The Ever Present Question

My wife askes in the kindest of ways “Do you feel like it is getting worse?”

In this middle stage of dementia, I manage to track my cognitive abilities multiple times a day because the analysis defines the strategies, the plans ahead.

Especially after exercise, there is the fool’s gold syndrome where the fresh flow of blood through the brain brightens the day, makes you wonder whether dementia has lost its punch or maybe is even transitory. The temptation is to plan the day like a normal person filled with tasks and people. But if I do, I’m always sorry — trapped, exhausted, and upset that I took the bait.

The standard default position is heavy headed like I got up from a deep sleep and have yet to throw off the cobwebs. Then there is the uh-oh moment when a bit unaware, I find myself in the deeper snow that you thought. Unable to move as nimbly and panicking a little.

The unfriendly cognitive position occurs when I know I have run aground. I am unable to process the words coming from you or leaving me, and so, therefore, I am unable to track the conversation. I told someone yesterday that I was beginning to not be able to track his story and it would be best to abandon it for now. His reply was amusing. “Let me just finish this one part”. Nothing left in the mind but muck. Not even the ability to reflect that it is muck. You are in the muck, period. Like the out of control feeling when you are sliding on ice in your car in a place you have never visited before. And of course, in this metaphor, you are in the car alone. Keeping it together is a little tricky. You know that hanging on is important, but you don’t know how to.

So when my wife asks is it getting worse, the measure is reflecting the frequency, proportionally, of these various dementia states. I told her that using this model, I knew it had progressed in the past three or four months. The changes weren’t A-Ha moments, but a gradual change of scenery. It’s a bit of a balancing act, watching what I can influence and remember that in a larger view I can’t.

I joke out loud that I will never win another marital argument. First, I can’t process the give and take fast enough. And usually, at the critical point of advocacy, my wife will use dementia. “You are not remembering this correctly”, she will say. What am I going to say to this? Zero is the answer.
But on a high note, if your family is asking is it getting worse, you are probably in the early stages and the changes that you feel are written on your forehead in thick magic marker, are not discernable to another person. They are fighting their own battles.

The scary part is when the episodes of confusion become so frequent they run together and form a new reality. We have nothing to compare it to, so it becomes real. Then they won’t need to ask the question anymore.



Greatest Hits of Christine Bryden

Ms. Bryden was diagnosed with Alzheimer’s at 46 in 1998. She wrote ‘Who Will I be When I Die’, and ‘Dancing with Dementia’, both of which carry so much wisdom for all of us, demented or not. A piece about her greatest insights — obviously from this man’s point of view — is mandatory. I consider her a hero because for me she began the process of self-determination and self-advocacy for those of us who have dementia, whatever it’s source.

‘Dancing With Dementia’

Each person with dementia is travelling a journey deep into the core of their spirit, away from the complex cognitive outer layer that once defined them, through their life experiences, into the center of their being, into what truly gives them meaning in life. P.11

But this is the experience of dementia, life in the present without a past or future. (I reject dementia’s interest in trapping me in the present so will continue to touch the future and past with the fingerprints that are irrevocably cemented in the dementia present.)

I am thought to lack insight, so it does not matter that I am excluded. P.40

A quote from her colleague, Morris Freiedall; “All that is given to persons with dementia is ‘hospice in slow motion’. We reject this. (the early stages of dementia cannot be defined as a waiting period, unless we all agree that each of us begins his or her waiting period at childbirth). Phooey. “We can discover ways of participating in life through giving and caring which restore our sense of value and meaning. Thus strengthened we find that again we can face and surmount challenges and affirm our courage and dignity. P.55

‘It’s as if we are bilingual or bicultural exiled from our past lifestyle, we have lots of time to deeply and creatively relate. Having been where you are, we can reach out across the divide to touch you in a new way. Having survived trauma, we know our strength….we can draw on our emotions and our spirituality. P.55

Take us at face value, as a person, first and foremost, not a disease. P.127

Just because we can’t express ourselves very well, does not mean we have nothing to say. Don’t interrupt our thread of thought, but let us interrupt you when an idea comes into our head, because if we wait, it will disappear. P.139

We need to move away from labeling ourselves as care giver and softened, toward becoming a care partnership in which we accept, collaborate and adapt to new roles within the journey of dementia. P.150

Is cognition the only measure of our presence? We are spiritual selves in relationship to the Devine. We are emotional beings with relationships. P.152

I believe people with dementia are making an important journey from cognition, through emotion, into spirit…What disappears is what is not important. If society could appreciate this, then people with dementia would be respected and treasured. P.159

I am who I am, not what I say or do. Who I am is defined by my spirit. In life, cognition and emotion may change, but our spirit is held in the grip of the Devine.

We cannot change our illness, but we can change our attitude to it. This is enough to transform our life.

‘Who Will I Be When I Die’

As I unfold before God, as this disease unwraps me, opens up the treasures of what lies within my multifold personality, I can feel safe as each layer is gently opened out. P62–63

The disease affects so much more of my daily functioning and yet I look so well because what’s wrong with me is inside my head. P.71

….after you have gone, I sink back exhausted, monosyllable, wrung out and empty of all showmanship. P.71

It is hard to understand what people are saying to me because I miss the first word or so…this is particularly difficult on the phone where there are no visual clues or a context. P. 79

I’d rather stay sick and get inevitably sicker then give away all this inner peace and happiness. P. 141

Surely remembering an experience doesn’t constitute the sole enjoyment of the moment. P. 144

Thank you, from me and all of us. Dallas Dixon