Wednesday, June 22, 2011

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.

Wednesday, June 15, 2011


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.

Tuesday, June 14, 2011

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.

Sunday, June 12, 2011

"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.

Saturday, June 11, 2011

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.


"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.)