CHAPTER 1
In The Beginning....
Here's Your Sign (even if you want to ignore it)
It is the elephant in the room. Your loved one's "condition." You see it and so does everyone else. Or ... you see it and everyone else is in denial. Or everyone sees it but you. Any way, you hope and pray that what you suspect is not true and that the doctor will find that all your loved one needs is medication to make it all better again.
Eventually your loved one's medical provider will either find the cause/ solution to the problem; or the dreaded word "dementia" will be out there and in your face.
Although you might be ready to deal with the diagnosis, there will possibly (probably) be an army of friends and family who will argue with the diagnosis.
What needs to happen on your end to get everyone on board is that you must have your facts straight. Start reading up on the signs of dementia and/or Alzheimer's. I have lost count of the number of dementia diagnosis' there currently are; but I believe it numbers in the hundreds. Alzheimer's is only one of those diagnoses. Keep a diary of every time your loved one exhibits this behavior(s). Do not allow the naysayers to convince you or even themselves that what they see is simply a sign of normal aging. This is when understanding the differences between normal aging and dementia will be of the utmost importance to have in your arsenal of information.
Alzheimer's is NOT a normal sign of aging. Wikipedia's definition of Alzheimer's Disease:
"is the most common form of dementia. There is no cure for the disease, which worsens as it progresses and eventually leads to death. Because AD cannot be cured and is degenerative, the affected person increasingly relies on others for assistance. The role of the main caregiver is often taken care of by the spouse or a close relative. Alzheimer's Disease is known for placing a great burden on caregivers; the pressures can be wide-ranging involving social, psychological, physical, and economic elements of the caregiver's life. In developed countries, AD is one of the most costly diseases to society."
Another reference/definition of Alzheimer's comes from my many pages of notes. I am, unfortunately, not able to attribute this quote to the correct person, but it is worthy of noting that:
"A person whose brain is degenerating will demonstrate socially deteriorating behavior regardless of how well they look, or how they behaved yesterday. And, while unpredictable behavior can be anticipated, what form it will take, or when and with whom it will manifest cannot."
There will come a time when you and others will no longer be able to justify your loved one's behavior and face the truth as well as the diagnosis.
Talking to the Brick Wall(s)
Unless you are an only child with all dead relatives; you will be speaking to the family about your loved one. There will most likely be those who have noted the person's behavior and will get in line with the information you are imparting. But then.... there are the Others.
The Others are friends and family (maybe even a spouse) of the person with dementia who will absolutely refuse to see what is happening. They will ignore the obvious signs of dementia and talk about all the positive behaviors exhibited by the person in question. And that may be true.... for the time being. But that will eventually change as the dementia progresses. How do I know this? I was one of the "Others." I was so terrified of my mother being stricken with Alzheimer's that I protested constantly when my sister tried to talk to me about it. Mom was clean, well dressed, put on her make up and kept the house clean. She just HAD to be all right although maybe a little forgetful. I knew that people stricken with Alzheimer's lived anywhere from 2-20 years and the thought of toughing out a long, drawn out caregiving stage was something I didn't think I could handle. And due to family dynamics, I was fully aware that 100% of the responsibility would rest on the shoulders of me and my husband.
I believe that my mother's Alzheimer's was slowly exhibiting small changes around the year 2000. Sadly, in October of 2002, my stepfather passed away. Although I called him my stepfather, Mom and Joe had lived together without marrying for 21 very happy years. Since Joe had never legally drawn up papers giving my mother a Power-of-Attorney or any say over his health, she was at a serious disadvantage when he was first hospitalized and then placed in Hospice.
Some of Joe's family members came into my mother's home when she was at the hospital with him and removed all of his physical belongings. She was so stressed by all the circumstances she was dealing with that she chose not to file a police report. These family members came to Hospice and created emotional scenes and accused my mother of everything from thievery to fraud.
The situation came to an end when Joe's family members removed him in the middle of the night from Hospice and flew him via air ambulance service to the state of Ohio where they resided. He died without the woman he loved for over two decades, in a nursing home. We didn't know Joe had passed away until I was visiting Mom and I answered the phone. It was their life insurance agent expressing his condolences over Joe's death. I had to break the news to my mother that the love of her life had passed away and she wasn't even able to attend his funeral. Nor did she know where his final resting place was. All she knew was that it was somewhere in Ohio.
It was at this time that my mother's Alzheimer's began to spiral and become more noticeable. (Note: Stress always increases the symptoms of Alzheimer's and often proves to be the catalyst that drives the Alzheimer's into high gear. My maternal grandmother had been showing minor signs of the disease. Then she suffered a severe break of her right hand and she seemed to exhibit many of the signs of Alzheimer's immediately afterward.)
During one of my quarterly treks to Florida I had taken Mom and my sister for a day of shopping and dining. We had slurped our double shot mocha lattes, dined at an elegant and historic restaurant, and were going through the sales racks in Macy's when Mom announced that she wanted to go home and put her feet up because she had to work tomorrow. My mother had been retired for over ten years at this time. I could feel my heart sink into my shoes as my sister gave me that "I told you so" look. I had to finally admit to myself that Mom had dementia and in all likelihood, it was Alzheimer's. After all, both her mother and one sister had already died from complications related to Alzheimer's. From that moment on I knew that life would radically change and Mom would have to either live with or near me for a number of years.
I laughed it off and told Mom that she must be very tired as she had been a retired woman for at least ten years and we needed to go home and let her get some rest. I could tell by the look in her eyes that she was facing...
