We are visiting a new neurologist today. I don't know if he's an Alzheimer's specialist, but we're shopping for an upgrade. Flip's present doctor is like the Masked Man. She comes into the examining room shooting words from both hips to knock us dead with her knowledge, then dismisses us. I'm sure we can do better. He deserves better. Someone who will answer our questions and address our concerns, who will actually give a damn.
Last night, Flip asked me if the doctor would be giving him scans. "No," I said. "We'll just be talking with him. We're interviewing him to see if we like him."
"Ok. But if he uses the word 'ga ga,' we're outa' there." "Or 'scrambled eggs'," I added. "'Nut job.'" "He'll get a knee to the groin," said my gentle husband. "There's your nut job right there."
Thursday night, we're going to a lecture by David Shenk who has written a book about Alzheimer's, "The Forgetting," which I'm reading now. It's depressing, to say the least. The disease has reached epidemic proportions. The prognosis is horrible. It is incurable, in part because nobody knows what causes it. Flip is phenomenally young for this diagnosis. An unwelcome precocity. There will come a time when I, who am older, will have to think for both of us. Contrary to popular belief, this is not what anyone wants in a relationship.
As some of you may know from a previous post, we've been dealing with this for a few years. I have vacillated between despair and denial, and have not always been as patient as I should be. I struggle daily with this challenge. It must be one of my big life lessons because I'm not there yet. I believe that we come into each incarnation intending to learn specific lessons and that life gives us the opportunities to learn them. It provides these opportunities with increasing urgency, knocking gently on our door at first and continuing to knock harder each time. Eventually, if we still don't learn, it kicks the door in.
It would help if we could remember what our lessons are, but we come into being with full amnesia, or it sets in soon after our birth. I remember being conscious of a fully-developed adult mind living inside my baby body, but when I tried to communicate my thoughts, all that came out of my mouth was baby-burble and my parents laughed at my endearing helplessness. All my attempts to express myself were frustrated by the limitations of this inept body and at some point, I gave up and became a new person who had to relearn everything I was born knowing. I wore diapers.
It is heartbreaking that Flip's illness provides an opportunity for me to learn patience, even as I understand that we are all here to learn from each other. Our lives are intertwined and every one of us is a mirror and potential lesson to all who inhabit our world. There is both comfort and pain in this. It is also a great inducement to treat others kindly.
Alzheimer's oddly imitates the learning process of children, but in reverse. Like a sharpshooter, it gradually picks off all the skills a person possesses, taking him progressively backward as he slowly but surely unlearns all that he has spent a lifetime learning. I already know the prognosis. I guess what I want from this new doctor is hope. And I'm not sure that he can give that. We will probably have to settle for kindness.
50 comments:
You have each other. Hold on to what you can.
And don't forget Susan in this process, at any point of this process. You are a human being that needs to sleep, and shop and drink tea, and write, and laugh and cry. Give yourself time to breathe. Regularly.
Good luck today, and on Thursday and every day.
Thank you so much, David, today and every day.
Big hugs for you and Flip. Fingers and toes crossed that the new doctor will be a good fit for both of you.
Susan, this has to be the most eloquent post I have ever seen written about the agony of Alzheimers, and one person's attempt to comprehend the cruelties and mysteries of life.
Molly, thank you for your kind wishes and hugs. They are both greatly needed and appreciated.
Eastcoaster,
I have to say, I am learning a lot from Flip about how to live in the present, which he has always understood better than I.
When I contrast his beautiful acceptance of life in all its mysteries with my own constant need for adjustments, I am truly humbled.
I'm so sorry to hear this; I hope that some brilliant minds somewhere come up with a cure for it soon.
All my best wishes and hope for you.
My dear. I have to applaud you for your strength, no questions. My father died of Alzheimer's after almost 15 years of, as you said, being slowly turned back into a child, a little tiny piece at a time. I wasn't able to deal with it until after he was gone, and even then not well, but my mother soldiered on, jaw set and mind resolute. She stayed with him every day in the VA until the last.
You humble me, know that? You and Flip are facing a terrible thing with calm dignity and resolute strength. I can only hope that me and mine do the same if I'm the son who has drawn the short straw.
Hey - I have a good friend who is a neurologist here in Denver (well Boulder). Would you like me to ask her for a referral?? She's very kind - quit her practice to go into hospice work. Would that help?
My husband has a mysterious illness. I was going to blog on it today, but chickened out. So I have some vague understanding of what you are going through.
I'm just sorry.
I agree with you that this is a huge life lesson for both of you. Flip will learn how to be "taken care of" which is something men in this culture are taught shouldn't happen. You will learn patience.. as you said.. and you will both learn to live in the moment.
Still, I do hope this doctor will be able to give you some needed answers ~ and also give you knowledge of some resources that will relieve some of the stress for both of you.
Peace,
~Chani
http://thailandgal.blogspot.com
Scarlett,
From your lips to God's ear. I hope so, too.
Irrelephant,
First of all, I hope you are not that son. It isn't necessarily genetic. Perhaps none of your father's children will inherit it.
I am going to find a support group so I can learn from people like your mother.
Claudia,
Such a kind offer. Thank you. I'm happy to say that we both liked the new doctor very much, and signed a request for Flip's records to be transferred.
My favorite cousin died of cancer in Boulder a few years ago. She may have known your friend, who is doing very worthy work.
I'm concerned about your husband. I hope that it isn't serious, and that it goes away as mysteriously as it appeared. Good luck to you both.
Chani,
The doctor allowed us to tell our story, which was a big improvement over the other one. He seems to have some personal warmth, and remarked that he always appreciates second opinions because he doesn't know everything, which impressed me.
He can't make the disease go away, but it's so important to be able to talk to your doctor. I think he's a keeper.
I have yet to read one of your blogs and not take away some sort of insight, emotion or lesson. You are one hell of a classy female, I wanna be just like you : )
Eslocura,
But, but, but... I've already signed up for Eslocura lessons. Wanna trade?
A very sad and frustrating diagnosis indeed...but it's heartwarming to read your take on how life gives us opportunities to learn things. I fully agree. A warm hug to both you and Flip...you are both in my thoughts.
La Cubana,
A very warm thank you from both of us. Your kindness means a lot.
I can't imagine what it must be like to be dealing with the early stages of Alzheimer's, but you're going into this so strong and with such a positive attitude. I hope that this doctor will be the right fit. I'm wishing the best for you two.
Oh my. I am a relative newcomer to your wonderful writing, so this was startling news. I am so in awe of you and your attitude. That this is an opportunity to learn patience and understanding. I sincerely wish both of you the best: luck, karma, prayers, doctors, and support.
V.
I type this most gently: there will come a time, too, of the greatest pain, when you need to save yourself. I would never express that idea, except our family has been dealing with Alzheimer's these last few years, and it is only recently, when Grandpa moved into a memory unit with care there, that his wife, still in the independent living section of the home, stopped accompanying him to the grave. She is better than she's been in two years, and I know, from my perspective as a spouse, that this is what Grandpa, in his best days, would have wanted.
I have repeatedly told my husband not to sacrifice his life for mine, if I am unaware of where or who I am.
Of course, Alzheimer's, being as devious as it is, works on a continuum, where sufferers are often all too aware of what they've lost and are losing.
I don't think there is any disease ultimately uglier or crueler.
And I know I've said nothing comforting or uplifting here. But I also know you understand that I wish nothing but strength and love for you and Flip. You are amazing people.
So many things. Judy and I took care of her Aunt for years until she succumbed to alzheimers. We took her fishing because she loved to go fishing, and we continued until she couldn't remember what fishing was. We took her out for BBQ and onion rings with a spicy sauce until she couldn't remember them either. She was in a nursing home, but she would get a gleam in her eye when I took her wheel chair and put her and the chair in the car.
Hilda drank strong coffee every day from the time she was in the third grade. I always made sure she had a cup, until she forgot how to swallow.
We approach her disease with as much normal life for her, which included music, food, crafts, her practicing her religion, seeing her friends, going to local family events with us, and living her life as much as we could help her to live.
Susan, as with Hilda, I will always be on your side.
Monty
I am humbled by this post.
You are in my thoughts and prayers.
Illness is never good in itself. Yet where there is love, there is always hope and there is always light in the darkest night. I hope you will find a more caring doctor. God bless.
HEY GW CAN YOU HEAR ME NOW? AREN'T YOU JUST WONDERFUL AND PROUD THAT YOU STOPPED STEM CELL RESEARCH IN IT'S TRACKS 7 YEARS AGO...YOU ASSHOLE!
Susan - (I know your name from the other commenters) - sounds like you are being incredibly brave....and your poor lovely Flip too.
What a scary thing to have to deal with.
My partner had a heart attack three years ago - (he was only thirty -five, thin as a rake and very, very fit - but he smoked) and I know the shock of having to deal with such a condition WAY before you expect to. It's incredibly frightening and makes you realise that every day is precious....and that you should try and be nice to each other (no one is a saint, though)
(And you write really, really beautifully)
Take care of yourself.
oh - and I hope you and Flip find the kind of Doctor you want and need and deserve.
Susan I am so sorry. I hope the new doctor offers kindness and much much more. Perhaps a study, an experimental treatment-something.
I loved Flip's comment about nut job.
My love to both of you-
urban urchin
my heart goes out to you. I don't know what else to say.
Julia,
Thank you so much. The doctor seemed nice and didn't offer any false hope, so although I am still hoping for the disease to stop in its tracks, I appreciate his honesty.
Voyager,
There really are no words to express how I feel about our situation, but I appreciate your kind wishes.
Jocelyn,
I do understand that your words come from a caring place. I am not ready to think of the later stages yet except in generalities because I'm still hoping that the diagnosis is wrong, or that the disease won't progress. (And yes, I do believe in magic.)
Thank you for sharing your thoughts, as always.
Monty,
I know this is not the point, but I can't imagine anyone giving an 8-year old coffee.
You are right about keeping things as normal as possible for as long as possible. I think everyone would want that. I'm glad Hilda had you and Judy.
Riseout,
And I am humbled every day by Flip's courage and equanimity.
Thank you.
Squirrel,
God bless you, too. Love may not cure all, but it certainly helps.
Mark,
HE CAN'T HEAR YOU. HIS MIND IS CLOSED AND HIS EARS DON'T KNOW WHAT TO DO WITH ALL THE INPUT.
Rebecca,
A heart attack at 35 is truly ghastly, and with four small children, too. I hope he's fully recovered now, and has given up smoking.
Thank you for your most welcome kind words, and your visit.
Urchin,
We participated in a study last year but backed out when it became apparent that they were most interested in their payback from the drug company and regarded Flip as a guinea pig.
It's frightening that the drug companies have become so powerful that they own doctors.
Wng,
So far, so good. He's ordered more testing, and we'll see what his idea of a treatment plan is. Thanks for your concern.
Bob,
What you said is perfect, and much appreciated.
I am doing my very best to keep an image of Flip as a whole, health human in my mind. I know that the reality you are expereincing does not always match that so I will hold it for you always.
love ya,
j
Jackie,
Creative imagery is known to help, so thank you for your efforts and for reminding me to do the same.
If only we could arrest the disease at this stage.
("If only" may be one of the saddest phrases in the language.)
This was so beautiful. I am so glad that Flip has you--and I'm glad that you have him. A friend of mine helped his wife as she dealt with Alzheimers--your post reminded me of the tenderness and humanity that her slow deterioration brought out in him. You humble me with your continuing ability to grow through adversity.
Crankster,
So nice to see you! You must be really busy acclimating to your new digs as you haven't posted since August, I think.
I am also glad that Flip and I have each other, but we could have done quite well without the massive intrusion of this disease, as could your friend and his wife.
But I believe that adversity exists for the very purpose of our growth. We don't learn much when life is idyllic because we don't have to.
This is a heavy load to carry. I agree with Witnessing, you must remember to take care of yourself during all of this.
There may come a time when you will have to hire help to assist... be prepared for good news as well as difficult, though.
anything can happen. :prayers:
I guess I must have missed your earlier references to this, Susan, and I am so sorry that I did. Flip sounds like he is facing it with huge courage, and your courage, dear friend, goes without saying. Precocious alzheimers has to be the cruelest of all. May you both continue to be well as long as can be expected, and my prayers for you both. My esteem for you just soared, by the way, and it was pretty high to begin with.
Melanie,
I love that you reminded me to be prepared for good news. I am going to take and run with that.
It's my favorite kind of news.
Ian,
I think I worry most about the time to come when I don't really have Flip to share my concerns with anymore. Most things can be borne with another that are almost insurmountable alone.
Kindness goes a long way in a good doctor. I have to say I can't imagine what you and Flip are going through. But I do wish you all the patience and love a human can muster to see you through. Good luck with the new doctor and fingers are crossed that he/she answers all your questions with good bedside manner.
I'm glad things worked out with the new doctor.
It breaks my heart that a wand can't be waved to make this all better. I'd wave the hell out of it for you if I could. I hate that horrible things happen to wonderful people.
As with everything, you amaze me with your dignity and grace in the face of adversity. My thoughts are with you both.
I'll vote. I'll run a 5k. I'll even buy a prayer cloth. Just let me know if there's anything at all I can do. In the meantime, I'll be practice my wrist flicks.
My Grandma got Alzheimer's. It was heartbreaking. You both are so brave.
I wish I had something as eloquent and comforting to add as everyone else. But I just wanted to tell you I was happy to read in your comment that you liked Flip's new doctor. I know how much a good, informative doctor can lift the spirits even if just a little bit. I walked around with cancer in my neck for almost 2 years because I had a doctor who disregarded my concerns. Where in any medical textbook does it say that one needs to become a robot?
Reflective,
I think this doctor will work out as long as my expectations are not unreasonable. There just isn't enough information available about this disease, even to the medical profession.
Lex,
Thank you for all your kind offers. I think I like the magic wand best, so if you could pull that off, I will be in your debt forever.
Sweet Pea,
I'm so sorry that your complaints were ignored by your doctor. That is unforgivable, and unfortunately, not too unusual.
You have to wonder if it got worse for being untreated for so long. It seems like it would have. Thankfully you didn't have to die to get someone's attention.
Too many doctors forget that a major part of their job is "doctoring." They have forgotten how to make human contact with their patients.
Susan, My heart bleeds for you because I know.....as you know my Mom is going thru this now too....and it's a process, at least for me it was...I had to come first to accept it...then get rid of the anger....then just go with the flow....Flip is lucky to have a loving person like you in his life...But don't forget to laugh and have fun...AND......DON'T FORGET TO TAKE CARE OF YOURSELF in the process....I mean that!!!!!!! and don't feel guily about it!!!! Email me any time...ok????
Peace
I could swear I saw/read something recently about a brand new technique. I think it was a NOVA show. I'm trying to remember what it was, but it DID reverse some of the effects of Alzheimers... Shoot. I'll keep thinking.
I admire your thoughtfulness, and agree that everything that happens to us is there to teach us a lesson.
Odat,
I thought of you as I posted this because of your mother. And I will write to you when I have something to say, or to ask. Thank you for opening that door.
No Regrets,
Thanks for the info. It must be very new because all the available material I've read (and the doctors) have said that there is no cure at present, only a few drugs that MAY slow down the symptoms.
I'll see what I can find out.
You two are incredible. What a tough circumstance, but I am so happy to hear about the love between the two of you and that you see the lesson in the trial of learning patience. I'm sending prayers/good vibes your way. So if you sense some good stuff from New Jersey, that could be me.
Found it. Haven't watched it again to see if I was correct, but this is what I was thinking of.
http://www.pbs.org/wgbh/nova/sciencenow/3210/02.html
Sorry, last email. It's RNAi. Do a search under RNAi and Alzheimer's.
Furious,
I can feel those good New Jersey vibes now, and they help so much. You're a sweetheart.
No Regrets,
Thank you so much! I'll check it out right now. I really believe that there is hope if we look hard enough. It's just another problem to be solved, and with help from people like you, it will be.
I have been wondering how Flip and you are doing with this so I'm glad you shared a bit more. I can't imagine how hard this, especially when many doctors are so insensitive and lack basic empathy. I'm glad this doctor seemed nice...but I wish I could give you a hug.
Liz,
I wish you could, too. I'd like that and know it would help.
Yes. I think your instincts are right in getting Flip the hell away from this particular doctor. You don't need this crap. Kindness and respect are not too much to hope for. I'm also not getting a vibe that she's really trustworthy from what you've written.
Tanya,
We could do without the ego, and our new guy really impressed us when he said that he welcomes second opinions because he doesn't know everything.
I think he's a keeper.
Susan, there really aren't words to express how I feel reading this, so I'll just point back to the picture of Flip and Baby and tell you that my heart hurts for you both and these challenges you face. I believe everything you say and try my best to live it. But your words are a haunting reminder to me today. May the present be a blessed moment for you both, each and every moment. Best wishes and thoughts as you travel this journey.
Angela,
Thank you for your kind words and your kind thoughts.
We're seeing quite a lot of each other these days, aren't we?
I'm glad.
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