Today is another installment in my series on Alzheimer's and Dementia. I want to shed some light on what it's really like dealing with a patient or family member who is suffering from one of these mental health illnesses. Although you hear about it on TV or read the adds for medication in magazines, until you are face to face with it in your own life, you truly have no idea what it entails.
One thing I have discovered is that each patient/person who is diagnosed is different. It is a disease that although predictable in many ways, is very unpredictable as well. In some it progresses very slowly (as has been the case with my Granny), or in others the first symptoms appear one month and only a year later the patient is in a nearly catatonic state. As many medical textbooks, articles and websites I have read over the past few months and even before when I was working in the medical field, one thing is certain – no two people deal with Alzheimer's the same. It's not a discriminatory disease. It affects men and women alike and all races, social classes and lifestyles. Some patients can remember things from the past in vivid detail yet don't recall what they ate for breakfast that day. Others can seemingly recall nothing at all (past or present) and function only moment to moment.
As I have said before, nothing I write regarding this is meant to poke fun at or belittle my Granny or any person who suffers. But, in all honesty some of the actions that I will describe, well nothing but laughter can result. Just like when your toddler does something bad and gets in trouble but you can't help laughing while disciplining them because it's just too funny at the same time – well, the elderly patient with Dementia or Alzheimer's can do similar things. One second your heart is breaking for the fact that they do things so unlike their normal self. The next second you are laughing so hard you think you'll pee your pants.
A few friends of my family have dealt with parents/grandparents in similar mental conditions over the years. One woman has been such a huge support to us throughout this. She dealt for several years with her aging father prior to his death. He not only had severe pain and lung issues but also severe Alzheimer's during the last 7-10 years of his life. It went in turns for her. One day he'd be normal and civil and allow the aides and nurses to help him with daily tasks, understanding he wasn't physically able to do it himself. The next day he'd threaten, yell, scream and curse until they would have to sedate him to settle him down. During his early years struggling with the disease, he wasn't combative but strangely possessive and jealous regarding any other male his wife was around. She was a local beautician before she died of complications resulting from cancer. For years she had cut not only her pastors hair, but my Dad's hair as well. Suddenly not long after the diagnosis with Alzheimer's, he began accusing her of having an affair with both her pastor and my Daddy. It became a joke amongst the families because we all knew the ridiculousness of the charges, but at the same time it was terribly sad to watch his mind losing the ability to rationalize and understand the truth. This friend has been an invaluable support to all of us during this time as she truly understands the ups and downs and the absurdity that comes from the disorder called Alzheimer's.
Other friends have told us stories of moms, dads, grandma's and grandpa's who did crazy and very out of character things as well. One's grandma had hoarded literally thousands of rolls of toilet paper over the last few years of her life and yet was always declaring she was out and needed some one to pick more up for her. Another friends grandma was an excellent cook, but once the disease started affecting her that was one of the first things to go. A pot of chicken and dumplings included the entire chicken fryer still whole and half raw in the middle of the pan and she noticed nothing wrong. Still yet a gentleman who after years of being retired would get up each morning and dress for the day in suit and tie, take his briefcase out to his car and sit in the drivers seat saying quietly to himself, “Vroom..vroom..vroom” as if mixing childhood playtime with adult responsibilities.
For us, it has been shocking to see a once loving and kind woman who rarely had a harsh word to say become a mean, lying and often cursing woman. My Granny has never raised a hand to anyone and wouldn't say a profane word if her life depended on it, but the last few months we have seen both in abundance. Her house that was always spotless and sanitary, well disrepair is a way to state it mildly. There is understanding amongst us all that her physical health has not allowed a lot of cleaning to be done for some time, but even the most basic of things like washing dishes or simply bathing herself have gone to the wayside. Not being able to see well has affected that also, but even when she can see and knows – it's as if she is in denial that anything she owns or has could be considered dirty. One thing we have seen exhibited so clearly is that you cannot force a person with Alzheimer's to do anything.
Don't presume you know better or think you would do a better job with a patient who has Alzheimer's. Take into consideration that their family is hurting just as bad as they are over this disease. Practice compassion and understand that many of those who are dealing and caring for an Alzheimer's or Dementia patient get hit, slapped, cursed at, spit upon and lied about and to on a daily basis. Rather than telling a caregiver what you would do differently, offer prayers and a shoulder to cry on.