Press on

Who are you? Who am I? And what part do or did your parents/guardians play in creating that persona? These questions are becoming increasingly important to answer as things evolve/devolve around here.

Someone posted a wonderful picture on Facebook the other day, of a young man cuddling with a full grown lion. The picture reminded me that once, many, many years ago, I wanted to work in big game conservation. Now this is probably laughable because I grew up in Trinidad & Tobago, where the biggest 'game' is a buffalypso, a cross-bred creature that is half buffalo, half cow I think, bred purely for its meat. We have neither lion nor tiger nor any other kind of game that might have caused me to develop a tendre for such a profession, but there you have it. This is what happens when children watch too much nature TV with their Granny. Anyway, that was how I decided I wanted to spend my life, protecting big game. I told my mother of my plan. She laughed in my face.

Now, I'm pretty sure Mummy didn't laugh in a mean-spirited way. Well, no, I'm actually not sure of any such thing, but I'm giving her the benefit of the doubt. I don't believe she was mean-spirited so it's perfectly reasonable to give her the benefit of the doubt, but that laughter changed something in me irrevocably. I never thought about conservation again. My dream was laughable, or my mother thought so at any rate, and so that was that.

I've had other dreams since then, many of them. When they were shared with my mother, dreams were shared far less earnestly or freely than that first. I remember when I first owned that I wanted to sing in a way that would (and these were almost my exact words) 'reach in to people's guts and twist them' I shared that information as if daring her to challenge me. True to form, she did challenge me, telling me many moons later that a friend of mine, even (and again these are almost the exact words) 'with her terrible breathing, her voice has more ring than yours'. Editorial comment: the hallmark of a good singer is the ringing quality or brilliance of the voice. To tell someone who wants to sing that their voice lacks that timbre, well that's tantamount to telling them to shut up.

Even as I write this I wonder how I survived the onslaught. Actually, I know exactly how I survived: Granny. I understand (again, giving Mummy the benefit of the doubt) that my mother was trying to protect me from having dreams that could never be fulfilled, but in so doing, did she inadvertently teach me that I was unworthy of the dreams I did have? That might explain the walls I now perceive that keep me from taking certain kinds of risks. I've no trouble risking standing in front of people and singing but so many other things simply slay me, as my mother did so many times. As for the ability to do the singing thing, that success is consequent upon Granny's unwavering support. There's a story about the first major vocal competition I sang in after Granny left us. One curtain on the stage fluttered the entire time I was on stage. It stopped once I was done and remained still the rest of the evening.....but I digress.

As I so often say, that you didn't mean to kill me renders me no less dead. She didn't mean to kill me or my dreams, but so many of them are no less dead and scattered about my feet as a result of her 'protection'. Ah well, lift the legs high, climb over the carcasses and 'press on' as she would say. Press on.

I'm pressing on eh, but it is the battle within that takes the greatest toll.

Pillow talk

So some days ago, I gave my mother my pillow. Even as I did it, I wondered if this was some part of my own journey through martyrdom, or if I was just giving her my pillow.

The back story on the pillow is that her pillow was really too floppy to be useful. I changed her sheets and couldn't bear to put a pillowcase on that dead fish of a pillow, so in some frustration, I handed over mine.The bed was made and that was that.

The frustration I felt surrounds my 'anality' regarding symmetry. A larger-than-twin bed needs two pillows. Yes, I'm silly like that. So I gave up my symmetry. Now, I try not to look at the lopsided bed, but at least mother has a half decent pillow. In this instance, this is just a pillow. The big question is: what other things am I willing to give up - perhaps to my own detriment - for my mother's comfort?

That question was only academic until a few days ago. There is now a real possibility that I will need to choose between my needs and hers in the next several weeks. The question is: what will I choose? One of the issues that drives my thinking is that I realize that her travel window is closing. I'm already not sure how to get her home from the US. I'm not sure that either of us has the capacity to survive gracefully an international travel experience. And that's today. What happens tomorrow? Next week? Next month? With all that in mind, I have to decide whether my needs, whatever they might be, trump my wish/her wish to be, and eventually die, at home. If we don't make the move now, then when? And if never, then what?

So, that's the question I'm posing today. I've no idea what the answer is and that's where the pillow comes in. I set aside my need for symmetry so as to ensure her comfort. Will I do that again? Is there a level of personal (my) need that trumps her needs? Where is that level? Who decides that we're at that point? Malcolm Gladwell might call that a Tipping Point. (Apologies. An earlier edition cited Daniel Pink and that's clearly not correct.) When does the scale tip? And if I do decide to put me first, will I have to curse people out when I'm accused of being selfish? And what's wrong with selfishness anyway?

Alligator wrestling

Sometimes working with Mummy really feels like alligator wrestling.

As a consequence of where she is in the disease, she is relatively aware of herself. She still feels like herself clearly and she obviously feels competent. The trouble is, she isn't competent to manage herself. When I have to remind her to wash her hands for example, the snarky, somewhat superior responses that issue forth are not entirely unexpected. Her attitude is sort of: "Who are you to be telling me to wash my hands? I'm a grown woman. I know that I need to wash my hands." she communicates all that in just a few words, or better yet, in a look. Who wouldn't do, or feel, the same?

Unfortunately, what awareness she does possess not extend to the point of her not needing assistance with the activities of daily living. The end result is that sometimes she needs help but doesn't want it and I then must spend a lot of time and emotional energy trying to get her to accept the help she needs. That's when helping feels like alligator wrestling. Actually, that's a very apt metaphor. When she's frustrated, bites are entirely possible. So far though, I'm bite free but I don't know how much longer I'll escape unscathed. Even the most practiced and proficient of wrestlers will sometimes come away from the ring with a scratch to two.

Me too!

Apparently I too have a soundtrack to my life.

Got up early this morning because mother was moving about in a way that suggested that something was amiss. I went to make sure that all was well and well, all was not.

Once again we'd responded to our body's call a little too late. As I did the needful, I found myself singing 'Up from the grave He arose'. It's an Easter hymn, one I can certainly hear my old congregation singing lustily on Easter Sunday morn. It ain't Easter yet, but that's the song that was in my head and heart as I dealt with all that met me this am. It's a song about triumph, I guess I was either feeling triumphant (?) or calling on the triumphal Grace of God to get me through my challenge, present and yet to come? Who knows? All I do know is that the singing got me through a messy, messy morning and got me to church on time and in the right frame of mind. I'm not about to complain that the song was seasonally out of step!

Clearly this soundtrack business is a coping tool that we in my family use with some regularity. Thank God for it I say.

Soundtrack

What's in the soundtrack of your life? What kind of music sustains you? Does music sustain you?

I ask because these days, Barbara is humming constantly. Mostly, it's tuneless humming but it's humming nevertheless. Music soothes, both the savage breast and the Alzheimer's patient.

My grandmother, of whom I've written numerous times, loved the hymns of our church. We're Methodists and our faith was born in song. Charles and John Wesley are both the founders of the church and two its most prolific hymn writers. Their hymns are rich and powerful and, if you grew up in the church, they live with you forever.

When we didn't or couldn't go to church, Granny would have church in the living room. Church of the Divine Living Room I called it the other night, when my sister and I were reminiscing about it. We did not like it a whole lot, but it wasn't as though you had any real choice about attendance. If you were in their house, you were going to the Church of the Divine Living Room. It wasn't optional. When my mother and her siblings were children, the same occurred. If there was inclement weather, or illness, or some other issue that precluded church attendance, Church of the Divine Living Room assembled at about 10 o'clock Sunday morning. Heck, in my family we even have a family psalm (Psalm 1) that made an appearance at every home church or other celebration. At least two generations of my family grew up hearing that psalm read or sung tucked in between the lusty singing of some of Granny's and Daddy's favorite hymns....with Granny on the piano of course.

So fast forward now about forty years. Mummy is drifting slowly into the abyss and the soundtrack of her life remains the hymns of her childhood. When things are not going well; when she's clearly discombobulated or altered; when she's diffident or difficult (or downright scary), we turn on the hymn CD. She hums along and calms down.

There are two things I know for sure about AD: first, is that music memory is the last to go and second is that as a consequence of one, music may be the only way to calm a patient when words no longer have any meaning.

So what's in the soundtrack of your life? What soothes and sustains your spirit? For us, it is music that soothes. Thank God for it!


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The family Psalm

Psalm 1

King James Version (KJV)

1 Blessed is the man that walketh not in the counsel of the ungodly, nor standeth in the way of sinners, nor sitteth in the seat of the scornful.

² But his delight is in the law of the Lord; and in his law doth he meditate day and night.
³ And he shall be like a tree planted by the rivers of water, that bringeth forth his fruit in his season; his leaf also shall not wither; and whatsoever he doeth shall prosper.
⁴ The ungodly are not so: but are like the chaff which the wind driveth away.
⁵ Therefore the ungodly shall not stand in the judgment, nor sinners in the congregation of the righteous.
⁶ For the Lord knoweth the way of the righteous: but the way of the ungodly shall perish.

Forward into tomorrow

Yesterday and the day before, Barbara was gone. Completely gone. Empty eyes, vacant looks, hollow, completely unable to do for herself. Today, she's back. the woman I loved (and feared), the imperfect mother returned this morning. As grateful as I am for a semblance of normality today, I am well aware that tomorrow could go either way.

Taking up residence in a place of 'not my will', a place of complete relaxation with life as you find it, has significant benefits. I don't have to like it when she's vacant, but at least when I accept that this is how things go, I can just go with it. As the Desiderata says (that piece of it that most people don't know), "taking this [sic] world, as it is, not as I would have it". This approach has definite benefits and this approach is crucial to surviving the AD onslaught.

And so, forward into tomorrow.

Happy New Year

For reasons I don't begin to understand, I can't tell you one bad thing that happened in 2012. Death and loss are a part of life, so those aren't necessarily 'bad'. They're hard, but not necessarily bad, so losses don't count. I'm still unemployed, but I'm not exactly looking. I'm still single, but again, I'm not exactly looking. And yet, I have my fair portion of good health and strength; I still have the energy to workout hard and the zeal to do so. Those are great things. God continues to give me new thoughts and ideas and just enough courage to try to bring one of those to market in 2013, so I'm grateful for that.


Life has certainly not been what I thought it would, but I'm finding that letting go of what I thought would happen is freeing me to just go with what IS happening. Obviously, what is happening isn't all sunshine and roses, but by Grace, I can and am managing. It ain't about to get any easier but again, by Grace, I can and will manage. The moves planned for 2013 will take me to the brink I suspect, but typically, when you stand on the brink the view is quite spectacular. I look forward to the view.

So here's to spectacular views in 2013. May life take you to the brink and may you be awed by what you can see and can do in the year ahead. To those friends we left behind in 2012, we bless their spirits and carry on in their memory.

The Refiner's Fire

New Year. New Rules. New roles.


The thing that I've recently discovered is that in the midst of the refining process comes a certain peace. Well, you either find peace or pain. The choice is yours. I seem to have chosen 'peace'. Thank God!

Mummy has reached a new (low) plateau. Several months ago, I had said that I was not interested in having to render bathrooming assistance. With this disease, however, you don't get a whole lot of choices. You do what you have to. The choices are: assist or, in this case, wait for some nasty infection that we could ALL get. So, you step in and assist as required.

This morning, B woke up before I was ready to get out of bed, but once you hear her moving around, you really do just have to 'shake your vial' - her expression for get up and get to it - and see what is what. Once I stepped out of my door, I could sense that there were issues I'd have to address. I just hopped to it, cuz, what the heck else do you do?

Yesterday was an especially difficult day but I hoped the challenges would be confined to yesterday. I had hoped that the brain would reset overnight, and things would be more normal today. Well in many respects they are. Mummy was able to feed herself but the toileting problem seems to have persisted. New Year, new rule, new role for me. So it is.

With every change, every negative change, more of me must be refined. I have to learn to roll with it. I accept that there is a part of me that will, and does resist, at first. I typically start out saying that  there is a point beyond which I am unwilling to go, a line I will not cross. Eventually though, I go beyond, I cross the line because I must. That is the effect of  refinement. Do I know where any of this is going? Nope. Do I want to? Nope. Do I want to go where this is going? Probably not. Am I going to go? Yup. Refinement.

Even with all the refinement though, the self remains and with it, its need to be preserved. There really will be lines that I cannot cross. There will be things I cannot do. I'll know them when I see them. I pray. I've recognized them before and I will again. I pray. No amount of refiner's fire, knife at my back, dogs nipping at my heels or whip or cattle prod will push me over them. I pray. My self and its need to be preserved will save me.

I pray.