What’s it like during the early stages of Alzheimer’s?

This is the seventh in a series of articles written by Frank S. P. Yacino regarding Alzheimer’s disease. He is the husband and caregiver for his wife Barbara, who has been struggling with this disease for over fifteen years.

For us, the early stages began in 1997 when we were first made aware that Barbara had issues with her memory. She was tested by representatives of McLean Hospital from Boston when they conducted a free clinic in Worcester to anyone wishing to have their memory tested. The nurse advised us after the test that Barbara did not do very well on the test and that she should see her primary care physician for further testing. Our family recognized that Barbara was having trouble with names a year or two before this time, but she kept passing it off as “I’m getting old.” In 1997 she was only 62. It’s difficult to pin down an exact day, month, or year when this all began because Barbara was starting to have a hard time with most everything. She would forget how to do simple tasks around the house and names of the appliances in the house.  She would make name stickers and place them on the washing machine, dryer, cupboards, iron, even the closet. She was very good at covering up things and making it look like she knew what was going on. Barbara was still driving at this time, a concern we all had, and continued driving until 2004. (This subject will be taken up in a separate article.)

On June 3, 2002 we began seeing a neurologist twice a year. Barbara began taking Aricept as a medication to slow down the progress of dementia. She would be tested each time we went to the neurologist by being asked to remember certain words or phrases the doctor would give her and then ask her what those were a few minutes later. On our first visit Barbara scored a 15 out of a high of 30, which wasn’t too good. Each time we would go for her check-up that number would slowly go down and by the time we last saw the doctor on June 7, 2004 her score was 5. And that’s when we were told Barbara had Alzheimer’s. It was a serious blow to both of us, since we had not experienced this disease in our immediate families. It did occur in both my parents side of the family but not Barbara’s, to our knowledge. So by not seeing it on a daily basis or living with it we were aloof of what my cousins were going through with their parents. In December 2004 Barbara had an appointment with the neurologist but would not go because she “wasn’t making me any better.”

Up until 2005 living with Barbara was very difficult because of my not understanding what was really going on with her. (That’s when I started going to Support Meetings. That initial experience with the group was previously written about in the third article entitled “The benefits of a Support Group.) I would always try to correct her when she said something that was not correct. She would get angry at me and many times I would literally yell back at her the correct answer and ask her “why don’t you know that?” I remember many times how she would look at me and say “don’t you understand I’m losing my mind.” Honestly, I didn’t understand, but certainly do now. Deep down I can’t imagine what she really thought of me and why I showed so much anger towards her. It had to be frightening to her not knowing why the man she married and loved so much was not more understanding. In retrospect this point in time was a real low for me and I’m ashamed of the way I treated Barbara. I mull those times over in my mind daily wishing that we could go back to those days knowing what I know now.

I can very vividly remember a day we were riding in Uxbridge and she pointed to a house and said “that’s where Paul lives.” I shot back right away by saying “no it isn’t, he lives in that house” (it was two houses away). She kept insisting she was right and I wouldn’t give in to her at all. We argued about that incident all the way back to Webster. Was I right in the manner in which I dealt with this situation? Not at all, because in hindsight it would never happen today, now that I have a better understanding of what this disease is all about and the anguish she was going through.

I’m sure that any caregiver who may be reading this now has had similar experiences with your loved one and if you have, please take a moment to reflect on what you are doing and how much it is hurting your loved one to know that you don’t understand or care about their situation. My experience certainly did not show the love and compassion at those delicate moments in Barbara’s life when she really needed that love and compassion. Today it’s a different story. She gets the best of everything and my whole world revolves around her needs and her comfort. I regret all the nasty things I said and did during those tumultuous years.

During these years she also developed many idiosyncrasies, one of which was her need to have on several layers of clothing--- shirts, sweaters, or coats. It would not be out of the ordinary to see her with two jerseys and two sweaters on at the same time, or two coats. I never saw her wearing two pairs of jeans or shorts, it was only the upper half of her body she would over-cover. It was difficult to make her understand that only one layer was needed in the summer and only one overcoat in the winter. Again, this was a phase she went through and then she grew out of it once I began to dress her, as she had forgotten how to dress and what clothes to put on.

Another of her idiosyncrasies was that of taking what was not hers (bluntly---stealing). This occurred whenever we went shopping.  She would take items from the grocery store or the department store we’d go to. She’d tuck everything in her coat or shirt and I’d find it when we got home. The next day I would bring it to the store and silently replace the item where it belonged. I felt compelled to return everything in case we had been seen on the surveillance cameras. When we’d go to church she’d even take the church bulletin and hide it in her shirt or coat. I tried to explain to her when we got home that it was free to take. She never did understand that, but by this time I was aware of where her mind was and didn’t argue with her.

When she would go shopping alone she’d come home with writing pads, pens, pencils, you name it-----she was a hoarder too. Those items though she actually bought and paid for, as I would see her looking at the slips when she’d get home.

So, during the early stages, caregivers won’t really know what to expect from their loved one. Rule of thumb----expect the unexpected. Try to maintain a calm demeanor when speaking to your loved one; don’t raise your voice to him or her, be gentle, and most of all, be kind, considerate, and compassionate to them. Hopefully you will be able to learn from my mistakes, which I regret immensely, and make your loved one know how much you really care about them during this scary transition time in their life.