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I am very excited about my new business “Coping with Dementia LLC,” to train and educate caregivers — both professional and lay persons — on a better and more effective way of interacting with people who suffer from Alzheimer’s and dementia. As you have read, I too was a caregiver to a spouse with dementia, and I had to make some difficult choices while lacking the information and tools to understand what was happening or how to properly deal with challenging situations.
I would like to share some of the things I have learned about recognizing and responding to the strange and often unsettling behaviors of a loved one suffering from dementia. Even when we do not know what motivates some of these behaviors, we can learn to respond in helpful ways.
Outbursts are one of the ways dementia sufferers respond to fear and frustration. Perhaps they realize that not long ago they could deal with a simple daily situation, but now they cannot. They simply cannot remember how to solve a small problem, and this frightens them. They may explode in a temper tantrum, throw things, or even try to kick, hit, or bite their caregiver. Try to remember these are not just people behaving badly. They are doing the best they can to respond to a situation they no longer understand.
These outbursts and other negative behaviors can be caused by too much stimulation or too many choices. These behaviors could be their way to communicate with you; a sign that they need your help. The levels of noise, distraction, need to use the bathroom, too hot or cold, thirst, and simple choices that you live with daily have just become too much for them to handle. Try to eliminate things that are over-stimulating and the number of options your loved one must face in getting through the day.
Layering clothing or not being able to dress themselves, for example, is another odd but common behavior. They put on two pair of pants, layers of shirts, a coat over another coat, etc. This is likely the result of too many choices. Don’t throw open the closet and say “It’s time to get dressed.” That closet full of clothes is simply overwhelming. Limit the choices to the articles of clothes your loved one should wear that day. If you want them to pick out something, offer only the choice of two shirts. If they still struggle with a decision, help them with love, patience, and understanding.
Hoarding things and compulsive organization can be another behavior of the dementia victim. One day I learned to my dismay that my husband Albert had not been taking his pills. Instead, he had been hoarding them on a very high shelf in the closet, carefully lining them up in a long row. Even in advanced stages of dementia, memory care patients have a sense of what is “their stuff,” and they want to protect it from loss or someone else taking it.
This behavior can be caused by paranoia. Sometimes they may have lost something important to them, but they believe someone else has taken it. So they respond by hoarding, hiding, and accusing people of stealing when they may have misplaced it themselves.
There are many more typical behaviors than we have room to cover here. For example “exit seeking.” They will leave the house and wander, perhaps looking for someone still living in their long-term memory. This is a very dangerous behavior for obvious reasons, and in the future I’ll devote a whole column to how to deal with it.
There’s another that we’ll later discuss in greater detail called “sundowning.” The end of the day is the most disturbing time for a victim of dementia. The troubling behaviors they perform during the day will only become worse at this time. We’ll discuss why in a future column.
A general rule for dealing with all disturbing behaviors is that you should reduce stimulation, limit choices, and most of all respond with patience, love, and understanding. Scolding and saying “How many times have we gone over this . . .” will only make matters worse.
We must recognize and suppress our own frustration that causes harsh reactions. There will likely be a time when we realize our situation has gone beyond our resources, our understanding, and the amount of energy we have to expend on it. Eventually, our loved one may have to be turned over to professional care, even though this may be the most painful decision you have ever made.
But I will tell you – though I know you won’t want to hear it – that we are talking about a cruel, progressive, and utterly predictable disease. At some point, when we are doing our best, we may unwittingly be doing the worst for our loved one.
Future columns will be about the philosophy and techniques of a Positive Approach to Care. It can be simpler than you think, once you have learned the skills that work and get results in person-centered compassionate care.
Until next time remember “We all deserve the best.”
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