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I have a healthy fear of my potential for an unhealthy brain. For all the improvements modern medicine has made in the last century, though, there is not much to be done on my part to allay my fears. In the case of the Alzheimer’s disease I stand to inherit from my mother, I think breakthroughs are on the horizon. For now, though, even the best advice the medical community can give leaves me a little discouraged.
I am told to maintain good cardio-vascular health. Yup. Fine. And what good will that do me?
It will prevent the forms of dementia resulting from an oxygen starved brain.
Will it do anything for the kind of dementia to which I am genetically pre-disposed?
Nope.
I get advice to eat healthfully, get plenty of sleep, and limit stress, alcohol intake and blows to the head. I don’t want to dismiss what is obviously a set of reasonable guidelines for better overall health, but, truth be told, I was looking a little more of an edge.
As a last resort, it seems, there is a well-meaning segment who suggests that I do the crossword puzzle to stave off Alzheimer’s disease. If asked, I will say those folks are full of baloney. In my mind, this is the medical equivalent of treating bullet wound to the belly with a shot of whiskey and a dirty rag. The whiskey might dull the pain and the rag will keep the blood off of the settee, but, for all your efforts, you’ve done nothing to fix the problem.
The crossword advice, like the whiskey and rags, just masks the symptoms. It doesn’t untangle the plaques.
Throwing caution to the wind, I have embarked on a different path. Deciding not to mask my symptoms with crossword puzzle wizardry, I have decided to take a different approach. This morning I tried my hand at the KenKen puzzles that the paper offers. At first glance, one might think this is right up my alley; number games…math…logic…
Ahh, but that is where you would be wrong.
Instead of gently stimulating your brain and subtly rebuilding alternate neuro-pathways around less effective synapses like crossword puzzling might do, KenKen highlights the severity of your memory loss, punishes you for every minor lapse in concentration, and leaves you reeling from the startling horror of hearing your internal monologue stutter through the list of number combinations to get two numbers between 1 and 6 to add up to 11.
After just a few minutes of “well these two blocks are either a 1 and 4, or a 2 and a 5, unless, of course, it’s a 4 and a 1, or a 5 and a 2, which works if these other three blocks are mostly odd, but only if there is a 6 in the corner, which means that the bottom right is a 1, 3, or 5, but then I can’t use the 5 or the 1 for the first two blocks” I found myself praying that the plaques in my brain were already forming. That way, I supposed, there would be something, at least, holding my grey matter together.
There is the old phrase “those who can, do”. For my first efforts, though, I have to say I KenKen not…
Today is World Alzheimer’s Day. Most of what you will see on the web (including my own facebook page) are reminders to where purple; to raise awareness. It is, of course, the hope that with rising awareness will be rising investment.
Today might be more than that, though.
It is an opportunity to remember for those who can no longer thread those memories together. Go visit that parent, grandparent, uncle, aunt, neighbor. Bring a photo or a letter or youngster. Share a memory. It may not be lasting, but it will be a moment when, while they may not remember, they will know that they are not forgotten.
Let’s remember the army of health care providers that deal everyday with the people who dementia sufferers become. They deal with the repeated questions. The alternate realities. The altered and alterable personalities. They will do it today, on World Alzheimer’s Day, and they will get up tomorrow and do it again.
Let’s remember those who simply bear witness; who face the loss of a loved one every day.
A friend sent me a piece this morning written by a nurse within an elder care facility. In it an elderly woman confronts the nurse in an agitated state. Holding up a picture of her very much younger self, the older woman asks “Have you seen this person?”
It’s a valid question from a woman who bears so little resemblance to the vibrant, hearty woman in the photo.
It’s a valid question from a woman who no longer recognizes family or long time friends.
It’s a valid question from a woman who requires residential treatment for a disease that has robbed her of the ability to recognize everyday dangers, to navigate her way home again or to follow the rhythm of the day from morning meds to meals to bedtime without friendly reminders from the staff; robbed even of the ability to recognize herself in the mirror.
The nurse’s response was one of those that anyone who has ever visited the sick or dying, or the frightened or grief-stricken prays will come when called upon to say something. Her response is kind I hope I found often enough to bring a little comfort. Her words have that special kind of grace.
She said “I have seen this person. She has aged gracefully and is loved by many”.
You can read the whole story, submitted by subscriber “jaelpn”, here at AllNurses.com
A couple of my recent posts have been about keeping your eyes open. In Driving Lessons, one of my major points was the lifesaving property of watching the actual movement of vehicles around you rather than the rather uncertain implied intentions of a turn signal. In Look, I wrote of the welcome reminder to simply look around you at the good that is a happening right under our noses.
And then I forgot to look.
I have had my head down for days; plowing through a large share of work that is due, getting my taxes done and sorting and filing the mass of paperwork that remains in the aftermath of IRS and State calculations, reviewing documents, updating forms and returning calls. It has occurred to me on several late night occasions that I had not written a post, but in all the churn of administrative details I found no inspiration for writing; forgetting, of course, or at least temporarily ignoring, that part of my pledge is to write something everyday.
Once again I have missed an anniversary. I started writing two years ago yesterday with two posts; as an explanation of my chosen blog header I wrote Metastable, and in an admission, in The Morning After, confessed that the act of starting a blog may not have been entirely well-thought out.
At that point I had been home, retired, for about four years. My mother had been in a nursing home for more than a year as her dementia had advanced, yet her general health was remarkably, dishearteningly good.
At that point in my life, the beast was still a mush-faced bundle of random energy who peed on my floor, chewed on my hands and pulled like a sled dog on a leash. My circle of local “friends” consisted nearly entirely of caregivers and residents of long-term care facilities. I was working a job that ultimately would leave me feeling expendable. I had things to say but no forum for saying them. My experience as caregiver felt isolating.
My how things change…
So I missed the anniversary yesterday, but today I stopped to look back and see how far I have come. Thanks to all of you who have joined me on this journey.
As I visited young friends of mine recently, the animated feature film Monsters, Inc. was playing in the background.
I love this movie!
The whole movie is fabulously illustrated. The story lines carry the basic premises that we should not be afraid of something just because it is unfamiliar and that laughter is more powerful than fear. There are good lessons there.
In addition to good lessons there are some fabulous characters, including a little girl named “Boo” – not her real name, but in a movie about scaring children, when asked her name the little girl, in keeping with the theme, said “boo!”, and then giggled; refusing or forgetting to be scared. Boo has two jaunty pigtails on the top of her head. Occasionally, when I am behaving like the strange human that I am, the beast will look at me curiously and her ears will perk up then cock out to the sides. I tell her she has “boo-ears” when I get that look.
Even when I am behaving strangely, the beast, like Boo, refuses to be scared.
Which isn’t to say that there are not things that do scare her. She doesn’t like loud noises, or the toenail grinder, or the rustling of grocery bags or walking on pergo floors.
It is a pretty short list, and I am grateful for that. I would not wish for her to live her life in fear. Still, I wish she was more afraid of moving vehicles or the bad mood of mine that comes from her eating my shoes. A little fear in life is healthy; lifesaving perhaps.
And fear is normal. I think we all have a few monsters hiding in our closets.
I was talking with a friend of mine the other day. She had just had one of those long and hard discussions with a loved one about health concerns. I’ve had those discussions, too, and I can empathize with how hard they can be and how much they reflect and rouse our own fears.
She confessed, as healthy as she is right now, that one of her biggest fears was that she could have a heart attack and die.
I confessed that my fear is that I won’t.
Different monster…but we all have them.
Having only met my own, I don’t know how to tame all of those monsters. It does occur to me, though, that there are a limited number of approaches available to us; turn and introduce ourselves to them face-to-face; decide not to deal with them and put them out of our minds; or turn every light on in the room, sit with our backs pressed against the headboard and stare at the closet door all night.
The approach you may take might depend on the monster.
For me, the fear of not having a massive heart attack is not something I can control, so, for most days, I simply put those thoughts out of my mind. For other things like my personal safety, I choose, like making introductions, to make myself aware of the crime in my area. Because I have familiarized myself with the risks where I live, I can take what I think are reasonable precautions. For other fears, like when the beast was throwing up blood, I chose to have her stay at the clinic overnight and have more testing. It was a tense and sleepless night spent watching the closet door, although, as it turns out, it was nothing.
Other folks might take different approaches to each of these potential monsters. More important than the approach we take, though, is not to let the monster choose for us, or at least to limit the number of monsters that are allowed to keep us up, standing vigil, all night.
I was reminded in my week in the cadaver lab that I am particularly bad at remembering to duck; not very good at seeing the threat and preventing contact… or maybe I am simply too stupid to know what’s coming.
It happens outside of full-body contact research labs as well. It happens with grief, too. I was completely blind-sided.
I should have seen a relapse coming. I should have taken the return of nightmares as a warning sign. I should have been on full alert given my disrupted sleep, my new aches and pains, my hormonal near-meltdown, and near-panic over the beast being sick.
Instead, I saw those as part of my life’s normal ups and downs.
I blithely stumbled on; going through my “normal” daily routine late last week. My new “normal” has gotten away from settling in to watch tv at night. Instead, I have tried to read more, play more, and relax more in the evenings. If there is a program I feel like watching, I generally watch it online sometime during the following days.
Among the tv shows that routinely shows up in my online queue is Grey’s Anatomy. I used to be pretty well hooked. Lately, not so much, but I didn’t have anything better to do as I sat down to have some lunch last Friday. I clicked on the icon and launched last week’s episode. It was all going so well until I aspirated my soup…
The episode had a story line about whether a woman who had shown some symptoms of dementia would be admitted into a clinical study for a new treatment.
You would think I would be smart enough then to turn it off, fast-forward, something.
I wasn’t.
I found myself even heartened by the fact that there was a clinical Alzheimer’s trial going on….even knowing that the trial was fictional. I am not in agony over the fact that there is this disease out there. I am unperturbed, sometimes even cheered, by the medicine.
I am, however, deeply effected by those who continue to suffer…even if they are fictional.
The woman on the show was denied entry into the clinical trial, her symptoms not having progressed enough to qualify her. At this news, she celebrated; she didn’t have Alzheimer’s; she couldn’t have Alzheimer’s; she had other plans for her life, for her retirement….
I could empathize with her and her family. I was moved by her words….but then I was immobilized by the words that followed.
“I am so afraid,” she admitted.
I was afraid, too, as I sank to the floor with chest pain, unable to breathe, gasping and sobbing.
“What the f*@#??!!” I thought to myself.
It has been months. I have put some effort into letting myself heal. I have been open about my grief. I have talked with many folks about my mom and my grief, and had talked with others about their own family members. I’ve been back to the home where my mother lived and even begun volunteering there. I had been doing fine; was really on a high, in fact.
Only to get run over by the sled.
Never even saw it coming…
Some days you need to just get things off your chest; take a few rocks out of your pack; unload.
Sometimes, as I did yesterday, I look at the rocks and try figure out if I had been carrying them for a reason. Most days I try to live a pretty well unexamined life, but every once in a while it’s worth a look.
And if the rocks are worth looking at every once in a while, then certainly the gems should get an inspection, too.
Last Saturday morning my phone rang at a little after 9; a perfectly genteel hour. It was precisely the hour you would expect a call from the woman on the other end of the line. The call was from a friend of my mother’s.
One look at the caller ID and I knew in my heart that the conversation was going to start with “I don’t know if you had a chance to see the paper, but so-and-so, a friend of your parents, passed away.”
I knew it.
I knew wrong.
Although it was not a call to check the obituaries, it was still a somber topic. The woman was calling to ask me a few questions about nursing care for a family member with Alzheimer’s; sober questions about finance and Medicare, and staffing and activities, and waiting lists, and State health reports.
Beyond the red tape and black and white questions were the underlying worries. When is the right time to move? Beyond that report, and these services, how do you choose? What do you ask when you visit? What do you look for?
This woman, one of my mother’s peers, wanted to know which places I had looked and why; which I had liked and why.
I was pleased to be able to answer her questions; the ones she asked and the ones she didn’t.
More than that, I was honored to be called.
It sounds a bit like self-help tripe, but I am finding there is a useful reminder in the observation that “we teach people how to treat us”. Although not so succinctly put, this is something I have known for a long time.
I’ve known that if I don’t want to get turned down completely, I better show a little faith in myself. If I want to be viewed as strong, I need to stand up for myself. If I want loyalty, I need to learn to stand up for others. If I want others to listen and respond to me, I had better be prepared to do the same for them.
This is not rocket science.
Still, like most things in life, there are subtleties that get overlooked.
Also, like most things in life, it is way easier to see that subtle slight when you are the one who was slighted.
During my week in Alaska, in the middle of a long, quiet shift, conversation shifted to the death of a parent. Several of the folks in the room shared stories of loss or told of the challenges in managing aging parents. I had started to speak up a few times, but others seemed to have more urgent tales and greater familiarity with the group. I sat quietly. I was new to the group, after all. I was there to listen and learn…not about this mind you.
As hugs were exchanged among those taking part in the conversation and tears wiped up, one of the people in the group offered me an apology.
“I’m sure you didn’t need to hear any of that, as you are a long way away from having to deal with your parents getting older…”, she said. She meant it kindly. She had no idea that my whole trip to Alaska was born from the need to crawl out from under the loss of my mother.
Maybe I don’t quite look my age. Maybe even when you know that I am 48, most do not presume that I would have lost both of my parents already.
I get it.
Still, it might have been a conversation to which I had something to offer…
This very brief part of my Alaskan experience reminded me of a lunch I attended a while back. At this gathering few of the women at the table knew each other well. It was an opportunity, though, to get to know each other a little bit better; to network. As life stories were exchanged, the conversation seemed to skip me. When the oversight was noticed, but before I actually started to share a bit about myself, one of the women simply stated that I was “a baby”.
I was, indeed, the youngest in the group, but still I was insulted.
Among this group of women, I may very well have had more to gain by listening to their stories, than I had to offer by telling them my own.
I don’t know, though.
They don’t know either. After being declared an infant, you could not have pried one word about my life’s experiences from me.
Reflecting on those experiences now, though, I am wondering if I teach people to dismiss me as too young. Do I deny my own experience? Appear disinterested in theirs?
Or how often do I do the same thing? Do I overlook the youngest in a group? Do I dismiss those who don’t look like they have experience as having nothing to offer as guidance? Am I so busy talking, I forget to listen?
I want very much to believe that I see the person leaning into the conversation and turn to welcome their input. I want to think that I hear the intake of breath that announces the next speaker. I want to believe that I take care not to talk over someone’s first tentative words.
But I’m not sure I always do.
Because this part of life isn’t rocket science. When we get it wrong, things don’t explode or go careening into alternate universes.
We just miss opportunities.
Life is short.
I’d prefer not to miss a lot of those.
There are, most certainly, some diagnoses where the cure is far tougher than the disease. In most cases, it is the patient who is most deeply effected by both disease and cure, yet with dementia it seems that it is the families that can be effected most severely.
Managing a loved one with dementia, has more challenges than I can count. These efforts are frequently made even more challenging by our inability to manage our own response to behaviors exhibited by someone who should “know better”; someone we love or have come to depend on.
How do you stop from being that person who shouts at a loved one? How do you cope with the daily discouragement over what has been unlearned overnight? How do you overcome the embarrassment that new behaviors can cause?
For me the answer was simple reminder.
It’s the disease…
… a simple, but sometimes hard to channel, reminder.
My mother did not decide one day not to walk any longer. She was not trying to drive me insane with forgotten words and misplaced items. Not once did my mother deliberately turn the tv volume up to its maximum level and leave it there. It wasn’t her fault that she could not order off of a menu, or follow a conversation, or distinguish between her phone and her remote control.
It was the disease that did all that, and no amount of shouting, or careful lecturing, or huffing in exasperation, or blushing in mortification was going to change that.
She also didn’t decide to get sick. Let’s be honest. At least some of the shouting comes from a place of fear of what is to come or astonished disappointment that the one person who has been there for us our whole life may not be here forever.
We are a death denying society. That feeling of immortality probably helps us in some ways to achieve what we might otherwise fear. I am sure that our wholesale aversion to the natural end of life is part of the engine that drives huge leaps forward in medicine. In those instances, our defiance is good, but when faced with the inevitable; that our parents are dying; we are ill-prepared…so we shout at the people we love. We beg them to remember. We rage at the slowness of their gate and fume at the repeated questions.
Do remember, though, we aren’t being blithely abandoned.
It’s the disease.
A long time ago, I wrote about how difficult family dynamics can make dealing with stressful situations, like aging parents, even more difficult. Even in the best of families, there are times that are just plain difficult. And even in the good times family can simply be hard.
We have huge expectations and a lifetime worth of baggage that come along for the ride in the family car. Sometimes there are unforgivable wrongs behind the hard feelings. Many times there are resentments that linger from something so utterly uncontrollable as the order in which each sibling was born or as incomprehensible as perceived favoritism or simply from the pressure to be a good kid.
I was once again reminded of this by a particularly telling statement made amidst the daily razzing one of the morning show DJ’s was taking.
The subject of the day’s razzing stemmed from the co-hosts’ incredulous reactions to the news of the host’s actions the previous week when his elderly neighbors found themselves in crisis. The morning show host had grudgingly recounted his efforts of the previous week; hesitant I am sure both for the disbelief he would face and for blowing his cover as the guy least likely to come through. But his wife had let the cat out of the bag and the co-hosts weren’t going to let it go.
What struck me in the middle of this conversation was the host’s declaration that he could not have done for his own parents what he did for his neighbors. In that statement, he held no malice for his own folks. He just meant that the combined obstacles of added work in the face of bearing witness to his parent’s decline would have been more than he was willing, or maybe able, to contemplate. To illustrate his point he recounted that the interaction of his neighbor’s daughter with her parents, her mother in particular quickly devolved to shouting.
“Mom why can’t you…? You know that doesn’t go there. You know dad can’t come home now!!”
Been there.
Shouted that.
Caring for an elderly parent, particularly one with dementia, isn’t just a series of tasks. It’s not just another household to clean and five times more doctors appointments to keep track of. It’s not just about the fact that every couch crevice and coat pocket is host to a wad of damp kleenex and every scrap of paper has a note scrawled with some vital piece of unintelligible information. It’s not just the endless stream of questions…or really the endless stream of question (singular); the same one repeated until you become convinced that not only is there a genetic component to many forms of dementia but that there is a fair chance that it is also contagious and that you seem to be showing all the symptoms, too.
Caring for an elderly parent comes with fear of getting it wrong, anxiety over getting their disease, real or perceived pressure from siblings and the very real sense of impending loss. That, my friends, is a lot of baggage to get loaded up for a single trip to the doctor, and it is a lot of stuff to get in the way while you are trying to vacuuming. It’s a lot to carry in from the car every time you go to visit.
On a long journey like the trip through aging parenthood, we need to learn to travel lighter.
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