Living with a loved one whose mind is slowly leaving them is such a difficult and trying life experience. First, it seems that our loved one can’t quite keep all the facts straight about just the little things of life. And, we often blow off this initial part of ‘dementia’ as just normal aging…and part of it might be. It might be a level of “normal” forgetfulness of little pieces of information that aren’t life or death issues so…oh well, we all do that…even at 35!
As I have often said, losing your marbles (gray matter) is not a normal part of aging! Now, I understand there is some debate about this statement but let me explain what I mean because…..if the dementia goes beyond a moment’s confusion of where your mom put the car keys or the name of the fourth and last child…and she is doing this on a frequent basis…well, there might be something more going on. That ‘something more’ might turn into some serious confusion of how to handle day-to-day activities like how to figure out what time it is on a normal clock with hands, how to handle her money, how to make her bed, brush her teeth, boil an egg, make a piece of toast, or use the washer and dryer. When it gets into these kinds of things, you can pretty much so know you have a disease process at work. And, for some people, the disease process can start quite young…mid-40s to mid-50s…or it doesn’t show up until the mid-80s and over. Dementia is a disease and needs to be treated as such…not just a ‘normal’ part of aging. I have worked with many folks over ages 85 who are still as sharp as tacks. I know a 92 year woman who is still driving and balancing her own checking account. If we allow something to be considered ‘normal’ we don’t take seriously the evidence that there might be a disease or illness that can be diagnosed and treated.
Often families worry about what is the cause of the dementia (just a fancy word for short or long term memory loss and confusion, disorientation to time, date and place, etc). And, that is an appropriate question to have because you want to make sure you don’t overlook an illness or disease (an infection somewhere in the body) that could be treated with the positive result of clearing up the confusion. But, once a dementia advances to a certain point, it usually doesn’t matter what caused it because…dementia is dementia when you are a family member having to live with a loved one who has it.
Depending on the research you read (just Google, “What are the causes of dementia?”) there are about 10 main causes of dementia…and a lot of other lesser ones. (One thing you will find is this is still a developing body of science and medicine with many unknowns.) The top three are: Alzheimer’s dementia (impacts about 5 million folks), vascular dementia (such as what happens with a small, mini-stroke or TIAs), and Lewy Body dementia (an estimated 1.4 million folks suffer this type of dementia). If you add Parkinson’s disease…you probably have captured the primary disease processes of most dementias in the United States. Then, lifelong drug addictions and/or alcoholism make up another large percent of dementias.
So, let’s return to the idea that dementia is dementia…regardless of what causes it. The reason I like to focus here is because we, as family members with loved ones who have dementia, don’t care after a point what causes it. Nope, what we really care about is. “How to I handle the behavior of my loved one with dementia?” And, in the many decades of combined work in the field of healthcare and aging by the Helping Hearts’ team, that is the question we get asked the most by family, friends and other professionals. Well, while there is no one answer for every person with dementia, here are a few tips and hints you can try with your loved one and see if it helps both of you cope better with this frustrating and unpredictable disease that takes a loved one’s mind away long before the body wears out. These take some practice…so work at it a bit; keep trying different things until you find what works best.
1) Softening the look in your eye and the set of your jaw – if you have a loved one with dementia remember…they are afraid, confused, frustrated, and irritated. How would you feel if you couldn’t quite connect the dots and you knew it but still couldn’t completely figure out what was happening and how to solve it? Frustrated!! Upset!! Afraid!! So, how do you approach someone who is afraid, confused, frustrated? If you approach them in fear, frustration, raising your voice…..the situation will escalate and behavior can get out of control. Your loved one may start hitting you, shouting at you, cursing you…not how you want things to happen! So, one of the most important things you can do is…remain calm, approach them with a look of loving concern, keep your voice soft and level in tone, relax your face muscles…we all “read” the nonverbal facial expressions, right down to the lines around the eyes and mouth, long before we hear and understand the words someone is speaking. So, be calm, look with eyes of love and genuine caring, and speak calmly and lovingly.
2) If the person has (or had) a sense of humor…use humor to help calm them down. Be a bit silly even if it helps to divert their attention off whatever it is that seems to be upsetting them. When a loved one gets extremely agitated, becoming combative…..divert by humor, a laugh, a comical look on your face. “Oh my goodness, Mom, I feel the same way sometimes and you know what I do? (pause..see if she ask you want you do but even if she doesn’t go on..) I don’t know…I thought you might! (follow with a laugh or giggle) I guess I am just silly, Mom! Do you think I am silly?” I know that may not be a very good example but…the point is find something humorous and a bit silly to connect to that person with….it’s a great diversion, gets the person off the fixation that was causing them to be upset and angry, and can work quite well to calm the situation down.
3) This brings up a good hint…work on learning ways to divert the person’s fixation on whatever seems to be upsetting them. Sometimes it is as simple as asking, “Mom, did you know that Suzie’s cat just had 4 new kittens?” (It really doesn’t matter if there is a Suzie or a cat or 4 new kittens….it’s just a diversion…go with it if it works!! Your loved one isn’t going to remember in a few minutes anyway.) Tell a story, look out the window and talk about the weather, tell her she looks beautiful in that color…anything that can help trigger a new thought pattern away from whatever seems to be bothering her.
4) I usually remind family members to not ask too many questions of someone with severe dementia. It can produce a lot of frustration because somewhere in their mind, they know they should be able to answer…but they can’t…so questions just produce more frustration. But, I have also seen simple questions…maybe no longer than 5-8 words long…are ok and can help to engage a person in a way that behavior changes…for the better. If asking questions of any length and topic makes behavior worse…stop! Find another way to engage your loved one.
5) Don’t forget the hugs and kisses! Human touch…kind, loving touch…is so important throughout our lives. Loving touch makes a baby thrive…so too it can help an aging, demented loved one thrive. It can calm…love those light pats or gentle squeeze on the hand…it can redirect. Touching a loved one’s arm or holding their hand can guide them from room to room but also put you close enough for a side hug, a quick kiss on the cheek…all those things we remember from long ago that are still in there somewhere…that left us feeling cared for, loved, admired. Use gentle touch, use hugs, use kisses, use holding hands, use a foot massage…all those things that can help trigger wonderful memories tucked far away in your loved one’s mind.
6) Move away and take a nonthreatening position. Don’t stand tall over them…don’t stand too close…don’t come across like you are going to try to bully them into doing something. Step away a few steps, get down to their height or a bit lower, approach as a friend would with relaxed arms and open hands not crossed arms and closed hands, suggest or recommend the action you would like them to do, ask for their help in helping you do what you want them to do (model what you want them to do). And, don’t move too quickly…fast action movement is confusing and leaves them feeling out of control of their environment. (Ok, this hint is a series of hints but it all has to do with body space, placement, movement, and appearance.)
This is not a complete or exhaustive list but just some tips and hints that have worked for others. I have not discussed medications that help to manage behavior and mood of a person with dementia. While the medications are an important part of any treatment plan for a person who has dementia you still need to learn how to manage day-to-day life with a dementia patient. Hopefully, these few tips will help you live with your loved one with more positive interactions for both of you.