Thursday, April 24, 2014

Never more

"God will never give you more than you can bear". I've heard this before and I've wanted to write about it and haven't, until now.

There is a widely held view that God, the Universe, the Great Giver of Life, never gives us more than we can bear but that is so clearly not true.

Some years ago, there was a story in the news in the MD/VA/DC metro area, about a professional woman who, apparently overwhelmed by the responsibilities of caring for a son with a life long developmental challenge, did harm to both her son and herself. Neither of them survived. This was, I think, her goal. Obviously it was her goal. She wouldn't have done it otherwise. That's not the kind of thing that happens by accident.

Throughout the Great Recession of 2008 and in the post-recessionary period, we've seen stories nationwide, of fathers and sometimes mothers, doing terrible things to their entire families generally because they were carrying far, far more than they could bear and they had lost hope.

I understand why folk will say "God never gives us more than we can bear". I understand it completely but I simply don't believe it but you can if you wish. It just doesn't work with my understanding of God...not that I understand that much.

Life doles out what it doles out. It is entirely up to you how (or even if) you handle it. If you are lucky, and you have help - be it emotional support, another pair of hands or financial resources to pay for another pair of hands, resources to pay for therapy! - you might manage just fine. If you have none of these, but are especially resilient (lucky you!), maybe you'll manage just fine. If you have some support and just enough testicular/intestinal fortitude, maybe you'll manage just fine. The reality though is that it is not what is doled out in the form of the challenge, that determines whether you can manage, it is what was doled out to you in the form of internal and external resources that makes that determination. This is why I talk so easily now about making a plan and buying LTC and talking to family. The external resources I can help you with, the internal not so much.

beast of burden photo: 8-29-10 jackass1.jpgThe reality is that life will throw sharp pointy things directly at your head. There is no malice aforethought in it. That's just how life goes. What happens next, whether you are merely brought low or mashed completely flat; whether you are able to pull your cart or end up like brother donkey in the picture, depends entirely upon your level of planning and your level of resilience. I can't tell you where I am - brought low or mashed entirely flat; still pulling or looking like my friend in the picture, feet flailing - because I simply don't know. I'm still standing. I'm still singing. I even laugh sometimes, and tell jokes, so I guess that means I'm doing OK. Rest assured though, I'm not doing OK just because what was handed to me was no more than I could bear. That simply isn't the case. What I'm bearing now has been unbearable at times. It has recently become more bearable not because it's easier, but because I am finding my way to peace. I will not tell a lie. I wouldn't wish it on a most hated foe, but it is what it is and if I am to survive and be of use to the world once this journey ends, I must find a way to manage all that I carry.

My pastor friend is of the view that God does not send these terrible experiences to us. I believe that. The world is the world. Life is life. Life unfolds in complicated and sometimes unpleasant ways. All that we control, is how we deal with the things that befall us. So no, I really don't believe that "God doesn't give you more than you can bear". First off, whatever you're bearing didn't come from Him and second, history is littered with the stories of folk who just couldn't manage what was in their inbox. To mix my metaphors still further, remember that it was a single straw that broke the camel's back. Just the one.

At the beginning, the middle and the end of the day, I'm simply trying my best. I am muddling on and through. Where this is all going, the purpose of this grand adventure, I have no idea. I'm in it because I have to be. I manage by Grace and through internal resources I wasn't even aware existed. Could you? There's no way to know. But please let's not hide behind this notion that God doesn't give us more than we can bear. Whomever is handing out challenges is not in the measurement business. Your challenges aren't measured just for you, sized to be just big enough for you to wear them comfortably. Nope. It's not so. Challenges show up and you do the best you can and hopefully, prayerfully, you'll come out on the other side, still able to contribute to the world, neither mashed flat nor up in the air, feet flailing, no way to get down. That's my goal at any rate. We shall see what happens.

Wednesday, April 23, 2014

As the world turns

The thing with caregiving, especially long term caregiving, is that it just doesn't stop. I guess that's why the word 'long' is in the title huh? Family members get tired asking, they stop calling for follow up (or they check in once every many months), friends check in periodically or not at all because frankly, there are only so many commiserating noises one can really make.

I remember 15 plus years ago, when my grandmother was taking her final journey, saying to a girlfriend at the time that I just wanted a week off. "One week", I said, "to get some rest." But I knew, that if I got that week off, it would mean that the process was complete and I'd get a whole lot more than a week off. There are no breaks allowed in long term caregiving and even if you have enough help, which we certainly did at that time (I think there were seven people involved in giving that round the clock care, plus a cousin who is a nurse, who would come to check in periodically), there was still no let up. It's a never ending list of things to do.

If you've never done it, up close and personal, you can have no clue as to what it will take. Nor indeed, can you have any clue as to what your checking out may leave others carrying.

I recently read a sad story of a man who returned to his mother's home, to find his sister - the primary care giver - collapsed, dead in fact. In his posting, he mentioned that he had been 'having difficulty seeing his mother in that state'. I immediately wondered how that 'difficulty' had been manifest. Had he checked out? Had he rarely visited? Had he simply filled up his time with a thousand other very, very important things, leaving no time to visit with his mother or assist his sister with their mother's care? There are a good many ways to 'have a little difficulty'. Many of those ways involve checking out and staying out of the fray.

I don't know the gentleman and so I can make no claim about how he was handling his business. All I can say is that when there are those who are 'having difficulty' managing their emotions and the choice (because yes, it is a choice) they make is to step back, trouble ensues.

My mother always used to tell me, "When you say you can't [do something], it means I have to." It used to annoy me because she was right and because I really didn't want to be bothered. And now here I am, hoist with my own petard, as the Brits would say. It would be funny if I had the energy to laugh.

The thing with care giving is that it doesn't end because you're tired or you need to go to the doctor or you just don't wanna be bothered or you have other more pressing concerns, like looking for a job, or starting a business. The thing is that it's unrelenting. The thing is, as the brother mentioned earlier learned, it's also life-altering and in some cases, life-shortening. Research indicates that caregivers can expect a shortened life expectancy, about ten years shorter. While caregivers are busy caring - for others - ain't nobody caring for them. I wonder how much of that life shortening is consequent upon the anguish, anger, resentment and eventual resignation of having to beg for help? Or contingent upon the guilt you feel over the things you simply let fall by the wayside? Or the stress of knowing that the only thing you can let fall, is yourself? Meanwhile, the world keeps turning, blind and deaf to the caregivers' plight.

Never mind what anyone says, care giving is unnatural, because we are human and selfish, if we can, we skate and give as little of ourselves as we can get away with. Brotherman above has just found out that that only works for so long. Bodies give out. Spirits give out. And then what next? The world keeps turning. Care still has to be delivered. Maria Shriver's father had Alzheimer's Disease and yet it was her mother, the primary caregiver, who expired first. See how that works? She wasn't the first, she won't be the last. My Granny had two friends, Gladys and Editha. Editha had AD but it was Gladys who had a stroke and left 'Ditha to be cared for by others. That could have been 30 years ago. It happens. This is not new.

the globe photo: The Globe. Globe.gifThe thing of it is, giving care ain't fun, it ain't cute but it still has to be done. And then, once it's done, it must all be done again. And again. The world, you see, keeps turning. Case in point: Easter Sunday, Mother had another medical drama. She fell out of her wheelchair and went face first into a hard floor. One ER visit, replete with CAT scan and such like later, she was admitted to hospital for observation.

I spent 7 hours with her in the ER on Sunday, six hours in her room with her on Monday and three hours on Tuesday. It's Wednesday and I can do no more. It's my day of rest. It's nearly 1 pm EST and I'm still in my pjs. After five calls to the hospital, I've finally got an update. Once again, she didn't eat much breakfast, but otherwise, she's doing fine. I suspect she'll be released tomorrow. An hour after I made my calls, I get a call saying that they'll discharge her today. If I had the strength, I'd race up there to take her home, but I can't. I'm too weary. She'll have to suffer thru an ambulance ride because if I do it, I'll soon be taking an ambalamps ride of my own. I fear the outcome of my ride will not be as hers.......just sayin'. I'm skating on some thin ice, never mind how much time Jillian Michaels and I spend together jumping up and down. An ambalamps ride for me .... yeah let's just skip that if we can.

Meanwhile, the world keeps turning. The things I need to do to get myself back on track, they still need doing but they have to take second place to my role with Mummy. Better still, I have to figure out how to get them to share first place. No easy task that.

Long term care.'Long' is the operative word and 'care' has to be apportioned carefully, to both patient AND self. Good luck with that. If someone knows how to do it right, I sure wish they'd tell me. I'm clearly going about this entirely the wrong way. 

Wednesday, April 2, 2014

Songs My Mother Taught Me

There is a wonderful piece of music, Songs My Mother Taught Me, by Antonin Dvorak. The song is a particular favorite of mine for a number of reasons. It's plain lovely to start with. More than lovely in fact, it's quite wonderful and emotive. When well sung, it can bring a tear to the coldest of hearts. Another reason the song speaks to me is that it reminds me so much of my grandmother. Again, if you've read much of my blog, you know how hugely important Granny was to me.

Yesterday, I had a long talk with my student loan lender, the lovely SallieMae. I'm but 12 months from paying off my loans. First, let me pause to bless the name of Jesus because given how things have been these last many years, I ought to be deep in the hole not within shouting distance of the finish line. Unfortunately, given that the end is an immovable object, the payment has jumped up just beyond where my hand can reach. During the conversation, the agent suggested that I take a loan elsewhere (at higher interest rates) to pay off this loan. For longer than a nanosecond, I actively considered it. I know it's a bad idea, a very, very bad idea, but I considered it just to get Sallie off my back. But I would only be trading one monkey for another. Cue the song......

While I was considering it, I suddenly had an image of my mother doing precisely the same thing throughout my childhood and youth. Mummy often robbed Peter to pay Paul. It wasn't that she was a poor money manager, but rather that she had three children to care for, support only from her sister (mother of one of the three) and zilch from the father of the other two. Though she was a professional and making what, I suppose, amounted to a decent salary, it simply wasn't enough. Things were further complicated by the fact that we would not stop growing! The shoes, the clothes, the food! We wouldn't stop eating either. And then there were school fees (by choice, she sent us to private school) and the ballet, piano, swimming and karate lessons. We were expensive pickney. She never complained, but she spent a lot of time denying her own needs and robbing Peter.

Yesterday, as I briefly (but not briefly enough) considered my own robbery situation, I realized that this was a Song My Mother Taught Me, as the lyric says, "in the days long vanished". It's not a good song. It's a terrible, terrible song in fact. It's a song, I am pretty sure, she wouldn't have chosen to teach, but still, oops! there it is (isn't that a line from an old song?).

monkey on your back photo: Monkey on your back 040321.jpgI've decided against robbery. This time. I've decided against trading one monkey on my back for another because at the end of the day, I'm still the idiot walking around with a monkey on my back! I'm working on a parttime job that will allow me to deal with SallieMae in a more reasonable way, that is to say: just pay the daggone thing off. The notion though that I even thought about singing the old song I heard my mother sing for so long, is sad and frankly, it's a consequence of bad retirement and end of life care planning. With a better plan, I wouldn't have been an unpaid caregiver for nearly five years. Mummy would have been able to better afford the care she needed and I could have kept working or taken a job out of state. No point dwelling on woulda, coulda, shoulda, much better to focus on how not to keep singing the same song.

Y'all gon' start saying I'm shilling for some LTC company. Nothing could be further from the truth (though it would be the best work I could think of doing at this stage of my life, given what I know and what I've lived). Truth to tell, I'm shilling for your kids, your grandkids, your spouses and your estate. Make a plan. Please. Buy the protection you need and buy it now because frankly, these songs need to be retired. Please. I ain't too proud to beg (another old school song reference).

When you know better, you do better. If you've read this far, you can't say you don't know better. What happens next is entirely up to you.