Alzheimer’s Communication: The Sounds of Silence

Simon and Garfunkel’s song “The Sounds of Silence” always touched me. When I heard the cover performed by Disturbed, it made me hear the lyrics in a different context—a more urgent one. The same words performed in a different manner brought a new dimension to the song and made me pay attention to parts of it that just blended into the background before.

The haunting lyrics of “The Sounds of Silence” make me think of how Jim’s voice was silenced with aphasia during his years with dementia. His problems began with just a few jumbled words until his voice was stilled except for an occasional word. When a spoken word broke through the boundary of silence, it was as treasured as a rare jewel.

Mostly, Jim learned to talk without speaking, without words. His mannerisms became the clues that told us of his needs. His eyes communicated his pleasure, pain, joy, confusion, and a myriad of emotions.

Jim always said he knew me better than I knew myself, and I believe that was the key to our communication. Instinctively, he knew how to get his point across.

Communicating with a loved one who has Alzheimer’s requires some thought. When you consider that only about 7% of communication is from words, it opens many possibilities.

1.      Speak in simple, straight-forward sentences and give only one instruction at a time. If I ever asked Jim to do two things in one sentence, he only reacted to the second request.

2.      Patience is your friend! Allow time for a response. Don’t expect a quick response, or even an appropriate one.

3.      Use body language to get your point across. Your loved one will understand tone of voice and body language long beyond the time when they understand your words. Point, demonstrate, or use props. Also, watch your loved one’s body language. Restlessness, irritability, and other physical symptoms will alert you to their distress.

4.      Validate the emotions you see and hear. Their reaction to something might be completely different from yours, or even what you would expect theirs to be. They may re-live grief over and over, or may not acknowledge there is anything to grieve even when a close relative dies.

Throughout life, we communicate—from a baby’s cry, parenting, learning in school, to our last profound words. Life is more complicated and confusing when we lose our lifelong ability to communicate effectively.

Communication isn’t easy when your loved one has dementia, but putting in the effort to keep the lines of communication open will help your loved one and you maintain a happier relationship. Loving words, hugs, and smiles will convey your deepest feelings. When you listen with your heart, the sounds of silence will tell you everything you need to know.  

Copyright © December 2015 by L.S. Fisher

http://earlyonset.blogspot.com

Alzheimer’s War: A New Hope

At our family celebration, the day after Christmas, my grandson opened his Star Wars Lego’s. He is fascinated with all things Star Wars.

“Has he seen the new Star Wars movie,” I asked his dad.

“No, he hasn’t,” Rob replied.

I mentioned a photo posted on Facebook showing people lined up in front of a movie theater to see the original Star Wars in 1977. The caption read, “Your grandparents lined up to see the first Star Wars.”

“I remember when your dad and I took you and Eric to see Star Wars. We went to the drive-in to see it and you both fell asleep.” Of course, drive-in movies didn’t start until after dark and five- and seven-year-olds were up past their bedtimes. So, Jim and I were the only ones to see the entire movie.

“I don’t even remember it,” Rob said. He didn’t remember getting the toys for Christmas either: R2D2 and C3PO.

Of course, at the time, we thought there would only be one Star Wars movie. Instead, it was the series of movies that just kept on giving, and in 2015 gave again. What I didn’t know was that due to the prequels, the original Star Wars movie’s name was changed to Star Wars Episode IV A New Hope.

It seems odd that an original movie in a series would be renamed, “A new hope.” I find that intriguing for life as well. We all face so much adversity just living from day to day that we could use a little bit of “new” hope to keep us going.

When dealing with  Alzheimer’s, we may have years of sorrow, months of endurance, weeks of despair, and days of joy, but through it all, we never give up hope.

With Alzheimer’s, hope may be just hoping for a good day, hoping that the family pulls together, hope that there is something way better than this world. Hope for a miracle burrows deep within our hearts that the cure will be discovered in time to save our loved ones.

Now, we have a new hope. We have hope that this disease will be stamped out in our lifetime. Finally, our nation is pulling together to fund research in an unprecedented amount. We have declared war on Alzheimer’s.

On December 22, Harry Johns, CEO of the Alzheimer’s Association, said, “As we celebrate this momentum for our cause, we are, of course, deeply appreciative of our champions in Congress, members from both parties, who have made the advances we need much more likely with the historic funding increase announced last week. They have provided unprecedented leadership that will ultimately make a difference in millions and millions of lives.”

I’ll be making my sixteenth consecutive trip to the Alzheimer’s Advocacy Forum in April to help celebrate this new hope. Yes, an increase in funding is a great victory but our work isn’t done, and it won’t be, until Alzheimer’s is a curable disease.

A cure has been my hope for many, many years. My new hope is that someday I’ll go to D.C. and won’t have anything on my agenda except sight-seeing. Until then, I’ll wear my purple sash and continue to fight the war against Alzheimer’s.

Copyright © December 2015 by L.S. Fisher

http://earlyonset.blogspot.com.com

Merry, or Not So Merry?

Yesterday, I met the un-merriest checker ever at Walmart in Columbia. The light was lit that indicated the lane was open, so Harold and I put our items on the belt. We could see the checker, who was supposed to be on duty, deep in conversation with another woman. Finally, she spotted us as we patiently waited for someone to ring up our purchases.

She sauntered over, not saying a word or even giving a hint of a smile, and picked up the items, one by one, scanning. The total came up, she glared and nodded toward the credit card machine. I scanned the card, and she handed me the receipt. Then, she begrudgingly murmured “Thank you,” beneath her breath. Anyway, she said something that ended in “you.” I wouldn’t a hundred percent swear the first word was “thank.”

“Wow! She was rude,” I said just as soon as I was out of earshot. Yes, maybe I should have challenged her to her face, but I’m not passive-aggressive so I didn’t say it loud enough for her to overhear.

I know she had a voice because we interrupted her conversation. I don’t know what her problem was. She certainly wouldn’t be in contention for employee of the month.

It was disconcerting to see someone act that way in a retail business offers a high level of customer service, but some people just don’t do holidays well. People who have suffered a tragedy at Christmas time often endure rather than enjoy.

Holiday cheer and noise don’t bode well for people with dementia. A lot of  holiday chaos can send a person with Alzheimer’s into a tailspin.

Just a few suggestions to make the holidays easier if you have a loved one with dementia:

1.      Keep the celebrations simple. It is much better to have an intimate dinner than a huge family gathering. If it’s too hard for you to host the holiday celebration, ask someone else to host it.

2.      Be kind to yourself! If it’s too much to maintain all the traditions of holidays past, choose the ones that mean the most. Especially, if they are ones you can let your loved one share with you. Can your loved one ice the Christmas cookies?

3.      Take time for yourself. Find a few moments to indulge yourself. You could go to a Christmas program, schedule a relaxing massage, or go to a movie with a friend.

The person who can make your Christmas merry is you. Everyone else can jump through hoops trying to make it happen, but merriness doesn’t come from Walmart, it comes from the heart. You will find those who give you the gift of friendship, kindness, and love will help bring joy to your holiday.

Don’t let anyone steal your joy or cast guilt on you for not being able to do all that you did in the past. Fill the holidays with peace.

If you happen to go into the Columbia Walmart see a checker with a scowl on her face and a Grinch in her heart, tell her I said, “Merry Christmas!” She probably needs all the encouragement and cheer she can get.

  

Copyright © December 2015 by L.S. Fisher

http://earlyonset.blogspot.com.com

Aging Well Is All About Attitude

My Mom 2015--Aging Well

Have you ever noticed that some people seem old before their time? The reason some appear to be elderly could be due to physical appearance—they have wrinkles, shuffle when they walk—or more obviously they have turned into a grumpy old person.

Then, there is my mom. She will be 89 next month but has apparently been dipping her toes in the fountain of youth. She is healthy, active, and beautiful. 

Attitude is a key factor in whether your twilight years are enjoyable and fruitful or just an excuse to check out from life early. You see people struggle with the concept of retirement. It takes less effort and risk to keep on working. It isn’t always people who need the money either—they are afraid of not having enough to do or tie their self-worth to their career.

I took early retirement. I loved my job and had worked hard to succeed, but deep inside, I knew it was “time.” I was ready to turn the page on a new chapter—or perhaps open a new book. I faced retirement with excitement and without any regrets.

Recently, after exchanging pleasantries, a Walmart checker said she was glad her day was almost over and she could go home. “I have to work another five years before I can retire. That is if my health holds out.”

I swiped my credit card and said, “My doctor said she was glad I retired while I was in good health and could enjoy it. She sees so many people wait until they can’t work anymore.”

Retirement has been kind to me. I love waking up when I want to—at least most of the time. I choose the path to walk most days, or the comfy chair to sit in and read a book, or the TV show to watch, or the social event to attend. Oh, sometimes living with a farmer means getting dragged into all kinds of projects. Guess that counts as physical exercise and saves on a gym membership.

In order to live, you must embrace life. If you live everyday letting other people bring you down, you find yourself marking time, instead of making the most of it. Each day is a blessing. We never know what tomorrow or the next hour might bring. We choose to live, or we choose to endure a living death.

As we age, we are prone to developing medical conditions. Some of these can be brought on by lifestyle, genetics, environment, or a combination of all three. Alzheimer’s is one of the most dreaded conditions for the elderly. It is not a normal part of aging, but aging is the number one risk factor.

Researchers found a link between being negative about old age and developing Alzheimer’s disease. The Baltimore Longitudinal Study of Aging conducted a thirty-year study on aging. Later in the study, they used scans to track the size of the participants’ hippocampus which is primarily associated with memory and spatial navigation. The people who began the study with a negative outlook on aging had greater size reduction of the hippocampus than their more positive counterparts. Autopsies found negative people had significantly more plaques and tangles, the hallmarks of Alzheimer’s disease.

That’s good news for those of us who see the up-side of aging. We look forward to doing our own thing and taking advantage of those senior discounts. Who would have ever thought attitude could be so darned healthy?

It helps to put setbacks and failures in perspective. One thing is sure in life—even during the darkest hours, a lot of people in this world are facing greater hardships than I have ever known.

Hey, life is hard. It can be a lot harder for some than others, but giving up is not an option. It is heartening to see people who rise above adversity and take control of their own destiny.

It’s all about attitude. You’re only as old as your attitude lets you be. If you don't believe me, talk to my mom!

  

Copyright © December 2015 by L.S. Fisher

http://earlyonset.blogspot.com

Letters About Alzheimer’s and Coconut Oil

I checked my Post Office box a few days ago and was pleasantly surprised to see two handwritten missives. In today’s atmosphere of mass mailings, junk mail, advertisements, and “or current occupant” mailings, it is almost mind-boggling to get one handwritten note, much less  an entire letter.

The first note was from one of our Walk to End Alzheimer’s sponsors. Jessica Snell and I had recently delivered T-shirts and a copy of Broken Road: Navigating the Alzheimer’s Labyrinth, a publication of my 2014 Early Onset Alzheimer’s blog posts. After thanking us for the shirts, she wrote, “It’s our pleasure to support this effort. I have forwarded your book to our social workers and case managers because I thought they would find it insightful.”

The other note was from a gentleman who began with “I have Alzheimer’s, and I read your book.”  He didn't mention which book he read. In addition to the first book I compiled and edited, Alzheimer’s Anthology of Unconditional Love, I have seven other Alzheimer’s books from my blog. “My wife said I have quit talking and reading. Today I read your entire book and I will read the Bible for two years.” He went on to talk about his coconut oil regimen. He said that one of the things I did not mention in my book is coconut oil and its benefits for Alzheimer’s.

He is not the first person to ask why I haven’t talked about the benefits of coconut oil. This is one alternative treatment I never tried on Jim, so I have no personal experience to share.

There is little scientific research on coconut oil and Alzheimer’s disease. A trial was supposed to be completed in September of this year, but for some reason it has been delayed and the results are not yet available. So, basically the jury is still out on the benefits, or a possible downside, of coconut oil therapy.

Coconut oil has its staunch supporters and anecdotal testimony. Some testimonials say their loved ones showed immediate improvement after taking daily doses of coconut oil for a short time.

Coconut oil contains more MCT (medium chain triglycerides) than any other food. MCT produces ketones, which some researchers believe can improve Alzheimer’s symptoms. Some very small studies showed improved cognitive function from MCT supplements. These studies used a supplement, not coconut oil.

A cautionary tale is that the safety of coconut oil in medicinal amounts is unknown. Its effect on cholesterol levels in high dosages is in dispute. Another consideration is that just because something is “natural” doesn’t mean it is safe when taken in abnormal amounts.

I know the frustration of waiting for an effective treatment for Alzheimer’s and I, too, used vitamin E supplements for Jim. I did clear the dosage with his physician and told every specialist he saw that he was taking it. None saw it as a problem.

I also take a couple of supplements—CoQ10 and MegaRed for joint problems. My physician knows I take these, and I’ve seen tremendous benefits from taking both. I took different levels until I found the lowest dosage that provided the best results. They don’t work for everyone, but I have confidence this regimen works for me.

Perhaps, it is the same with coconut oil. It may not work for everyone, but it may work for others. I do know primary caregivers will see even subtle changes in a loved one with dementia. We want the highest quality of life without causing any harm.

Once the larger studies are completed, science may come down on one side or the other in the coconut oil question. In the meantime, I would urge caution and consultation with a trusted medical professional before beginning any alternative treatment.   

 December 2015 by L.S. Fisher

http://earlyonset.blogspot.com