Alzheimer’s and Sleep

Sleep is required for our bodies to function. In the book “Living Your Best”*, Lisa Snyder indicates that “Sleep is required to consolidate memories, a process that moves short-term memories into long-term storage. It is important to make sure you get adequate sleep each night and that you rest during the day if needed to restore mind and body.” You could wake up with your mind refreshed. I have on occasion, especially after a particularly restless sleep, taken a nap during the day. In “The Memory Bible”*, author Gary Small suggests power naps during the day if necessary, but they should last no longer than 30 minutes. I have suffered with Insomnia for many years now, and the only relief I have found is through medication. I take Ambien CR which is an extended release tablet. Ambien is the trade name, Zolpidem is the drug name. I have tried many different relaxation routines, even the 20 minute sleep rule. Go to bed and try to relax, do not watch TV or read a book. If you haven’t fallen asleep in 20 minutes, get up and do something else for a while, then return to bed and repeat the cycle until you fall asleep. This process did not work for me.

There are things you can do to help with sleep issues.

Diet. Certain foods should be avoided, especially late in the day. According to foundhealth.com, foods high in sugar and refined carbohydrates such as candy, energy drinks, soda, and donuts. These foods contain simple sugars and are easily absorbed which can give you a burst of energy disrupting your sleep patterns. Eatingwell.com recommends limiting alcohol to one drink per day. While alcohol can help you get to sleep, it can suppress REM sleep state. I do have a glass of wine (sometimes 2) in the evening. I usually don’t have any after 9:00. Sometimes I will have a snack such as an apple or snack crackers that triggers serotonin which can help you relax.

According to Dr. Matthew Walker of the University of California, Berkeley, “Disrupted sleep may be one of the missing pieces in explaining how a hallmark of Alzheimer’s, a sticky protein called beta-amyloid, starts its damage long before people have trouble with memory, researchers reported at the Alzheimer’s Association International Conference. It’s very clear that sleep disruption is an underappreciated factor.”  Dr. Walker presented data linking amyloid levels with people’s sleep and memory performance. “It’s a new player on the scene that increases risk of Alzheimer’s disease.”

According to Jeffrey Iliff, a brain scientist at Oregon Health & Science University in Portland. “Changes in sleep habits may actually be setting the stage for dementia. The brain appears to clear out toxins linked to Alzheimer’s during sleep. And, at least among research animals that don’t get enough solid shut-eye, those toxins can build up and damage the brain.” Iliff and other scientists at OHSU are about to launch a study of people that should clarify the link between sleep problems and Alzheimer’s disease in humans. It has been clear for decades that there is some sort of link. Sleep disorders are very common among people with Alzheimer’s disease.

Caffeine is one thing you really have to conscious of. I will occasionally have a diet soda at lunch, but never at night. I always look for caffeine free when I can. I do drink ice tea, and we drink a lot of hot tea in the winter, but it is easy to find decaffeinated tea. We drink only decaffeinated coffee.  We order our coffee from Ancora and grind it ourselves. We are so in tune with our coffee now that I was  well aware when I neglected to specify decaf at Starbucks. The result was immediate, I was very nervous and couldn’t hardly keep my hands from shaking.

Calm evenings are a must. Exercise within an hour before bedtime is not advised. I avoid watching any TV programs before bed that might cause any type of anxiety, stress, or strong emotions. Political programs, sporting events, and the news sometimes cause me to get wound up too much before bed so I avoid them.

Sundown Syndrome or sun-downing is a term I was not familiar with until recently. The phenomenon occurs late in the day as the sun sets and can cause a variety of behaviors such as confusion and anxiety. It is not a disease, but affects people with dementia’s like Alzheimer’s. The exact cause is unknown, but it has been suggested that its cause might have to do with the impact of Alzheimer’s on the brain.  I do not have this issue but when you research sleep disorders and Alzheimer’s, they are addressed in the same articles in a lot of cases. Many older adults (I don’t classify myself as older), without dementia notice changes in their sleep, it seems to be part of the aging process.

Stressful days (which fortunately doesn’t happen as often after I retired), can cause insomnia. As we age, sleep can become more erratic, Alzheimer’s complicates it even more, and stress compounds it further. If we have something to do like bills, mail, disability or Social Security paperwork, we try to do it earlier in the day. I can get agitated at some of the processes that we have to deal with.

*I made the decision with this post to start adding more resource materials that were recommended to me including websites, books, and other media. In this post, Living Your Best With Early Stage Alzheimer’s by Lisa Snyder is a book I use as a reference guide. “The Memory Bible” by Gary Small is another book that I utilize. The Websites, “Eatingwell.com“, and “foundhealth.com are sites that contain diet and nutrition information. Our coffee source is ancoracoffee.com, they are based in Madison Wisconsin.

Dad

Emotions are often difficult to deal with after the diagnosis of Alzheimer’s Disease. Some struggle with emotional extremes. Stressful situations can be difficult to deal to deal with also which can lead to times of sudden onset of tears, and also times of anger.  Grieving can be difficult also with emotions being raw and experiencing emotional roller coasters. Amazingly, stress was something that I did not have to deal with when Dad was diagnosed over a year ago with brain cancer.

As I look back now at the last year, I think about the work stresses that I had to deal with and the stress of every day living. I can’t think of a time that I felt stress associated with events surrounding Dad’s diagnosis. I remember when I had to make the call to Mom and Dad to tell them of my diagnosis. I thought it would be the hardest call that I had to make. Both Mom and Dad were reassuring, optimistic and very loving in their interaction with me. No stress involved.

Debra and I traveled to Kansas to see Mom and Dad last Sunday, Dad was deteriorating due to the cancer. We arrived Sunday afternoon for our scheduled trip. Mom told Dad that Debra and I were coming so he expected us. I went to the Care Center to see Dad Sunday night, we made eye contact, Mom and I repositioned him in bed a little, and then visited for a while in his room. He went to sleep for the night. At 4:30 in the morning Pastor Ed, Mom and I prayed together in Dad’s room, Dad had gone home. I can’t begin to describe the peace that was present in the room. The presence of the Holy Spirit in the room was remarkable. It was like Dad was being welcomed home by all the Saints in Heaven. The experience is unexplainable.

Dad taught me and my two sisters carpentry, mechanics, work ethic, and love.  I was talking about Dad with my neighbor and I made the comment that I had two brothers and two sisters. I had to explain that in Dad’s eyes his two son-in-laws were the same as sons to him. They were part of the family, not just because they are fantastic people and great husbands and fathers but because Dad loved them as deeply and he did his own children. They were special people to Dad. When Debra and I married 5 years ago, she was welcomed into the family with open arms and is also part of our special family bond. Dad loved his kids, grandkids, and great grandkids.

Dad served his county in the Army. He was very patriotic and loved his country deeply. There was always a special place in Dad’s heart for those who served, or are serving. There was definitely a special place in his heart for his grandson who is in active service today. We are all proud of him. Too often we do not say thank you to those who served and to those who are serving. H, you are special, thank you!

Dad was not a physically large man. I recall returning home from college, feeling a little cocky talking to Dad in the living room at home. Dad was noticing I had a little bit of an attitude, so he jokingly made the comment that he could still “take me”. I laughed and said, “I don’t think so”. Mom looking on as we rolled around on the living room floor, chairs being pushed out of the way by the scuffle until the wrestling match concluded. I remember looking up at Dad with my arms pinned to floor, thinking, that was not a good idea, “he is built like a rock”. I couldn’t believe how strong he was.

As a teenager, I remember sitting at the dining room table having lunch. Dad was home for a quick bite before he headed to the county on a service call. I always wondered why Dad was in a hurry when he was at work, he would literally run to his truck to head to the country to work on someone’s equipment. I asked Dad  why he ran out to his truck to go on a service call. He explained that there was a farmer out there waiting for him. His combine was broke down, every hour that he couldn’t cut wheat cost him money. Dad knew that he had to do everything he could to get the customer going as quick as he could. He instilled this work ethic in all of his kids.

If you want a good example of marriage, look at Mom and Dad. After 60 years of marriage, I can’t think of anyone that is more in love than Mom and Dad. It showed, it is incredible. Debra and I were talking to Dad several weeks ago, he wanted to make sure we knew that he was married to the most wonderful woman in the world, we agree Dad!

One of that last precious moments I had with Dad happened several weeks ago. He was laying in bed at the care center, I had just given him a hug. He looked up at me and said he was ready to go home. I told him that he wasn’t quiet well enough yet to go home. He looked at me again and repeated himself, this time with a tender look in his eyes, ” I am ready to go home”. I got it.

In the last several years, after a visit or a phone call, I remember now that Dad never said goodbye, it was either, ” I will talk to later”, or ” I will see you later”.

I will see you and talk to later Dad!

 

 

 

 

 

 

The Follow-Up Neuropsychological Exam

Anticipation about an upcoming event can be worrisome. You have the good anticipation looking forward to Christmas or your birthday as a child. Anticipation of an upcoming medical appointment can be both stressful and also can bring a feeling of hope that the outcome will be good.

The second Neuropsychological exam was December 30, 2015. I was a little nervous going into the exam. I honestly didn’t remember much about the first exam other that generalities. I went to the same clinic as I did a year ago. The Geriatric Evaluation & Management Clinic at Methodist Hospital in Omaha. I was also fortunate to have Dr. Pare again this time. In my long 4 year journey through the stokes, TIA’s, and the eventual diagnosis in August of this year, I have to say that the turning point for me was the Neuropsychological exam I had in January of 2015. My wife might not have been ready for the conclusions as indicated in her post, but what I remember were the words “A neurodegenerative process would need to be ruled out”. That is what I hung onto through the following months leading up to the diagnosis.

The results of this test were what we anticipated. I knew that my memory, reasoning, and problem solving were probably not improved. It was also noted that the May 2015 MRI indicated parietal and hippocampal atrophy greater than that expected at someone of my age which is a trademark of Alzheimer’s Disease.

The test results as compared to the prior evaluation. “A decline is observed on multiple areas of cognitive functioning, including most tests measuring speed of processing, attention span, working memory, and multiple aspects of memory functions. Results are showing multiple areas of impairment, though there is not impairment across all tests of one domain (memory is not entirely impaired at this point). Yet, noticeable cognitive decline is measured when comparing to the results of the last evaluation. Technically, results continue to be indicative of multidomains mild cognitive impairment, and etiology is now known to be Alzheimer’s disease.”

So now that we have the test results, what next? To be honest, I am not sure. We were waiting for this appointment before we decided next steps. I have an appointment with Dr. Murman on February 15. We will decide then what our plan will be for this year.

I am excited that we have a new Early Stage Support Group that will be starting on January 19, and will go through April. This will give us a chance to visit with others that are recently diagnosed, some Younger Onset such as myself which will help us process this new information. I already have several speaking engagements coming up and planning more. Along with the Alzheimer’s Association, we are working on setting up other support groups in surrounding communities as well as an additional Early Stage Group in Omaha. The Nebraska Chapter of the Alzheimer’s Association is committed and passionate about helping those diagnosed and their caregivers. I am privileged  to work with such wonderful people, they are making a difference. I will talk in a later post about the support groups and other activities that are ongoing.

I want to thank Dr. Pare for her compassion, honesty and willingness to discuss these results at length with us. Her wisdom, advice, and counsel is greatly appreciated.