One of the hardest parts of dealing with someone you love who has Alzheimer’s is the unexpected. You never know what the next minute holds, let alone the next day. Most people live by the mantra of “one day at a time” while those dealing with a loved one who has Alzheimer’s deals with life “one second a day, one minute at a time.”
Dementia is a standard, common side effect of Alzheimer’s. Most people have some idea of what dementia is about; however, I’ve had families that I work with that really were never told a whole lot about what could happen or if something different starts to happen. One of the hardest things is when an Alzheimer’s family has to deal with something often referred to as Sundowners. You will note that I reflect upon the Alzheimer’s as a “family” disease, because once a person you know and love is affected by Alzheimer’s it truly does encompass your entire family. I don’t assume people have a huge support system all the time; as a matter of fact most people have a very small support system due to the ways of today’s society. Many families are split apart and live all over the world sometimes. While everyone plays a part in making the Alzheimer’s patient comfortable and safe, some people obviously have larger parts to play in the daily life of the patient.
Sundowners is a term that is used to explain a sudden change in a person’s overall personality. It reflects almost a moment when you can see a person ‘glaze’ over so to speak and they become lost in their own world. Professionals termed it sundowners due to the fact that it seems to occcur at the end of the day; although we have now seen that sundowners patients do not always necessarily begin their change at sundown but do tend to be affected around the same time each day. For some families they will see an almost normal personality from their loved one until after dinner, others may see a change in personality around 3pm, and yet others may not see it until midnight or 2am. Every patient varies, but generally we use the term sundowners for those patients who get lost inside their mind some time after the mornings. This is not to say that there are no reminants of the disease at other times; they still have loss of memory, perhaps confusion, and forgetfullness but they don’t literally fold into their own self and “zone out” until the sundowner time that hits them. There is nothing you can do about this other than learn ways to deal with the different person you seem to have when the sundowners occurs.
Do Sundowners Understand What’s Going On?
I found a blog about one man, named Bill, who actually is blogging about his Alzheimer’s. I highly recommend that you read his posts; but, I also want to remind you that Bill’s trip is not going to be identical to every other Alzheimer’s patient. This means that some of what Bill will say may not be what you and your family are experiencing; yet other parts of his blog you will instantly feel that “aha” moment. Honestly, it opened my eyes and I’ve dealt with Alzheimer’s patients and specialize in Alzeimer’s and dementia patients myself! Why? Because Bill actually allows you to go inside of his mind during his episodes. He writes notes during his sundowners and then the next morning he will put the notes together with the help of his lovely wife to make it readable and decipherable. He then shares his deepest thoughts and moments that, normally, nobody would ever even have the ability to look inside these moments.
This is how sundowners works, in a basic manor. As the Alzheimer’s begins to take over more and more the family/caregivers will start to notice changes in the patient’s behavior. At first, if you weren’t alerted to the word sundowners you may not put it together for months that your loved one seems to be experiencing it around the same time. It’s not an exact science where an alarm goes off and instantly the patient is beginning the sundowning. However, it does occur generally around the same time of day/night. The length will also change as the Alzheimer’s progresses in the patient.
I don’t want to answer the question “Does the sundowner know what’s going on?” because it’s not a cut and dry answer. Let me answer like this:
I truly believe that in most people, there are times when they are aware that they have Alzheimer’s. However, during sundowning the mind goes into its own state. As you read Bill’s memoirs you will see that he had moments when he wanted to speak, knew what he wanted to say, and yet couldn’t get it out of his mind. It frustrated him, yet he tried to ignore it. He then was angry and depressed because he just simply couldn’t react the way he wanted. There are other times when the patient thinks they know and understand something because they put themselves into another state of mind (perhaps back in time when they were younger, or a certain point that has remained elsewhere in life). Family members and caregivers will say they can see that emptiness in their loved one’s eyes and realize they are drifting off. Many call it going into the zone.
Unfortunately, the tempermant can change in the Alzheimer’s patient also. This could be a sign that they are somehow understanding, at certain time periods, that something is just not quite right. As this carries on and the time of sundowning continues you will notice that it may get longer and longer until eventually the patient remains in that state. However, THAT is why physical therapy is so important for Alzheimer’s patients! Although you may be able to change the progress with medications (with some patients medicine works, with others it may not), often the family may choose to give medication to slow down the progression of the Alzheimer’s as much as possible for a certain amount of time and then let nature take its course; while others may decide never to take it or take it throughout the patient’s life. However, with physical therapy we challenge the patient’s mind and body with proven techniques and often “out of the box” techniques that work best for that patient. You want your loved one to stay challenged and strong for as long as possible and that’s exactly what we do with physical therapy. Exercise will release endorphins that can help with depression from the disease. It will also help to keep them moving and healthy so that they can have a quality of life that doesn’t have them sitting and staring at a television for the rest of their years. Visitors can truly lift the spirits of the patient and you don’t have to be embarassed by comments or actions the patient may make while a professional, such as a physical therapist, is there as opposed to a friend or family member who hasn’t yet grasped or understands the disease.
Also, one of the glories of having GO PT come to your NY home is that we can come during their best hours; so if they are at their best from 7am through 3pm then we can schedule around then. We can even suggest how to get excellent caregiving services that are covered by Medicare & most insurances. We highly recommend Right At Home locally in the NY area. If you have reached your limits on insurance benefits there are companies available, such as Right At Home Care Services, that can help you if you’re in the NY area by offering a variety of services that you can decide how much or how little they come to your home.
If you’re interested in reading Bill’s blog please click here and it should open another tab or window for you in your browser. Remember that not all patients are alike but, I truly feel that this is a wonderful look inside the mind of a sundowner.
Dedicated To Your Health & Well-being (and safety),