Monday, March 25, 2013

Keep silence

finger on the lips photo: shhh---finger-on-lips shhh---finger-on-lips.jpg

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.

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. 

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.

Thursday, March 21, 2013

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

tears photo: equal tears imagesCAWCVZDA_zpscd8f48ce.jpg 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

Tuesday, March 5, 2013

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?

Saturday, March 2, 2013

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.