Things I Know And Things I Don’t Know, Or, Saturday Morning at 10:33am

All this week I’ve been feeling anxious. Seriously so, for no discernible reason. I ran through the usual suspects; Mom’s affairs, preparations for teaching, blog posting schedule, life administration, the well-being of my children. Although there’s stuff, there’s always stuff, nothing warranted the deep cold dread I felt.

Then yesterday, having crossed two particularly time-consequential tasks off my list, I knew.

My mother’s Alzheimer’s has me rehearsing the future day after day after day. I worry so much about forgetting that I treat my obligations like beads on a string and run them through my mind’s equivalent of fingers, over and over again. Black beads, I think, volcanic stone. Porous and sharp.

If I can’t at a moment’s notice remember all the 13 tasks I must complete, and when they’re due, and even which ordering will optimize the process, I feel dull fear in my belly. As though the beads have begun to crumble in my hand.

This is not terribly festive.

I suppose anyone who’s got an ailing parent might feel the same. We love and fear our genes. But we also know that humans are happiest living in the present. A life in the future, especially one in which one might forget to buy all the necessary Christmas presents, or burn the holiday choucroute (as my mother did early in her disease), not recommended.

Just figuring out my anxiety’s source helped, some. But in fact I am faced with a scary question I can’t answer. No one knows if Mom does actually have Alzheimer’s, it’s a diagnosis that can’t be confirmed in life. No one knows for sure what genes are or are not responsible. No one knows how to prevent the disease, or mitigate its effects. So, like so many things in life that we don’t foresee when young and no one explains, you just deal.

You just deal. You refocus on the glories of the day. I mean, there’s really nothing else to do. It may be pablum but that’s better than starving.

You applaud the Fedex man when he shows up with packages, be glad for spattering raindrops on slate and glass, drink tea but not too much. Too much adds to anxiety. Music’s good, especially “pop-oriented” flamenco. Some things we know.

And you wish your friends a wonderful weekend with great affection. Happy winter everyone.

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  • It’s hard, sometimes, to keep eyes off all the Things That Could Go Badly – especially those that have been made tangible to us through experience and perhaps more likely for us through statistics and genes.

    Given that everyone has the odd absent-minded moment, and almost everyone experiences some degree of age-related memory loss, the false positives for Alzheimer’s seem like they’d be brutally frequent. But I don’t really have an answer for that other than, maybe, to get whatever plans you want to get into place (there are, I think, cognitive tests where you can get yourself checked out, for instance, which might be reassuring or at least provide some sort of milestones) and then to focus elsewhere.

    I’m sorry that you have this load; I hope that you find a way to set it down.

    12:49 pm
    Lisa said...

    @KC, Thank you. I check out fine on the tests. So far. It’s funny, I actually feel less bad than this post might indicate. Simply freeing myself from the unknown dread is way better than having something specific to fear.

  • Long time reader here…my dad, all of his brothers and sisters, and both of his parents have/had serious dementia issues. Probably not Alzheimer’s because the trajectory is much, much longer than most Alzheimer’s patients. I know exactly what you mean. And then I laugh when my super bright 11 year old tells me how much she hates it when she arrives in a room and can’t remember why she went there! Wishing you peace and joy this Christmas season – you’ve had a really hard year. xoxo

    12:51 pm
    Lisa said...

    @Carol, Thank you. Sorry for what your dad and his family have faced and are facing. It has been a hard year, I’m really hoping for the Year of the Rooster to improve things. xox.

  • Watching my 92-, almost 93-, year old mother go through her physical and mental decline has been scary to me. And after some recent health issues of my own, I feel your anxiety. I have to remind myself that we can only deal with today’s problems. We can’t take on what hasn’t happened yet and may not happen. And we have to appreciate what we have in the present. You are not alone in feeling the dread. Hope you have a stress free weekend.

    12:53 pm
    Lisa said...

    @Jane, “I have to remind myself that we can only deal with today’s problems.”

    You just reminded me of the proverb, not quite apt but cute enough that I’ll take it. “Not my circus, not my monkeys.” Thanks.

  • a neurologist once said to me forgetting where your keys are Is not a sign of Alzheimer’s. Not knowing what to do with the keys when you find them could be a symptom. So please do not fret when you cannot remember all 13 items on your list of to dos. On the other hand worrying that our fates are tied to our parents is inevitable.
    I care for my mother with dementia and her mother had dementia as well. I can only hope they have more solutions in 15-20 years, but remain grateful for the good years that remain. The same Neurologist said regular aerobic exercise is one of the best things we can do for brain and physical health. So I compel myself to use the elliptical daily rather than use it as a clothes hanger..
    Stay hopeful.

    3:18 pm
    Mary anne said...

    @Karen, funny. I read “forgetting where you put your check book is not a problem, forgetting where you bank could be.”

    9:54 am
    Lisa said...

    @Karen, I too have the literature on exercise. I keep hoping that yoga counts, which I love, and would rather do than walk. But I know I’ve got to persevere with the brisk walking. Sigh.

  • Ah.. yes.. that cold feeling in the pit of your stomach. Waking to a feeling of dread… but of what? Been there. And you’re right, Lisa. Sometimes being able to put your finger on it helps. I put it down to my Irish grandmother. If things are going poorly I at least know what I’m worried about. If they’re going well, I’m always waiting for the other shoe to fall. Not all the time, of course. Just every once in a while I get a little jab. Like you, for the most part, I focus on the joys of my life: trip planning, the fresh snowfall which will make the skiing tomorrow fantastic, Hubby making my favourite dinner tonight. Which is any dinner he makes, actually, that I don’t have to:)

    9:58 am
    Lisa said...

    @Sue Burpee, Also a sense of humor like yours must help:). But yes, I do feel much better once I can see what it is. And in this case my approach to my fear was worse than the fear itself.

  • I understand you very well,more than you could imagine
    There are so many bad things that could happen and we couldn’t be afraid of them all
    Most of them would actually never happen,no one knows nothing for sure-so,don’t be afraid,you are tired and overwhelmed with a lot of things at the moment
    In moment like this, I do as Jane said above: “appreciate what we have in the present”
    Beautiful winter day,red amarillys and ilex in my big vase ,espresso con panna in the morning…..
    Have a nice weekend

    10:03 am
    Lisa said...

    @dottoressa, Thank you. Words of great wisdom.

  • Lucy, Remember Miss Scarlett O’Hara of Tara…and Gone with the Wind?…Well, Miss Scarlett gave me one of my favorite axioms…and a neat life preserver when I need it..
    When all around me is creating distress and I am deep in a ponder, I channel Miss Scarlett to send me her words…I will worry about it tomorrow…Tomorrow is another day…Put those worries that you absolutely can’t do anything about on tomorrow’s list and plan to worry about them first thing tomorrow…The neat thing about this is a lot of the time…tomorrow never comes…(This is not a fiddle de dee attitude for something that demands your input right now but rather for those scenes you write in your own imagination…You know the ones I mean…The ones you don’t really need to consider just now…)
    You have had a trying year…Certainly, your worries are not trivial…They can just be put on tomorrow’s list…Enjoy today…I send you my best smiles…

    Oh and remember…”Life is short…Buy the shoes”……Ethel

    10:08 am
    Lisa said...

    @Deede, Life is short. I bought the shoes. Cognac leather sneakers from Ecco;). And yes, I try to tell myself that nothing can be done in the middle of the night. Except some good reading.

  • I often walk into a room and can’t recall what I was after…God I hate anxiety isn’t it the worst? xxx

    10:10 am
    Lisa said...

    @Faux Fuchsia, It is the worst. The walking into a room thing just comes from thinking and walking at the same time;).

  • I’m so sorry you’re feeling anxious. Dementia in your mother will do that to you. Go easy on yourself. I’ve found Headspace, an app that is feee for the first 30 days, to be useful. Peace.

    10:11 am
    Lisa said...

    @MJ, Thank you. I made sure to go to the good yoga class twice last week. Definitely helped.

  • Your fears are understandable with what you are facing with your mom. My father passed away of “dementia” in 2007, and I understand why you would be anxious. “Last spring I attended a lecture given by Dr. Rudolph Tanzi who is one of the leading researchers on neurodegenerative diseases. He was so knowledgeable, and said he takes two supplements each day – cats claw, and something else which I forget (Uh-oh!). Here’s more about him and his research:
    I hope you find peace in your heart and rest in your spirit to live without fear. xo

    10:15 am
    Lisa said...

    @Candace, Great resource, thank you. And I’ll pass the supplement info on to my siblings.

  • My brother, who is 16 months younger than I am, started showing signs of dementia in 2006. He was 53 at the time. He’s now in a memory care unit, he can no longer recognize his wife. Every time I can’t remember the name of a band, find the keys, etc. etc. it just gives me a zing of fear. It just sucks. I have no words of comfort, other than to say I know how it feels.

    10:21 am
    Lisa said...

    @Allison, Oh I am so so sorry. FWIW, when I get decent sleep my memory functions best. I hope you can sleep.

  • Do crossword puzzles. Make lists. Put sticky notes on everything. Memorize things: chronology of the kings and queens of England, the presidents of the USA, all the main characters (plus nicknames) in War and Peace and Anna Karenina. Practice your French. Learn Chinese. Take up knitting. Study maps of unknown cities and plot routes from point A to point Z in each. Read a novel and summarize it. Write a novel. Follow a recipe. Create a recipe. Study the dictionary. Eat lots of fish, drink lots of water. Do origami. Avoid alcohol. Keep up with friends.

    Never give in to the cloud. Never let go of your sharp shining sense of who you are. Write your name on the back of your hand, and make your name your mantra. Draw a picture if the letters escape you.

    And remember that even if you become lost to yourself, you are not lost to the people who love you. They will remember, even when you can’t. You will always be safe, because they will always be with you.

    10:23 am
    Lisa said...

    @Victoire, Can I laugh? You made me laugh! If I ever tried to memorize something like the kings and queens I’d have to drink so much wine to dull the pain that I’d kill more brain cells than I saved!

    But this, this,

    “Never give in to the cloud. Never let go of your sharp shining sense of who you are.”

    I think I can do. Thank you. And I think a lot about the people I love, and how to make sure that, if I decline, they bear enough burden that they feel they’ve done their best, that they’ve anchored their love in action, and no more.

  • I totally understand how you feel Lisa. It must be getting older, but I think of my mortality daily and especially at the holidays for some horrible reason. I guess it’s still from losing my mother. I think the holidays really bring home so much of those feelings as we reflect on years gone by, and changes. I think everyone with a parent who is dealing with this probably feels the same. Take care and try to enjoy the little things of the season. Be good to yourself. Kim

    10:25 am
    Lisa said...

    @kim, Thank you. And I can only imagine how the holidays bring back the loss of your mama. <3

  • I think you have to choose what you are going to worry about here, and put the rest to one side. I have done this for most of my life. I’m your age, but I lost both my parents to cancer when I was a young child. I am well aware that this puts me at higher risk, and was relieved when I reached the ages at which they died, but it has never been something that was constantly on my mind. Where would it have got me? I am grateful to wake up each morning, even with increasing aches and pains.
    We do not know the future, good or bad. Just as well, perhaps. So why worry? Put your affairs in order and let your wishes be known, if that would make you feel better, but then let it go and enjoy!

    10:28 am
    Lisa said...

    @Linda, I think I was not worrying so much as I was trying to, with the power of thought and words, cast a spell to control what was going to happen. Which, as you point out, isn’t possible. Am hoping to enjoy as much as is possible. :).

  • One of your very best posts. It’s such a comfort to learn that the dark caverns of my mind where fear hangs out are not unlike the next woman’s. Thanks for a beautiful piece of writing that celebrates our humanity.

    10:30 am
    Lisa said...

    @Crystal, You are more than welcome, and thank you for taking the time to encourage me.

  • My mother also has dementia. My siblings and I always say “There will be better drugs when we are that age”.

    10:30 am
    Lisa said...

    @Eileen, Which is a totally reasonable thing to think. The sheer numbers of baby boomers aging ought to drive something, right?

  • Oh, Lisa, I hear you. This anxiety is totally understandable. It would be strange if you didn’t have it! I can personally relate on the level that my mother and aunt’s breast cancer are non-hormonally receptive, triple negative. The likelihood is that it was caused by a genetic mutation but there’s no test for that mutation at this time (it’s not BRCA related). I’m either going to get it or I’m not (which is the way for everything, I suppose, but you know what I mean). At first it was hard to know this. But I’ve adapted as one does.

    Now, dementia is a different scenario. Breast cancer may or may not kill you, but it generally leaves your memory in tact (effects of chemo and mental distress notwithstanding). And, fwiw, I watched that Julianne Moore movie about Alzheimer’s, while on the plane home from Ireland. I spent a week freaking out and I don’t have any family history of the disease. It’s fucking scary by any standards.

    But you are your own person – made up of only half your mother’s genes, influenced by lifestyle and a myriad of experiences that your mother never had. You are also managing this fear at a time when there is SO much new evidence about and treatment for dementia – of many sorts. It may not be able to reverse symptoms for those who have come to a certain moment in their journey, like your mother, but the research and treatments are profoundly encouraging. Imagine what they’ll be like in 5 years!

    Truly, I am confident that you are going to be yourself, as you know you, for a very, very long time, and hopefully until you take your last breath, but please know also that there has never been a more hopeful moment in which to grapple with this fear.

    Having said all of this – as a friend in anxiety (and other more fun ways too!) – I do know those deep, fearful places where part of you is living right now. My holiday hope for you, and here’s hoping I can impart it, is the gentle recession of dread so that light and freedom (its gorgeous flip-side) can once again become apparent. Kxoxo

    10:46 am
    K-Line said...

    @K-Line, And just to clarify, cuz I know I was not particularly clear, my mother and aunt received treatment for their cancer and are now gratefully living their lives “cancer-free” (though I don’t know if they’ll ever quite be free of what they experienced).

    6:03 pm
    Lisa said...

    @K-Line, Thank you. I am feeling much better this week. And I’m very glad your mom and aunt are cancer-free. It must have been so hard.

    As for future Alzheimer’s treatments, it’s all so early. We will hope. But me, in particular, I will give up the idea that I can prevent it by sheer force of will and thought gyrations. Spend more energy exercising instead. xox.

  • First of all, while I relate very much to what you write here — and to your readers’ many thoughtful comments — the sentence that sticks out most for me is in your response to KC: “I actually feel less bad than this post might indicate.” There’s just something about being able to pin the anxiety down in words that really is powerful, and knowing there are sympathetic ears/eyes to hear/read our fears diminishes them considerably.
    My mom’s cancer outraced her cognitive impairment, so that she managed to hold on to more independence and identity, perhaps, than yours, but these last years since her death have me projecting so many aspects of her life onto my own future, despite strong differences between us. So I’m thankful for your thoughtful progression, in this post, from anxiety and dread to a measured assessment of what can be done, to a determination to live as mindfully and joyfully as possible in the here and now. Hope you had many bright moments this weekend. xo

    6:14 pm
    Lisa said...

    @Frances/Materfamilias, There is something in pinning it down, and, in realizing that my attempt to make it better was making it way worse. I am happy your mom got to hang onto identity. It seems so odd to see it disintegrate. Almost as though I can’t say what “it” is.

  • A father in a slow decline at almost 94, a mom with some short term memory loss (or is it just stress from dealing with my dad?) and I have become acutely aware of how important it is to have your “affairs in order”. Since my brother is a lawyer and the executor of my parents’ estate…I assumed they had all their paperwork taken care of. O No!! Not at all. My father’s refusal to go to the hospital initiated a flip through all their files. No DNR, a will that had not been updated since my other brother died (although they had crossed out his name), no Power of Attorney, no Medical Power of Attorney. Nada that was worth while. I’m only 60 but that is big on my list of things to handle/update this year. Also I vow to make plans to move some place more amenable to aging in place by the time I am 70 so that I will not be like my parents who at 90/91 were forced to decide on assisted living in a 24 hour period after a hospital stay. Denial serves no one. Planning ahead brings peace.

    12:39 pm
    Tracey said...

    @Nelson Bartley, Well said Nelson, I absolutely concur, and your words echo my own thoughts about downsizing at an age when one can choose. I cleaned out my mother and step-father’s house after they both died (2 years apart) from terminal illnesses but had been invalids for 20 years (MS). Their affairs were a mess – we had a step-sibling who fleeced us for all he could – and nothing had been thrown out of the cupboards for 20 years. We had to hire huge skips to literally dump all of their ancient household items into, plus gave away as much as we could. It was not a pleasant task and certainly one I do not wish on my children. We can live without so much stuff, why not downsize. To not do so is completely selfish and only ensuring that those around us will have to pick up the pieces after us. Anyway, great comment and well said. Best to you and yours.

    11:18 am
    Lisa said...

    @Nelson Bartley, And Tracey, I have made the same vow. I don’t see anything so terrible about assisted living. My mother is very well cared for. My sister and I agree we would like a post-industrial/Burning Man aesthetic more than the current wave of faux Mediterranean hotelish places, but I’m thinking with all of us old hippies heading their way, that look would be available by 2026.

  • Thank you for sharing your thoughts. I don’t have any advice to add but just wanted you to know I am sending support over the internet.
    This in no way compares to yours but I sometimes get a wave of anxiety for seemingly no apparent reason, just a sharp feeling of impending “something” and a feeling of a lack of future time. I found a funny word that sort of describes it, torschlusspanik.
    Sometimes defining-labelling these feelings is helpful in itself, hopefully your post did that a little for you.
    You have had a rough year, hope you will have more bright spots in 2017. Thank you again, Suz from Vancouver

    11:20 am
    Lisa said...

    @Suz, Thank you! And I love that word. Labels can be dangerous but sometimes they can be really really useful.

  • Despite the advice of Internet web sites that claim that whatever will prevent mental decline, there isn’t much you can do about it. Thin, fat, crossword puzzles, marathon runner, couch potato — at the population level those things seem like they might make a difference, for any one individual it’s more a roll of the genetic dice.

    My experience, which isn’t unique, is that with age the ability to focus with little effort dissipates like the wind. Any little bit of upset can send it packing. The stress of acknowledging that a beloved parent is sliding, the upheaval of packing up a home, a surprising election, and things you used to keep in hand without effort fall by the wayside.

    The digital world with it’s pings, “new post” messages, and notifications doesn’t help at all. There are so many things to grab our limited attention. All that anyone can do it try to Stay Calm and Carry-on.

    11:22 am
    Lisa said...

    @RoseAG, Focus does become more difficult. That said, I find the attempt, and that discipline, kind of comforting.

  • Hi Lisa. I hope reading about the dread we all carry at some level helps to ease your own anxiety, or at least give you the small comfort of not feeling alone. You can think about us when it takes you off guard if that helps; we can think about you. For me, it’s an eye condition that *could* become malignant. The treatment is removal (not only of tumors, but of the eyes). Six month checks by the retina doctor for the rest of my life. I used to relax in between, but I’m finding that more challenging as I get older. There are other worries, too, as there are for all of us. But the eye issue is my version of your mother’s Alzheimer’s. Like you, I am too often “rehearsing the future.” A terrifying practice. I hope we may all become zen masters at present-moment living. Thank you for writing about this. When I see your blog posts in my morning email list, all the rest waits. Love and peace and Merry Christmas to you, Lisa.

    7:40 pm
    Lisa said...

    @Linda, It really has helped not to feel alone. I wish you absolutely all good fortune with your eye condition. And thank you so much for the kind kind words. Love and peace and Merry Christmas to you too. <3


    2:40 pm
    Ann said...

    @Marie, What she said! And yoga. And fast walking. And all the things that make you smile. Make a list of those … ;)

    These stressful times will pass. Spring will come again. You’ll go back to Paris. Someone will kiss you and make your heart explode. Dark chocolate and red wine are not extinct.

    To life! Sending you a hug.

    7:49 pm
    Lisa said...

    @Marie, Yoga has a lot of meditation opportunities, and I have taken every one I could.

  • It is not easy watching a parent in their declining years…
    I remember how anxious I felt watching my father as he went for his 3 day a week dialysis treatments and the affect it had on him. He was a completely different man as he changed before my eyes.
    It must be very difficult to see your Mom in this state…
    I understand a little bit of what you might be feeling as my husband’s mom has dementia or Alzheimers…I think it must be misdiagnosis as Alzheimers progresses much faster than dementia and because she has suffered with it for almost 20 years.
    Worry beads, or a rosary can soothe the troubled thoughts that often plague us.
    I hope your anxiety will not increase and that you can find some respite or at least have a break from it from time to time…if it does continue there is no shame in seeking professional help.

  • Lisa, you expressed the same dread I struggle with as an aftermath of my Dad’s dementia. Thank you for verbalizing it for me and helping me to see that I need to stay in the present and enjoy what I have. I don’t want to end up like my father and I worry about it alot, especially when I forget something.
    Hope you and your family have a wonderful Christmas and that your Mom remains in a comforted space all the rest of her days.

  • Greeting from South Africa
    I am a very anxious person and worry about all kind of things but I must tell you the things I didn’t ever worry about were my husband dying at 51 of cancer and me getting Parkinson’s Disease about 11 years ago. No one in his family as far as we knew had ever had cancer and the same goes for my family, no one with Parkinson’s(I am doing well)

    So what is the lesson, there isn’t one except that’s life and you mainly manage and all the worrying in the world doesn’t protect you and life never turns out quite how you thought it would but we do our best , take care Pat

    p.s. when all else fails a glass or two of wine helps……

  • Read this on Saturday and have been thinking of you since. Anxiety is a terrible thing; it can feel like an inescapable physical pain. It helps me when I can realize what is making me anxious as you did. It also helps me to stay as much in the present moment as I possibly can; to practice the simplest meditation of lying on the floor and being still, sitting in a chair practicing quiet breathing, noticing the sensations in my body; feeling an emotion instead of pushing it away; walking; stretching; hugging and being hugged (good, long hugs); reaching out to others, telling them how I feel, and asking how they feel so I can enter their life and leave my own. A surprisingly powerful antidote to anxiety for me is practicing daily gratitude. When my mind shifts to worrying about present or future problems, I look for things to be grateful for. There are a surprising number of things, though my analytical mind likes to argue about them. On Thanksgiving I was having a particularly anxious day. I happened to read an article about gratitude that removed the heaviness from my chest and let me enjoy myself in a different way than I would have otherwise. My sweet, smart best friend from childhood and I were talking the other day about our present knowledge about the powerful plasticity of the human brain. I love my brain’s ability to create new positive neural pathways to overpower the old negative neural pathways. In a way, that is our superpower. I hope your Monday is a good one. I suspect you shared my morning walk’s sunshine, and my afternoon’s present overcast. I’m thinking a fire in the fireplace, or what passes for one using an eco-log, and a cup of green tea. xo.

  • I found lined post its on the office supply shelf the other day. It made me so happy because I like them best. I told my boss it’s the little things that make us happy. He told me that was sad. I said oh no, cherish the little.
    One breath at a time.

  • Glad to hear that naming your anxiety has diminished it.

    Another thing possibly cheering thing; my grandmother in law had dementia and it was so much milder and more gracious than it could have been. She passed away last weekend (of a chest infection) but to the end she recognised us as family (even if she missed the names or the exact relationship), was always pleased to see us, always smiling, very rarely complained even though she didn’t want to move into the (very good) care home. She changed, but she was basically okay, right up to age 89.

  • There’s such a thing as anticipatory grief, may be adding to the anxiety. So sad to lose the person who once was and to live alongside the knowing of what’s to come.

  • My mother was one of the mostly intellectually alert and capable people I’ve known in my lifetime. Bright, witty, incisive, disciplined. The positive and admirable list of traits could go on and on. But she got dementia in spite of all those qualities. I live with that same uneasy fear that you do, and I don’t think all the crossword puzzles or mental tricks will save us if there is a physical reason for us to get this disease. But my mother made a lot of mistakes in caring for herself–rarely exercised, smoked heavily, ate poorly. I don’t make those mistakes. I hope that will help. I don’t know but I can try.