MY LETTER TO FAMILY AND FRIENDS
I decided that I needed to write a letter describing Mom’s condition and mail it to our family and friends who might appreciate some clarification.
In the beginning stage of Alzheimer’s, there are signs that things are not right but no one wants to say much. It’s very awkward because you can’t tell someone what is happening to Mom when Mom is sitting right there. You can’t take the phone from her to tell the person on the line why she is repeating the same things over and over.
This is the letter I wrote and mailed to family and friends about two years after her disease began. (Pardon the long length, but a lot had happened.)
Dear family and friends,
This is the letter I have owed all of you for the better part of two years now. I have been thankful for your patience and understanding. I want to tell you what we have been going through and what we have learned. Some of you know most or all of what has been happening. Some not so much.
I do not believe I am betraying a trust between Mom and me. I am sharing this with you because you love her and want the best for her. You deserve to know what has been happening to her.
Every now and then, I would get a call from Mom and she would say, “Oh…I just can’t remember anything anymore.” I chalked it up to age. Dad had nailed a key hook directly over the kitchen sink for her car keys. She was always misplacing her purse.
As you know, Dad passed away suddenly on February 13, 2005. He was five days from his official retirement. There were no words to express Mom’s grief. Our family was turned upside down. A lot of us were scratching our heads wondering why Dad was retiring, as he loved being a judge. Putting two and two together, it seems Dad knew something we didn’t.
For several months after Dad died, red flags were waving right in front of all of us. A few people called me to ask if I had noticed that Mom was repeating things. She was missing appointments. She wasn’t always acting like herself.
I began to drive up frequently to help with Mom’s household details. I noticed her having difficulty with her prescriptions and she wasn’t taking her thyroid medication as prescribed. Bills weren’t being paid consistently or correctly. We all decided it was time for a professional opinion or diagnosis. Everyone except Mom.
I got a referral to a neurologist. I told Mom that we were going to see a nice doctor about her health including her problem remembering some things. She said she saw no reason to go, but would go anyway. I brought along the 5 page questionnaire that I had filled out, the answers to which I naturally thought were confidential. Boy, was I wrong.
The doctor proceeded to spread the pages on his desk right in front of us and he read out loud that I didn’t think Mom was capable of balancing her checkbook any longer. If Mom’s eyes were daggers, I would have been dead. He gave her a memory test, which did indicate there was a problem. He prescribed a brain scan and gave her a 7-day sample pack of Aricept medication. The meeting didn’t go well and I was furious with that doctor.
I thought the ride home would be unbearable, but we got out to the parking lot and Mom suggested we go out for lunch! After that appointment, I had no appetite but Mom was fine and she didn’t seem to remember much about what had just transpired.
By now, I had read a few books, articles and web sites about Alzheimer’s and I felt I could be the diagnosing physician. My husband would tease me and ask me when I had attended medical school. At this point, I knew the brain scan would probably show the loss of some active areas of the brain, but it’s 2007 and you still have to give the diagnosis of Alzheimer’s your best guess. Mom’s brain scan did show some atrophy.
The symptoms for Alzheimer’s disease fit pretty well into three stages: Mild, Moderate and Severe. Mom was textbook for Mild and also had some symptoms that fit into Moderate. In the Mild stage, the person repeats statements and questions, has difficulty with short term memory, planning meals, taking medications, handling money, learning new things or working things that used to be routine like a TV remote control. There are personality changes and mood swings that weren’t there before. These things start to interfere with day-to-day living.
Some of the symptoms can be covered up, disguised, or ignored by the family. That is why most people don’t get diagnosed with Alzheimer’s or some other form of dementia until several years into the disease.
My brothers and I didn’t like her living alone and we were all at least an hour drive away from her home. I was still spending a lot of time driving there to visit and do the paperwork after Dad died, and her finances were starting to be a mess. She was eating TV dinners. Driving her car. She bought a puppy. Oh my, that was a challenge.
On the day after our appointment with the neurologist, I went up to visit and take care of some things. Mom had taken an entire 7-day pill pack of Aricept in one sitting. Enough.
I must say that one of the worst parts of the initial phase was trying to smooth the transition from her being independent, to living in an assisted living situation with no car. She wanted no part of hiring help to come to her home and she was too far away for us to be there as often as needed. She could easily overdose on medication, leave the stove on or wander out the front door or drive and get lost.
At this point in the disease process, the person KNOWS what is going on around them and can cover, look like nothing is wrong, fool people, and get very offended by what is said.
I remember a lot of things that I would like to forget about that time. It didn’t feel right telling my parent that she shouldn’t drive her car or that she couldn’t be trusted to write checks or take her medication properly. The one good thing about the appointment with the neurologist was that he was required to report Mom’s condition to the state of California. The DVM will automatically revoke your driver license with a diagnosis of Mild Cognitive Impairment. You can appeal, but of course, we did not.
After nearly a year of disastrous visits from home health care workers and trying to convince Mom that she needed some help, she agreed and we moved her to an assisted living facility closer to us. We arranged the financial details, hired a moving company to transport her bed, dresser and some personal things so she would feel at home. She would be closer to all of us.
We thought it was lovely! She did not. My precious, happy, agreeable, good-natured mom was miserable. The facility had a golf course, a concert hall, a movie room, a lobby with enormous fresh flowers, and a dining room with white tablecloths. Sweet staff was willing to do anything to help her adjust.
Mom was getting increasingly unhappy, anxious and depressed. She thought people were stealing from her. She asked why she was in a place with “crazies.” They would regularly administer her medications, and then she would go to the nurse’s station and complain that she had not been given her pills. She would leave messages in our phone machines to “get me out of this place!!”
I kept trying to think of things that would make her happy. I tried to find a place for her to volunteer with children so she could feel needed. Maybe she could hit golf balls. Maybe a cat. Because of the move, I had to find a new home for the puppy she bought (that’s another story) and she missed her horribly. Maybe after all this, we could move her to a place that allowed pets. Were there any? Yes! We need an assisted living facility that allowed pets.
I found an assisted living facility closer to my home, walked in and was greeted by a friendly dog wagging his tail and a cat sitting on the front desk. I had a tour early in the day when the sun was shining, birds in cages were either talking or singing, there were dogs of all sizes and a nice gazebo out in the courtyard. You could have any pet you wanted and they would help with the care! Wow!
I signed Mom up right then and there, wrote a deposit check, called everyone and told them to trust me; I had found paradise for Mom.
Movers were again arranged and moving day came. One of my brothers took Mom inside and they were directed to wait in the sunroom. I went to the office to finish all the paperwork, met my husband in the lobby, and then we anxiously went to find Mom.
There was Mom sitting there with my brother and a “transition caregiver.” Her arms were crossed over her chest, lips were pursed, and the dagger eyes were back. She said she couldn’t believe we would put her in a place like that, and she couldn’t and wouldn’t stay. NOT ONE NIGHT!
Just then, an elderly lady with dementia walked up to me and started sucking my hand. Oh dear. My husband looked at me like I was crazy to have thought I found a good place. I had to agree.
This place wasn’t it. There were many people at that facility with moderate to severe Alzheimer’s or other form of dementia, and the evening is not a good time when some people get what they call “sun-downing.” That evening, I think they all had it. It was like a bad movie.
By now, I’m realizing that none of us knew what we were doing. My husband and I put her furniture into storage and moved Mom in with us until we could figure out what to do. My sister in law found a wonderful place, again near all of us, and we moved her in. Mom has a two-room unit with a small refrigerator and sink. I don’t know why, but she was much more agreeable this time. Her medications are administered daily, three meals a day are made for her, her rooms are cleaned regularly and the people there are very nice. She is on an assisted living floor, and after progression of her disease, there is a secure floor downstairs where the doors cannot be opened by the residents in case they want to leave or wander.
For now, we are doing very well and taking one day at a time. Mom is happy and safe. She enjoys visitors and loves receiving cards and letters. She also loves phone calls and for now, seems to do very well remembering her friends and family.
Thank you for your love and support. I will be in touch!