Wednesday, 24 July 2013
Caregiver Wednesdays: Knowing the signs
died with Alzheimer's at 66
It's always there, in the background. Just there.
Then something will happen. I will search for a familiar word, or put the rice cakes in the fridge or forget an appointment. That's when it sits up and takes notice.
Because my mother had early onset Alzheimer's disease, and I am the age she was diagnosed (although she probably had it for a few years before that--they weren't as skilled at recognising it back then) the fear lurks. I don't think of it every day, but it's always there.
Knowing the signs matters to me. Because I know those behaviours I mentioned are normal, I grin and go on with life. Knowing the signs can allay unnecessary fear, as well as alert when there should be concern.
My Dad complained my mother had become a messy eater, and was always spilling things on herself. This was an early sign in our family. Sometimes people resist showers or bathing, and someone who was always immaculate in what they wore starts to look unkempt. Everyone can have a bad day, but we are looking at patterns.
This is the most obvious sign, but it's important to understand what this means. Surprisingly, a percentage of people with AD don't experience memory loss at first, and this can lead to a misdiagnosis. Usually past memories are intact, and it's the most recent ones that are affected. Anyone can forget some details of a recent dinner party, but when you have no recollection of attending at all, that is a concern.
Sometimes I think, "Did I tell you this, or did I just think about telling you?" Or, "I've told this to a few people, but I can't remember if I've told you." That's normal. Asking the same question or telling the same story over and over again, sometimes minutes after the last telling, is not normal.
Doing Strange things
The minute I opened the fridge with the rice cakes in my hand, I "tsk-ed" myself and put them in the cupboard. My mind was on other things. I often get distracted as I work out a problem, or think out the next section of my novel. We had a pastor once who had the police follow him home because he forgot to pay for his gas at the gas station. (This was in the days before you could pay at the pump.) This happened twice, to his wife's huge embarrassment. He was thinking about a sermon, and got distracted. Distraction is normal, but if you put the dish soap in the freezer, and don"t realise there is a problem, that is a problem.
Everyone has those "tip of the tongue" moments. You go to say a word, and it's not there, but it is hiding just behind a corner of your brain. The more you try to coax it out, the more it hides, until you give up and think of something else, and out it pops. That's normal. People with AD have profound difficulties with language, and as the disease progresses, conversation is a tangled ball of wool, where the listener is struggling to find the thread.
You may not notice this one at first, but over a period of months, you may see a pattern of withdrawal from activities that used to bring pleasure, or increased anger with someone who used to be easy going.
Often, the person is aware of a problem, and increasingly frightened by it, which leads to withdrawal. The unconscious thinking is, "no one will notice my problem if I don't spend time with them." Fear of what is happening can also lead to unprovoked outbursts of anger or sadness. It seems to come from nowhere. In reality, the person is shaken to their core with what is happening. Depression should also be explored medically if these signs are present.
This is often the first sign of trouble. When my mother stopped cooking (which used to be her passion) we thought she was just tired of it. It took several months to realise she didn't know how to cook any more. The day she phoned and asked how to prepare a boiled egg, I told her, and sobbed when I hung up the phone. This is difficult to watch. Getting lost in familiar neighbourhoods is another common occurrence. "Familiar" becomes a foreign word as the disease progresses.
Why go to the doctor to get a diagnosis? Many reasons.
It may not be Alzheimer's, and could possibly be treatable. There are other reasons for having some of these changes in your life.
If it is Alzheimer's, there are medications to improve function, and many supports to help you and your family deal with it.
There is no cure at this time for AD. The focus should be on knowledge, and providing the best possible quality of life for the person suffering.
Because even with Alzheimer's, every day is a gift.