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This blog is on sick leave. Indefinitely.  And I’m not the patient.

I find it comforting in a way to understand that at different times as we move along in our lives each one of us is given a burden to bear.  Comforting?  Because I know I am not alone.  How we deal with what we are given will be determined by how we were raised and how we choose to live our lives.  A terminal illness has struck my family. It doesn’t matter if you come from the poorest family on the face of the earth or you were the President of the United States, Alzheimer’s disease does not discriminate. In fact in a recent survey, Alzheimer’s was listed as the most feared disease among American adults, second only behind cancer. Dementia is also well documented as being the most costly disability in the world.  It is a death sentence. 

I first realized my mom was ‘losing it’ when she would tell me the same cat story over and over again.  Every time we’d get in the car to go shopping, she’d say, “Did I tell you what the cat did today?”  And inside I’d whine and think, “Not the cat story again!”  Then she couldn’t do her checkbook.  Then she would confuse her dates and months.  I moved from Massachusetts to Florida but mom didn’t want to come with me, stating she preferred to stay where she knew her surroundings and neighbors. That made sense, so I didn’t push her.  For months she would ‘present well’ when we talked on the phone, but one day the police called to tell me mom couldn’t find her way home.  And it hadn’t been the first time.  That weekend I flew up to take her to the doctor. Mom was diagnosed the late stage Alzheimer’s. And so my eyes were opened to what was really happening to her, and I began my journey as her caregiver.  That was this spring.  I really didn’t know what I was getting myself into, but I couldn’t turn my back on my mother.

Alzheimer’s disease is an irreversible, progressive brain disorder that slowly destroys memory and thinking skills, and eventually the ability to carry out the simplest tasks. Estimates vary, but experts suggest that more than 5 million Americans may have Alzheimer’s. With staggering numbers like these, more and more of us will become caregivers in our lifetimes. Caring for a person with Alzheimer’s disease can have a high physical and emotional cost. The demands of day-to-day care, changes in family roles, and decisions about placement in a care facility can be difficult, if not crippling to the family. Here’s where I come in.  I am ‘the family’.  I’m an only child.  I must help my mom get through her last days.  I have found that it is exhausting, emotional, and stressful and I’ve only just begun this journey. It is imperative that I put aside some activities, even those I enjoy, especially if they are of the ‘deadline’ type as these activities now create stress for me, and my life is already too full of stress.  My only option is to cut out what I can.

Becoming well-informed about the disease is one important strategy, which is why I attended an Alzheimer’s Support Group meeting that was given in my community by the Southeast Florida Chapter of the Alzheimer’s Association.  The first meeting was a PowerPoint discussion focusing on the topic of how to tell the difference between dementia and memory loss due to normal aging, something a lot of us worry about.  Something I worry about.  The speaker highlighted the ten warning signs of the disease, and answered questions from the group.  I saw my mom in all of those ten signs.  She’s at a stage 5 of 7, 7 being bed ridden and close to death. Informative, calm and reassuring, this lady set the stage for what is to be my new life caring for my mother until I am no longer able to. I have no delusions about how much I can handle.  There will come a time when I have to move mom to a facility. I know that.  I accept it.  And when that time comes I will do it and know it is best for both of us and that I did the best I could. 


But currently, mom lives with me here in Florida in my condo.  She has to.  My days are filled with answering the same questions over and over. And I do it with a smile. My goal is to make her laugh every day, give her food she loves to eat, and make her feel comfortable and safe.  I’ll give you an example of how my days go.  Mom fears the overhead ceiling fans.  She thinks one of the blades will come loose and chop her head off.  She really believes that.  You can’t reason with her, because she has lost the ability to reason.  She can’t put two and two together because this disease has robbed her of that.  When I explain the stability of the blades, show her the four screws holding each one in, she’s fine… for a day to two.  Then I see her worried face, watching the fan.  So I disabled all the ceiling fans.  I don’t want her to worry or have fears.  We now use floor box fans and she’s fine.  She has forgotten that you flush the toilet after use.  So I check once in a while and flush.  She always says she’s not hungry. I accepted that for a little bit, but now I just put the food in front of her and she eats.  She doesn’t really know if she’s hungry or not.  She can’t tell.  Each week there’s something new for us to figure out. It’s going to be a long journey.  The doctors can’t tell me how long she’s got.  It could be two years.  It could be ten.

I thank you for understanding that I must concentrate on this most complicated, emotional and sometimes overwhelming task of my life and give up some of the things that used to be fun but are now too time consuming.

I wish all of you great success in your writing endeavors.  I hope to see your names on best seller lists and awards lists and by-lines in WW.  Most of all, I send you all my love and my wish that you never have to undertake my journey.

Jody