Thin ice

I happily announced to the neurologist that we were planning a Greek cruise, a great adventure to celebrate our mutual retirements, our combined 80 plus years of hard work. A cruise to historic places for my old guy to enjoy his passion for history and foreign travel, and my need to be pampered...someone to cook and move us around from place to place. A perfect plan. He took off his glasses and got quiet for a moment. Then he said, "Get travel insurance. Get it now." This I did not expect. I thought maybe a social response like, "Good for you", or even an "Atta girl!" Perhaps some tips on what to expect and/or how to handle some things. But not that stern, direct command.
After he had referred us to a specialist on memory loss, I experienced that same strange sensation. As I asked questions, I caught the looks and slight glances among the specialist and her aides in the room. They all knew something I did not.
There is a ton of literature out on early memory loss. There appear to be lots of support groups available for early onset memory loss (the young). There are meetings to attend and lectures to learn from. There are handouts and social gatherings and internet sites. When this disease progresses to "moderate to severe", the support 'swarm' evaporates. You can call the 'hot line'. That's it. You can get "assisted living" information from them, for example.
It began to dawn on me what everyone was knowing that I was not. I was about to be dropped into a free fall of behaviors and responsibilities that I could not know about until I was there. Sort of like childbirth. No one actually tells you what it will be like or what to expect. Women all keep that information to themselves with knowing glances to each other at baby showers.
In memory clinics, the specialists look at each other that way.

Mirror Images

He is more creative than I. I am more imaginative. He is color blind. I am inexperienced in design. His doodles used to look like actual people. Mine look like stick figures and geometric patterns. I suspect now, looking back, that his insistence on order and pattern according to his own preconceived notions, were more about OCD and control than his artistic inclination. I know I did not care enough about how anything looked to fight much about it. I only drew the line at function. If something met our needs, I liked it. If it interfered with our family's life style or health, I put up a fight. One old days' fight used to go like this: (him) "Our lawn looks like crap. If you don't care about what it looks like, I do! We need to get Chemlawn here at the very least." (me) "We are raising living creatures here, not grass. Children and dogs! not grass! I don't care enough about what it looks like to poison the environment we live in!" The disagreements were not always so clear and I didn't always have such a 'saintly' position on things. Sometimes I just wanted to have a say, an opinion that wasn't treated like absolute insanity. (I didn't understand OCD yet, so took such treatment personally.)
The sad thing now is that he no longer cares much about what anything looks like. He only cares about staying within "stalker space" of me, the living oracle of all knowledge...unless there's a man around, any man, but especially one in a truck, any truck. He repeats, at least three times, anything I say, even small requests like, "brush your teeth". His language competence is so poor now that he really has lost the nouns (and verbs). "Brush your teeth" may as well be, "jump off the bed." Complicating that is his growing loss of confidence in acting solely and without direction. Throw in a goodly amount of the always present anxiety and the increasing panic brought on by the disease process and you can just imagine these small steps in our house turning into major events.
Now I can choose the beds we use and the colors on the wall. I can cancel Chemlawn and buy anything I want (as long as we can afford it.) Isn't it ironic that I should yearn for some kind of disagreement? Some feist, some resistance to my choices? I would give a lot just to hear him say again, "How can you stand that color in this room? Let me show you how it should look."

Blind fish

I have been talking about anger a lot in these journal entries. It is the largest single topic, I think, of all the vagaries of this dark journey. Now I wonder if maybe I am not stuck on one of those 'stages of grief' plateaus. I know anger is easier for me than grief. I would much rather fight and try, than give in to the deep well of sadness that lurks below our mental feet, like a vast underground pool housing those fish that are born without eyes, as there is no light in their world. There is little light in our world at the moment. It takes monumental effort to ferret out some small joyful thing, to celebrate any kind of positive action. Every single thing I try and do with him brings the fear and anxiety response. Every single positive behavior is matched by his relentless, debilitating darkness. The problem is that I can't let this negative energy wash over and beyond me. It goes right through me and on the way, sucks a little more of the light from my soul, leaving me less than I was and more and more depressed. It also makes me mad that it's happening and that I can't seem to get a handle on it. Maybe part of the problem is that it's changing fast, too fast to learn new coping skills certainly, in order to keep up. In any case, the rage continues unabated. I would like to know when I can look forward to at least the 'bargaining' stage, if not acceptance. I really need to treat him as I would a child. I mean, I need to drop all expectations of behavior so that I am not continually slapped in the face with the reality of it all, and not newly enraged over our circumstance.

He spent the day yesterday trying to cut, bend, or fold a cardboard box destined for the recycle bin. I spent the day trying to be supportive and non judgmental...supplying only a gentle reminder or finding a tool, or making indirect suggestions. I was benign, neutral, mildly friendly, and trying desperately not to take over or literally take it from his hands. I wanted him to have something to do that would appear to be of help (I didn't care if the box made it to the bin). His response to my NOT taking it over was to assume I was mad at him! As the day progressed, his responses got more and more agitated, until he yelled at me that he felt as if he were going to vomit and why was I so mad at him to be making him do this.

I am totally confused by this disease. How do we plan or develop coping skills for dealing with a gradual loss of someone's mind? I am not as well equipped as the blind fish. I am used to light in my world and am having great trouble finding my way.

I love him.

I have abandonment issues. I suppose it started with the death of my father when I was an infant. (I still yearn for a model for the grey green eyes that stare back at me in the mirror.) The subsequent shifting of relationships and places of residence didn't help with this obsession. We had a big family and the various family members I invested in seemed to gradually fail and die. Of course everyone dies in time, but for some reason I have indulged in the "magical thinking" that these events were somehow related in a causal manner to me!
The loss this year of my therapist fits right into this strange phenomena. She taught me so much. She helped me be kinder to myself and to accept the things I didn't like about myself. She helped me see that everything about each of us, all the shame and the the things we don't like about ourselves, make up the whole. In other words, we wouldn't be who we are without ALL of what we've been. Very important stuff. But it didn't help her from being associated with someone who would, of course, see her demise. (magical thinking at work!)
I act like a fishwife around him. I have finally reached some equilibrium about having to do everything, to be responsible for EVERYTHING, but now I have to deal with doing everything over again. He 'helps' by taking everything out of the suitcases after I have finally packed and planned our needs, for both of us. Have to do it all over again. He 'helps' by bringing the garbage can back into the garage---full---before the garbage man has come. Have to do it over again.
So it's back to the fishwifery behavior for me, and the subsequent tears and apologies. My therapist would say, after these confessions, "You love him."
That I do. And he is gradually abandoning me, through no fault or desire of his own. This is hard.

Weight lifting

Heavy. Constant pressure on top the shoulders, sometimes on top the head. Relentless. Never ceasing. Like a waterfall...seemingly innocuous, yet deadly in its constancy.
It isn't easy being old. It takes steady efforts to be optimistic as joints freeze up and ache, as peers leave this world around you, as the long, colorful patchwork of your life looks endless...but stretches behind you, not in front. It is daunting to realize the count of your earthly days is way smaller in the future than in the past. Yet we persevere. If we are lucky, we parlay that wisdom into increased kindness, understanding, empathy to those around us. We realize that most of our personal crises just aren't important.
Mornings are our most difficult. I try cheerfulness, but it is most often greeted with a kind of morbid paranoia these days. Example: (me) "Well, good morning! You got all dressed by yourself! That's wonderful!" (him) "Yeah, well, I know you. I'll be dead soon." Try as I might, I feel the weight, the burden, the grey of our days settle around my shoulders like a familiar, unwelcome guest.

My shrink is dead. Long live my shrink.

I met my first ever therapist about four years ago. I was wary and not at all sure this kind of action would be any help for me but thought it might be a nice diversion..a sort of internal, masturbatory journey, a self centered kind of celebration of me. I warmed to the process at first. I got to talk endlessly about myself, my stories, my own personal history, and someone listened! She wasn't waiting to tell me her stories as we do in our friendships. She just listened and asked occasional questions. She also interspersed germane suggestions and insights and kept my threads as I wove the tapestry of who I am for her. I was surprised when our time was up and mildly offended that she could stop this process on a dime, and, albeit gently, decidedly show me the door. I was hooked. As I left her office that first visit, she said gently, "You know what I would really like to hear next time? I would like to hear what you didn't talk about. Your husband."
There it was. Needless to say, the next session was dominated by my wailing. I voiced my greatest fears to her that afternoon, that I was in fact losing him. Over the next few years I grew to depend on those sessions. Not only was it a safe place to face my fears, to get reassurance that my inadequacies were human, but also to get actual help in the form of referrals and planning. We were a team.
I left in November to stay with my daughter for a few months. A couple weeks into our visit, I got the news that my therapist had died. The word 'stunned' is all I can come up with, but it is completely inadequate. This kind of loss is debilitating. I thought so many things, many of them crazy. My therapist was holding all my secrets and she died. All I know is that I told her stuff I have told no other living soul. It made me feel better, much better. But she died. From the weight of it. At our last session together, she told me that kind of thinking is called "magical thinking". I find it some serious self centered behavior. A wonderful woman, a really bright light in the world is gone...suddenly, shockingly, and somehow, it's all about me.

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."