The Cost of Care - Part 2: Act Now!

One of the things that I hope this blog does is encourage others to discuss long term care needs with their families. If  you have no parents (because you fell from the top of a baobab tree) then you have nothing to discuss. If you came to this planet the regular way, um, might I suggest a conversation is necessary? And soon? Because without a plan, care can (and often does) cost everything: every penny, every ounce of energy, every everything.

When Martha Stewart and Maria Shriver talked recently about how Alzheimer's Disease could, and well might, wipe families out financially, they weren't lying. And frankly, though it would probably take a small village of Alzheimer's patients to wipe Martha Stewart out financially, the point was well made.

We are fortunate in that even in these frightening circumstances, in the dark recesses of my mind, schemes continue to form. Thank God for B-school! One of those 'schemes', a retirement readiness seminar targeted to pre-retirees, retirees and the children of those, is probably the most viable way forward for me. By tapping in to and marrying what I've learned in the schools of business and caregiving, I might yet prevent another family from dealing with some of what we've dealt with over the last two years. The issues this situation has brought to us are ones I can speak to with rather more authority than I would prefer, but there you have it.


Here's the trouble with that plan though: most people would rather whistle past the cemetery at night, rather than go in and confront that which they fear. In short, folk just don't want to talk about it. And even if there is a relatively easy way of dealing with the frightening truth, people would often prefer to avoid the discussion altogether. Here's my response to that: don't freaking do it! Avoidance is beyond simply irresponsible, it's downright dangerous. As I've had to tell my own family, you're standing in a train station. The fact that there's no train in front of you doesn't mean that there isn't one a-coming. If you foolishly stand in the middle of the tracks, you can trust and believe you will be run over. Trying to scamper out of the way at the last minute? Bad idea. I'm just sayin'.

Case Study: a family I know well, avoided the conversation. This family was fortunate to have a family member who went to business school and had a pretty good head on her shoulders (who am I kidding, you know I'm talking about myself). But there were no words that could be employed to prompt action. Time went by, and nothing was done. Valuable assets lost value, and still nothing was done. At the time the topic was first broached, only one member of the senior generation was ill. Ten years on, two are ill and all are ten years older.

I understand all too well the reluctance to look closely at our finances and our long term care plan, but as one who lives in the land of the plan in action, let me suggest that you sneak a peak. To be here, where I am now, without something in place? Oh, the thought is too horrendous to contemplate.  So while I empathize with your discomfort, I know that having taken a look, I've been able to do something that has kept us well back from the financial precipice that care-giving very quickly drives families to and frequently off.

Creating a plan and executing that plan are  not easy. Hard decisions have to be made. Families may have to get comfortable with ideas never before considered: moving parents in; renting childhood homes to produce a continuing source of income; starting home-based businesses. All of these and more may need to be looked at but I can say with certainty that there are benefits. By making the right moves, hopefully at the right time, you can create a path that leads away from the precipice. Parents may prefer that the status quo remain in place (my mother certainly did), but that status quo will most assuredly steal tomorrow, theirs, yours and your children's. Act now.

The Cost of Care - Part 1

I love food. In fact, I eat recreationally. The only reason I don't weigh 300 pounds is that I'm a fan of The Biggest Loser workouts. My mother on the other hand, has to be inveigled to eat (she also has to be inveigled to exercise but that's a whole other post). Every meal requires a negotiation. I've taken to not negotiating but rather to saying, "You need to come down for dinner" and then disappearing. It's simply easier. If you linger, you will be forced to negotiate.

What I find fascinating though is that the disease's goal seems to be to starve the patient. Mummy used to feel hunger, but these days it seems as though the whole 'hunger' sensation is a thing of the past. In the not-too-distant past, Mummy would come to the table and as she began to eat she might say, "I should have eaten half an hour ago" or "I didn't realize I was so hungry". These days, she simply eats and extremely slowly. Clearly there is no driving internal force pushing her to consume her meal. Even though I always start after her, I'm serving so that's natural, I will typically finish eating before her. The caregiver's role then, is to stand between the patient and the patient's body's apparent intent to go quietly into the night.

Alzheimer's patients who receive reasonably good care live longer and are not prone to dehydration and malnourishment because someone is taking care of those details. They are healthier not because their bodies are holding up so much better, but rather because someone else is holding them up. This weight-carrying takes a toll though. None of this long life business comes without some price. I now fully understand why it is widely believed that care-giving shortens the caregiver's life by ten years. This makes perfect sense. If I carry you, I can't also carry me. Even if I am able to carry both of us, one of us is going to get short shrift because the resources of time and money are finite. Guess who that's likely to be?

Care-giving, it seems, is a zero sum game. The resources are finite. If I give some to you, there really is that much less for me. Perhaps this is why, in spite of everything on my plate, I still carve out time for a workout. It's one of the most important slices of 'me' time in the day.

A birthday thought......

When I think that on this day thirteen years ago, my grandmother left us to travel on and I look at my mother's situation, I can only wonder what made them so different. What made their lives turn in such completely opposite directions? One begat the other and yet they could almost be from two different universes, so different were their approaches to life.

Granny - Olga Winnifred Comma Maynard - died at ripe old age of 96 (and three-quarters, but who's counting?). She was, until the year of her passing, fully alive. She was bright, interesting and interested in everything around her. For her last big writing project in 1997 (she had many in my lifetime), she was writing an article to the newspaper about all the Y2K fuss. She was passionate about her family and her God; full of life and love; and as enthralled about nature at 96 as she had been at 6, I'm guessing. She was a complete joy and lived in complete joy. Though widowed at 83, she spent the remaining days of her life alone but never lonely. Well it would have been hard to be lonely. How could she be with all the 'heathens' (her loving term for the lot of us), traipsing through her house day and night, and her faithful housekeeper/friend/daughter Irene at her side during the daytime?

Mummy on the other hand, is still very much alive but not nearly as fully alive (and this even before her diagnosis I would venture to say), as Granny was. What is it, I wonder, that makes some of us fully alive and others not even nearly so?

Mummy used to say that single parenthood dragged one down. I'm not one to say, having as I do, no chick, nor child, nor parrot on a stick, but certainly my mother never lived the way my Granny did. I often wonder if Mummy's lack of passion for anything other than her profession was part of the path that led us to where we are today? But who can know these things?

So today, on Granny's day and on the eve of my own birthday, I must recommit myself to full life. This is not so easy for any of us to do, but do it I must. In addition to whatever caregiving responsibilities I may have, I must also ensure that my days contain sufficient 'life of the mind' activities. This 'life of the mind' stuff I learned from watching Granny. She practiced this behavior every day and it was a practice which allowed her to be (and feel) productive well into her nineties. Perhaps, these are the things that will keep me fully alive until I, like Granny, travel on. I can only hope and pray.

Lies and the lying liars who tell them

It has become necessary to lie. It took me some time to get used to the notion as I don't lie typically. The sin of hyperbole I will commit in the best interests of telling a good story, but outright lies I avoid. They simply make me uncomfortable. These days however, the lies are falling fast and thick from my lips. It just makes sense.

The reality of Alzheimer's Disease is that rationality slips away, so trying to be rational is often an exercise in futility. I've spent a goodly amount of time trying to explain things that may only barely make sense to Mummy. Even if the words do make sense, she cannot hold the details, plots and sub-plots that are required to evaluate and assess information. As a result, these days when she asks why something has to be done, I just offer up the first thing that comes to mind. Unfortunately (or fortunately depending on your perspective), that is no longer automatically the truth. Why bother?

Today, the question was "What time is the appointment?" My answer, "Now". Truth be told, the appointment was three hours away but Mummy can no longer dress quickly. She simply has no sense of the passage of time so the bath can take twenty minutes and the dressing another forty. Right there, we've spent an hour. Then there's alimentation. First we must navigate the waters of, "But didn't I have breakfast/lunch/dinner already?" Then there's the inevitable ten minutes after the meal brushing the teeth yet again (second, third or fourth time for the day). When you roll all that together you see that (i) we must start dressing three hours before the appointment and (ii) I gotta lie else she'll want to start dressing an hour before the appointment and we'll be late for everything....not that even with the long lead times we aren't often late but that's another story I suppose.

So there it is. I am now a liar. I have to be.

**the soundtrack of my lies. This is an old Trinidad calypso by the Lord Nelson about, appropriately, a lying competition.

Some comfortable shoes

No one's asked me, and I'm hardly an expert but here's a quick list of the things we've done that have kept our mother functioning at a relatively normal level. While Mummy cannot select her own clothing, she still is able to manage her personal hygiene routine. As Alzheimer's Disease progresses, the simple act of brushing one's own teeth becomes a challenge but we have found a few aids that have helped keep Barbs Barbs for a while longer. By all reports from her physician, her progression is fairly slow and we are very thankful for that.

If you know someone with Alzheimer's Disease, or are a caregiver yourself, you may want to try one or two of these.

1. Physical exercise. Mummy hates it and avoids the exercise bicycle like it's a communicable disease BUT once she cycles, the blood flow to the brain (I think) yields short term gains in her functioning;
2. Brain exercises: puzzles. Again, Barbs doesn't much like these but we firmly believe that the brain is a muscle and needs to be worked. We use children's puzzles with 24 pieces. These are doable and yet require the thinking skill (does this match with that) that pushes the brain to work a little harder;
3. Games: We just discovered an outdoor game called Corn Hole that is both physical activity and brain activity. The goal of the game is to toss a bag (filled with corn) into a hole. The challenge is that you have to figure out how to toss the bag to get it all the way to the opposite side of the field of play. When Mummy tried the game last weekend, we found her engaged and focused, in a way that she isn't much of the time;
4. Music: We come from a singing and piano playing family. My grandmother was a lover of hymns and so Mummy knows many, many hymns and her experience of music goes back to the womb practically. When she is obviously discombobulated, we turn on the hymn CDs. We've also found that any of the music she loved works just as well. So, we've used Nina Simone, Edith Piaf, Marian Anderson, collections of Negro Spirituals and the music from our old choir. It seems that music memory is slower to fade. Our response to music is visceral so even if the patient has forgotten the words (which Mummy hasn't yet), the melodies and how they make her feel remains. 
5. Conversation: A caregiver who is good at keeping the patient engaged and talking about their life is a real boon. This may be easier with a stranger than a family member. Conversations with family tend to draw on shared experiences whereas conversations with a caregiver (by definition a stranger) have no such basis. It's just sharing of information. It requires the patient to draw from their experiences but misremembering details doesn't break communications down as it might with a family member;
6. Laughter: Someone who can get the patient laughing and focused on nonsense rather than on the chaos inside his/her head is a real help as well. Sometimes, just keeping things light really helps to relieve the pressure for the patient.

Some of these things may have little long term effect but laughter and conversation for example ease the way on a daily basis and make life a little more tolerable for all concerned.

None of this is easy and much of this isn't exactly fun, but all that aside, if this is your life...........Well, let's say this, if this is the road you have to walk, best to walk it in comfortable shoes.



Peace.

The business of orientation

A couple of days ago, we went out to do some errands. Obviously, the first step in any outing is getting dressed. While this isn't as slow as it could be given Mummy's illness, it certainly ain't as fast as it used to be.

Earlier in the day, my sister had awakened Mummy and proceeded (without giving Mummy the benefit of the usual 30 - 40 minutes to orient herself) to ask her to get dressed so that we could go out to do the errands. Well that didn't go so well. What I've discovered is that Mummy's coping/covering/rationalizing mechanisms are hard at work all the time. I've also realized that the business of orientation, of being aware of place and time, is work for an Alzheimer's patient. Getting the brain going after a nap, or first thing in the morning, requires a little time and effort. I now realize that when she is awakened, Mummy spends the next few minutes (hours?) trying to figure out where the heck she is and who the hell we are. She never says anything, but when she does you realize the depths of the confusion. Is it any wonder she sleeps with the rocking chair against the door? But I digress...................

On Saturday, by the time I went up to her room to get her moving on the dressing, she was more in gear, but still not all the way here. We spent a good ten minutes going over who lived in the house, whether she lived here and discussing why she couldn't stay home alone.

Much about this situation is manageable. So far. What is harder to bear is when she says things like, "Well I don't know anything about that" and "That's very strange to me" in response to my repeated assurances that she does in fact live here. For some reason, that freaks me out more than her not knowing who I am. Hey, there are days when I'm not sure who the heck I am anymore so I'm not about to take exception to her not knowing me.

The reality is that this is a brave new world and it is one that evolves and changes on a regular basis. I have no earthly idea where my mother is on any given day. I have no way of knowing if she knows me or not. I no longer trouble to find out. In frustration sometimes, I check on where she is (where are your parents, what country is this, whose house is this) but shortly thereafter I realize that it is an unhelpful exercise, both in the short term and in the long. As long as she's not walking away, trying to wend her way to Port of Spain Trinidad via I-95, I'm cool.

Maybe this question of "orientation" is a moot anyway. Where are you? "Here". Who am I? "You're you". Let's just leave it at that. More than that is too much information anyway.