The Beauty of Alzheimer’s

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10258505_10204051371713269_10503581429538989_o“Beautiful place,” said my father, looking around admiringly.  “Nice . . . very nice.  Beautiful place.”

“It sure is,” agreed the attendant behind the wheelchair.  Quite charitably, I might add, because this particular hallway of the local VA hospital was not what I or anyone else could realistically call “beautiful.”  The lobby, now, that was a different story – all glass and sunlight and super-modern check-in terminals.  The lobby was bright and if not beautiful, at least relatively appealing.  The lobby made you feel better about coming to a hospital, like it just might be a halfway pleasant experience.  As if only the best and most cutting-edge medical procedures would be offered here.  As if everyone, in the end, would come out alive.

My dad, on this day, would almost certainly come out alive, and thanks to his Alzheimer’s Disease, no worse for the wear.  The reason for this particular ER visit isn’t really important; suffice it to say that whatever it was, my dad had forgotten about it halfway between home and hospital.  Also, that through powers well beyond my control, I had arrived carrying a vial of his urine in my purse.  Which also isn’t really important, and yet I find myself trying to work it into conversations every chance I get.  Believe me when I tell you that I don’t get many.

So we’d arrived at the hospital via ambulance, they’d done the normal things, and now, we were on our way to get a CT scan of my dad’s bladder.  Or kidneys.  Or probably both.  It was a bit of a hike from the ER to the imaging department, so my dad had plenty of time to remark upon the beauty of his surroundings; at the moment said surroundings included worn tile floors and closed doors, some featuring skull-and-crossbones-style DANGER signs.  Scuffed white walls, a utilitarian brown handrail running the length.  Every fifty feet or so, you might come across a large framed photo of nature at close range:  blades of grass as tall as my hand, a butterfly the size of an average pigeon.  Maybe it was those photos that my dad found beautiful, and maybe they actually were.  To my eyes, they were little more than a try and fail to cheer the place up: fancy pillows thrown on a threadbare couch.  I guess it could have also been that my dad was simply being nice, but I doubted that.  His faculty for pretending had been among the first to go.

“How long you been working here?” he asked the attendant now.  We’d just turned our third corner or maybe our fourth, each hallway having been indistinguishable from the last.  I really hoped someone would be around to lead us out of here.

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“Long enough,” the attendant said with a chuckle.

My dad chuckled too.  “Long enough, huh?  That’s good.  Nice place, you got here.  Very nice.  Beautiful.”

“He has dementia,” I said, as if I needed to say anything at all.  It’s not like my dad had embarrassed himself, or said or done something inappropriate.  Still.  I don’t know.  I guess I felt like I needed to explain, to let him know that my normal dad would not remark so enthusiastically on the loveliness of this barren and institutional corridor.  My normal dad was like us, is what I really meant.  My normal dad knew better.

What I wanted, I know now, was to retrieve my dad’s dignity for him, since he couldn’t do it himself.  Like it was nothing more than a lost contact lens.  And failing that, I at least wanted people to know that he once had it.  Not that it was especially undignified to call a hallway ‘beautiful.’  And not that my dad was ever particularly dignified in the first place.  But I wanted people to know what he was really like.

Because this wasn’t it.

“Just shoot me,” my dad’s sister once said, in a conversation in which she worried she might end up like her older brother.  “Better yet, dress me up in a fur coat and send me out into the woods.  Let the bears get me.  Just do not let me live like that.  Whatever happens, my God, please don’t let me live like that.”

Not surprisingly, most people seem to agree with her.  Most people hope mightily that the reality of Alzheimer’s Disease will never become their own, and not without good cause.  I often wonder what it must be like for my father, living with a brain set on permanent auto-erase.  The older I get, the more my brain becomes the one aspect of my physical self which I can appreciate unconditionally.  How would it be, for example, if I could no longer read a book because I couldn’t remember what it said from one paragraph to the next?  How would it be to not be able to follow along with your favorite TV series or sports teams or, I don’t know, political figures?  To not even know you once had favorites?  My dad can’t look back with misty nostalgia on his wedding day, or the days he brought home my sister or me, or, for that matter, yesterday.  He no longer knows what he likes to eat.  Nor does he know not to walk into a restaurant in flannel pajamas.  And underneath it all there’s a nervousness, a sense of fearful desperation that comes through strongest when he’s confronted with something he’s not familiar with.  Which, these days, is almost everything.

Still, I’m not entirely sure I’d rather be sent into the woods in a bear costume.

Anyway.  By the time we were finally able to leave the hospital, my mother was a bundle of anxiety.  Tired from a long day of waiting.  Tired of being the only real adult in a household that used to include two.  Worrying who’d be able to take them back to the VA hospital to see the urologist, wondering if my dad would really be okay.

My father, on the other hand, did not appear to be worried about a thing.

On the way out of the hospital, he agreed with someone who guessed he’d been in Korea – he had not – and then waved and said very pleasant good-byes to everyone we passed, including doctors and nurses, patients in wheelchairs, sad spouses there to visit their own sick veterans.  Most said good-bye in return, a few did not.  Almost all looked confused.  None of it made any difference to my father, who rolled along in his wheelchair as if he was the parade, the rest of us merely spectators.

And now we were in the car, weaving our way through the back streets of Oakland, a Pittsburgh neighborhood that houses several hospitals and a few universities, Carnegie Mellon and Pitt among them.  “Nice neighborhood,” said my dad, glancing around as we waited at a red light.    “What do they call this place, anyway?  Was I ever here before?”

“It’s called Oakland,” I told him.  “I’m sure you were here sometime . . . probably a long time ago.”

“Boy, look at all those beautiful new houses, huh?  You see that, Maureen?  Look at that!  Man, beautiful.  Really nice.”

 

My mom, sitting in the back seat, did not seem impressed.  I glanced around myself, taking in the ramshackle brick buildings, most occupied by students, all with some less-than-beautiful defining characteristic.  A badly tie-dyed sheet covering a picture window, crushed beer cans overflowing a recycling container, a battered recliner in a front yard.  From one second-story window, I could see Ronald McDonald smiling out at me, though whether it was the man himself or just a life-sized cardboard cutout was difficult to determine.  Granted, the buildings were big old brownstone types which, with some landscaping and help from several renovation crews, could certainly be beautiful again.  As it stood, however, they were a bit past their prime.  To put it politely.

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No. This is not what we were looking at.

“When did they build all these homes, do you know?” he asked me.  “Man, these are beautiful new homes, huh?  Big.  I just wonder when they built all this.  It’s a beautiful display.”

Even though “display” sort of made sense here, I was pretty sure it wasn’t the word he was going for.  I let it go, as you tend to learn to do.  “Yeah, I don’t know how new it is,” I told him.  “But I guess . . . I mean, it’s nice.  Was nice.  Is nice.”

“Huh,” he said.

“Yeah,” I said.

The light we’d been waiting at turned green; we managed to advance maybe five or six car lengths before it was red again.  Now to my right was a front yard featuring a dirt-filled kiddie pool, clearly meant as a flower bed but whose contents had long since gone to seed.  There were cigarette butts scattered throughout the rest of the yard, and the house itself had a screen door that, in defiance of any and all laws of nature, appeared to be attached with nothing but duct tape.

“Look at that,” said my dad, clearly in awe.  “Beautiful!”

The light was still red.  I looked over at my dad.  He was smiling, or at least forming the lip configuration that passes for his smile these days.  His shirt was tucked in, his thinning hair neatly combed.  And he was sitting up very straight in his seat – actually, he was leaning forward a bit, apparently anxious to see what new beautiful thing might lay around the bend.

From the backseat, my mother sighed.  “I don’t know what he sees, anymore,” she said tiredly.

“It’s the houses, Maureen,” he told her.  “Can’t you see the houses?”

“Yeah.  I see the houses,” she said.

And then the light turned green, and we moved on, neither my mother nor I able to see what he saw.

And, most likely, hoping we never would.

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58 comments

  1. I read this aloud to my husband. He thinks, from 2700 miles away, that Ed is adorable. He says eventually he may become mean…constantly. Perhaps there is beauty deep under the wreckage. He added that you write beautifully. I agree.

    1. Well, that makes it official – you have the best husband ever – a big huge thanks from PA to both of you.

  2. This is beautiful and sad and all those things a blog post should be. I often wonder what is going on in my mum’s head, what she thinks. At least on the days she is happy, it is only my own pain I have to worry about. On the days she is distraught though it is very hard. Thank you for sharing this – it really touched me.

    1. Thank you, and wishing more happy and fewer distraught days for you. And the same for my own mother – I know she sees so many more of the bad times than I do.

  3. Really, really well written blog Melissa ! (Are we still allowed to call you Missy?) lol

    I grew up around many many folks going through this stage in life…. It was be fore we had a name for the “disease”… Come to think of it, it was before we had ADHD and Autism too !

    I dunno, I kinda like to think that folks at this point in life really do find beauty and happiness and satisfaction in very simple things that we cannot comprehend as “normal” or “dignified”…. I think there is something special and eloquent about that. Oddly, this story about your father’s trip brought a smile to my face, and maybe that’s not so bad ?

    Take care, hope you are well !

    Todd

    1. Todd – thank you! To make people smile while reading stories of total despair is my goal 🙂 And your kind words mean a lot.

    1. Thank you…I hope your situation has bright moments along with the less pleasant ones. Or, should I say the exceptionally horrible ones 🙂

  4. I am sure that the article is lovely and maybe one day I will ready but for now all I can say is that your title only angers me. From personal loss, there is nothing beautiful about Alzheimers. I’m sure you know this but your title comes across as insensitive rather than engaging. You should think about retitling.

    1. Gordon – The last thing I hope to do in writing about Alzheimer’s is to make someone angry – I’m sorry for your situation.

  5. BEING A DAUGHTER IS A BLESSING TO GET ALL THE SPECIAL LOVE FROM DADDY . I love my dad and your just made me to love him more . GOD bless you AND your dad is a HERO.

  6. Thanks for the article… My dad was recently diagnosed with Alzheimer’s and we have no idea how to deal with it. The thought that there might be a day when he wouldn’t recognise us is quite nerve wracking and scary. But it has brought us together as a family and we have slowly learnt to cherish the moments we have.

    1. Srijani – I’m sorry to hear that. It’s certainly not pleasant for the family, and there really isn’t a good way to deal with it. Someone told me once that instead of wishing for what my dad used to be, I should try to appreciate (however I can) the way he is now. I hope you can do the same.

  7. My mother-in-law is struggling with Alzheimer’s. My father-in-law has taken a leave of absence as her diet has deteriorated. She was not a kind person, and as she has gotten more and more lost in her illness, she asks ‘have I done anything wrong’ or ‘are you angry at me’… It’s heart breaking, and I hope in her childlike state she never remembers the things she’s done. She use to say that if she lost her mind to just put a hat with antlers on and let her roam the country side during hunting season. I will say though, I have seen a love I did know existed between them. He is so gentle, quietly reminding her of things, asking her if she needs help. He has lost that brashness and replaced it with such deep patience. Thankyou for sharing your story. Thankyou for remaining ever present for your father, as you are now how his legacy will be remembered.

    1. How sad…and amazing how Alzheimer’s changes people, and not only those who are suffering from it. Thanks for the comment and all the best to you and your family.

  8. Alzheimers is beautiful. …it a return back to childhood.
    Like slowly erasing a drawn picture.
    Me and my grandmother visited her sister in law…..who was suffering from Alzheimers
    First few days…sympathy….next empathy…..later we just wanna leave.
    The arrogance and anger is horrible as time flies.
    Love u for how u are looking after ur father.

    1. Lena – wishing you the best. The website agingcare.com has a lot of info and support for people in your situation, you should take a look.

  9. Touched my heart to the core! Excellent display of writing! Had my grandfather read it too. He is also touched and moved by the way things are depicted by you in the above write up!

  10. This post reads as if I hear your voice telling the story. Your father’s sense of wonder and awe are inspiring, and hopefully will be a feature of the remainder of his days. Thank you for sharing this intimate part of your family life.

  11. Thank you for this beautiful essay. My grandpa also has Alzheimer’s and after reading this, I have a better understanding of what my grandma, and my parents are going through as they take care of him. Best way to cope with familial Alzheimer’s is to simply invite it, accept it, and live it with fullest of love.

  12. Dealing with Alzheimer’s Disease is hard on the patient and family alike. To be able to talk about this journey with us is brave and comforting. Your dad seems very pleasant and I like his view on the things that does not seem beautiful to declare that they are. This is great therapy for you, enjoy this time. Even though it is difficult you will be grateful in the end that you had this time with him.

  13. I have just started a blog on ageing, and read your story with real interest. I have known and also worked with people with dementia. I would love somehow to have a link to your blog. Is this possible?

    Susan

    1. Hi Susan, thanks for reading. If you read this post then you are already at my blog link – it’s at goodnessmadness.com.

  14. I think you gave him his dignity back just by writing this. At that moment in time he was happy, and that’s about as much as any of us can ask for. Hugs to you and to your mom and to him.

    1. Dawn, thank you. It’s true there’s nothing good about Alzheimer’s, but it does help you to see that if you can enjoy one single moment, you should. I love your comment.

  15. My grandma also has dementia, yet (for the most part) she is always in a very good mood and says similar things about areas being nice, and looking at colors, buildings, etc. Though this is my first visit to your blog, I look forward to reading more as I think it will be very useful in interacting with her.

    She reminds me to enjoy the present because for her, that’s all she knows – other than that her hair appointment is on Fridays 🙂

    1. Ashleigh – that’s cute – her hair appointment 🙂 My dad always remembers that he “has to” feed the birds every day. You are totally right, for them there is no past and no future but only the present.

  16. I totally understand your pain. But the beautiful part is that you know how to express your feelings on paper and probably relieve your pain by writing. Keep writing.

  17. I really needed to read this. It was so poignant for me. My Nan was recently put into a nursing home because she had broken her hip and has advanced Alzheimer’s and Dementia. Of course she didn’t remember breaking her hip, so everything was more complicated. She has no idea where she is, most of the time she believes she is at home and all these other people are visiting. She’s constantly ordering me to make cups of tea for the other patients, just so they don’t think we are inhospitable. It’s almost a blessing in disguise. Beautifully written.

    1. Lisa, thank you. I love that you are ordered to make tea, I only hope she is imagining herself to be the queen or some other type of aristocrat, wanting to make sure her loyal subjects are not thirsty 🙂

  18. As a CNA who takes care of many patients with dementia I was hesitant to read this because it isn’t always beautiful. Most of the time it isn’t. But your post did make me remeber the awe and wonder at everyday things that is so apparent in these people’s lives. I have a patient who forgets what ice cream is everyday. So while it is very sad to see him forget, each day we get to see him experience the wonder of ice cream. Its such a blessing to be able to care for these people. Great post!

  19. Simply beautiful…up until now I’ve never considered the beautiful glimpses that the de-cluttering process of Alzheimer’s might provide. So many years of taking our conscious experience for granted renders us bland. Thank you very much for added perspective.

  20. My dear late Mom, stricken with Alzheimer’s, said funny things, profound things, extraordinary things. One day, she said brightly, “Well, hello, handsome! I may ask you to marry me!” Another day, I asked her what was the most important thing in life. “The human touch,” was her answer. And another time, she asked me, “Do you want me to talk about Jesus? I know everything about Jesus. He empowers people. He helps them to learn about being hopeful.”

    Our family felt deeply blessed that she could communicate with us for as long as she did. We found beauty in that.

    1. I’m so glad you were able to see (and now remember) more than the misery of it. Thanks for commenting.

  21. Beautiful article. I work as a CNA-med tech on a unit that has many people suffering from Alzheimer’s and dementia related diseases and every day I am amazed at the strength and compassion their family members show through countless up’s and down’s with their loved ones. I get attached to these residents just working with them so I can’t imagine how their family members must feel watching them slowly (or sometimes quickly) decline.

    1. Brianna – thank you – and it’s good to know that there are medical workers out there who do get attached. It has to be hard for you, but your patients are lucky to have you.

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