Good Morning Folks:
Today is the day that I start to really focus on blogging my experience (s) with Alzheimer's Disease.
I am three years into the journey of caring for my elderly mother, diagnosed with AD in Sept 2007. First I must say a special thanks to RIM, and my most fabulous blackberry, because I have managed to document many, if not all of my experiences on my blackberry, which never leaves my side. I will now do my best to transpose those moments, and more, here onto my blog.
If you are looking at this blog for a sad, sentimental, empathetic, softened view of Alzheimer's, then you should probably close the window now. I am a rather dark soul, with a rather dark sense of humour which I hope will show through in my blogging. Sometimes its what gets me through the day, my dark humour and thoughts. Twisted views and visions of what is going on, I find helps with the coping, that and the wine.
With all that being said, allow me to introduce myself. My name is Ali. I am 42 years old, mother of two lovely children , married to the same man for almost 16 years and daughter of Marjorie, 79 yrs old and in mid-moderate stage of Alzheimer's-related dementia. My father's name was Patrick. He died on April 1st, 2007, after a 5 year long, drawn-out and draining illness. I'll be honest. His illness almost killed me, my mother, my sister, my brothers..... it was a horrifying nightmare that, when over, was a huge relief. I miss my Dad terribly, but it was not a good finish to his life.
However, once over, and the dust began to settle, THAT was when we realized that something was not right with Mum. I brought her to live with me and the family, and after only 3 mos of living in close quarters with her, we had her see a specialist and VOILA..... Alzheimer's.
When I used to hear the word Alzheimer's, I would think of Ronald Regan, or our old neighbor on Rosewood. Those were the only two people I actually knew of that had the disease. I knew next to nothing about it, and once I started researching the actual disease, I realized that this was, in fact, a terminal illness. My Mother had just been handed a terminal sentence, with no cure, no hope for recovery. None. No drug therapy treatments, no surgery, no homeopathic solutions. Just the hope that one of the few drugs on the market right now, will help slow the progression of the disease. And if not, buckle up, because you will have a front row seat watching your loved one deteriorate on a daily basis. And there is absolutely NOTHING you can do about it. Nothing.
Once diagnosed, there are instantly, a million decisions to make. Depending on how advanced the diagnosis is, can the person live alone? Are they able to manage day to day activities such as bathing and eating? Are they able to manage their finances? If the answer to any of these questions is "yes", chances are that won't last for long. I made the monumental mistake of thinking that Mum would be able to live "independently", but very near to me. We set her up in a lovely condo less than two minutes away and started our journey towards "independent assisted living". Within a year, she was no where near independent, and the "assisted part" consisted of me running constantly, back and forth between houses for almost two years. Finally, one nite, as I was putting Mum to bed in my daughter's room (it had now been a full month since she had slept at her condo) I started to toy with the option of moving her in with us. A couple of weeks later, she fell in her condo, alone, and couldn't even dial my phone number, or 911, as she just didn't know how. I had left her there shortly after lunch, and returned a couple of hours later to pick her up for dinner. She had fallen in the kitchen and had suffered a major blow to her face. I phoned the real estate agent that evening, to help us start looking for a house big enough to house us all comfortably. My husband supported my decision to care for Mum at home, and not place her in a long-term care facility.
The overwhelming guilt I felt after her fall was quickly overshadowed by this next experience. We immediately took her to see our family doctor who recommended xrays of her face, nose and cheek. When the xray technician asked Marjorie what had happened to her, she replied "My daughter got mad and punched me in the face." What followed that statement was a pile of paperwork, two visits from the local law enforcement, local Adult protective services and a meeting (with my physician) to assure my innocence.
If I ever was to punch her, it would've been after all that!!
Which now brings us here, to the present. We've recently moved into what I like to call my "state of the art Alzheimer's house". We built it to specifically suit our family needs, as well as Mum's ever-shifting needs. And now we all live under one roof. The challenges are enormous, and the daily routine is never dull, but we are trying our best to make it work. As I blog, which I will try to do every day, I will re-cant and talk about the last three years, as well as the present, so as not to lose that whole period of time completely. Mum is physically, very healthy, and I imagine she will be with us for quite some time. I may be naive, but that's how I'm feeling about it today.
Today is laundry day here. I find that laundry is the type of task that Mum can still perform well, and feel good about. Just the folding. She folds the clothes impeccably. Every three or four minutes, she holds up an article of clothing and asks who it belongs to, I tell her and she resumes her duties. Laundry and he cutlery from the dishwasher. Two tasks that are not overwhelming and they can complete. I thank her profusely every time she completes a task and then remind her by thanking her again. It is very important to my Mum to keep busy and feel like she is needed. A small thing, but important for her.
My blogging time is up as Mum is now trying to feed my dog some toast and jam. Tomorrow I will log on again, to provide more historical stories along with the present ones. Maybe tomorrow I'll tell you about the crickets or the hair gel. Until then.... glass half full :)
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