I'm not sure where to begin, hence, I will start with what I remember today.......
I have no words that can describe how I feel at the moment....overjoyed with appreciation for life
and at the same time a veil of sadness drapes over me as I watch a life slowly fade away like a
flickering flame from a candle that's been burning for a long while.
I sit here writing my thoughts, perhaps rambling on, in the company of my faithful companions, my three dogs, Radio, Dixie and Boogie and a cat named Cleo. The weather is beautiful today, with a nice breeze blowing, less humidity fills the air, maybe wishful thinking on my part. It already feels like Fall to me. The view from my desk is pleasant, as I look out my window . I watch the birds feeding on their elongated feeder, that is forever being emptied out by the blue jays and pigeons, who are determined to fit themselves on the little perches. I have had my creative juices flowing for the past week, which has been a welcome change, considering I went dormant for nearly 6 months. I have ideas pour through my brain at all hours of the day and night. This has been so exciting, it's as if I rose from my ashes, like the phoenix!
Behind this seemingly peaceful, humble abode that I reside in, there is a duality that I deal with daily, that of joy and pain. Let me explain myself.....
I am a cheerful, positive person. I wake up this way and as I move towards my kitchen, I encounter the morning rituals of preparations to tend to the care of mom. This is where the painful part comes in. We each have our duties to accomplish before hospice arrives at 6:00 AM every morning to help with her bathing. Having to watch my mom slowly wither away with a wretched disease is overwhelming. The amount of time and energy needed from the caregivers to accomplish only one task for her is phenomenal.
She was diagnosed with Alzheimer‘s disease back in 2005. It all happened with such subtlety. She seemed to have functioned for three more years, always being “Mom“, taking care of all of us, making sure all of our needs were met . Her nurturing instinct was alive and well. She fought this thing “ until it just took over her“.
It was in the beginning of 2008 when I first noticed things weren’t the same anymore. Mom lost the ability to dress herself, make any decisions, could not handle money or any purchases, etc. Simple everyday tasks, such as making coffee became such an ordeal for her, and yet she would not allow us to assist her. The mother that I once knew was quickly slipping away into oblivion, slipping into the darkness and loneliness of dementia.
This is how the decline began.......
During this year there were several episodes of confusion, especially when dad collapsed in the front porch and was found by a neighbor . She was found wandering the street and dad was lying in a pool of blood on the driveway. I was not home and only found out because a neighbor was able to reach us. Dad was airlifted to the hospital, where he spent a week completely disoriented. During this time she became worse and weakened quite a bit. I had to rely on my aunt, daughter and a good friend to take turns helping me with her at home so that I could go tend to my father at the hospital. Things improved slightly when he was discharged. We went back to our new “normal state” until the end of the year.
It was the end of the Thanksgiving Holiday (2008) when the remaining members of the family had gathered around the dining table to play a board game. The aromas of our dinner were still lingering in the air, filling it with the sweet smells of spices from far away lands. It felt surreal to have such a peaceful moment. Everyone was beginning to relax for the evening, when, out of nowhere, my father appeared to ask for help with mom. She was complaining of pain but didn't know where. At first, we thought she really was in pain and gave her some medication for it, later, her anxiety level was still high and finally after several hours of not knowing what we were dealing with, she fell asleep. I made an appointment with her doctor ASAP that following week..
On the day of the appointment the doctor and I sat down to discuss the situation, He explained to me about the hallucinations patients experience during "the sun downing" , associated with dementia…... and so the difficulties with her advancing disease began..
She forgot about our dogs, who were, for a very long time, her reason for getting up in the morning. She loved those pets more than her life. They were her “girls”. Next on her downward journey was the incessant pacing around the house. We could not get her to sit down. She was experiencing difficulty in walking, but it didn’t stop her. There was a time where she did fall down, with no major consequences, thank God. After those episodes other symptoms developed, loss of control for her bodily functions, lost the ability to bathe and feed herself. She just didn‘t function anymore without assistance. It was at this point that we asked for extra help. I wasn’t able to find it right away. The government programs for aid to the elderly had their funds frozen due to that state of the economy. It took a few weeks to find out help was not coming from this direction. Then someone suggested I call Catholic Hospice .
Even though they were able to provide so much for her, her daily care became more and more involved. Imagine taking care of a 10 month old baby that weighs 150 lbs. and can barely walk. By now dad and I were exhausted, just couldn’t keep up with her and the needs of the household. Nothing was getting done. Dad kept screaming at her because “she didn’t understand the things he was trying to explain to her”. Our days consisted of the same routine, like playing a scene from a movie over and over again. She would have her lucid moments when we cheered and laughed, followed by a ghostly, transparent look that became all too familiar. I began sounding like a broken record explaining to my father what was happening to “his wife”. It broke my heart to see them at the breakfast table in the morning, with the usual fixings around them. The Newspaper spread out, to the side, were the used breakfast dishes, and dad commenting to her about the news. She would give him a blank stare and he would go on to the next set of headlines. Somehow this was working for him. To acknowledge what was happening was too painful for him. He was in denial of the whole thing. He was not sleeping well at nights in fear that she would get up and fall. At this point we tried weekend help , which quickly turned into more help during the week, which then progressed to hiring someone to move in with us and help us take care of her and the house.
Now we seem to have a new system that finally has brought some peace and balance to our life and home. God has blessed us with this wonderful help that has eased the burden somewhat. Somehow, the pain is still there for dad and for me, as we continue to watch her slowly spiraling down. Some nights she sleeps and some nights she hallucinates for hours. No longer are her hallucinations horrible, she is at peace, lost in a world only known to her. It’s as if she crosses over for a while and then returns….only she knows in the depth of her soul what is the purpose of all this. Her mission here is not yet complete. As selfish as this sounds, it brings me comfort, for I get to keep her a little while longer…..
I love you MOM
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