Dementia, in its many forms, are ugly diseases. As they attack the brain, they attack the body. And, in doing so, they attack bystanders all around. Family and friends are drawn into the horror of the loved one or friend and seeing the gradual, and sudden, declines that come with these diseases. Sadly, Melissa and I have all too much familiarity with these diseases because they first struck her mother, and now mine. There are several forms of dementia, with different symptoms and effects on the person, but no form is better than another and the end result is the same. One aspect of dementia that has been strange to observe is the unwillingness of people close to the person with dementia to accept that diagnosis and confront it in a proactive way. There is often a tendency to deny the problem. A little forgetfulness is normal, right? Well, maybe. But, there comes a time when, if tested, the diagnosis is pretty clear. Unfortunately, the aforementioned denial often means the testing and diagnosis are more delayed than if this disease caused pain or immediate physical limitation like a heart attack. And, we talk openly about heart attacks or strokes or cancer; we whisper about diseases of the brain. But, that is wrong. For while dementia has no cure, there are treatments. These treatments delay the deterioration and allow a better quality of life. But treatment is not possible without testing for the disease. However, once diagnosed, there is often a desire to keep this particular diagnosis hidden from friends, to let them think of the person as they were. This is not possible if the dementia sufferer has any contact with family and friends; at some point the problem is noticeable – but, by not revealing it, people wonder what is wrong. And, worse, they are at a loss for what to do. I write this today as my Father has announced my Mother’s condition to a group of their friends, all of whom already knew about it at some level. It has been difficult for him to face this for many understandable reasons, so this is a big step. Confronting the disease is the only way to treat and deal with the progression that follows, however horrible. We learned with Melissa’s mother that things will change, usually unexpectedly. But it is important to stay ahead of the curve, to attempt to anticipate and address the changes. The world of the dementia sufferer is changing; everyone else’s world will change also. So, if someone you know and love is showing some signs, don’t delay, set a doctor’s appointment and address the concerns, find out what can be done – don’t ignore the signs. Delaying the decline is better than doing nothing and hoping it is all a bad dream.
It is an unarguable fact that the human brain is the most important part of the body and, indeed, what separates people from other mammals. This being the case, it is astounding to me that, although most people hurry to obtain medical care at the first sign of many, relatively minor, medical emergencies (for example, a broken leg), they deny the existence, then delay obtaining medical and psychological care, for brain dysfunctions. David is dealing with the denial/delay issue within his family, one of whom suffers from Alzheimer’s Disease. As a psychologist, the symptoms of David’s family member’s dementia were obvious to me almost 10 years ago. Interestingly, the symptoms were also obvious to my brother, Frank, due to his experience in caring for our mother, who suffered from a form of dementia called frontotemporal dementia. Although the manifestations of each form of dementia are different, my brother was able to tell that something was “off” with David’s family member, leading him to confront both David and me regarding his concerns. Sadly, nothing was done to help this person until it was almost too late. Precious time was wasted, and is still being wasted, by not moving quickly to retard the progression of the fatal disease we know as Alzheimer’s. The result has been a failure to provide the best possible care for the person, all because family members were too busy covering up, making excuses, and in general, looking out for their own interests above the interests of the person who is no longer capable of self interest. In contrast, when Frank reported a series of strange behaviors on the part of our mother, I knew something was amiss. In combination with behaviors I witnessed first hand, I knew Mom was in the early stages of dementia. What did I do? Deny the existence of her dementia? Wish it weren’t true? Worry about what her friends and neighbors would think? NO! I made an appointment at the memory clinic at Lee Memorial Hospital in Fort Myers, where Mom lived, for her to be evaluated. Of course, she resisted going, but at the same time, she could sense something was wrong inside her brain. Upon receiving the diagnosis, which, of course, was exactly what I knew it would be, I called a family meeting and my brothers and I discussed how we, as a family, would work together to help Mom. Frank and I, along with David, worked side by side to provide Mom with 100% of what she needed: professional care givers; a cane, then a walker, then a wheelchair and ramp to the front door; music (one of the best forms of brain therapy); grab bars around the house; a hospital bed; registration with the sheriff’s department as a person with dementia; a necklace with a panic button; and everything money could buy to help her live her life in her final years. We also decided to make Mom’s life fun. We never refused any request she made: If she wanted ice cream for breakfast, lunch, and dinner, that’s what she got. We took her to restaurants, the mall, to see family and friends (even on an airplane trip to see my brother and his family in Georgia). In the early days of Mom’s dementia, I went from door to door in her neighborhood, telling her neighbors what was wrong and providing them with Frank’s and my phone number in case she wandered. As we age, many people in my generation will be diagnosed with Alzheimer’s or another form of dementia. I only hope that, if it is I who suffers this unfortunate fate, someone will treat me like I treated my mother and hurry to get help instead of denying and delaying help until it is too late.
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