Saturday, October 29, 2011

What judgement weighs

It's probably very easy, if you're not walking in my shoes, to judge the choices I (and others like me) make. I know that in the past, I've wondered about - and judged? - families that chose to put their seniors into care facilities. Let me say now, I wonder no longer. I get it. Completely. Let me say also that any judgement of my choices does not add to the weight I'm currently carrying. I'm already at maximum capacity you see, couldn't carry anymore even if I wanted to, so judgement weighs nothing.

Someone I know is in the unenviable position of having to seriously consider finding an appropriate institution for her aging parent. Of course, she's going through the process as slowly as she possibly can likely because she knows she can only hold out so much longer. It must be a wrenching decision to have to make. From what I can see, she should already be at breaking point and yet she trudges on. She's better than me. I already know the time will come, and have some sense of what signs I'll get from my body and my psyche that it's time to call it a day. The trouble, if you want to call it 'trouble' is that there is always a risk that someone who is not on the inside of the journey with you is going to judge you. My take: judge away. I truly could not care less. I don't have the energy to care.

Anyone who has not cleaned stained bed linen; hunted for an eye patch that was hidden in a shoe; argued/negotiated/wheedled over breakfast, lunch and/or dinner; contemplated and then finally bought an adult bib; had to stop a parent from consuming a teabag; had to force open barricaded doors; or had to deal with that wild-eyed 'I-don't-know-who-you-are' look a time or two, anyone who hasn't dealt with any of these and more, well you're free to judge but really on what authority and basis would you be doing so?

As for us, the caregivers, we have to make choices based on the circumstances in front of us and what's going on in our guts and homes. Our choices are based on hard reality not some romanticized notion of how we should care for our elders. There's a lot to be juggled and kept in balance if we're all to make it to the finish line, wherever that might be.

In my case, I will be asking myself whether I am at my limit. I will be asking myself whether I feel I can do just a little bit more, for just a little while longer. I'm guessing that if I have the energy to ask the question, I'll know I can go on. I'm pretty sure that when I'm tapped out, I won't even need to ask the questions. No one can know the answers to these questions but those of us on the front lines. I appreciate that as an onlooker one might have an opinion, but as an onlooker and not an in-dweller, that's all it is and it doesn't (respectfully) carry a whole lot of weight. This is truly one of those situations where you really can only know if you've walked a mile or two in the moccasins.

No, we're not there yet but the discussion has come up. When this gets to be too much, when it gets to be too hard watching Mummy wander into the kitchen with that purposeless purposefulness, when that starts to grind us down, we'll figure something else out. Until then, we'll plod on. When we do get to that point though, don't waste any energy judging us. We will probably have judged ourselves already.

Copyright © November 2011 L.S. Semper

Tuesday, October 11, 2011

Pudding face

The proof of the pudding is in the taste or perhaps in the pudding face. Well, I've got pudding face and I'm happy to say so.

I wish I could write freely about what I've managed to achieve in the management of the fiscal crisis that long term care precipitates but you know the internet. It really isn't safe to post even your name these days because once you do, someone's knocking your door down trying to steal your identity or worse.

What I can tell you is what I told my own family: don't depend on having money. Today's costs of care cannot be paid for out of today's earnings. They need to be paid for out of savings long held or out of a stream of income earmarked for just that.

Money is very easily outlived (I've done it a time or two already and I'm extremely frugal) but you cannot outlive income. You may perhaps outgrow it, but you won't outlive it. Think about it. Twelve thousand dollars will always be just that: twelve thousand. Over time, with the rising cost of living and the continuing need to eat and go to the doctor and all manner of other thing, that lump sum will dwindle to nothing. The same is true if the starting point is twelve thousand or one hundred and twenty thousand. A one thousand dollar a month income however, will just keep on coming. Like the tide, it keeps flowing. In twelve months, you'll have seen $12,000 but guess what? In month number 13, here it comes again and with it, another opportunity to stay ahead of your financial commitments. As I said, you may outgrow it, it may cease paying all the bills but it won't stop. Your goal therefore should be to figure out how to beef that income up, so that it stays abreast of your financial responsibilities and commitments.

When my mother retired, her mantra was, "I must hold on to my gratuity" and she tried valiantly to do just that. But life throws things at you, and you find yourself dipping in to these precious savings. Before you know it, it's all gone. Even if you do manage to hold on to it, money loses its value. Inflation is not your friend, hyper-inflation even less so, difficult economic times or 'green guava season' as we say in Trinidad, none of these is a friend to the retiree. These things happen and our savings, unless we are multimillionaires, are no match for economic uncertainty + aging's illnesses. The only thing that works to keep the wolf from the door is income. [Playing the lottery is a fun Plan B, but for obvious reasons cannot be counted on to bear fruit. And for my older friends for whom hoping they don't get sick is the Plan B, all I can say is that 'hope' is not a plan.]

So I'll just say this (again): have that Talk with your parents or your children and come up with a plan to earn and save the funds required for care, then work the plan. Don't expect easy. Don't think there won't be many, many hiccups but trust and believe that with time and a bit of luck, your plan will bear fruit.

Personally, I recommend some low stress business venture that creates a small (but hopefully growing) stream of income. Only you can know what will work for your family. I'm a big believer in leaning in to your gifts, using whatever talents you have, to create something that works. Like making bread? See what you can do. Make homemade breads for your neighbors, once a week, once a month. Whatever works for you. Like making chocolates? Try your hand at that. Love writing? Well, see if there's a low stress way to use that gift to generate a dollar.....and when you find out how, send me a note! I'm just saying, lean in to whatever gift or passion you have and see where it might lead. If you're not sure whether your idea is a good one, bounce it off a couple of people you trust (can't stress that enough!) and then move forward gingerly. Heck if you can't find anyone to talk to, talk to me. I'd love to help. I'd be thrilled to see others leave the land of 'let's pretend it'll be OK'. I've told you how that turned out for us.

Nothing comes without a lot of effort and some pain, but in the end it will have been worth it.

The proof of the pudding they say, is in the taste and mine tastes pretty good. Hallelujah! There are many bumps in the road ahead, but at least I can see more clearly now.

Copyright © October 2011 L.S. Semper 

Wednesday, October 5, 2011

Reality check, deuxième fois

Typically, in the aftermath of a great event, there's a debriefing. In the debrief, from what I've gathered from my reading of various thrillers, parties to the event talk about what went on, how it went and perhaps if it's a learning organization, there is also some talk about how things could have been handled differently or better. In the parallel universe that is Alzheimer's care, you can dispense with the debriefing. It serves no useful purpose.

Case Study
This morning, mother and I went out to one of her doctor's appointments. We were out for several hours. We came home and I immediately served lunch. I try to limit the number of hours without food or water, because we have found that good alimentation and hydration help to keep the mind clear. Yeah, well.

At approximately five p.m., mother came down the stairs in her outside shoes (usually she's in bedroom slippers) and said to me, "I'm going out". Now, I thought she meant that she was going to take a walk alone. This would have been a problem since she tends to go too far and not remember which house she lives in, but this time, she had far more on her mind. It turned out that what she meant was that she was going to walk to her sister's house. Unfortunately, her sister does not live on this land mass, so clearly this was not a good idea. I stopped her at the door and advised calmly that we were in the United States of America and that her sister was at home in Trinidad. She chuckled in that, "I don't think so" way that she does. Here's what happened next ...........

"I spent the entire morning with her this morning", she insisted, this in response to my saying that her sister was at home in Trinidad and that we were at home in the US.
"No," I replied. "You spent the morning with me."
She gave me one of her famous, 'don't be ridiculous' looks even as she pulled the front door further open. So there we were getting ready to get in to a tug-o-war over the front door. She was ready to head out to find her sister, and I was busy trying to stop her progress. Frankly I was also a little nervous about the intent in her eyes and voice. She was going. Her mind was made up. I had to figure out how to stop her. For a brief moment there, I was scrambling psychologically and then a flash of genius, "Well, let me just call her for you," I offered. 
"I don't know the number," she said. 
"Well I know it. I can call her." 
"You know it? How you know it?"
"She's my aunt. I know the number."
"She's your aunt? I never knew that."
There's no time for self pity or frustration or anguish here. I don't even know what those things feel like. All I know is that I have to get on with it. Whatever it takes to slow her momentum. I made the call and tersely explained to my aunt that I was calling because Barbara was trying to head out the door to walk to her place. They talked for about 20 minutes. From what I could hear of the call, they seemed to be having a fairly normal conversation. As usual, the question of Mummy going home to resume teaching came up, but my aunt did her best to dissuade her. At the end of the call, Barbara seemed to be better oriented as to place and person but who really knows? Certainly, she was no longer intent on heading out the front door!

After the call I found myself, because Mummy now seemed more Mummy-esque, trying to debrief the event. How stoopid am I? Seriously? In my weak defense I will say that at that point, Barbara really did seem to be more in the present, so I actually thought (did I really think at all?) this was a good idea. But just to prove that reality and orientation as to time, person and place are fleeting what did she say to me? As I recounted the events of the last thirty minutes she laughed and began to explain things away and then, because it seemed relevant I asked, "Do you know who I am? Do you know my name?"
"No" she said, "what is your name?" I told her. And then, the punch-in-the-face line, she said to me, "You are Mary Smith? If you were Mary Smith I would know you and you would know me."

I would know you, you would know me. Reality, expletive deleted, check. Deuxième fois. How many times will reality be checked I wonder?

Copyright © October 2011 L.S. Semper 

Monday, October 3, 2011

Caribbean Legal Torture

Chinese water torture, what is that? I have no idea myself, but this that I am experiencing now, has got to be pretty close. If it's not Chinese water torture, at the very least, it's Caribbean legal torture.This may be directly relevant to my friends in the West Indies, but the underlying issues are universal and a stitch in time saves nine, so goes the old adage.

When death comes, if there is a will please probate it and settle the estate as quickly as possible. If there is no will, apply for Letters of Administration immediately. There is no point to waiting. In fact, there are many dangers if you do, not the least of which is the declining health and mental acuity of the executor/trix or Heaven forbid, his/her death.

In the Caribbean probate is non-transferable, so until the estate is settled and all the bits and pieces of property are duly transferred to their new owners, the executor/trix of an estate needs to remain sound of mind and body. In our case, so many years have elapsed since the probate was granted (twenty-six and counting), that my mother has had time to fall ill. Being no longer of sound mind, the entire process is set back almost to the very beginning. Sigh.Tick tock. Tick tock.

Apart from the challenges with Mummy's role as executrix of a will, Mummy also has a role in her own affairs. Initially, because she didn't travel home very often, a Power of Attorney was needed to ensure that her affairs remained in good order.  That worked for a long while until circumstances required an adjustment to the parties to the POA. At that point, we had to revoke one POA and establish a new one. Then we got the Alzheimer's diagnosis. Because in the Caribbean Powers of Attorney are not durable, an Alzheimer's diagnosis also means that a new legal instrument will eventually be required. Enter the Committee status - our equivalent of legal guardianship.

This latest proceeding has taken me quite some time to complete, though mostly because my timing got me a court date just before the end of the law term and the Embassy here really fell down on the job. I therefore had to wait until the start of the new law term in September before I could have my petition heard and approved. In the meantime, no major business could be transacted. Fortunately, there was nothing urgent going on but what if there were? What then?

Now that that piece is done, I find myself back at the courthouse door waiting for something else. As I said before, I'm back at square almost one with my grandfather's will. Heaven knows how long it will be before I'll be able to settle that estate per his wishes as he wrote them some thirty plus years ago. Tick tick tick. This one has no 'tock', the watch seems to have stuck somewhere. Prayerfully, we'll get it unstuck eventually.

So now you know. Waste no more time. The clock is ticking (and tocking). Do what must be done and do it now. It really only gets very, very knotty and unpleasant the longer you wait and the time lost is just that: lost.

Do as we didn't, not as we did! I don't think I can say this often enough.

The Cost of Care - Part 2: Act Now! (Reprise)

Rough morning. I'm tired and I feel like blaming someone....or maybe I just feel like calling a spade a spade.

It is, sometimes, a terrible thing to be right. It's even worse if you're right but you're waiting for others to either agree with your analysis (and come to the same conclusion) or just take the leap of faith required, and say, "OK, she sounds like she knows what she's talking about. I'll just go along." This, I have learned, is not how the world works. Certainly, it ain't how families work.

Several years ago, I figured out that illness might be a problem down the road for us. My family (not the nuclear one but the extended one) was very close and there was a certain expectation that it would be one for all and all for one. We also tend to be very long lived. My granny lived to 96.75 and my grandfather to 85. Well, with all that in mind, I worked out that a senior generation of four, could not be supported by a junior generation of four. The math simply didn't work.* In one case the aging parent would be supported by two children; in two other cases, there was only one child; in the fourth case, there were no children at all. To me, the forecast looked challenging. Actually, it looked pretty grim. I was right.

I tried unsuccessfully to have The Talk (about aging and planning and needs). I even wrote a business plan for how we could use an old, tired, underutilized property to create a stream of income. Nothing. No bites. Not even a couple of quick nibbles. No interest whatsoever. I'm not sure if the failure was entirely mine - a failure to communicate the urgency of the situation -  or if the failure was theirs  - a failure to believe that I actually had their best interests at heart. More than likely, it was a combination of the two. Whatever it was, we did nothing and a decade went by.

Today, the future I feared is now the present. That old expression: 'that which I most fear has come to pass', is now where we live. The lesson I've learned along the way is that sometimes you have to ignore folk and do what you know needs to be done. I should have gone all Star Trek on them and 'boldly gone where no one had gone before'. The trouble with that is that if you don't have the requisite power in your family to make things happen, you're stuck. Being stuck is fine if your assessment was wrong and your parents have it all figured out financially, or if you don't give a rat's hind parts how your parents live in their retirement years. If, however, you do give a rat's patootie, and you were right..............................

What I hadn't realized might be a consequence of having one's insights roundly and repeatedly ignored was the constant tension, the constant worry, the time and energy diverted from following your own path, which must now be invested in swimming against the current, without drowning. I am so tired. You have no earthly idea. Some days, I'm up and at 'em, no worries. Other days, the thought of what all I'm responsible for is enough to floor me and keep me floored.

I cannot say this often enough: TALK TO YOUR PARENTS. It is never too soon and it is never too late. Even after a diagnosis comes, you can be creative and make things happen but you must have the conversation. Go to the Volunteers of America website. Resources are available and if all else fails, pay a professional to help you. Talk to someone you love TODAY. Nothing is more important. Trust me on this.

Copyright © October 2011 L.S. Semper 

*Simply put, if one person's earnings comfortably support the earner, they necessarily cannot also comfortably support two. Once the needs grow, if the earnings do not grow commensurately, there will be some financial tension and stress.

Saturday, October 1, 2011

Reality Check

For those who do not live with an Alzheimer's patient, denial of reality is not only possible, it's probable. Heck, I live with a patient and I still sometimes fall into the mistaken belief (and act upon that belief) that Mummy gets where I'm going logically or that she knows who I am in some consistent way. Neither is true.

This evening, I listened to my mother converse with her sister. This sibling is not a regular caller so Mummy's state is something of a surprise to her. I have to admit that it was fascinating to hear the conversation. Mummy has great covering skills, so it sounds like she's following you and going where you're going, but only some of that is real. The holes in comprehension and connection with you may or may not eventually become clear. Tonight, the holes only become apparent when Mummy began asking about her 'people'.

My aunt, in her attempt to avoid the word 'deceased' or 'dead' tried with this: "Well, if you are 76 today, Daddy would have been 111 and Mummy, 109." Silence. Editorial comment: Mummy really is beyond the point of inferring anything. If you want her to know something, you pretty much have to lay it out there. Of course, my aunt, not being in regular touch and being separated by much physical distance, didn't know this going in to the conversation. When it became clear from the tone of the silence that Mummy hadn't understood, she simply had to lay it out there: "They are no longer with us." My aunt is a mistress of delicate statements and euphemism, so in that moment, she was forced to confront a new reality. She knew she would have to say the words. So in that moment, Mummy learned (once again) that her parents were gone and my aunt learned that her sister might be too.

Reality check. Reality? Check.

Another check: she is conversing with someone now and assuring them that her children are not here. Well, I'm on the computer in the next room. Does that count?

Reality check. Reality? Check.

And in today's news............

Mummy is asking about her parents. Her sister, who called to offer birthday greetings, tried to gently explain that if Mummy is 76 today, Daddy would be 111 and Granny would be 109. SILENCE. No comprehension. The words must be said, "They are no longer with us." SILENCE. SADNESS. Less than 5 minutes later, "What about Mummy & Daddy?" Shades of Apple, Table, Penny.