under the onslaught, obviously smarter than I am about this dance, and yet, like me blissfully unaware, though suspicious, of the disaster that is coming.

Transitions

He whimpered and turned in circles, begging me not to " do this" when we arrived. We had enjoyed conversations of sorts halfway through our 11 hour drive, but he began to get odd from then on.....making random statements and getting more and more confused. By the time we arrived, he was in full blown paranoia, convinced that I was leaving him in some kind of hospital, I think. After 11 hours of driving, and caring for him as well as I could, I was done, wiped out, exhausted. Our daughter's chipper voice was full of happy anticipation when she called and asked, " are you really here?". The sound of her normal happy voice finished me off and I lost it. She asked to speak with him and then proceeded to drive over. She arrived within 10 minutes. Speaking to her quieted him, and by the time she arrived, he was reasonable again...not good, but ok. She spent the night with us in our motel room and I think it helped him. I know it helped me.
He has gradually adjusted to our surroundings over the past week. Not only has he NOT asked anyone who I am, as we left to go see our daughter's show, he announced, "you know, you are a very beautiful woman!"

I prefer the zoo

A neuro-psychologist once told me I had the tendency to "calamatize".  I wasn't quite sure what to do with that insight as I found our condition to be a considerable calamity.  But upon further reflection, I used the insight to understand myself better.  I tend to want to know the worst thing thing first, so I know how bad it will get and what I will ultimately have to face.  Then I can back in to the present, and make the most of it all.

Currently the most difficulty we are facing isn't the gradual loss of abilities, or the encroaching waste management issues.  The most difficult for me personally are the extreme changes that occur from day to day, and in fact, moment to moment.  It is a roller coaster ride of emotions that a control freaky girl like me finds terrifying and unsettling.  I keep getting lulled into a false sense of normalcy.  We can eat out together and enjoy the experience.  True, I now have to keep giving him the utensils, as he eats soup with a fork and cuts his bread with a knife and fork.  The seductive sense of normalcy however is brutal, as we are quickly whipped back into the rabbit hole of every day life as we now experience it.

Another  tough one is the ever constant questioning, of all things, all the time, all day long, every day.  The same questions and new ones, over and over and over and over.  I search for kindness and try to avoid the obvious answer of, "I don't have any more energy or time to answer and you won't remember it anyway."  I struggle constantly with the personal assault of  feeling not being trusted.  I know better, but when almost anyone else's opinion is required to validate whatever I have told him, it is tough not to feel not trusted.  He will ask a random truck driver a question about the garbage pickup (doesn't have to be a garbage truck or a garbage man) to check out the veracity of what I have told him.

I thoroughly understand the refrain, "you have to take care of yourself", but I remain ignorant of how to actually do that.  I am doing the best I can to get to yoga,for example,  but struggle all the time with the resentment that this new responsibility is really entirely mine.  I try to read and to learn and have begun to notice that most discussions of "taking care of yourself" end up in "taking better care of him."  In other words, if you monitor food, water, waste, exercise, maintain careful and accurate records, etc etc of the patient, you somehow have lessened your "load".  Sure sounds like you've made a giant new do-it list to me.

We wander in a wilderness of words.....

He was anxious, not agitated, but sincerely wanting to communicate something with me.  He had talked to his daughter and I suspect she had given him some kind of assignment related to talking to me.  So he came into the kitchen and sat at the island and began.  It was an earnest pitch to talk, to converse.  I asked him if I could write it down (I type really fast) and he said no, that people would laugh at him.  I reassured him that no one would find it funny and that it might actually help all of us to figure out his speech patterns in order to better understand what he was trying to say.  The following is an actual transcript.  Where you see parentheses, I couldn't understand the word at all, even to write it phonetically.  Note that the perseveration is pretty constant.  In person when the topic and/or theme of his speech changes abruptly, he continues socially as if that is ordinary, if not normal:

"There's another blue um....box like we have like our other boxes to bring in and out with other junks.  I don't know whose it is.  We got ours in front of the , what was that?  But there's also a lot of them up still at that age.  They shouldn't be.  I am going outside.  Are you interested in coming and seeing?  I can't get off the various sticks and things.  I am not doing a very good job.
If you did you could get another....well, actually this is a very pretty little chair, er room, but we don't have woods furniture or like that.  You can get nice....well, there is no real matter to it unless someone does, so you just leave that one alone unless you're interested in it. See we were talking, actually Erin had heard that speech before oh heaven knows...like,, heaven knows just popped in there, can't make things bigger or smaller actually than whoever wrote it and because they can't transmit it very well anyway, but nothing...little worried, always worried I guess that's true, as far as feeling sick I have always felt, it's not real good that's not very good for the first or second.
Sometimes you get an answer you don't want yourself.  It's perfectly all right unless it's something that's very very tight.
This is like something you put up and put up and have to tell your spouse that you don't let that go by if it's causing that much kind of (.......) and it's not supposed to be anybody, unless there's reasonable uh uh things that would remove no no you can't do that and I don't know what that is, don't ask me what that is. It's hard enough to keep, I think, to keep it healthy, to keep it warm, then if you can do that for pete's sake, do it.  You can tear the rug up and get ready and fight and that has nothing to do with us."

He followed up this effort with some statements about how long he had lived in this house and I got the strange impression he was considering leaving.  I asked him about that and he replied, "Well, I obviously can't stay here forever."  We talked further and clarified that he actually meant stay in this house, not on this earth.
He was missing his primary family so I helped him call his sister. She wasn't home but returned his call later.  When she called, he carried the phone over to me and whispered (stage whisper--pretty loud), "Shall I tell her about you?  Does she know you?"  When I explained that I had known her for 47 years, as long as I had known him, he just thought it was all very strange.

There are some strange Godly moments too.  Recently, I had a very bad day.  Just filled over the top with resentments and anger and frustrations.  I wasn't talking and he felt that I was angry with him.  To be sure I was cold, unresponsive, and short.  My self pity meter was at an all time high when we pulled into the garage with our groceries.  I had just gone through another round of our usual grocery store routine:  the checkout person puts the groceries in bags, Stew empties the bags and puts the groceries (bagless) in the cart, Ann puts the groceries back into bags.  I stepped out of the door of my car, not sure whether to cry or to scream, and up walks --literally--my beloved neighbors, accompanied by the arrival of a good friend into our drive.  They surrounded me literally with love and light.  In my mind's eye, I glanced heavenward and exclaimed, "Well, that was a little heavy handed--not very subtle--but I really needed it, thanks!"

My throat has been sore for a few months now.  Not the kind of sore that comes from the ever present allergy season, nor from the frequent summer colds I have been getting lately.  This soreness comes more in the voice, more resembling the sore voice I used to get as a new teacher, trying to project in a classroom.  In spite of my educational background I seem to react as if I need to speak much louder in order for him to understand me.  Not so.
I continue to try and ask him for help, as much for his sake as for mine.  He needs to be busy, to have a sense of purpose and accomplishment, but it is a labor intensive effort.  Each time I learn that if the project itself is important, I need to do it myself and avoid the anguish of the communication disaster that awaits us in each episode.  But I alternate between forgetting the trouble we're having and automatically including him in chores and trying consciously to help him be helpful.
Tonight I asked him to fill the litter box.  It would be hard to explain how many trips in and out of the garage, up and down the stairs in our tri-level house it took.  I say "litter"; he hears "water".  When I ask him what he heard me say, he said tonight, "Well, I heard you talk about North Carolina."  Needless to say, I discussed NO state of the union, only cat litter, poop, and pee.
We are going up north tomorrow to the "blue house", which apparently is an "example" of the image he has of our condo.  I can only hope that the change in scenery doesn't add to the general confusion for him.  I know that sitting on Lake Michigan will be a God send for me.

Me

I am a pretty optimistic girl.  Opinionated, stubborn, outspoken to be sure, but optimistic nonetheless.  I am known for laughing a lot and finding humor in most things.  It has served me well over the years.  I don't get easily embarrassed;  I don't mind that I am a prime candidate for a "What Not To Wear" makeover.  I think it is exciting and adventurous to find myself without answers.  I love puzzles and problems and the process of learning and discovering.  I am quick to admit when I don't know something or am wrong about something.  I have been told that some people gravitate to me because of these traits. (We have all been told in some psych journal or other that you should spend time with 'upbeat' people, as any other kind 'pulls you down'.)  Those who so gravitate suffer some themselves, so they often mistakenly believe that it is somehow easy for me to be that way--that it is a natural condition for me.  I beg to differ.
My natural proclivities might lean in that direction, but I remain painfully aware at all times how close to the precipice of horror I teeter.  That yawning chasm of pain and darkness that pulls at all our psyches from time to time.  I tippy-toe along that line, occasionally peeking into the darkness, over the edge of sanity and gasp at the depth of sadness and loss that lurks below.  I consciously and vigorously create lemonade as fast as I can, to increase sunshine and hope in my world.
These days I have to run faster than I have thought possible to mix that pitcher full.  The losses are coming daily and they change from moment to moment much quicker than I can muster any sort of pleasure in the problem solving process.
I don't feel sorry for myself, though I struggle almost daily with anger.  I can't, in good conscience, say "why me" or "why him", as the answer, obviously, is "why not?".  But struggle I do.  Sometimes the anger is caused by my inability to mix my lemonade, leaving me without my usual coping technique: mix equal parts optimism, denial, and avoidance.  Sprinkle with imagination and a dash of courage.  Serve hot or cold.

An evening with Stew

We started the evening having dinner with my son's girl friend.  They (my son and she) have been squabbling and Stew has been fretting, since he does not share his son's equivocation regarding matters of the heart.  He (Stew) is madly in love with this girl.  She understands him; she values him; she hugs and kisses him, multiple times, every visit.  (Hard not to love, right?)  After dinner the three of us sat on the porch talking our deep thoughts and crying together over the difficulties of life and love.  Stew manfully tried to put in good words for his son.  It was alternately satisfying and heartbreaking to watch him struggle to use language to convince this girl to keep reaching, to keep trying.
After she left, we watched some TV and he turned to me and said, "So are the boys coming tomorrow, you know, in the yard?"  I replied, "Yes, the man is coming to cut our grass."  "Where do we get our money?" was his response.  I tried to explain banks and pensions and he stopped me and said, "Are there other houses here?"  After I talked about the simple answer that we lived in a subdivision and what that meant, he asked again about where else we had lived.  I spent the rest of the evening going through the history of our lives--both singly and together.  He listened with more attention and interest than he has EVER listened to me in our life together.  He thoroughly enjoyed all of it and asked lots of questions.  We decided together to continue to do the oral history as often as he felt confused about it.  He thanked me profusely and told me that my hair was very pretty and that I looked a lot like his friend Genie's best friend.

"Is this the house you say we own now?" he said as we approached our own porch, returning from an hour at the grocery store.  We have lived in this house for more than 30 years, but it was beginning to feel like it wasn't his home.  I should have known something was more seriously going wrong when he said my glass of milk looked good and he got himself some--in a bowl, and drank it.

"I am going outside to put away the tools," he said, "then I will put the bags of yard waste somewhere. Where should I put them?"  I answered, "how about the side of the yard by the new fence."  He responded, "But will the kids still get their ice cream?"  "Ice cream?" I queried.  He said, "Forget about that.  But will the men still bring anything?"  I replied slowly--totally confused--"just carry the bags to the side yard.  That's all.  Nothing else."  He sighed.  "Maybe I'll go draw a picture so you know what I am talking about."  I continued to try and explain, "The men will come on Monday and take away the yard waste when they pick up garbage."  "Well, that's nice of them," says he.  "I would say it's the least they can do."

I have developed the grand canyon of frown lines on my forehead from trying to understand his speech, let alone his meaning.  But the worst of all of it is the anxiety and the newly developing paranoia.

The kindness of strangers

Early in the search for answers, I was desperate for some kind of help.  Less constant testing and probing and more evaluating and understanding.  I was left feeling like I had to quarterback the team figuring out what was wrong and what to do about it.  By the time we got to the right people and got the attention and help we needed, I no longer actually wanted it.  The straighter, truer, and kinder they all were, the angrier I got.  We now knew that he had Altzheimer's disease accompanied by Lewy Body Dementia---two of the big 5 in the dementia circuit.  Altzheimer's patients lose their memories of course, and eventually lots of other stuff, including life, so it's no pansy.  But the vicious sister in the mix is the Lewy Body...if you are so afflicted you are blessed to be able to lose all language function--speech, reading, aural understanding, while you wait to forget who you are.  I have been so angry for so long now, I can't remember NOT being so.  You would think that this day, the first day my husband looked into my eyes and asked me if I had a husband and a house with flowers, the very first time he didn't know who I was, would be a landmark of anger for me.  But it wasn't; it isn't.  Instead the rage has subsided with the awareness of what we are really dealing with and where we are.  Sadness, most certainly, but more compassion for him.  More easy love for this dear man whom I have loved for 45 years.  He looks like my old guy.  He sounds like my old guy (if you don't pay close attention to the language).  I think I was feeling some relief that the sharp awareness of loss was fading for HIM, and that was bringing some sense of peace for me.

Today

"If I were to introduce you to a visitor, how should I say that we are related?"  my mom asked my sister timidly about three months before she died.  That was in 2005.  This afternoon my husband went outside to  weed his formerly scrumptious gardens, now returning to weeds and seeds.  When he came in, he joined me on the porch with a glass of water.  His affect was open and friendly and the pall of anxiety was blessedly absent.  We began "chatting", though his language, when present at all, makes very little sense.  After we talked about what blooms were left in the yard, he turned to me and said, "They have let this place go quite a bit.  If I get the energy, I'd like to try and fix it a little."  Then he added, "Do you and your husband have your own home, and do you have flowers?"

Back to the Future.

I first noticed changes in him several years ago.  It was nothing earthshaking, nothing that couldn't easily be remedied by my always best friend, denial.  He would walk aimlessly away from us, even from his daughter's presence--usually unlike him.  He got lost more easily in strange cities and seemed to have trouble following directions and/or using maps.  We both got concerned enough gradually to check it out with appropriate medical personnel.  Two more years of hard earned anguish accompanied lots and lots of medical investigation.  He had every centimeter of his body examined, probed, scanned, xrayed, tested, head to toe.  I was desperate to find someone, anyone, who could make some kind of sense of all of it.  (We have since found exactly the help we need, but that is a story yet to tell.)