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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My Dad

I have avoided making any political posts throughout this long, drawn out election period. It seemed like doing so brought out the worst in many people and I didn’t want to be a part of that. But, watching Meet the Press this morning, I couldn’t help but think of my Dad. What would he think about this election?

My Dad dropped out of college to enlist in the Navy during World War II. He was an intensely patriotic man…a bit too opinionated sometimes, but very patriotic nonetheless. Even songs like America the Beautiful and God Bless America could bring him to tears.img_4515

I can’t help but wonder who he would have voted for. I honestly don’t know, but one thing I do know is that he would have voted. I hear many say that they don’t like either candidate so they’re just not going to vote. I understand, but I strongly disagree. We can’t change the person Hillary Clinton is…we can’t change the person Donald Trump is. But one of them WILL be our next President.

What we CAN do is vote. We were given that right by our founding fathers and it is the only voice we have. In school, we voted for Class President and Homecoming King and Queen. We vote for our state and local officials. And we vote for President of the United States. In all cases, whether our preferred candidate has won, we always get behind the winner and move on. That’s who we are. But according to the “experts” on Meet the Press this morning, this will not happen after this election. That is appalling. There are a huge group of people who will not feel good about the outcome of this election and many of them, unfortunately, may handle that inappropriately.

What they CAN feel good about, though, is exercising their right and responsibility to vote. It occurred to me this morning that it would be an amazing, feel good event if EVERYONE would get out and vote. Wouldn’t it be awesome to see that the people of this country cared enough to generate the highest voter turnout in American history? I think we should do everything in our power over these next few days to make that happen.

I would like to challenge my kids, my grandkids, the rest of my family and all of my friends to PLEASE VOTE. I apologize for the length of this post, but I am feeling strongly about this. I am not asking you to comment if you voted and I am especially not asking you to share who you are voting for. I am not asking you to type AMEN. But, if you agree with me on this, it would be great if you would take a moment to help get the word out and maybe, just maybe, we can convince some who are not planning on voting to do so. Maybe we can band together and get everyone to use the only voice they have that really counts. Please share if you agree. #vote #everyonevote #pleasevote #trump #clinton #largestvoterturnoutever

Thanks.

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.