Rough Week, But Getting Better

I probably should not write a blog entry this week, it has been a rough one for me.  Nearly every day, I receive email and Facebook notices from a few different dementia and Alzheimer's support groups and research organizations.  One that I received this past week really peaked my interest.  It was recommending a book While I Still Can by Rick Phelps.  It sounded interesting, so I downloaded it onto my Nook.  Wow!  I will refrain from really recommending it myself because of how it caused a downward spiral into depression for me.  However, it would be an excellent book for anyone who is acting as a caregiver or who has a loved one suffering from Alzheimer's or other dementia. It gives you a good look at how it affects the patient and offers some helpful advice for caregivers.

In this book, Mr. Phelps, after much frustration, was finally diagnosed with Early Onset Alzheimer's Disease and was still in the earlier stages when he wrote the book.  I truly found myself envying him in some chapters, mostly because he could still drive and do a few other things I am no longer capable of doing.  In other chapters, I was thinking how fortunate I am that FTD has not yet robbed me of other abilities, mostly the ability to still read and to enjoy it.

In the chapter where he was talking about not being able to read more than a paragraph at a time, I started thinking. I still love to read and don't seem to have a lot of difficulty focusing on a book. I read an entire book nearly every day.  I will admit, however, that I keep my book selections to lighter reading than I have in the past, nothing that will stimulate fear, frustration or deep thinking.  In contrast to that, I can no longer enjoy watching a movie.  I can handle an hour-long television show most days, but find I need to keep my hands busy doing something to keep me from getting restless. Anything longer than that, I cannot focus on or follow the story. I also can only handle one or two shows in a day. Yet, I can sit for three or four hours and read. I am extremely thankful for that.

While I Still Can helped me realize that I am not alone in a lot of other symptoms as well.  He points out that some days, just the sound of a spoon dropped onto the floor is magnified to a hugely irritating level.  Some days, when my husband unloads the dishwasher (Yes, I am so very lucky, he does laundry too!) I find myself clawing at my own skin and tugging on my hair, it is just that irritating to my system. Fortunately, I don't do it to a level that I actually hurt myself.. Also up there is an intense fear of crowds, due to the noise and hubbub of activity. Blinking lights are horrid, leading quickly to what I call "sensory overload."  I could not understand why I have become so uncomfortable in other people's homes. Now I realize it is because in my home, I know where everything is... the rooms, the furniture and anything I might need. When out in public, I find myself avoiding eye contact with others in the fear that I might have to make conversation with them.  The grocery store is now my enemy... carts going every which way, background music, screaming children, fear of seeing people I know and trying to keep track of my list and what I need to get. Again, I am very fortunate to not have to try to shop alone.

A quote included in the book summed up how I feel often times:  "I used to have a handle on life... but then it fell off."   I sure lost that handle this week, but with patient help from my family, I feel like the handle is back in my hand.  Plus I know I get to see my therapist this week.  We are planning on talking about cutting down my appointments from every two weeks to once a month. I cannot tell you enough how much of a lifesaver she has been. I strongly recommend finding a therapist who specializes in working with dementia. It takes someone who understands dementia to realize that my depression is a result of the dementia, not the cause of it!