The Balm in Gilead

Someone just said something really nice to me and I have to write this in response: I am not crazy strong; I am not special; I am not full of grace. I struggle with this disease every day, every hour, every minute.

I love my mother but she doesn't even LIKE me. I am losing my mother but she doesn't even KNOW me. I am sometimes angry and resentful of my mother (and her choices) but those feelings only work when directed at someone who can respond in kind or attempt to deflect them. So what's the point of those feelings, valid though they may be?

I write to save myself and hopefully to save someone else. Is this a blessing or a curse? I don't know. I know only, that I write to save myself, my sanity and maybe, if a blessing is to come my way, I will save someone else.

Too often, we hide. We hide our thoughts, our feelings. Hurt me, and I'll keep on trucking, stiff upper lip Jeeves-ing it. That's how we roll. Especially women. But we know that doesn't really work. My firm belief is that both my aunt and my mother, AD patients both, hid from what hurt them, and it stole them away. I may yet go down that road - genes are a heck of a thing - but no one will be able to say I didn't go down fighting.

I write to expose my feelings to the open air and to find healing of some kind. There is a Balm in Gilead. There is also a Balm in Telling the Truth.

I pray that it heals someone else along the way.

Blessings.
The YouTube clip is Kathleen Battle and Jessye Norman singing, you guessed it, There is a Balm in Gilead. 

http://youtu.be/rZQ-jjhlyFM

The Before

One of the hardest things about AD, is the personality changes. People change, sometimes drastically. The charming may become vicious, the loving may become unlovely and unlovable. For some, the changes last forever, for others they are but a phase.

Some years ago, my mother became this person who clearly did not trust me at all. If I said, "Go North", she would go South. If I said "Save", she would want to spend. So it was. You have to learn to deal, and to not take it too personally. Nowadays, she looks at me with something akin to disgust but I get that. Kinda.

The reason all this is on my mind today is that I'm wondering when the end comes, what do you grieve? Do you grieve for the original version of the person or the version 2.0? I'm trying to figure that out.

My aunt who also had AD, has just passed and it is only now, in these moments of reflection, that I can remember the before. In the middle of it, in the middle of the ocean of caregiving and worry and money and bills, the personality changes and the suspicion, you have no time to think about the before. At the end however, all that comes to mind is the before.

So here's my remembrance of before:
My aunt, like her aunt before her, was a singer. Auntie Elma, my Granny's youngest sister had, family lore says, a gorgeous nightclub singer voice. I don't know that Auntie Elma ever sang professionally but the story of her gift is very much a part of family lore.

My aunt CMM, Mummy's younger sister who left us yesterday - August 30, 2012 - was also a gifted singer. She started out as a church singer. She got the nightclub bug probably while she lived in London in the sixties and seventies.

Aunt moved back home to Trinidad in the mid-seventies and worked first as a legal secretary. Sometime in the eighties, she went to Parliament where she worked as a Senate recorder. She was a palantypist. They are the folks who do verbatim recording of  court and, in Trinidad, Senate proceedings and then later transcribe those notes for the permanent record. She was very good at what she did. Very good. Outside of the office, she loved her church - Belmont Methodist Church, Belmont, Trinidad - and she loved her singing, yes, in the nightclubs.

When she first came home, I discovered 'hayfever'. She sneezed constantly. Who knew that there were allergens in the air in Port of Spain? I certainly didn't. Staying at Granny's on the weekends was all the cooler because Cynthia was there. But all of that was before the inevitable and strange personality changes: the hiding of canned food in the cupboards; the resistance to any suggestions about the family house; the intransigence about pretty much everything. The real break for me came when she asked me to return to her a jacket she'd given me several years earlier. Of course, I no longer had the garment and, knowing nothing about the journey upon which she had embarked, I just thought she was mean-spirited. How wrong I was!

So I wonder again: for whom do we grieve? Version 1.0 or version 2.0? Version 2.0 got me so angry in March 2006 while I was there on vacation, that the top of my head newly flew off. But again, personality changes; part of the journey. Didn't know.

What I do know is that from that time, I started taking steps back from her. Isn't that inevitable? When she asked me to return the jacket, I took a step back. When we discovered the canned food in her wardrobe, I took a step back. Every time something jarring occurred, I stepped back. Now where am I? I'm so far back, I can barely see her and yet when I was at home two and a half weeks ago, it shocked and pained me to look at her. She was a shadow. She certainly wasn't the CMM who would play Monopoly, whist or turn down poker with joy until 1 in the morning with her pre-teen nieces and nephew.

This is a miserable disease. It robs you of the present, and, if you don't know better (which you don't at the beginning of the process), it causes you to rethink the past as well. Fortunately, in grieving there is sweet remembrance, usually of mostly the good stuff. Funny how the bad stuff falls away eh? Maybe we should push that stuff away and consign it to the outer darkness? That's probably where it belongs.

Still, the loss is hollow. What have I lost? Who, have I lost? The whole relationship got so torn up such a long time ago that I no longer know truth from fiction.

This is a miserable disease.

Some things are just NOT OK

I'm still on a writing break but I have to write this..........

A few days ago, I wrote about the challenge of being pushed to the floor. The back story on that post is that my mother used to talk a lot, when we were children, about folks who spent their formative years, sleeping on the floor. That deprivation, she felt, caused many of them to work very hard and to succeed. In my post "Buddup!", I talked about how on my last trip home, I had slept on the floor. Certainly, my bedding down upon the floor was a choice, the space being our vacant, unfurnished apartment, but that choice gave me the opportunity to think about how easy it would be, given the financial challenges of long-term care giving, to end up financially 'on the floor'.

Imagine my surprise then when, having explained all that and my various earlier postings about the need to make an end of life plan, that someone would respond thus "I am sure that like their ancestors before them these children will be quite capable of getting themselves up off the floor. Our ancestors had nothing and did pretty well considering. It is when we wait on the good fortune of others to lift us up off the floor that we miss the opportunities that are right before us. Instead of looking backwards to see what others have garnered for themselves in hopes that some of their crumbs may fall our way, we need to look carefully to see what we have in our own hands and use it well!" Emphasis mine.

Where to start? Let me just give you three quick insights I drew from the comment.

1. I was surprised by the subtext of this comment. It seemed to suggest that it was OK, as a parent, to push your own children to the floor. As I have often pointed out in my writings, I sought to prepare my mother for this pass. She ignored me. Roundly. And so, here we are. Me especially, paying with everything I've got, for her refusal to do the needful. That's not OK and I am not going to say that it is. She was lucky enough to have a business major in her family, who could have taken her small savings and turned them into something better. She chose not to. That might be fine if only she ultimately paid the price. But we all know that's not how family works. So I say again, cannibalizing me is not OK and I am not going to say that it is. Someone has to be willing to speak that truth out loud.
   
   
2. "It is when we wait on the good fortune of others to lift us up off the floor that we miss the opportunities that are right before us." Clearly, this is a new reader who has no real understanding of where I'm coming from. "Waiting on the good fortune of others" to lift me up is not in my make up. And even if it was, "others"? This is my mother I'm talking about, a custodial parent who by definition (one hopes) wants only the best for their child. By her unfortunate choices, Mother has put me in the terrifying position of being unable to work outside the home. She has no idea who I am, but I know who she is, and who I am and I cannot just walk away and leave her to her own devices. Being put in a position where I have to choose between self and another is not OK, and I am not going to say that it is.
   
   "Waiting on the good fortune of others"? I'm not talking about leaving my career for some stranger who I have some mercenary hope will pay me back. This is my mother who, again, on account of ignoring the warnings I gave, has taken opportunity from her children and potentially her grandchild as well. When did that ever become OK? I must have missed the memo. Memo or no, I say it's not OK. Not when the information to change your future is right in front of you. It's not OK and I am not going to say that it is.
    
3. "Instead of looking backwards to see what others have garnered for themselves in hopes that some of their crumbs may fall our way, we need to look carefully to see what we have in our own hands and use it well!" Again I say that this has to be a new reader, who doesn't get where I'm coming from. Let me therefore spell it out clearly. I look for no crumb...unless the ability to go out and earn a living that exceeds the cost of care is considered a 'crumb'?

A long time ago, right at the front end of this journey, a counselor advised me that if people weren't taking my advice, what I should do was establish a dollar figure that I was willing to contribute to the costs of care and stick with it. She said, "Look, if people are unwilling to hear you, when the time comes just say, "This is what I can afford" and leave it there." For various reasons, I haven't done that and it'll never happen. But having chosen to do something else, I'm really not expecting anyone to lob accusations of "waiting for crumbs to fall my way". "Crumbs"? Sister, you have no idea how many late nights I stayed up working on my B.Sc and later my MBA. Believe me, I need no one's crumbs. I am well able to knead my own damn dough but that's a little tough to do when you can't afford the flour eh.

Perhaps my post was inarticulate, it's been known to happen. Perhaps I was unclear in my communication, a real possibility. Hopefully, I've been clearer here. This is my public service, as it were. Don't do as we did. Judge me and the choices I've made. Judge my mother and the choices she made, feel free but please for the love of Heaven, don't just sit there and do nothing.

As for presuming that I'm trying to coast on my mother's success rather than eking out a success of my own, well, I've got the papers that indicate that I had every intention of making my own way until Alzheimer stepped into my way. Walk a mile in my moccasins and then come talk to me.

"Buddup!": that's me, hitting the floor

When I was young, my mother would often talk about the people who spent their childhoods sleeping on the floor. They, she would always say, were the focused ones. They were the ones who worked extremely hard and came a long way socially and economically as a consequence. I'm pretty sure she also said something about them never stopping their quest for wealth but I would be lying if I said I remembered anything specific. I can only say that she did harbor some disdain for those who started on the floor but never lost that hunger, those who, according to her, didn't know the meaning of the word 'enough'. Well, I have news for her, there's a reason the quest is never ending and I'm livin' it.

When I went home this last time, I slept on the floor. True enough, it's a vacant apartment so it's got no furniture, but I did sleep on the floor and that experience brought her words to mind. Having had a certain epiphany (a creaking back will do that to you), let me just say this and then return to my vacation from writing: it really doesn't take much to push your children right from their comfortable perches on their lovely Tempurpedic beds right back on to the floor. One prolonged illness is really all it takes.

By choosing not to have the end of life discussion; by choosing to have no plan for her late retirement years; by roundly and consistently ignoring every recommendation, this is what my mother has done. I realize now that if I were to choose to leave where I am now because it has become difficult to be here, I would have two choices: return home to the house with no furniture (and sleep on the floor for at least a little while) or well there is no 'or'. Obviously, I'll take the floor. But there I would be, on the floor. This is what no plan looks like: your beloved children for whom you have sacrificed so much, on the floor.

The floor represents many things: unpaid bills; debt collectors calling; home foreclosure; credit score in the toilet; car repossession; loss of face; job loss on account of financial difficulties. The 'floor' could be any negative consequence of the financial chaos of long term illness. For me, the floor is actually the floor. And let me tell you that at 40, the floor is a real problem.

Perhaps this sounds extreme. Perhaps this sounds as though we've been wastrels with funds. Nothing could be further from the truth. I have been known to hold a penny so tight that the building on the back creaks under the pressure. I don't waste because I don't know how. But when care costs are significant and they keep on coming, there really is no 'enough'. All that works in a situation like this is 'plenty', with 'plenty more' coming in tomorrow and tomorrow.

My family is part of the middle class in the Caribbean that's been middle class for several generations. My generation is the fourth generation of home owners. And we're Black and from the Caribbean so we're the descendants of slaves who some time in the 1800s, one generation after Emancipation, moved into a very large home of their own. I don't know how it was done, I only know that my great-grandfather, born in 1873, married and put his wife into a home that they owned. I know also that it was a sizable home because they had 13 children - and they weren't stacked to the roof, Granny would have told me - of whom my Granny was second. So we've done pretty well for a longish time, but clearly that was just dumb luck because we didn't have the good sense to secure our benefits and lock them in for the next four generations.

So let me ask this: should your situation unravel completely and your children end up on the floor, what next? How do they get off it? Any thoughts? I'd wager that it would be easier keeping them ON the bed in the first place, than trying to get them OFF floor later. Just sayin'.