FACE TO FACE WITH ALZHEIMER’S

You may recall that back on March 1, we accepted the #40Bagsin40Days decluttering challenge for Lent. We’ve been doing quite well and have come across some interesting and long forgotten items in the process. But, one that I came across yesterday really touched my heart and made me think.

It was a copy of the speech I wrote for an Alzheimer’s Candlelight Memorial Service, about a year after my Mom passed away. It brought back so many memories of that heartbreaking experience, but it was also eye-opening when I realize, as I stare my upcoming 70th birthday in the face, that my Mom had recently turned 71, when she and my Dad moved from Denver back to Sioux City and into our home because neither of them were able to live on their own any longer. The theme of that service was “Face to Face With Alzheimer’s” and I would like to share that speech with you all today. It’s as valid today as it was then as Alzheimers continues to strike so many families. Since this was written, my own mother-in-law and brother-in-law have also fought battles with dementia.

When Alzheimer’s Disease stole Jeannette Williams memory and then her life, she was no different from millions of others facing the same fate…except for one thing. She was my mother.

It started out with little things – lapses in memory – forgetting to call or send a card on my birthday – incidents that we might have found strange momentarily, but quickly shrugged off. She was hundreds of miles away and we only saw her a couple of times a year.

But, in January of 1995 my Dad’s diagnosis of terminal cancer brought my parents from Colorado back home to Iowa…and brought us all FACE TO FACE WITH ALZHEIMER’S.

I know of no other disease that focuses our attention so closely on the human face…because it is the eyes of the Alzheimer’s patient that reflect so much of what they’re going through. In their eyes, you may one day see confusion and the next day see blissful acceptance of their world. One day you see fear and the next day, child-like trust. Eyes that seem to be desperately searching for answers today may, tomorrow, offer an overwhelming outpouring of warmth and love.

Alzheimer’s Disease is often referred to as tragic – destructive – and devastating…and it is all of those things and more. But, over the years, I have come to realize that we can find another side to Alzheimer’s if we try…a side that softens the tragedy, limits the devastation and helps to provide the balance so necessary in maintaining a healthy outlook on life.

Nicholas Spark’s bestseller, “The Notebook”, chronicles the enduring love story of a couple, who in their golden years, suddenly find themselves FACE TO FACE WITH ALZHEIMER’S. It recounts their experiences as they adapt to her gradual loss of memory and function and his discovery that with acceptance of the changes and adaptation to the circumstances, he could, in some way, turn tragedy into triumph. He wrote…”I learned what is obvious to a child. That life is simply a collection of little lives, each lived one day at a time. That each day should be spent finding beauty in flowers and poetry and talking to animals. That a day spent with dreaming and sunsets and refreshing breezes cannot be bettered. But most of all, I learned that life is about sitting on benches next to ancient creeks with my hand on her knee and sometimes…on good days…for falling in love.”

I took my mother out to buy a birthday card and gift for my Dad shortly after they moved in with us. When we got home, I gave her a pen and suggested she sign the card. At that time, her speech and writing skills were waning but not gone. She took the pen and wrote Happy Happy. Love J…and the rest of her name just trailed off. She handed the card back to me and smiled broadly. When Dad opened the card he started to cry. It was so hard for him to accept what was happening to her and to see graphic evidence of her decline. But, looking back, I vividly see what he didn’t see…that as she wrote Happy Happy instead of Happy Birthday, she truly was Happy Happy at that moment. Happy that she was able to give him a card on his birthday just as she had for the previous fifty years that they had been married. And, I know that is true because when I close my eyes I can still see hers shining as she handed the card to me.

I had no idea when my parents moved in with us, to what extent Alzheimer’s had altered their lives but I quickly came to realize that my mother had very little ability to care for herself at all at that point. She did not know how to run her own bath water and get in the tub or how to select appropriate clothing and put everything on in the proper order. Since Dad was too ill himself to continue caring for her, I found myself in an abrupt role reversal situation. As I helped her into the tub that first time, she looked at me with the faith of a child, just as I must have looked at her decades before when the roles were reversed, and she said, “You’re a good one.” That scenario brought tears to my eyes at the time, but those words are one of my most treasured memories today.

The following year, after my Dad had passed away and my mother had moved to a nursing home, we had a birthday party for her. She really didn’t understand what was going on or how to open a gift or even what they were once someone else had helped her open them. But, when we sang Happy Birthday, her eyes lit up and she got a big smile on her face and she started singing along with us. That was a Happy Happy moment for her, in spite of everything.

Eventually, the progression of her illness brought her to the point where she could no longer command her mind or control her body. She was unable to feed herself or to walk without assistance. In a very short time, she reached the point where walking to the dining room, even with assistance, was too difficult and Hospice ordered a wheelchair for her. She began having difficulty eating and seemed to be forgetting how to swallow. Yet, even then, her spirit was indomitable. At that point, she seemed to make a conscious decision that enough was enough. Up to then, in spite of everything that was happening to her, there was a spark in my mother’s eyes that you couldn’t miss. The staff who helped care for her often commented on it too. Her face always lit up when we walked in and even though it had been years since she called me by name, I could feel her love by looking in her eyes.

When we went to visit her on Sunday, November 2, 1997, there was a chill in the air and a tiredness in her eyes that I hadn’t seen before. It was trying to snow and she was gazing out the window as if she were looking at something that the rest of us couldn’t see

On Wednesday, November 5, Mom laid down on her bed after lunch and went to sleep.

Losing my mother to Alzheimer’s Disease was a very painful experience…but the lessons of life that we learned from that experience offer a special pain reliever that, over time, has been very helpful This experience has taught us, first hand that devastating diseases do not lessen the value of human life…that a distressing end to life as we know it does not have to be a time for anguish and regret. There is value in human life at any stage or in any condition and that value is love.

Later.

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Turning 60

We have a book on our coffee table that I wrote several years ago. When I was turning 60, I was determined that I would not make it a “dark day” as so many others I know have dIMG_2269one, but a celebration of life. We planned a big get together in northern California and rented a vacation home overlooking the ocean. It was a great time and Ken, Sue and Ron all followed suit in various locations when their time came to “turn 60.” The book is actually a compilation of photos from those trips as well as meaningful quotes, etc. It makes me smile every time I look through it.

Today, I turn 69. Where have those years gone? So much has happened in our lives during those nine years. And, today I celebrate our victory over those things. It is not with a fancy beach vacation but, sometime life’s greatest celebrations are the small ones.

This is probably going to sound silly to many, but, for whatever reason, I have always wished that I were a runner. I’m NOT a runner-never have been, but I admire those who are. The last time I decided to try my hand at running was about 30 years ago. I bought some shoes and went our for a run in our neighborhood. It was cold out and I ended up sucking in so much cold air that I got pneumonia. Yep. I’m not a runner – or any other kind of athlete for that matter. But, I still, to this day, WISH that I were a runner. So, this morning, on my 69th birthday, I laced up my shoes and went out for a run. Now, mind you, I am using that term loosely. It ended up being more of a run/walk, but, the point is, I DID it. I celebrated my 69th birthday by doing something, in my own way, that I really wanted to do. Ken and I both, during these past nine years, have learned that life is a gift. It is something to be cherished, used responsibly and celebrated. Birthdays are something to look forward to – not to be dreaded.

So, that said, I now have a full year to figure out how to celebrate that next big milestone on the horizon. Game on.

 

VIENNA WAITS

My initial post on this blog almost a year ago now, announced my impending retirement. blog quote smallA friend commented by welcoming me to Vienna with the lyrics to the entire Billy Joel song. It’s a great song about slowing down and taking time to live….hence retirement…and my favorite part of the song is

And you know that when the truth is told
That you can get what you want or you can just get old”

I bring this up now because that friend, Howard Jones, released his second book today…”Searching for Dunderhead” and that is an inspiration to me to push forward on my own project. It has long been my dream to write a book. In Howard’s case, retirement has allowed him to climb mountains, sail the seas, go on safaris, become an accomplished photographer and write two books. (I think it’s two) He personifies the lyrics, “You can get what you want or you can just get old.”

I follow numerous blogs on the subject of reinventing retirement and, regardless of the names…Encore Voyage, One Mom’s Journey, Out of the Frying Pan, they all seem to have one common thread…the quest to live this new life we’ve been given to its fullest. For many people, that means travel. For others, a second career path, adventure, or following a dream. Regardless, it seems we’re all searching for Vienna via our own path. And that’s pretty exciting.

“And you know that when the truth is told
That you can get what you want or you can just get old
… Vienna waits for you”

Later.

MINE EYES HAVE SEEN THE GLORY…

No one spends any time thinking about the fact that they can see. Right? It’s just a blessing that we enjoy without thinking about it. But consider all of the glorious things you experience in life because of your ability to see them.  The faces of those you love…the magnificence of the oceans…the majesty of the mountains…the happy, the sad, the beautiful, the ugly and on and on and on. It is so hard to comprehend life without sight.

I have been forced to live with the knowledge of that possibility becoming a reality for some time now, though I had never really given it a lot of thought. It has been years since I was diagnosed with Dry AMD …earlier than most…but in the last several years, because of the rate at which it is progressing, I have been warned repeatedly that I am at high risk for Wet AMD, the more advanced and serious form of the disease which often leads to loss of central vision.

Following cataract surgery last June, I was given a new lease on life with the correction of my vision to 20/30…not as good as many experience but a significant improvement for me. But, my euphoria was short-lived when my 6 month follow-up showed that the improvement I had experienced last summer had completely disappeared. My eye doctor believed that the AMD might have advanced to the Wet version and scheduled me into the Retina Clinic. That was a cold day in February when I checked into the clinic expecting bad news. So, I was extremely excited when the doctor, following his exam, told me that he was virtually certain that it had not yet progressed. But, because of the rapid deterioration of my vision, he wanted to recheck in a month. So, I did that – today.

One of the ways that they have you monitor the progression and watch for changes is through the use of an Amsler grid. You cover one eye and look at the grid. All of the lines should appear straight and all areas sharp.

If you experience any waviness in the lines, or areas that are gray, it can signal major problems. I will admit that I have never bothered much with the grid. Despite what they told me, I never really felt like it was going to become an issue for me. But since January, I have been doing a better job of checking so was quite upset to discover that some of the lines had now become a little wavy. That is why, when I showed up for my appointment this morning, I was once again steeling myself for possible bad news. But it wasn’t. Well, it was, but not THAT bad.

He still believes that my AMD has not progressed to Wet, though, again, cautioning me that it is a very strong possibility. What he believes is causing my vision issues right now is a macular pucker or wrinkle, known in scientific terms as an Epiretinal Membrane. He believes that it accounts for the waviness I am seeing in the grid as well as the fuzziness in the vision in my right eye. It can cause swelling in the macula and hence, distortion in your vision. The good news is, he said that it appears as though there has been a small decrease in the amount of swelling since my last appointment. Hopefully, there will be more. No guarantees. I did google it when I got home to look for possible causes and treatments. I noticed that this sometimes happens following eye surgery. Hmmm. Could it have resulted from my cataract surgery? He didn’t say that and I am not a doctor but sounds like a possibility to me. I also found that in some cases with severe loss of vision, they can perform surgery to remove the wrinkle, thereby restoring some of the vision you have lost but it appears as though that is a last resort. Whew – so here’s the deal. It is NOT, at this point, Wet AMD. There is a possibility, if some more of the swelling recedes, I will regain some of the vision that has been compromised. And, if not, I will ask if I might be a surgical candidate. So, that said and done…there is still hope, on a number of different levels. And, as long as I have hope I am OK. Hope springs eternal someone once said and that works for me!!

Later.

 

Jake Olson

Working on my book this morning, I was reminded of the story of Jake Olson, the then, 12 year old boy who had just had surgery to remove his cancerous right eye. Oddly enough, that was a story I needed to be reminded of right now.

I have been a bit down since my eye appointment last week. It was the 6 month check-up following my cataract surgeries last summer. If you recall, both I and my eye doctor were ecstatic with the results at that time. While not the 20/20, no glasses needed, results that many achieve, he was able to correct my vision to 20/30, with glasses, the best it has been in years. So, I was devastated, last week, to discover in that short time, my vision had deteriorated back to the point where I could read nothing on the chart with my right eye. He took photos of the macula in both eyes and turns out that both have deteriorated again – especially the right. He scheduled me for an appointment with the retina specialist so now I wait. According to my eye doctor, there is a strong chance that I have developed fluid in the right eye. Macular Degeneration is the leading cause of vision loss in people over the age of 60 but there are two forms – dry and wet. While Dry Macular Degeneration can definitely affect the quality of your vision, it seldom causes central vision loss. I have been dealing with that form for years. Only about 10% of people with Dry MD advance to the wet form which is when abnormal blood vessels form and leak blood and fluids into the retina. Those abnormal blood vessels eventually form a scar which results in permanent loss of central vision. There are treatment options to slow the progression but no cure. The idea of that possibility has been weighing heavily on my mind for the past week.

So this morning, as I recounted the Jake Olson story in my book, I was reminded of the quote “I cried because I had no shoes until I met a man with no feet.”  As I mentioned earlier, Jake Olson was 12 years old in December of 2009 when he had surgery to remove his cancerous right eye. What I didn’t say was that he had lost his left eye to cancer when just an infant. So, at the age of 12, he was completely blind.  Jake wrote a book at the age of 8 to help other children battling cancer. He has met many, many challenges head on and has been featured on countless network news broadcasts and in many documentaries. jake olsonNow 18 years old, he is a motivational speaker, plays on his high school football team, enjoys skiing, surfing and playing guitar and has a personal goal of becoming the first blind golfer to join the PGA. WOW!

I needed that.

Later.

A Bit More Fit

I’m feeling just a BIT more Fit today. Why?

Well, it’s been nearly two years now since I bought my Fitbit and not once, in all that time, have I reached their magical goal of 10,000 steps in one day. OK, OK. I know that many of you are gasping in disbelief since you blow that number out of the water on a daily basis. But I’m embarrassed to say that I never have – until yesterday.

I have come close many times, but have never gone over the top. So, reaching that goal was added to my bucket list. For those who don’t know, when you join Fitbit, the default goal they set for each member is the magical number of 10,000 steps a day. And, apparently that is not a number that they just pulled out of the air. The Japanese first started using the 10,000 steps a day number as part of a marketing campaign to help sell pedometers. Since that initial campaign, however, medical authorities around the world have agreed that 10,000 is a healthy number to aim for.

IMG_1357So when I woke up yesterday, I decided that was the day. And, there it is. For me, this is not necessarily a goal for each and every day. It is more of a symbol… kind of like “This is my fight song – take back my life song.” I had somewhat of a routine when I was working. Not a great routine, but a routine, nonetheless. We had a walking moai at the office which I would try to participate in whenever possible. I made it a point to take the stairs rather than the elevator whenever we had meetings or training upstairs. But, now I’m out of that routine and I need to establish a new one. So, that is what I plan to do. Yesterday, I broke through that 10,000 step mark. Not a big deal for many, but a milestone for me and I’m owning it!

Later.

Eye of the Storm

What is on my mind this evening is not so much about re-inventing retirement as it is about an issue involved with reaching so-called “retirement age.”

Just heard someone mention the eye of the storm on the news and it occurred to me that was the perfect title for this post. Here’s why.

Last Tuesday I had cataract surgery. Nothing unusual for someone my age In fact, it seemed like they were moving people through there in droves last week. So, for most people, there would be no way that the experience would provide fodder for a blog post. But, in my warped world, it has spawned the Eye of the Storm.

The procedure itself is brief and basically uneventful. Uneventful if you have no problem with the fact that you are literally watching a scalpel dissect your eyeball and a new lens being implanted in place of the old. But, they give you drugs for that and it doesn’t last long nor does it hurt and that is not what this is about. My story begins with the follow-up exam an hour after the surgery itself.

I assumed the exam would basically involve inspecting the eye to ensure that everything was properly in place and that there was no unexpected bleeding, etc…which it was. But, first – the dreaded vision exam. I’m sure that in most people’s world, a vision exam is no cause for dread. But, remember, I said this post was based on MY warped world. And, I have absolutely hated vision exams since I was in elementary school, when the school nurse would call us to her office and have us stare at a chart with a big E on top and smaller E’s as you went down the chart. We were asked to point in the direction that the arms of the E were facing. The big E? No problem. But I didn’t have to go very far down the chart for it to become a big problem for me. And, here is where the warped part comes in. For me, this was embarrassing. It was like failing a test. I knew I was giving the wrong answer and that was torture for me. I have hated vision exams ever since. They always involve asking me to read something that I can’t see and it makes me feel like a failure.

So, it was like a kick in the head when, almost straight out of surgery, I was tested again. She put some letters up and asked me to read them. I literally could not even tell that they were letters, let alone tell her what letters they were. She brushed it off saying things would become clearer once the dilation wore off.

This afternoon, I had to go in for another follow-up, prior to surgery on the left eye tomorrow.  I stupidly assumed it was just for the purpose of making sure everything was healing properly. But, OMG, the first thing she did was another dreaded vision exam. This time she pulled up a screen with something like 6 or 8 lines on it and asked me to read the smallest line that I could see. And, I couldn’t read any of them. I twisted, moved my head around, blinked, but nothing. Not even the top line. FAILED! And, it really didn’t even surprise me, because following my surgery everyone was asking me if I could see better. So, I kept trying and trying to see better. I would test myself by covering my left eye and trying to read the time on the DVR with my right, but I couldn’t do it. So, failing that exam this afternoon was absolutely no surprise. Still, I felt a storm brewing in my stomach as I watched her reaction. She didn’t say anything but she gave me several more “tests” and then asked me to wait while she checked on something. I could see her consulting with someone. And, then she returned and said she was going to have to dilate my eye and take a look to make sure everything was OK. NO! Dilated again and, this time I didn’t even have a driver. But I gave the go ahead and she put the drops in. This was followed by taking a photo of the back my eye, after which I had to wait again for the doctor to come in.

Apparently the problem is the inability to correct my astigmatism. But, he said the good news is that with a prescription, they will be able to correct me to 20/40, which will still allow me to drive. And, the second surgery is still on for tomorrow at 7 AM  I left and went out to my car where I sat for awhile trying to get my dilated eye to adjust to the bright sunlight that had replaced the cloudy darkness of most of the day and to get my attitude to adjust as well. I was really feeling devastated. SO MANY people had told me that I would be able to throw my glasses away and see perfectly following surgery. But, that didn’t  happen and I felt totally devastated

Fortunately, my little thunderstorm soon passed and as I drove home I realized that I am extremely grateful for what I did get. I may not be able to see as far as I would like, but, what I CAN see is much brighter and more clearly defined. I will take that. And, tomorrow is another day…and another eye. Who knows – maybe they will be able to correct the left eye enough to help make up for the right. We’ll see. If they can, GREAT! And, if they can’t, I take whatever I can get. In the overall scheme of things, wearing glasses is just not that bad.

Later.