Sunday, December 27, 2009

Living With Lewis


My husband, Flip, is losing ground fast. Every day he becomes a little less himself as his own body turns on him, but there are no weapons to defeat an enemy like Alzheimer's Dementia. He complains that something inside of him is saying "fuck you" to him all the time.

In the earlier stages when he was still more lucid, he named his disease "Lewis" because, he said, "It's good to have someone to blame." Flashes of his old humor take me by surprise now but remind me that he is still in there, still aware and angry and frustrated. At some point he will lose even this awareness. I don't know if that will be better or worse. I strive to ease his life while he still knows who I am, to fill him with my love so that when he is adrift on an ocean of confusion, he will still feel the warmth of it. Too often, I fail miserably. Lewis makes deep inroads every day and takes more of Flip away from me, and from himself.

Well-meaning people tell me that I must take care of myself and while I am grateful for the solicitude, with all respect they don't know what they are talking about. They earnestly remind me that if I do not I won't be able to take care of Flip, but the plain reality is that my needs do come second now. This disease has changed everything including the dynamics of our relationship. Sometimes the only thing that keeps me going is my absolute certainty that if I were the one Alzheimer's had chosen, he would do the same for me. He is probably a better person than I am.

Flip was once a highly articulate man who now struggles to express the simplest thought, and often gives up or simply forgets what he wanted to say. He was a professional musician who could play guitar, bass and drums better than most people. He was also a graphic designer, a talented photographer, and an avid bicycle rider. Now he is nursing injuries from his latest fall last week, lacerations and painful rib bruises.

I took his Bianchi to the bike shop for repairs. "You should see the other guy," I said. They have seen us often in the last year and didn't even charge me this time. Of course I wonder if Flip should still be riding since he now falls a lot, but as long as he wants to I can't see taking that away from him, too. He has already lost so much. He says that he feels free of Alzheimer's only when riding his bike. He wears a helmet to protect his brain even as it abandons him.

His mind now works in strange ways which seem illogical to me because I am still operating on the old brain model. Alzheimer's has its own logic as the amyloid plaques and tangles which characterize it struggle to perform tasks he has forgotten how to do. He has become a black hole into which every possible household item disappears. Almost nothing remains in its assigned place and it often feels that I am living in a world invented by Lewis Carroll or Franz Kafka. While cooking, I will reach for an implement only to find that it is not where I have always kept it; in fact, it is nowhere at all. Right before Thanksgiving, I noticed that an entire shelf of glassware had disappeared. Flip tries to keep busy by "helping" but his sense of spatial relations is greatly impaired. I suspect he couldn't figure out where to put the glasses, so he threw them away. This was my wake-up call to hide anything of value, which is a good idea in theory but not always possible. We live in small quarters and he has access to more of it than I do since he is over a foot taller.

In our former life, Flip and I spent seven years renovating an old house ourselves. He replaced wood flooring, rehung the crooked front door, plastered giant holes in the walls that had been concealed with ugly paneling which we removed, rewired the electricity and installed new copper plumbing, tiled the bathrooms, made structural improvements, replaced the chimney, painted everything inside and out and did extensive landscaping. The only thing we had done by professionals was a new roof which required removal of three former roofs, one on top of another. We turned an ungainly, plain house into a beautiful one with lovely grounds and sold it to move to California, where we live in an apartment.

We still have several huge toolboxes, but Flip is no longer able to hang a picture or replace a light fixture after changing a bulb. He has difficulty dressing himself although he usually refuses my help, and coat hangers bewilder him. He naps frequently, which his doctor says is because it takes so much effort to do anything when one has Alzheimer's. He is still unfailingly kind and generous, and the sweetest man I have ever known.

We belong to a support group for people with dementia and their caregivers run by the Alzheimer's Association. They divide us into two groups which meet in adjoining rooms and we are both fond of the people we see there. But sometimes we don't go because everything seems so futile. I am sure that passengers on the Titanic who had someone's hand to hold derived a measure of comfort from it, but the ship still went down.

I try to keep him entertained or at least engaged by planning small excursions, even if just buying a latte in a different neighborhood. I am now our only driver but we also do a lot of walking. San Francisco is a wonderful city to explore on foot because there is always something new to see, which is good because we are not able to travel the world as we have both always wanted to do. Alzheimer's has made our life much smaller. I try to see the lessons in that, and the opportunities for spiritual growth. Sometimes I feel angry, but anger in a vacuum is really a waste of energy which I badly need for our survival.

I worry about what will happen to Flip if I die first. This is a real possibility as I am older than he, but on the other hand, women tend to live longer and I am healthy. Alzheimer's has leveled the playing field so that it is anybody's guess which of us will go first. We have no plan in place for the future because I allow myself this small shred of denial.

This devastating disease is becoming epidemic as the Baby Boomers age. Those who study it say that they are seeing more and more cases of the early-onset variety. Flip is among the earliest as he was diagnosed at age 50, but in retrospect had problems for several years before. Alzheimer's is an equal-opportunity disease. It seemingly strikes people at random like an evil lottery. At present there is no way to determine who will get it, or why. Lifestyle seems to have little effect, nor is there any other reliable predictor. We know that smoking is more likely to cause lung cancer than not smoking, but there is no comparable preventive behavior associated with Alzheimer's. You are either lucky or unlucky. It does not operate by half-measures and takes no prisoners.

This is a most isolating disease. My family of origin, although wonderful, is only sporadically in my life while Flip's siblings and friends, even the ones who were supposed to be forever, have drifted away. It's disappointing but I don't blame them. They are dealing with their own concerns, and I think that when people don't know what to say they try to avoid the awkwardness by saying nothing. But it's lonely with only the three of us: Flip, me, and Lewis. Especially Lewis, who has become the most powerful presence in our lives.

Flip has asked me why him. I told him that the gods must have known that he could handle it better than I, and sometimes I even believe this myself. I cannot imagine being unable to form a sentence, or to read, or in effect to trust my own mind and body at all, without having an ongoing epic meltdown a permanent existential crisis. Knowing this makes me grateful for the small things in life, the things I always took for granted. Alzheimer's is the best reason I know for living in the present. I have learned that every day is its own holiday and should be celebrated, that while planning for the future is always a good idea, ones life can change in a heartbeat. No matter how intricately detailed our illusions, we are always flying blind. And perhaps this is a good thing because it keeps us sharp.

I think of Rudyard Kipling's famous poem, "If" which begins:

"If you can keep your head when all about you
Are losing theirs and blaming it on you,
If you can trust yourself when all men doubt you,
But make allowance for their doubting too;"


I substitute "Flip" for Kipling's "all men" and am mindful that I must be strong for both of us as I am increasingly called upon to keep my head while he is losing his, that even as he doubts me, I am by default the one in charge. Even though I would rather not be. And I must learn to trust myself more.

I try to live in the moment. I strive to honor and enjoy my husband as he is today while trying not to compare him to the man he was yesterday. I do this because I know that tomorrow he will no longer be the man he is today. But he is in all these aspects infinitely precious to me, and we will get through this challenge because we have no choice. And because life is always worth fighting for, even when defeat seems assured. The important thing is not to give up, ever, because a cure could be found tomorrow. And that hope makes today a bit sweeter.

52 comments:

yinyang said...

It is really hard to know what to say without sounding stupid. But, when you write about Flip, it's always very moving.

mischief said...

Loneliness.

Dear Heart - I'm seeing how these Pinter Pauses are increasingly necessary to give us time to think... and yet what are we to do while we wait for someone to say something?

I want to say I can't imagine... but I'm afraid I mean I don't want to imagine. I'm a coward.

I'm more certain of you the more I read. If I ever needed help I'd be so lucky if it was someone like you providing it. We'd all be so very lucky... which must make your Flip so very special to have earned your love. To have earned you.

Warty Mammal said...

I was wondering how life was going for you and Flip. I am so sorry that it's taking a massive dump on you.

You are right that amazing therapies are being developed and discoveries are being made. I'm going to think a good thought where that's concerned.

Big hug: ((((( ))))).

Lone Grey Squirrel said...

I pray for you and Flip. Even in this difficult time, may God grant each of you, the peace, love and strength to face this. And may you allow us to honor and celebrate you and Flip for your love for each other. God be with you in the coming year.

nick said...

That's so sad, Susan, especially the contrast between the incredibly talented guy he used to be and how he is now. How dreadfully random this thing is in how and who it strikes. It's good that Flip has someone so warm and devoted looking after him and making the most of whatever he can still enjoy and appreciate.

As you know, my own sister Heather is experiencing the opposite - her body is falling apart while her mind is still 100%. Her husband Mike is equally devoted to giving her whatever quality of life is still possible.

Eternally Distracted said...

I found your blog this morning and have reread your post twice. I find your descriptions of life with 'Flip' and 'Lewis' incredible and saddening. I am coming from a life filled with ignorance towards this disease, you have given me a much needed insight. Thank you for taking the time to share.

EsLocura said...

besos y abrazos sweet one

the walking man said...

Thank you for defining love.

A question: Would it help or hinder Flip to occasionally get a picture postcard from a place he never saw or lived?

Maria said...

I have dealt with Lewis (in my case, we called her Patricia) once and it was not someone who was in my immediate family. It was a friend, well...she started out as an acquaintance and evolved into my friend.

It was a fascinating, horrible, sickening, incredible trip and I was only on the outskirts. I can only imagine what the up close and personal looks like.

I do know this. Flip is fortunate to have you and vice versa. And you are such a wise person to know that it is just one step at a time. I find so much to admire in you. If you ever need to vent, let me know and I will send you my e-mail. Sometimes a stranger listens better, you know?

TechnoBabe said...

My dear, your sharing is a gift. You help me in so many ways. I am walking with you as you walk through a new neighborhood on your travels within your city, you may appear to be alone. I know the love of which you speak. codacici at gmail. Anytime.

heartinsanfrancisco said...

Yinyang,

You don't have to say anything. I think I just wanted to share what this disease looks like because it's on the rise. Thank you for reading.

Mischief,

Flip is indeed very special and I'm lucky to have him. I could never have imagined this illness, though, as I've had no previous experience with it.

Warts,

Eventually, they'll find a cure. They'll have to. But when is another matter. And thanks for the hug - it was a good one.

Calvin,

I think that nearly everyone is dealing with something difficult, and prayers do help so much. Thank you.

Nick,

I do know about Heather's terrible illness and have often thought that it might be even worse to have a mind in good working order but be trapped inside a body which can't function. My heart goes out to her, and to your whole family.

ED,

You're very kind and I appreciate your visit. I read several of your posts and was unable to determine which Middle Eastern country you live in, but have bookmarked your blog so I can return often. (I'm glad you're keeping the Parrot Killer away from Max, and I hope your iPhone was reparable.)

Eslocura,

Besos y abrazos back atcha', Sweets.

Mark,

Flip was fascinated by the idea of a book of poetry about Detroit so I read him some of your amazing poems.

Maria,

Despite the absolute horror of this disease, it is also sometimes fascinating to see a mind freed of its former constraints.

Thank you for your most kind offer. The admiration is mutual, and I adore your amazing ability to capture feelings with words.

Babe,

Ah, so YOU're the lovely companion I've sensed but can't quite see. Thank you for being there. The pleasure is mine.

thailandchani said...

It's good to get some insight into what it is like on a daily basis to care for someone who truly can't care for himself. It certainly creates perspective, how little most of us have to complain about~



~*

C said...

i think you should write a book and call it "flipping out" or "life with lewis." [no disrespect intended] because you have SUCH a knack for writing and captivating the audience by detailing the smallest of things and bringing them to life. everything flows. as the reader, i can place myself in your moments... although i will never really know what you go through until i walk in the same shoes... you bring the reader as close as possible.
i am so sad for you hon, your husband, and the situation you are dealing with. i wish there were a cure...
the only comfort i take from terminal illnesses is that one day soon, our loved one will be whole again when they leave their cage we call the body, as that is what it seems to become. their soul will once again be free, pure, whole and will have the ability to fly once more.

seriously, please consider the book idea, what better way to let the world see and know the flip you have loved and lived with as he transitions through this illness. i would think it an honor to him and the love you have for him.

i am glad to know you have a support group as i am sure you can easily feel so alone.

god has his hand on both you and flip. i pray for peace and strength to help you through this. you are doing everything you can for your beloved. it will never be in vain. and from what you say about him, i know he would be doing the same for you.

hang in there, hon. this too shall pass.

chris

Wanderlust Scarlett said...

It's so ironic that you posted this yesterday. I was thinking of you so much yesterday.
Thought that I would send an email to get an update. See how you two are doing. You were in my thoughts and prayers all day yesterday.

Wish I could give you a huge hug. I know... it is just a hug, or some words of comfort, or a shoulder to cry in frustration and grief on... but I gotta tell you; if I was on the Titanic, I'd much rather have a hand to hold as it went down than no hand at all and have to face that alone.


((HUGS))

Scarlett & V.

riseoutofme said...

I have no words.

But my heart goes out to you.

heartinsanfrancisco said...

Chani,

I'm just trying to spread awareness in my small way since in a few years, most of us will be affected by this cruel disease in some capacity.

C,

I am writing a book about this journey with the same title I gave my post, but the material is different.

I haven't progressed to the point of thinking of this as a terminal illness because there is always hope. Thank you for your kind words.

Scarlett,

Good point about the Titanic. Of course in a sense, we're ALL on a sinking ship, aren't we? And that's my cheerful thought for today. Tomorrow will surely be better.

Rise,

I know. Thank you.

Jo said...

Susan, I have followed your wonderful stories of Flip over the period of time that you have written your blog, and I feel I know him. I feel so bad for him and for you. Have you seen the movie "Away from Her"? I'm sure you have. It wasn't until I saw that movie that I realized the devastation that Alzheimers can cause to everyone. And Flip is so young to be diagnosed with this awful disease. It's not fair. We need to find a way to send Lewis packing. Forever...!

(((((hugs to you and Flip))))

Jo

Jameil said...

My grandmother & my grandfather's first cousin (Little Lizzie, who was almost like an aunt for me because she was raised w/him) both had Alzheimer's for years before they died. It was very hard watching them slip away. But something that comforted me when Little Lizzie died was a poem written by her son in which he asked God why he had taken his mother from him like he did, then said he had come to understand He made it easier by taking her a little at a time rather than all at once. It may be different for you, but that touched me. I hope Lewis can hold off a little more and let Flip shine through. Thank you for sharing your story.

meno said...

Thank you for writing this, even though it made me cry. Especially since it made me cry.

mrwriteon said...

That is just so lousy, Susan. My heart goes out to you both in this ordeal. You expressed the realities in your blog more effectively than I've seen before. It should be required reading for support groups.
The key for you is to keep yourself well and be as kind to 'you' as you can be.
Blessings and prayers to you.

heartinsanfrancisco said...

Jo,

From your lips to the gods' ears, please. I'll help Lewis pack if he'll just leave us alone.

I have not seen that movie but will put it on our Netflix queue. I've had no previous experience with this disease so it's been a kind of baptism by fire. Suffice to say I wish things had turned out another way for both of us.

Jameil,

I hadn't considered that there might be a blessing in losing someone by stages, but I think Little Lizzie's son was very wise. Perhaps there is some mercy in that. Thank you for giving me something to think about.

Meno,

So sorry I made you cry. I hereby dedicate the next funny post to you.

Ian,

There are many books on the subject. I even own several but haven't managed to open most of them. Leeza Gibbons wrote one about caretaking her mother called "Take Your Oxygen First," which is a brilliant title. I only got a few pages into it, however, despite being an avid reader normally.

secret agent woman said...

Oh, I'm so sorry to hear this. How hard. I cna't even imagine how hard, but I'm holding you both in my heart.

Molly said...

Words fail me. The loneliness and isolation must be the worst. All I can add is an enormous hug...

On a Limb with Claudia said...

In a world of such unremembering, I must say:

* I remember when this started. I remember the horror of the 'real' diagnosis.
* I remember the struggle for quality care
* I remember your first group
* I remember your car
* I remember your neighbor issues, the smoke, and the struggle to live in such a small space.
* I remember your embracing love for Flip, your companion and lover of life.

In fact,I remember you, your strength, your kindness, and your struggle almost every single day.

I see you. Thank you for giving me a new window. I was sure this was going on. It's nice to have a little confirmation.

So I add my blessings to your journey. May you find the clear, calm and possible road.

heartinsanfrancisco said...

Agent,

That sounds like a good place to be. Thank you.


Molly,

Hugs are good. In fact, they may even be the best. You are appreciated.

Claudia,

Thank you for always making me feel special. I treasure your insights.

abhinavbharat said...

it was a touching expression.

bless you

Amy said...

Susan, I just discovered your blog through Jo. I agree with "walking man" who commented that you defined "love." We marry "for better or worse, sickness or health." You are indeed a model, an example of strength and love. Thank you for writing such a compellingly honest account of Lewis.

Prayers for both of you and wishing you a tolerable New Year.

heartinsanfrancisco said...

Abhinav,

Thank you for your kind words and your visit here.

Amy,

Another newcomer to these blog shores, and from Jo's place, which is one of my absolute favorites.

Yes, we do marry without conditions but perhaps we only realize this when those conditions appear. Thank you for coming by. I wish you a wonderful New Year as well.

seventh sister said...

I wish we could be there at least for a while. I had thought we might have gotten to visit a few months ago but financial circumstances have prevented it. You are always in our thoughts and prayers. That is about all I have to offer.

love,
j

heartinsanfrancisco said...

Jackie, thank you. It means a lot to know that you think of us.

Happy New Year to you and that tall, dark and handsome guitar player.

xo's

Jocelyn said...

Oh, honey, you are in the midst of the biggest battle/slide/emotional tsunami/moment of courage that you ever will be, I suspect. I wish you continued courage and ability to snap up nano-seconds of joy, where and when they happen. Even from a distance, I love Flip and I love the couple that is you and Flip.

Most likely, you've seen this book, but if not, it could help to read an empathetic voice: http://www.wowowow.com/relationships/what-do-when-someone-you-love-tips-for-dealing-alzheimers-judith-fox-418952

heartinsanfrancisco said...

Jocelyn,

It often feels like a tsunami, but then I'm sure that everyone's problems, whatever they are, seem like that. Envy is pointless, though tempting, because we never know what another is dealing with. And there are always those nanoseconds of joy which keep us going.

I have several books about Alzheimer's but haven't read most of them because well, just because. I'll check out this unfamiliar one, though, because you recommend it. Thank you!

Bob said...

I think often of you and Flip, sending well wishes your way. I admire your strength and grieve your need for it. You write so eloquently that I am fooled into thinking I comprehend a situation that is incomprehensible. If for nothing else, Flip is lucky to have you.

Take good care.

Pamela said...

Beautiful. and very appropriate to have the subject word at the end. Both together show the balance. i wish you strength in the new year.

heartinsanfrancisco said...

Bob,

Thank you for your kindness. I also wish it were not necessary to find strengths I didn't know I had, for Flip's sake and for mine.

Pamela,

I appreciate your thoughtful remarks and wish you and yours a most happy new year.

Laura Lee said...

Honey.
My once fiery, zest-for-living mom is right now in a home for dementia, and started off as you are describing Lewis. She began repeating herself at about 47 after a divorce, sustaining a back injury (4 surgeries and lots of drugs), and both parents dying, and just went downhill. In that two year span we think she had mini-strokes or just a mental meltdown, since her scans don't show Alzheimer's.

Some family members are great with her, some others haven't visited in years (it's been about 7 now)and when they tell me it must be hard for me to see her this way, as I stand beside her wheelchair stroking her hair and kissing her forehead while she gazes at some far-off thing, I say, "She's still just mom."

heartinsanfrancisco said...

Laura Lee,

It sounds as if you know what's ahead for us better than I do. I'd like to believe that your mom still knows on some level that you are there, loving and caring for her, and that it comforts her. Anything else is simply too hard to contemplate.

jess said...

I clicked over because your comment at Jocelyn's made me laugh and then I read this, and it broke my heart.

I'm so sorry for what you and Flip are going through. Even in the midst of it I see the way you write about him, and I think- What a lucky man to have someone who sees him so clearly, and so clearly loves him. And then- It's not fair that you should lose each other this way.

Damn Lewis to hell.

Odat said...

Wow....Leaving lots of hugssss here for ya and as I've told you before you can always call me. I keep Flip's "Lewis" in my prayers everyday!
You got it right, "one day at a time"....that's all we have.
Peace

heartinsanfrancisco said...

Jess,

I prefer the laughter, too. If I ever had any doubts that life is unfair, Alzheimer's has disabused me of them. Thank you so much for your most kind words and your visit.

I tried to check out your blog but the bouncers wouldn't let me in.

Odat,

I have your phone number. Thank you again for caring. How is your mom doing? I have another friend in the same situation with her 96-year old mother, and watching her formerly beautiful, strong and capable role model disintegrate is tearing her apart, too. There oughta' be a law.

xoxo

jess said...

Oops, sorry about that. The closed one is an old inactive site. Zoe is the main blog.

Cloudia said...

thank you for this fearless sharing.
My heart goes out to you.

The Fool said...

Very moving piece...it says so much. You are good people, Heart. Best to you and Flip during these times.

heartinsanfrancisco said...

Jess,

I found it. Thanks!

Cloudia,

Thank you for reading it.

John,

Your kind thoughts are most appreciated.

bloggablogga said...

I find you an amazing woman of superior character.

heartinsanfrancisco said...

Bloggetta,

Thank you - but why?

bloggablogga said...

Why? In all of what I've read, you have taken every situation in your life, internalized it, mulled it over, and created a positive lesson. You could whine, throw a fit, find someone else to do things for you. You don't. You may crack, you may cry, resist, and drag your feet, but in the end, you've realized what is to be done and you've squared those shoulders of yours and found a way to make the most out of what you've been given and what you have.

Not everyone can do that.

heartinsanfrancisco said...

Blogga,

Wow. Thank you so very much. I so appreciate your kind words.

Eternally Distracted said...

I hope you don't mind but I have linked your post in a recent interview I did over at http://eddybluelights.blogspot.com/2010/04/sunday-roast.html I maintain that this post is one of the most significant that I have ever read.

Much love,
ED

heartinsanfrancisco said...

ED,

Wow. Thank you so much! I will check out that forum to read your interview. You're very kind!

Eddie Bluelights said...

I've just popped over to see your very moving post about your husband.

I have just been most fortunate to have Eternally Distracted on my The Sunday Roast column and we are so pleased with the magnificent memory of Secret Agent Woman to tracj the post down to you. As soon as I knew I put the link on the Roast Interview.

I have just read the post and I am very moved by it and you have my deepest sympathy for a very difficult and heartbreaking period in your life. My cousin had this - one moment she was a Detective Sergeant in the Police Force with a glowing career behind and ahead of her and suddenly in her case it all went and regressed downwards from there.

Nice to meet you and may I convey Easter Greetings to you ~ Eddie

heartinsanfrancisco said...

Eddie,

Happy Easter to you and how very nice to meet you here! I'm delighted that Eternally Distracted found your excellent blog for me - it's been awhile since I found a really good new one to enjoy as many seem to be going the way of Facebook. (I am on FB but prefer blogging for many reasons.)

I'm so sorry to hear about your cousin. It's a really dreadful and heartbreaking disease, and the slow but steady progression is a constant challenge.

Thank you so much for coming by here. I'll be visiting your blog often, now that I know it's there.