Dementia Coach

What is Sun Downing?

Last week, I was in the emergency room with my five-year old son. He was injured when a skateboard hit his forehead resulting in seven stitches.  Timing of this event is important because it happened at 6:00 PM. While we were at the emergency room, I noticed some other young children. Some were sleeping, some playing with others. There were two however; I would guess about 2-3 years of age, who could not get control of themselves. Everything the mother tried seemed to fail. It was as though these kids were possessed by demons. Their behavior was spontaneous, out of the norm, and loud, very loud! I must confess, these could of very well been my own children.

My gut said, what can we do to control these people? What can we do to make them conform? These kids are making me uncomfortable! Why did this have to happen when I was there? As I was watching this with my son, I began thinking about the concept of Sun Downing and what it must be like for a person with Alzheimer’s Disease. I realized that I was beginning to sundown just like the kids. I was tired, hungry, and wanted to be in my own comfortable house where I was familiar and in control of my surroundings. I wanted my normal routine! My abilities to express myself in an appropriate manner where diminished and I was beginning to wander around the place wishing I was outside. I was willing to buy my son any snack he wanted, just so he would not bother me. Thankfully, I came out of my stupor and realized that I was the one who had the ability to change not the kids near me.

Let’s take a closer look at these kids and the circumstances as it relates to the phenomenon known as Sun Downing. When a child is young and unable to communicate verbally, they will communicate to us through primitive means. When are they most likely to communicate with us? When their basic needs are not being met! For an infant or young child, basic needs are things like food, love, attention, and appropriate amounts of stimulation, warmth and comfort. How quickly we forget that these are the same needs that all of us have. Imagine yourself being suddenly stricken with an illness that renders you unable to verbally express yourself. In clinical terms, we call this Expressive Aphasia. How do you tell people you are angry? How do you tell people you are hungry, tired, cranky, or simply, I don’t want to be around anyone now?

I hope that you are beginning to understand now that the term Sun Downing is just that, a term! Whenever this word is used in connection with someone with Dementia, you should ask yourself the following questions: Is this person in any pain or are their any circumstances that are different from their normal routine? Who has to change?  How can I make changes to help this person?

Sun Downing is a state of increased agitation, activity and negative behaviors which happen late in the day through the evening hours. It used to be thought that Sun Downing was caused by the lowering light and shorter days. However, research now indicates that being overly tired may have more to do with Sun Downing. I know I get more agitated if I am not well rested! lHere are some suggestions on how to minimize the negative behaviors associated with Sun Downing, thank you to an unknown author for most of this information.

1. Limit outings and activities to the morning hours: Generally the individual with Alzheimer’s Disease is better able to tolerate outings, activities and increased stimulus during the earlier part of the day. Plan your trips to the grocery store, involvement with kids, visits to day care and so forth during the earlier part of the day. This should be followed with a time of decreased stimulus and quiet time to allow your loved one to wind down and relax.

2. Make sure that your loved one is well-rested: I know that this is easier said then done. It does help though if you can get your loved one to take a nap just before their normal period of Sun Downing. If they can not or will not nap, an hour of quiet time (reduced stimulation and activity) will work. Choose an activity that is simple and enjoyable to them. Ask them to tell you about a past experience or tell them story of your own. Often times, they will dose off.

3. Decrease the amount of stimulus. Even during the earlier part of the day the individual with Alzheimer’s Disease can only tolerate so much stimulation and commotion. Take steps to eliminate over-stimulation such as television, children, any noise making item, quick movements and many things going on at one time. Sometimes excessive stimulation can not be avoided. When that happens, allow your loved one to have a quiet area to retreat to.

4.  Identify and minimize physical discomfort: Other types of physical discomfort can also play a part in Sun Downing. Hunger, being wet or soiled, feeling cold/hot and other sources of discomfort can increase agitation, especially in the late afternoon and early evening. Light snacking during the day can be helpful. Apples and other fruits can help replace lost energy – even if your loved one is pacing back and forth, that does not mean they have an endless supply of energy. Make sure that your loved one’s personal needs are attended to and that the climate is at a comfortable level.

5. Identify and treat medical ailments: Many ailments can contribute to Sun Downing and agitation. Arthritis can be one of the most common causes. An over-the-counter painkiller as recommended by their physician before the early afternoon might be of great benefit. Urinary Tract Infections (UTI), flus/colds, asthma, allergies and other conditions are all medical ailments that can contribute to Sun Downing.

6. Be observant to possible causes of agitation and be proactive to either relocate the source such as children at play, or relocate your loved one. Watching to see what is going on, what events are happening and who is present prior to Sun Downing can help reveal some causes (and solutions).

7. Keep things simple: Keep the surroundings as simple as possible. Be sure your loved one’s walking paths are clear from clutter and obstacles. Low furniture such as coffee tables and foot stools can make it difficult for your loved one and a become a source of frustration. Keep knickknacks to a minimum and the tops of tables, television shelves and other surfaces as clear as possible. Mirrors and pictures can often become unfriendly visitors that the individual with Alzheimer’s Disease can not understand. Complicated, noisy appliances are also frustrating to them. Avoid changing things once you have things simplified. Changes of any kind are extremely frustrating.

The Care Givers Paradox of Purpose

Being a care giver in my book is the hardest job in the world. Imagine going to work one day and your boss tells you that you can no longer leave at the end of the day. You will no longer be paid for the work you do and you must expect to be woken up during the night at any given time to do your job. Hear is the real zinger! Your boss also informs you that you no longer have a job description and that you must expect to fail at everything you do because you will not be given any training.

I remember when my daughter had Leukemia at the age of four. My wife Beth and I felt as though we had been sentenced to live in this bubble for two years and our prison guards were medical doctors and social workers. Our entire sense of being revolved around our faith in God and making sure our daughter Morgan was going to live through this. We had been given a sense of purpose that was not asked for much less desired. Even though we had thousands of people praying for us and the support of friends, family members, social workers, and doctors, it felt as though no one else in the world could do the job for us. We had to learn to embrace the mission, understand that we were not perfect, that we would make mistakes, but we were not alone. We had to remind ourselves that this was too big for us to handle however; we had the means to deal with this.

After a period of time went by, I began to understand that I must have another sense of purpose, a purpose other than being the dad of a child with a life threatening illness. I began to understand that by having another purpose, I could be stronger for my daughter and my family. It is like taking a trip on an airplane with a child. The flight attendants always instruct the parents of small children to put the air mask on themselves first before helping their child. I needed to come up for air!

I believe that “Any real meaningful purpose in life is most often, not recognized until after some of the most difficult training and preparation has taken place”. In other words, I had no idea at the time that my experience as a care giver would someday lead me to the work I do now. I was certainly dumbfounded to discover that I gained the skills necessary to empathize with the care giver of an individual with dementia. Is a person called upon to do a job based on their future potential or their background? By giving things over to God, we are free to embrace failure knowing that there is a sense of purpose behind our every move. The trouble is as human beings, we have the desire to know what that purpose is in advance.

The sense of purpose for you can be anything you desire. Some people audit a class at the local Community College. Some people join a Bridge Club or facilitate a small group for their church. People join civic groups or organizations that support their favorite hobby or interest’s. I’ve had people who joined gardening clubs, fishing clubs, hunting clubs, golf clubs, reading clubs; you may even find a new career. We were designed to have rest.

Is the paradox becoming clearer to you now? One sense of purpose is identified by looking back at your experiences. The other sense is identified by looking forward to what is comfortable to you. In my opinion, both are equally as important, we just need to begin our search.