Ten years ago, just before my father passed away, my mother was diagnosed with Alzheimer's Dementia. Her short term memory loss came on suddenly and in the beginning there was even some suggestion that she might have suffered and ischemic episode and that her memory loss might be transitory. Sadly, after a battery of tests, it was determined that she had not had a stroke and the diagnosis of Alzheimer's was made.
I was determined to learn everything I could about Alzheimer's Dementia and set about finding every word written on he subject. I thought that with the knowledge of what the future might hold for my mother, I would be bettered prepared to help her. The first thing I did was to encourage my father to sell the family home and move to an assisted living facility that had step down care. Dad's health was not good and I know that it would be easier to transition my mother while Dad was still alive. Sadly, my father caved into my mother's insistence that they remain in the family home and six months later he was dead - leaving me to deal with the issue of my mother and her declining health.
As was expected, all suggestions that my mother move into an assisted living facility were summarily rejected by her. I recognized that, for my mother's own safety, I would need to seek to be her Conservator. While I was clawing my way through Probate Court, my father's sister moved in with my mother to care for her. These two old ladies had always been more like sisters and it seemed a good solution. My aunt even thought about selling her own home and finding a place in assisted living with Mom. The gods, it seemed, were against us. My aunt died exactly six months, to the day, from the date my father died.
I was in a real jam now. My mother's short term memory loss was rapidly accelerating and she was doing things like paying the mortgage two and three times each month, or leaving food on the stove to boil. My oldest daughter, who was in nursing school at the time, moved in with her so that we could try to keep her safe until I could get the Conservatorship in place. I went to my mother's house every day at lunchtime and each night after work, so that my daughter could have some study time. I still had two daughters at home and as helpful and supportive as my husband was, they needed me at home. It was such a difficult and stressful time and only because I have a loving and supportive family did we all get through those first few months.
After I was granted Conservatorship of my mother, I found a very good facility with a dementia unit. Most of the facilities I visited were awful. At one point I didn't think I would ever find anything that would work, but Greenhaven Estates has been such a good place for Mom. They have great programs, a small patient to resident ratio, the food is healthy and the staff and administrator have been open and receptive. There have been few times in the last ten years that I have been unhappy with anything. In those few times, the staff was very quick to address the issues I had and take whatever steps were necessary to correct them. The nurses have been so supportive of me and have always lent an ear when I was feeling frustrated or sad or frankly, overwhelmed.
My mother remained fairly stable for most of the time she has been at Greenhaven. She was high functioning in that she could dress and toilet on her own, and she was able to walk to meals and activities without assistance. I would come and pick her up to spend holidays or lazy summer afternoons around the barbecue. We would go out for Starbucks or for Coldstone ice cream. Sometimes my oldest daughter would join us and we would go to a tea house for lunch. Our conversations were mostly superficial, but she could be conversant (even if there was the occasional inappropriate thought spoken out loud). We could still have fun together and something of our mother/daughter relationship was still intact. I loved seeing her smile when I entered the room and giggled as she would introduce me over and over and over to her little gang of mealtime buddies.
There was a slow, gradual decline in her skill level and general health as would be expected. Then just over two years ago she began to dramatically change. The first thing that happened was that her level of confusion escalated. I could no longer bring her to my house or take her on outings because she would become confused and agitated and would cry and cry. One skill after another eluded her until she could not longer ambulate and became dependent on a wheelchair for mobility. She had lost bladder control and she could no longer dress or bathe on her own. She could no longer get into and out of bed without help. She became extremely combative and cantankerous. She would yell at and hit the caretakers who tried to help her. She would yell at the doctors and other medical personnel when we went for checkups. There was even one unfortunate incident in which she called a medical assistant the "n" word (a word I had never before in my entire life heard her utter). She yelled at me and would strike out at me and then would ask me what was wrong with her. At that point, there was still something left of her that recognized that something was very wrong.
I had to petition the court for permission to administer psychotropic drugs. All of the other mood alteration drugs had failed her and she was becoming more and more out of control. She was placed on Zyprexa, and her agitation and anger swiftly abated - but so did anything that was left of her. The medication was so sedating that for most of her day, she sat napping in her wheelchair or in the easy chair in her room. It was hard to see her like that, but given the alternative, there was really no other choice. She no longer recognized me. No longer introduced me again and again and again to her circle of little old ladies at Greenhaven. In her mind, I was just another caregiver.
Each time I have seen my mother in these last two years, I die a little inside. I am overwhelmed by the sight of her. I am filled with a mixture of pity, and sadness and (God forgive me) revulsion. I sit with her, stroking her hair or running my hands over the dry and cracked skin of her arms and talk about nothing in particular, because my mother is no longer capable of having a conversation. When I visit, I can't wait to leave and once I am in my car I am filled with shame because I feel such relief at being away from her.
On my mother's birthday, she had a small stroke. Both of her hands are in contracture and the left side of her face is slightly droopy. She has weakness in both of her arms and in her left leg. She can now no longer feed herself. She has lost 6 pounds in the last month and she is almost non-verbal. So, when we saw the doctor yesterday, it was decided that it was time for hospice care. The finality this decision implies was like a punch in the gut and at the same time I feel that a great burden has been lifted. My mother will now get very individualized care and the management of that care will be coordinated by the hospice nurse. While I am still my mother's Conservator, this situation will allow me to be, at the end, her daughter again.
Last night I tried to call up all the happy memories of my mother. I rummaged through a box containing old photos and letters. Thinking about how my mother parented me made me smile and feel so blessed to have had such a wonderful mother. She made my Halloween costumes and taught me to read before I was even in kindergarten. She always had snacks ready after school and would sit and ask us about our day. While I hated her meatloaf, and tried to sneak as much of it under the table to my dog as possible, she made the best fried chicken I have ever had. I watched her sit at the desk and pay the bills. She handled the investments and the budget. She ran a seamstress business out of our home and all of the "professional" women in our neighborhood had all their suits made by my mother because she was "the absolute best at tailoring." When she went back to work (I was 12) I saw her rise up the corporate ranks while still running her home like a well oiled machine. Dinner was always on the table promptly at 6:00 p.m., clothes were always washed and pressed and lunches were always made and ready for us to take to school in the morning. I cannot tell you how many times I have beaten myself up because I could never be THAT kind of woman. I always fell way short of my goal to be "like my mom" but Mom never lost an opportunity to tell me how proud she was of me. The best compliment she ever gave me was when she told me that I was the best mother she had ever seen. Wow...
I found some old letters that Mom had written me when I first got married and moved two hours away. In those days there were no cell phone and nationwide calling plans. Long distance calling was what you did in emergencies or on holidays. Back then, we wrote letters. Mother's letters were always chatty. She would tell me that she had spent the evening ironing Dad's shirts or that she had tried a new recipe. She would ask if I had seen the last episode of some television sitcom or did I know that Macy's was having their White Flower Day sale. I never appreciated those letters. I actually recall thinking that they were rather dull and filled with unimportant information. But now, I treasure those letters. They are tangible proof of my mother's love for her family. They record how my mother lived her life and preserve the kind of woman she was.
As I think about the immediate future, I pray that my mother's end will be peaceful. Alzheimer's Dementia is killing her bit by bit, taking its time and forcing her to endure the indignity of having not only your body fail, but your mind as well. Most of my grieving has already been done. I lost my mother long ago. The physical form that now bears my mother's name and likeness is not what I will remember of my mother. I will remember the kindest, gentlest most loving mother anyone could wish for. I will remember the smell of the Chanel perfume she wore. I will remember how she taught me to sew and read and cook and be a decent, ethical human being. My mother's physical body is beginning its final journey into the transition from life to death. But that which IS my mother will live on in my heart and in the hearts of all she loved and who loved her.
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