Ice Age

I realized the other day, that my heart is encased in ice. On reflection, that isn't really that surprising, but at the time that the realization came, I really hadn't thought about it overmuch. I hadn't needed to.

Now that Mummy is being cared for by professionals though, I must find a life. That's not nearly as easy as it sounds. It means that, for good or ill, I now have to allow my emotions to be engaged in other ways than just worry (about Mummy; about money; about what next; about when I'll get to go back out into the world). For that to happen, I've got to bring the emotions, the heart, out of the deep freeze where apparently they (and it) have been stored for some months now.

Unfortunately, there are no road maps for this part of the journey either. Just as there were no road maps for managing the finances; managing the emotions; managing the decaying relationships in the active caregiving phase of this journey, there are now no instructions for how to get back into the world.

I don't have anything to offer by way of advice having only just embarked upon this phase of the journey myself. I'm just making things up off the top of my pointy head. All I've got so far is this: I have to take my time. Thawing is typically a slow process and to try to rush it, to force myself to be ready for new emotional journeys before I actually am ready, is to put myself in a place I have no business being.

I miss my mother. I expect to hear her sniffle upstairs or to come down the steps any minute. I am alone much of the time and yes, somewhat lonely and therein lies the danger. I am that much more likely (on account of the loss) to leap into something inappropriate and unhealthy (or at least unhelpful) because of my state. Leaping when ill-prepared is a recipe for disaster and I'm not just talking about love relationships either. Business relationships, new friendships, any kind of 'relationship' right now has to be scrutinized very carefully. One's ability to clinically assess is compromised, I believe, when one is or has been under a protracted period of stress. Heaven knows, I don't feel well prepared to make any hard decisions. The hardest decision I've been able to make in the last few weeks was a car buying decision and I did that with help!

So now, I must learn to trust myself and my decision-making abilities again.

I remember years ago after having emergency surgery, I found that for months afterward, every twinge my body gave me was cause for me to call the doctor. I eventually had to explain to him that I simply couldn't trust my body, and had to rely on him to tell me that I was OK. Who does one call in situations such as mine? There's no doctor of the self-confidence. I suppose there's counseling, but I'm not entirely sure that that's what's needed here. I have a feeling what is needed is time. Healing cannot be rushed.

Somebody really needs to write a manual to go along with this journey. Tramping this ground alone and without any kind of guide or aid is dangerous business.

The Warehouse

I've been away from writing for a little while because Mummy was in a rehab facility. I've been wanting to write about it, but couldn't. Now that she's moved out, I can. I didn't like the place at all. To be truthful, I hated it. It's a warehouse.

At the risk, of having someone sue me for maligning their facility, I won't offer any descriptors of the place that might expose its identity, but let me be very clear: I hate it.

What's wrong with it? Here's the short list:
There were 32 or 33 dementia patients in a single space. There were maybe 5 or 6 staff working per shift. If you do the math, that's five patients or so per staff member. Patients have vastly differing needs: some need to be fed while others can feed themselves; some need bathrooming assistance, others are more independent; some patients are mobile, others are not; some have 'behaviors', others do not. Given the range of abilities and challenges, having only six staff per shift means that patients' personal care needs are being met in the most perfunctory way.

One of the things that Mummy got while she was at home, was time outdoors. This facility hasn't even got a garden into which the patients can be taken for fresh air. Mummy is also now in a wheelchair, so the whole question of going outdoors is no longer entirely in her hands. Moreover, AD patients are typically kept in locked units, so going out is controlled by others but in a situation where there are five or six GNAs (geriatric nursing assistants) to 32 patients, you can be sure there will be no time outdoors. Fresh air? She gets that when I go to see her. Not good enough.

Of all the things that offended my sensibilities, it was the cavalierness (is that even a word? Yes it is, I just looked it up) of the treatment that most offended me. There seemed to be no sense that these patients were still (oh the horror!) people, in need of mental and physical activity that would allow them to retain what remains of their minds. It's all well and good to say that it's hard to do, I know it is, I've tried to do it. The mere fact of its being difficult however, is not reason enough not to try. One Wednesday, I went to visit only to find my mother, along with the other patients, parked along the walls, gazing at nothing. The television was on, but some vapid thing was playing. The TV was clearly for the entertainment of the staff not of the patients. The GNAs and CNAs (certified nursing assistants) didn't seem to be overly troubled by the emotional, social or psychological needs of the persons in their care. Surely, we can do better than this? I have to believe that there is better out there somewhere.

What troubled me especially, was the idea that for this the federal government spends thousands and thousands of dollars each day. Mummy's daily rate was $237. That is in excess of $7,000 a month. For some, that is paid for by a combination of Medicare/Medicaid dollars and Social Security. For some, like Mummy, it's 100% self-pay. But friends, if I'm paying - either out of pocket or through federal government assistance - oughtn't I get some value for my money? Surely, at that rate, that is not too much to ask? Surely? I know, I'm given to asking hard questions but surely some value for my money should not be an impossible request.

I strenuously object to the notion that older people, especially sick older people, should be treated like a pallet of bricks or a load of wood awaiting transport to the nearest construction site. "Just park it over there!" That is NOT good enough. My mother has taught too many people; engaged too many minds - mine included; contributed too much to human society, to be treated thus. It's not good enough for me and I'm pretty sure, even if others' parents haven't done great and marvelous things for others, they did great and marvelous things for their families. It's not good enough for them either. This is not good enough. I don't know that I have the capacity or indeed the energy, to follow up and complain to whomever needs to be complained to, but this is simply not good enough. It is an obscenity, made all the more obscene because these people have all paid for this care upfront through their income taxes. They are people and should be respected until they take their last breath, no matter how hard that is to do.

Anyway, it matters not. Between the time I first started writing this entry more than a week ago, and now, Mummy has been moved. We're somewhere else. Somewhere, where, upon arrival, she was greeted with warm smiles and a "Welcome Home!"

Now that, is what I'm talking about!!

Riding the (sine) wave

This stage of the journey is a roller coaster ride or maybe it's just a seesaw. Perhaps a better descriptor is a sine wave. Whatever you want to call it, there are ups and downs, a good many of them. Sometimes the plummet from high to low is so rapid, it takes your breath away.

When we moved Mummy to the facility in Bethesda, that was an especially low downswing. The facility wasn't home, obviously, but it didn't even seem like they were trying to make it homey. Ugh.

Then there was Mummy's obvious confusion and her plea, "I would prefer to go with you." This from a parent who never expressed a wish to be with us, was hard to hear. It was hard to watch her resignation at the thought of being left behind but this is what it is and where we are.

On the upside of the wave however, I spent the day with an old friend and I bought myself a car. It was a good day. It wasn't a mountaintop high kind of day, but it was a good day. Every day that I'm able to do something for myself, something that brings me back into the world I have had to leave for the last little while, is a good day and I'm very grateful for it.

Later today, we will go out to the facility to see Mummy. I've no idea how that will go, but I have my fears. Fortunately, there's a move to a more permanent setting in the offing, so I live in hope that we can effect that change soon-ish, before any deterioration of mental faculties has a chance to take place. That move will upset Mummy again (down we go on the wave) and will likely leave me in tears again (down a little further on the wave), but it will be for the best. I'm pretty sure I'll find something to get me back on the upswing.

As Mummy settles in to her assisted living space and gets in to a routine; as I get in to a routine of my own life and my own projects, I pray that the sine wave will stretch out and rather than these frenetic ups and downs, we will have longer ups and slower (and shallower?) downs.....at least for the next little while.

It's not guilt but it is something

Today, we moved Mummy to the intermediate facility before her move to Assisted Living. Let me just say that the moving business is really rather painful.

Not too many days ago, I posted in Powerball or Bust! that one of the key tests one has to do when selecting a facility is the sniff test. Does the place smell? Well, we were being hastily moved from the rehab hospital to this new place, so no time was available to do a site visit. Upon entering the locked ward for AD patients, I discovered, to my horror, that it smelled. Already, I knew this was the wrong place for my mummy. Strike one.

There are lovely nurses there. Folk smile and talk to patients as though they are still human. These are good things, but clearly there are patients for whom patience has worn thin. I heard one caregiver telling a patient that she didn't work for him. Now, I know not what precipitated that exchange. I know not the history - cuz there's bound to be some kind of history there - but those things aside, the response and the tone were inappropriate. I was not impressed. Strike dos.

Then, there's an issue with her drug delivery. Mummy's eyedrops are delivered thus: blue capped bottle, one drop each eye, twice a day. That instruction got thoroughly mangled at Doctor's Community Hospital and turned into two drops, both eyes, twice a day. The second drop (mint green capped bottle) is delivered thus: one drop, right eye only, once a day. That got mangled at DCH or Laurel Regional and became one drop, each eye, twice a day. What is annoying about this, is that I SHOWED THEM THE DAMN BOX at Doctors'. The instructions for how the drugs are to be administered are on the damn box. Why y'all doing it wrong? Do you  not care?

Given that I've been doing Mummy's eyedrops for about three years, I'm really not feeling this crazy 'let's just slap that crap in her eye' approach to medication. What else are they doing equally slap-dashedly? I shudder to think.

When your people are at home, you know when and how medications are being delivered. When your people are in the care of others, you have to hope and pray that people know what they're doing and that they're doing it right. In this case, they aren't. Strike three.

More than all of that though, is Mummy's aloneness. My mother is at sea, in a leaky boat and there is no one nearby on whom she can call. There is no one who knows anything about her, no one, quite possibly, who even cares. While at home, Mummy's routine was fairly simple. She slept a lot when she was alone with me, but when Ms. Rosa came on M, W and F, she went walking, she did puzzles and she and Ms. Rosa read. When she was hungry or when she was called, she would come to lunch. When she was agitated, I would put on the music that we know she always loved and that would bring her momentary peace. For Miriam Makeba's birthday this year, I gave Ms. Rosa a Makeba CD and they listened and Barbs sang along. The problem with this new facility is that no one there knows her, nor indeed do I imagine, is anyone going to try to get to know her. Strike four. There will be no Miriam M when she is distressed in the future.

It is this last that pains me most. I cannot care for my mother any more. Her needs now exceed my capacity and though I feel no guilt about having to place her in the care of strangers, there is something that I do feel. I think it must be despair.

She is a human being. More importantly, she is MY human being, and there are things that she deserves. She deserves to by cared for by people who know at least a little bit about her. Ms. Rosa knew her. She could make her laugh. She could get her to talk. There is no one at this new facility whose job it will be to draw Barbara out. Whereas Rosa could coax Barbara into a bath even when BIM didn't want one, I don't know that there is anyone with the capacity or time to coax Mummy into anything.

This is a delicate time in her life as she nears the end of the road. Surely she is entitled to coaxing; to shared laughter; to Miriam Makeba or Edith Piaf when she is distressed? Surely she is entitled to have her eyedrops done the right way? Surely she is entitled to affection and shared history? Surely she is entitled to something? Unfortunately, she didn't make a robust enough retirement plan and now, well, she may be entitled but we can't pay for it.

I don't feel guilty but I do feel sad. What's she's getting is so much less than she deserves but there is nothing that I can do to make it different.

Mea culpa Mama. Mea maxima culpa.

Powerball or bust!

We are now in the search for a facility for my mother. More big fun!

First up for consideration: does the place pass the sniff test? It may sound crass, but it's a critical test. If the place smells of urine or worse, you can be sure it means that some resident or residents aren't being changed with sufficient frequency. This means that your loved one will join the ranks of those not being changed with sufficient frequency. Can you live with that? Didn't think so.

Next, we must consider the availability of needed services. My mother's needs changed rather dramatically three or so weeks ago, whereas before May 6, she was quite independent, since May 6 she hasn't been. She now needs 24 hour care and supervision. So it is with this aging, things change in a heartbeat.

As we seek out a place, we have to ascertain whether the organization under consideration has the staff capacity to support Mummy's needs. Can they do it? What will it cost? The matter of whether or not, and how well they'll do it comes later. First you have to know whether they have the capacity to do it at all.

Third and finally, we must consider the cost. One place that was recommended to us costs a whopping $8,300 each and every blessed month. Now, I don't know about anyone else's retirement planning, but Mummy's does not run to an extra $8,000. Does anyone's? I would be intrigued to know how the folks currently resident in that facility are paying for it. Were they all independently wealthy? Oh, and BTW, that eight grand?, that's the starting price. Memory care units typically cost more. Yup.

Having heard some of the numbers, I have determined that all my advice is BS. Don't get long term care, don't save, don't try. It's pointless. There is no earthly way you can manage these costs unless you're independently wealthy. There is simply no way.

Certainly, the LTC plan will take the brunt of the hit. LTC will take the sting out of the price tag but it's still going to hurt. Plenty. Even so, LTC plans have upper limits. They are not inexhaustible pools of capital that go on as long as life shall last. When we first started claiming against Mummy's policy, every payment statement that came to me contained the following line at the bottom, "You have used up $x,yyy of your $xxx,yyy lifetime maximum." True, it is a six figure maximum but if you go to a place that costs $8,300 a month, $xxx,yyy will run down to $0.00 right quick, I am here to tell you.

So I think I've changed my mind. Don't do anything. Don't save. Don't buy clothes on clearance (as I do). Don't scrimp and squeeze the pennies. It's pointless. Unless you're rich, you cannot manage.

Starting from my next posting maybe I'll give advice on how to win the Powerball because it really looks like that's the only way to make this thing work.

Two weeks

Less than two weeks ago, I was writing in Gentlewomen, start your engines with great excitement about starting over. I had the energy, I had the verve, I had the plan. I was ready to go. That very weekend, my mother had a medical emergency. Today, less than two weeks later, my mother has been in hospital for 10 days and has now been moved to a rehabilitation facility where she will reside for the next two weeks.

My whole life, like the proverbial applecart, has been upended (again?), tip tilted (again?), spilled like so much milk all over someone's clean floor, all in a little less than two weeks. The appropriate Trini word would be 'kilkitay', meaning turned entirely upside down.

The best laid schemes of mice and men, they say, often go awry.

Repertoire

I had a lovely conversation with a guy last night. At the end of the conversation he said to me, "Thanks for calling, I really enjoyed our conversation." Now that may not seem like a big deal but given the newness of our connection, his obvious enthusiasm about our time on the phone was really quite nice to hear. I hate to admit it but, I felt kinda awkward about responding. I didn't really know what to say. And then it hit me: for all my efforts to grow and change, my repertoire (of responses to such unexpected kindnesses) is still limited. My childhood experience of unexpected kindness being what it is, sweetness of this kind from someone close to me is a surprise. And yet, with my mother in hospital, I find myself touching and kissing her, offering kindness to her in ways that would not have occurred had she still been at home, in ways that she didn't during my formative years.

Growing is a terribly slow process. Sometimes it takes a crisis to cause the seed coat to burst and new life to spring out or some great deluge of emotion to bring the walls we build around ourselves crashing down. So here I am: the crisis has occurred, the deluge has come and I find myself kissing the woman who only kissed when we were boarding planes; and touching the woman who rarely touched; comforting and quieting the anxieties of the person who pooh-poohed my childish fears.

It's sad that it takes crisis to broaden our emotional repertoire, but does it matter really why it happens or that it happens? I'm going with 'that it happens'. My uninformed guess is that 'that it happens' trumps the 'why it happens' every day. It seems to me that whether you accept yourself and others at age 2 or 2 minutes before you take your last gasping breath, all that matters is that it happens and healing can occur.

So my repertoire is growing. Given that it's still new repertoire (to continue the music metaphor for a moment), sometimes I perform it well, sometimes not so well. Sometimes, the notes sail forth easily, other times, *croak, croak*! The skills are still being learned and honed and are therefore frequently unreliable in their application. That's OK too. As my choir director used to say, "It's not practice that makes perfect, it's perfect practice that makes perfect". So here's to perfect practice of my new emotional repertoire of touching and kissing and saying "God loves you and so do I" with my mother, for many, many days, weeks, months maybe even years, to come. And here's to trying it out with others as well.

The Back Story

Like everyone else, I have a back story. Here's some of that story..........

When I graduated high school, I was headed for university. I had no idea where I was going, but I was going. Lucky for me, Mummy had a friend who was a former high school counselor and she was willing to help. Arlene encouraged me to consider schools in the US. There was no money laying around waiting to pay those bills, but Arlene suggested I get all the requisite books and look at school profiles anyway. I took her advice and after much reading and research, I hit upon a number of schools that looked good: Vassar College; Barnard College; George Washington University; New York University. I was accepted at VC, GWU and I think NYU. Barnard said "No thanks!"

There was plenty of joy at my acceptances but that was tempered by a whole lot of reality too as no one had offered me a penny. My mother, yes the same one I complain about, second mortgaged her house to pay the first year's fees and she made a verbal agreement with my father that he would pay for years two through four. Given that he'd barely contributed much to our education to that point, it seemed like a fair deal.

Well, to keep this simple: my father flaked out. He paid part of my first semester sophomore year fees but not all. He was also to apply for my permanent residence (the famed green card) so that I could apply for loans and such, but refused to do so. At the end of the first semester of my sophomore year, I had no choice but to withdraw from Vassar College. My mother couldn't pay and my father wouldn't/couldn't/didn't. Worse still than his failure to keep his word, he never apologized, never sought to explain, never sought to say what went wrong. His breaking of his promise changed me. I am not ashamed to say it. He took my dream and spat on it and in so doing, he changed me and the trajectory of my life.

When I left Poughkeepsie, I moved to DC and into his house. That was an experience. I lived on 13th Street NW, in a fabulous 3 storeyed row house.  There were 2 or 3 dobermans living up on the third floor, barred from coming downstairs I don't know how. I lived in mortal fear of them escaping and tearing me limb from limb. No joke. The dogs lived on the third floor, the mice and I lived on the second. The first floor comprised a sitting room that looked like a room that could be featured on an episode of Hoarders, a bathroom and Heaven only knows what else.

The house had no heat and was largely unfinished and unfurnished. It was a fixer-upper but no one was fixin' it up. I lived in something approaching squalor for 3 or 4 months, and again, I am not ashamed to say, it changed me. By the time I left there, I was deeply depressed and 30 pounds heavier than I had been when I arrived in this country.

Fast forward 25+ years. On Monday, my mother had a stroke and was hospitalized. Among all the calls we've had to make, we've had to call our biological father. This morning, he called us back and then called again, at around 10:00. He wanted to know where Mummy was and whether she's allowed visitors. "Is she recognizing anyone?" he asked, "Because," he went on to say, "she didn't recognize me in November." And then, and then, he wept. That I could be kind to him, that I could extend any kindness to this person, given our history and the real damage his failings did to me personally and professionally, is a sign that I'm evolving.

We are all broken in one way or another. If we are very lucky, we will find opportunities to be mended or to mend ourselves. If we have good sense, we find, we take the opportunities that life presents us to grow and be changed. Maybe with all that's been going on with Mummy, I've found my way to forgiving not just Mummy, but him as well? I make no promise to be better with everyone. There are a few people that I'm still a long way from forgiving but Lord willing, I'll get there.

These two people were broken people, just like the rest of us. They had hurts and in their emotional immaturity, they ended up hurting each other and their children. Not unusual. Maybe I've got to a place where I can see past their shortcomings to the person - the lost child? - inside and give them the love they need and deserve from me? I've no idea. All I know is, it feels pretty good to be able to be kind to someone who couldn't quite meet my needs. This doesn't feel like martyrdom, it feels like maturity and it's a pretty good feeling.

12,052 days of deep and abiding

I had my grandmother for 32 years, 364 days. That's 12,052 days in total. She died on 16 September, one day before I turned 33. Now, several years later, what I thought of then as the torture of caring for her at home, has returned in the challenge of caring for Mummy.

There are significant differences however. I adored my Granny. My Granny adored me. I never had to guess where I stood with her. When she was disappointed, you knew. When she was proud, you knew that too. But whatever the temporary state, it was overlaid on a bedrock of deep and abiding love. She loved you. Loving was what she did. It was who she was.

My mother on the other hand, well, she's never said the words (neither did Granny). Unlike Granny whose entire being bespoke love, Barbs was not like that and of course now, she can't be.

What I now know, is that the journey, the torture of caring for Granny at home, prepared me for the journey of caring for Mummy at home. What I know for sure is this: caregiving is a learned behavior. It is not natural. Don't let anyone tell you that it is. 

What I learned about caregiving, I learned at Granny's beside. There I discovered that what is painful is made both more so and less so, when viewed through a prism of deep and abiding love. 

Ducks

Here's today's advice: Please get your legal ducks in order. I'll tell you why. When you have to call 9-1-1 and you get to the ER, you want to be able to have the right to make the hard decisions. You don't want to have to be tortured about these things.

On Monday, when we were getting ready to head to the ER, the  last thing I did before leaving the house was to go to the library and pick up the envelope of all the necessary documents: Advanced Directive; Durable POA; Medical POA.

Thirty or so minutes later, when I whipped them out for the Admissions Representative at the hospital., one of the EMTs who had brought us in said to me, "I have never seen that before!" because I guess most people don't have these things in their back pockets.

I get that doing the needful may seem gruesome or ghoulish or some other negative thing, but can you imagine how much worse this would be if we didn't have the power to make the decisions that might need to be made?

Let me be clear: she's my mother. I want her alive. I want her well. I want her to remember me so I can fight with her about all the things she didn't do and she can curse me out and tell me about all the things that she did. But what I want ain't necessarily what I have. What I have is what I have to deal with. That meant that in 2009, upon realizing what we were dealing with, calling an attorney about getting the critical documents done. Back then, we understood that she was as well as she was ever going to be again. We knew the trajectory of this disease and truth to tell, I'm not a delayer. "Get it done now and never have to think about it again" is my modus operandi. We did the needful then and now, we can do what must be done on her behalf. Tough decisions already made. No angst or hand-wringing required.

My recommendation: make the hard decisions before you need to make those decisions. Life is much easier that way.

This is the real world folks. It ain't always pretty.

Gentlewomen, start your engines!

It's pretty clear I'm going to have to start over. Once this phase is complete and Mummy's transition to a new home has been effected, I'm going to have to start over. This doesn't really surprise me. What does surprise me is how I feel about it.

My guess is, and I can only guess since I've never been divorced, it's like getting divorced: new home, new life, new friends in some cases, new start.

I'm going to have to rebuild my personal, professional and financial selves and it's likely to be a lot of work but it seems I'm one of those people who like a challenge. I'm in the fortunate position, I suppose, of having the grit and the graduate degree that may facilitate my efforts a brand rehabilitation, but I still expect it to be a long hard slog. Still, I'm ready. I may even be a little eager. Who woulda thunk it? I've already caught my second wind.

A couple of weeks ago, I thought I was losing my mind, but I'm back now. I was under far more pressure than usual because I have so many pots on the fire, and they were all just that one step before boiling point. The wait was interminable! But thanks be to God, pots are finally bubbling. The meal should be ready any moment now.

Thank you Lord! I'm not sure I could have held out for too much longer. So now, let's get this started. I'm ready to start over. I'm even a little excited about it. Yeah, I'm ready. Let's go!

The End......

......is nigh. I see that now.

Let the grieving begin. No, Mummy isn't fading away, lest you think that's what I'm saying, quite the contrary. Rather it is that the time has surely come for her to be put into a facility and even though good sense tells me this is what must be done if I am to survive, that makes it no less difficult.

This has been a long and hard journey. I've said on more than one occasion that my mother was not loving. I perhaps have avoided using those precise terms, but that's what I've been trying to say. I have developed a great deal of respect for how hard it must have been for her to have these kids (who would surely need tertiary education which she couldn't afford) to feed, clothe, shelter, educate and help self-actualize. Did she do it perfectly? Heck no. No parent does. Did she do it well? Well, she did it well enough I suppose. I can write in complete sentences. I even have a couple of degrees, my sister has three and my cousin who lived with us for several years has 2.75 (he's 'All But Dissertation' on his doctorate), so clearly she did alright in that sense, but did she love us as we ought to have been loved? I'm going to give her a "No" on that one, but she did the very best she could. That absence, that lack of affection has naturally informed how each of us has dealt with this current pass and it has not been easy. As I said in an earlier post, I have chosen to bend emotionally, lest I break.

The fact though, that one's parent is emotionally withholding or emotionally inept, does not necessarily make the anticipation of permanent separation any easier. Perhaps it makes it easier for some, but it doesn't make it a lick easier for me. For some reason, it's harder. It is not that I hold out hope of miraculous healing, or that I hold out hope that she will one day look at me with the love that my grandmother did. Ain't gonna happen. And still there's something I'm waiting for I think, though I have no idea what it might be: recognition; acknowledgement; respect; admiration; any or all of the things every child wants from their parents at least once before they die? Yeah, well, ain't none of them on the menu here so I just need to get over myself, but pragmatism will only carry you so far. There are places that only emotions can go and the parent/child relationship is one of those places. Because I have chosen to open myself up to this process emotionally (rather than stay on lock down as my mother taught us so well how to do), here I am today grieving for the mother who never showed up, and who is now never going to.

It pains me to watch her blankness. It pains me to have her look at me with either disdain or just a complete lack of recognition. Those seem to be all I can get out of her. I get that it's the disease but still. Let the grieving begin.

I don't know how anyone else does this. I only know how I am doing it. For my friends who think that sharing these thoughts is damaging to my professional 'brand', I suggest you not worry about it too much. I don't want to be on TV as the resident Alzheimer's Disease survival expert, but there are things that have gone on here that needed to be aired out. If I had had to live with this without airing some of it, I would not have survived.

So let the grieving begin. My sister has found a place for Mummy and presumably within the next month or two Barbs will be moving to it. It's been a long, hard journey, made all the harder by the internal and external pulling and tugging. As you might imagine, this has not brought great peace to my household or to the people in it.

So let the grieving begin. Let it begin, let it continue and one day, God willing, let it end in peace and joyful remembrance.

Amen and amen.

I am my own Joseph

So there were tears again last night. At this point, I'm journaling these events so that I can have an accurate count of how many times this occurs in a month. April = 1. So far. The value of keeping a count, I know not, I just feel like I should know that in March I wailed in my sleep X number of times. Like I said, value, questionable but I'm doing it anyway.

Some weeks ago, when this happened, I wasn't sure what the trigger was. Today, I'm sure. I have received within the last two weeks, three different communications that clearly indicate how I'm destroying my professional and personal selves in this process.

Last night, after a quick one-two punch of events, I went to bed thinking myself in control of my emotions. Hahaha! I don't even know why I think that any more. It's quite laughable. At some point in the middle of the night, the truth came to light and I had a dream about being carjacked, at gun point. I was begging for my life. I was shot, in the hand while I held my hands up in surrender. The bullet went through the middle of my palm.....similar to the way the nails pierced Christ's flesh. NO, I'm not suggesting martyrdom, or at least, I don't think so. I'm just reporting the dream.

It does not take an advanced degree in Psychology to understand that dream. Nor indeed, do I need to be Joseph with a technicolor coat (son of Jacob and Rachel from the Bible) to get the reference here. Carjacked? Yup. I could see that. Some days my life certainly feels like it's been 'jacked. Maybe I 'jacked it myself? Maybe I've just given in to the circumstances and therefore am responsible for the 'jacking by not trying hard enough to chart a new path? I have no idea. All I know is that these days after nights of tears are always rough. Today is no different. Meanwhile, Mummy's doing fine. Thanks for asking. :-)


For those who don't read the Bible or don't know the story of Joseph......
Joseph came to power through his ability to interpret dreams.

Keep silence

Some people are inclined to play their cards very close to the vest, especially when the things we need to say are not happy talk. "Don't talk about that, people will judge you!" Many in my situation would never speak. And I know it's a potentially dangerous thing to speak, but I cannot be silent. I will not. There are things happening here that could have been avoided if we had talked more, so I'm talking more. Let the next generation or the next family be better informed than we were. Moveover, there are feelings that folk need to understand are not bad. They're just feelings. Is it my responsibility to talk? No, but I'm doing it all the same.


There are risks and rewards here.

Risk:
The greatest risk of speaking my truth is judgement. Remember, there's a part of me that's still looking for a job. Anyone who Googles me might come across my blog about caregiving and my challenges and pains with it. That person could then decide "Nah. I don't want to hire her. She has a complicated life." I accept that. I understand that. I'm not in the least bit uncomfortable about that. Call me nuts, but this is my life. There is nothing I can do about it. Covering my eyes, ears and mouth like the three little monkeys, changes nothing. Whether I speak it or no, the reality remains the same. Trust me on that. 

Reward: 
I went to an AARP seminar a little over a year ago. There, they focused on caregiving and caregivers. One of the things that was shared, was the fact that most people mired in the challenges of caregiving don't share that fact. Few friends and coworkers, if any at all, know what caregivers are dealing with. Imagine our surprise then when we were told that when caregivers did share, they found welcoming ears, not judgement. Who woulda thought? Clearly, there is reward for taking the risk.

I expect that some will be made uncomfortable by the things I say. I frequently admit to thinking and feeling things that others might keep to themselves. I get that. At the same time though, it is my sincere hope that others will be uplifted by seeing their own thoughts and feelings reflected here. Others still may gain a level of understanding that they might not otherwise have gained. 

If my choices are (i) protect myself from the judgement and disapprobation of others and (ii) uplift and sustain someone else who is on the same journey, please be assured that I'm going to choose option two. That is who I am. The thought, however vain, that I might help someone else, makes the writing both easier and more meaningful. That's the reward and it is priceless.

I write this blog with the primary purpose of informing. The secondary purpose is to purge myself of the thoughts and feelings that the work of caregiving evokes in me. So the 'work' of blogging is part altruism, part enlightened self-interest.

I appreciate the worry that my dear friend expressed today. She is concerned that my writing may have a deleterious effect on my job search. She's right. There will be prospective employers who might judge me as a consequence of the realities of my life, but to be clear, whether I am judged or not, this is my life. Should someone decide against hiring me because this is my life, well, that's how it goes. This is still my life. I am not the first person to enter this pass, nor indeed, will I be the last. 

Current numbers indicate that some five million people are currently suffering from Alzheimer's Disease. That means there are at least five million children caregiving at some level. I am but one. There are others like me and some of them are looking for jobs too. This is our life.

On a lighter note......I'd like to point out that any person who can use the word 'deleterious' in a sentence ought not to be summarily discarded as a prospective employee. Deleterious is a big word y'all. So too is 'summarily' and if you read more of my blog entries, you'll come across a few other SAT-type words that I manage to work into conversation...usually correctly too. That's gotta be worth something. I also write pretty good. That too ought to count for something. Alzheimer's Disease and my giving care? Small t'ing (minor issue) as we say in Trinidad.

Weeping may endure for a night......

Another night of weeping.

From time to time, I'll wake myself with weeping. It happens. Usually there's a perceptible trigger. A week ago, it was the discovery that Mummy no longer recognizes herself in the mirror. Actually, I already knew that she didn't, it was hearing that she'd been having an animated conversation with her image, not once but twice in the course of the weekend, that set me off. Regardless of the parsimony of her loving kindness to me as a child, she is still my mother and more importantly, a human being, whose very unbecoming is occurring in my sight. It's hard, harder perhaps given the parsimony of her loving kindness to me as a child.

Last night's weeping session however, I simply don't know. She had a good day yesterday with the caregiver. She didn't do anything untoward at any point in the day and I went out last night, so I don't know whether there was anything odd at dinner time. And yet, copious tears.

What was odd, or perhaps 'interesting' is the word I need, was that there was in my dream, some weird nexus between Trinidad and its current sociopolitical state and Mummy's state. What I remember from my dream, is that there was some bit of broken infrastructure (a road) that had been juryrigged so that it was still passable. The trouble was that the short term fix was vastly more dangerous than the original problem. Hm. Yes, I can see why that would make me cry. The juryrigging that's been done to ensure Mummy's continuing care is well, it's me, I suppose. And yes, it is more dangerous than the original problem itself, to me at least. Wow! See what the mind can do even in sleep? That's pretty fantastic.

What I don't understand is why this occurred last night. As I said, she had a good day. We had a good, quiet, day. Ms. Rosa came at noon and stayed until six so that I could head out to choir practice. Nothing untoward occurred. What triggered this nighttime epiphany replete with yet another veil of tears? My only guess is that my subconscious is trying to make its position (that it has taken all that it can stand) clear. Yeah well I got that memo a while ago but if you insist on restating the point, let me restate mine: message received! I'm trying but I'm not exactly in charge around here.


Weeping may endure for a night, but joy comes in the morning. Psalm 30: 5

Caregiving: the most unnatural of acts

So here's what I'm thinking today: I think that caregiving is an unnatural act. I just don't think the level of  sacrifice is normal. Perhaps it's normal for a parent - and there are those who aren't built for the giving required of parents - but the whole 'child becomes parent' thing is simply not natural.

Here's what I'm thinking:
As a parent you have voluntarily (mostly) entered into a care contract. These are your kids. You raise them up and send them out into the world. If you're lucky and have normally developing children, there comes a point at which they are on their own. Perhaps in times of crisis they come home and need a soft place to land, but mostly, they grow and they go. Wheter your relationship is perfect or terribly flawed, your level of responsibility for them decreases over time.

As a child in the parent role however, everything is upside down. The needs don't decrease, they increase. The challenges don't become fewer, they grow. Whereas your baby goes from catnapping for a few hours at a time, to sleeping through the night, your parent goes from being able to manage their own finances to not being able to manage their own toileting. This process gives new meaning to the whole biblical notion of 'once a man, twice a child'.

In the midst of all this, the sandwich generation, the child of the ailing parent and likely a parent him/herself, must navigate these rough waters with compassion, day after day after day; hit after hit after hit; setback after setback after setback; challenge after challenge after challenge. On and on. Unrelenting. No breaks. No time off for good behavior. Even when you do have breaks, you're never really 'off duty'.

This is not natural.

With babies, there are the joys of new learnings, new skills. My niece, the best kid on the planet, has largely conquered her speech delay. With every passing day now, there's some new language skill to be marveled at. Every day, there are new thoughts to be shared and discussed. Every day, a new, good thing happens. With the ailing parent however, the new and different when it comes, is generally not good.

Today mother and I had a tussle over toileting. New and different. I won't give you the gory details. Suffice it to say that the tussle only added to my certainty that this is an unnatural act. The people who do this work for pay (and who are, by and large, not paid very well) are martyrs; angels and the hands and feet of God Himself.

People talk as if what I'm doing is martyrdom. It ain't. I get angry (as I did today). I shout (as I did today). And sometimes, I even walk away with tightness in my neck (as I did today).

These responses occur because this is so unnatural. In spite of the help and support that I have, it's not just unnatural it's killing. I have a caregiver organization that provides an unbelievable caregiver three days a week - never mind their bookkeeping is cause of much stress; and everyone at home is doing what they can. Still, this is an unnatural act. I don't care what anyone says. This is a not natural. When you add to the unnaturalness of it, any lingering unresolved issues in the parent/child relationship dynamic, believe me: unnatural.

And still, we plod on. Is there any other choice?

Tick, tock, boom!

I'm thinking of changing my FB name to Timex. As in Timex - it takes a lickin' but keeps on tickin'. Shock resistant! Sometimes, though, things that tick also go BOOM! Just sayin'.

Folks complain (not to me but to my sister apparently) that I'm too full of negative emotion. Venom. Anger. Vitriol. Whatever. Hm. They don't know how to reach me. The phone still works folks. As does email.

I wonder do these concerned parties call and express said concern directly to me? No. Does anyone call and offer me a day of relief? No. Do concerned parties send cards, flowers, emails even? No, no and no again. And then I have to hear that they are worried. Eh? You worried but you haven't told me? That's a weird kind of worry. You're concerned but you haven't called me. The only people calling here are the Dr. in AZ and the bill collectors. (One of the happy consequences of unpaid caregiving, this is why I keep telling ya'll to buy LTC insurance but I digress.) I'm not questioning your concern, I'm just wondering who you're really concerned about. Or maybe I am questioning your concern.

People don't want to hear my snarkeration. Got it. I wonder, would folk prefer I talk about my desperation (which is considered perfectly normal in times of extreme emotional stress) or my unarticulated wish that my mother would simply close her eyes? I didn't think so.  I have to vent. I have no one to talk to except for the Dr. in AZ and Sallie Mae. If you would prefer not to hear it, please don't read my posts or better yet, delete me. It will save me the trouble of trying to figure out who I'm upsetting. Just delete. It's OK. I won't take it personally. In a lot of respects, I've already been deleted. See? The opposite of snark is darkness. Who wants that?

Self-control is warranted, I'll grant you that, so I'll try and restrain myself from snark.

Blessings.....in Heaven

If one more person tells me how blessed I'm going to be at some future date, I think I might cuss. Honest.

Look, I get that people think that what I'm doing is some kind of martyrdom thing. It ain't.
I get that people think that what I'm doing ensures that I'll be blessed for forfeiting various things in favor of caring for my mother but I'm not entirely sure that I agree.

When you add to that (my uncertainty about the truth of these future blessings) the fact that on any given day there's some need that I have that I cannot fill, you'll forgive me if I cuss the next time I hear how blessed I will be either in Heaven or when I'm 102.

Spilt milk

For many years, I was a negative girl. I couldn't see how the future would be better. Then something happened. I started making a concerted effort to be more positive and the next thing I knew, I was thinking positive. I recently posted some old pictures of myself from my heyday when I felt that I could conquer the future. But the future that girl envisioned has not come to be. I don't cry, but if I were a crier, I would weep copious tears and heave with gut wrenching sobs. Fortunately, I don't cry. Tears, split milk and all that.

The worst thing about this experience is that I have to fight constantly to stay positive. Well today, I give up. Staying positive in the face of the insanity that my life has become, is itself, a kind of insanity. I worry now that the constant hits that I take - six emails this week about crap that I'd already worked out; the back and forth with my attorney about first one thing, and then another, and then another and then yet another; back and forth with the bank now because I'm locked out of the online system - I worry that all this will break my own mind in much the way my mother's mind has been broken.

How does one protect oneself? I have bad family history (and bad genes potentially) and a sh*tload of stress on my side. Working in apposition to those factors, I have my faith, my writing, my FB venting, my singing. The question is though: is it enough? Will it suffice to insulate my brain against invasion by plaque?

Your guess is as good as mine. But this day, this day, I feel like "Why bother?". I give up. This day, I feel like the milk hasn't spilled, it's being POURED out......all over my damn head.

Broken is the tree

Alzheimer's Disease is a storm that comes ashore bringing hurricane force winds. Bend or be broken. Them's the rules: bend or be broken. Broken is the tree that will not bend when the wind blows. (Run over, as I said yesterday, is the dancer who does not change her steps when the music changes.)

I imagine that it is possible to care for a dementia/Alzheimer's patient at home, but the things that would need to apply simply don't apply in my household. For one thing, there would have to be a whole lot more hands on deck. When my Granny was in the last phase of her life, she was nursed at home. The big difference there was that she had three children who participated fully in that care. Granny had a fourth child, but Lord Fauntleroy came by infrequently and usually drunk when he did show. Obviously, he wasn't much help. Granny also had four grandchildren, two of whom were local. There was also a housekeeper, a daytime nurse's aid and an afternoon companion. And still, towards the very end, the stress and work of it left me (one of seven people charged with her care) with dangerously low blood pressure.

Even with all those folks involved intimately with the process of dying, we were all still exhausted. Imagine then my situation now where I'm doing the lion's share of the work here; all of the work related to Mummy's affairs in Trinidad and trying to pretend all the while that the current division of labor is not a source of some significant anger. But even that I'm working on. I can't say I'm making a whole lot of progress, but I'm working on it.

A long time ago, I gave up the anger towards my mother. There's no point to it. Barbs was a bad parent. Deal with it. She showed little love or affection. Deal with that too. When I say that she was a 'pragmatic parent' as I did in an earlier blog entry, that's my nice way of saying she was emotionally withholding. Deal. With. It.

The great challenge of managing AD is that there is no opportunity to fix the broken places of the parent-child relationship. Ah well, gotta deal with that too. The other great challenge is figuring out how you want to be as a caregiver, especially if the parent-child relationship was unhealthy. I have said in the past that I want to give her what she didn't and I believe, couldn't, give me. I have done the best I can with that. Broken, you see, is the tree that will not bend. I could stand firm and resolute and be to her as she was to me. Who would that hurt more? I would punish her for being less than I needed, and scar me for being less than I could. 

I have chosen to bend. I have little residual anger at my mother for her failings as a parent. It has become evident to me that her challenges exceeded her capacity. She did the best she could, like her father before her; like the husband she chose. They all did the best they could. That what they did was insufficient unto my needs isn't really anyone's fault per se, it's just how it is.

I must bend or be broken. I treat her with all the kindness I can, all the gentleness I can. If I can't sit and chat with her the way another mother's child might, then I bring in a caregiver to engage with her in that way. (There are many things that I can do, manufacturing relationship at this stage of the game is not one of them I fear.)

Bend or be broken. Bend or be broken. It's my mantra. Bend or be broken. And when all is said and done, I will be able to say that I let this most horrific of experiences change me. In a good way.

Bent but never broken.

A new dance

I have a suspicion that I'll be retiring this blog this year. No, it's not that I expect my mother's journey to end, but rather, it seems my fulltime caregiving will transition to a different relationship as I've decided to find a facility into which Barbs can be moved.

This choice is not made easily, rather, it's made upon reflection on my life. It is clear to me that I'm getting all the help I'm going to from my sibling, leaving me toting some heavy bags. It is also clear to me that my needs, professional, personal and medical are getting very short shrift in this set up. This is not unusual in this setting but I don't like it and have determined that I have to stop it. (Of course, going to the doctor and hearing that my unmanaged condition needs to be managed, might have helped with that particular epiphany.) And finally, I've realized that there is no way for me to go back to work any time soon while giving care of any kind. It simply isn't possible. I've tried it and ended up experiencing severe dizzy spells within two weeks of starting the job. Not good.

Having finally realized these things (you would think I'd have figured some of this stuff sooner), my new plan of action is to put myself first. I finally got the memo that no one else would. It's time for me to be emancipated. The last thing I want or need, is to be sacrificed on the altar of caregiving. There is no coming back from being a sacrificial lamb, not so far as I know at any rate. If there is, I don't know what it is and I'd rather not find out later that there really isn't a way back. Who knows what will apply 'later'? Will I be physically well enough to work at the level that I want to work at? Will I be mentally agile enough to work at the level I prefer to work at? The time is now. I'm fresh, I'm able, I'm healthy, I'm making a move.

One other thing: my housing advisor, the young woman who is providing us with housing options to review, was quite surprised when I advised her that Barbs had an LTC plan. We had already talked about her age, so Katie (the advisor), knew that Mummy is in her upper 70s. It's fairly rare for someone that age to have such a policy. I know. I've seen the uptake rates on LTC policies and they ain't good generally (less than 3%). So once again I say, beating my old drum, go get you some LTC coverage. Yes, the policies have lifetime maximums; yes, the older you are the more expensive the premium; yes, it's possible that you'll pay for the policy and never need it, but there's also a possibility that you will. If you do take that fall, you want there to be something to cushion your landing. Trust me on that. In Mummy's case, the premium was less than $200 per month. The coverage pays just shy of $200 A DAY for residential care. You do the math. That policy, makes it possible for me to make the decision to get Mummy into care and get myself back into the mainstream of life. That LTC policy is my 'Get out of Jail Free' card.

So there you have it. I'll write and report on the quest for acceptable digs for Mummy. I have to say that when this year started, this is NOT where I expected it to go, but when the music changes, you either change your dance steps or get run over on the dance floor.

It's time for a new dance my friends. Time for a new dance.

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!


=================>>>>>>>
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.