Tuesday, March 30, 2010

Visitors from Another Planet

A few days ago, Mummy had visitors. This was a great thing. It afforded her an opportunity to converse with others in a way that frankly, she cannot or does not, converse with us. What I had no way of knowing though, was that at several points during the course of the day, she had no idea who the people were. So while, 'conversation' was occurring, it wasn't real.

One of the frightening realities of this ailment is that time has no real meaning. Whereas for the fully compos mentis, we are able to hold on to a particular time frame in our heads (without any effort), for the dementia patient, time seems more fluid. At any moment of the day the patient can be in the past or the present. Time isn't fixed and no longer flows in a linear manner, so while I was thinking that Mummy was having a grand time with old friends from home, what I later discovered was that she was sitting there smiling, and asking herself who the hell these people were.

Mummy is the one who once told me that we see ourselves as we were at some specific point in the past. We were at the time, talking about someone who was wearing some unfortunately tight outfit. Barbara's explanation was that the person had a mental image of themselves that no longer matched the actual. But, Barbara went on to point out, what we see in the mirror isn't necessarily what's there, but sometimes, what we've always seen. So this individual was probably 20 lbs heavier than she thought she was and was dressing for the lower weight. Hence the unfortunate outfit. Transposing that thinking to our present circumstance, when Mummy looks at her friends today, she sees faces that look familiar but she still expects them to be as they were 20 years ago (because time isn't for her, what it is for us). So their voices sound familiar, the information they share sounds familiar, but there is a significant disconnect between the look of them and whatever remains in her head as her expectation of what they should look like. She 'remembers' them as they were back then and expects them to be that way now.

When you add to that the lost ability to see time linearly and what you have is a life of moments. Some in the present, some in the past. Perhaps even some in a time yet to be?

Sunday, March 28, 2010


Probably the most challenging thing about Alzheimer's Disease is the circling and with AD, everything becomes a circle eventually.

Let me explain. This morning, we asked Mummy to get dressed to go out. This is actually a challenging ritual for us now. As foreigners, we have had to learn how to dress for the changing seasons. A patient with a memory and higher order thinking disorder, has no real ability to research the weather before choosing clothes. Dressing therefore presents a significant challenge. Over the last couple of years, we have discerned that the best way to avoid the problem of Mummy arriving downstairs in the wrong clothing, is to simply select and lay out the clothing that she should wear. This way, we ensure that it is clean; pressed and most importantly, appropriate both to the occasion and the season. Would however, that Alzheimer's would allow it to be so simple.

We are at that stage of the illness where whatever we lay out is the wrong thing. Whatever clothes are selected are for some reason, rejected. The primary objection is that the clothes are 'not her style'. She either doesn't like the color or the length or the style. It's always something. Rare is the instance when our offerings are met with no refusal. Often, there is no real reason offered, just "I don't want to wear that". And so begins the 'circling'.

The routine goes like this: my sister or I proffer the clothes and leave so that she can get dressed. She will either put them on and then remove them, or she will put on something else entirely (which is likely to be something she's been wearing about the house for days or something that is too tired looking to be worn out of the house). She shows up for breakfast dressed in something other than what you intended her to wear, and a discussion begins as to why she didn't put on what was left out for her. You trot up the (15) stairs only to find that whatever you selected has been put back into the closet and you must begin again. Often, because so much moving of clothes takes place (this is one of Mummy's time fillers), it takes more than a couple of minutes to locate the garments you had spent some considerable time finding earlier. And so it is. Circle number one. After breakfast, she is asked to go back up and change into the clothes laid out on the bed. If you are very lucky, she does so without challenge. If not, you may have to make this circuit at least one more time before all is said and done.

The real challenge for me is the steps. Every time I have to trot up these steps to find the clothes, to find matching socks, to get the comb, to....well you get my point, I understand why care-giving takes years off caregivers' lives. It's exhausting!!! Fortunately, I've eschewed anger and resentment, because more than the 15 steps 5 or 6 times in the morning, it is they (anger and resentment) that shave days off life. So I'm going with the flow and I'm taking my circles as circuit training. It's just exercise really. That's all. It's exercise.

So here we are...

So this is it. By writing these words I am acknowledging that my mother is on her way to a place where only she will reside.

Mummy has Alzheimer's Disease. Well OK, she has Dementia but though the Dementias are many they all generally seem to lead to the same Isolation Island. The medication is the medication, but really doesn't stop (nor indeed does it seem to slow) the progress of the disease.

We've been on this road now for nearly three years. The first year, I was in denial I suppose. I was insisting that she function like the Mummy I knew, but essentially, what had already happened was that Mummy was gone and Barbara had joined us. Last year, I spent a great deal of time being angry that she wouldn't do things. She wouldn't try things and when she did, she did so very half-heartedly. Again, what did I know? I was busy with my own challenges and had little patience for half-hearted approaches to anything. Little did I know that 'half' was about 'all' she had to give.

This year, well this week, something changed. We went to the physician and her profile looked frighteningly like my grandfather's on his last day on earth. Nothing like the realization that you're on a journey to the 'other side' to give you a fresh new perspective. So here I am, like an addict admitting my addiction. She's traveling to a place where she will be entirely alone. My job, and I have chosen to accept it, is to journey with her as far as I can and make her as happy as I can along the way. More than that I cannot do. So, we'll go to the Kennedy Center when we can. I'll take her to museums when I can and make sure she stays in touch with friends (many of whom she is already beginning to forget), as best I can.

At the end of the day, I don't know how much anything I do will lift the clouds descending in her head, but I'd like to think that some of it does and will make a difference. As I said to a friend yesterday, I have to try to create happiness in the moment. Beyond that, God will have to supply the increase.