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!