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Matters of Life and Death #5: Dementia and Frailty

August 14th, 2011 by Thalia Kehoe Rowden

I read some of Sandy’s story on Sunday:

One afternoon, I left work and did not know how to get home. This was the start of a “downhill no return” into the Alzheimer’s world. I am now in my world, a world of confusion, fatigue, and most days, in severe pain.

I know there are days that I am more confused than others, and there are some days I am more agitated than others. I used to be this very independent, overachiever. And now, I am this very dependent underachiever, which causes me much frustration. Where things used to be very easy for me, all things now I find very complicated  even the easiest task. 

Alzheimer’s Disease is the leading cause of dementia, though there are many other kinds and causes.  What they have in common is that changes in the brain cause loss of memory and other functioning, so people with dementia progressively lose the ability to do things they used to be able to do.  It’s distressing and difficult, and for many of us, terrifying.

A show of hands on Sunday morning showed that dementia is the thing many of us are most scared of happening to us.  So where on earth is God’s hope in what seems like such a hopeless situation?

I suggested last week, when we looked at a response to disability, that where we look for God and for hope are the keys to making sense of a world full of broken people (including ourselves, whatever our physical abilities).  God comes to us in the imperfect – so if we are always chasing perfection and comfort, we are likely to miss out.  And if we rely on the here, now and visible for hope, we’ll be disappointed; but perhaps if we lift our eyes to a further horizon, we might find a bigger picture, and our place in it, that brings hope to the broken.

I think our terror of dementia comes from our perfectly reasonable horror of death.  But as Paul tells the church in Corinth, this perfectly reasonable fear can be subverted by Jesus.  In aligning ourselves with Christ’s death, we can also share in the perfect, permanent life that Jesus brought into our world: ‘We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body’.

It’s a big ask, I know, but perhaps our terror of dementia contains an invitation from our great God to embrace the death we see others carrying around, embrace the death, the flaws, the weaknesses that we carry around in ourselves.  Perhaps in losing our lives we will find them.

Sandy’s story is not dominated by distress.  See how she can hold life and death together in her own understanding of her difficult situation:

My eyesight is unpredictable, so that leaves me with little reading time. But when I can read, I enjoy reading my Bible and spending time with God. I love it when my husband tells me it is time to go to church. There I find peace (even though sometimes it can be chaotic)…

I have autonomic neuropathy and peripheral neuropathy, which gives me much leg and arm pain. This complicates things, but I am a fighter. I have much determination, so I keep on fighting and keep on going. God is good, and he will always remain on his throne. There is where I find my peace and draw my strength. 

I never have what people call normal days, but each day is a day in its own and I thank God for every day. He gives me as someone else stated (which I can’t remember who), “I am thankful for this day God has granted me on this side of the soil.”  Another one of my favorites is, “This is the day that the Lord has made. Let us be glad and rejoice in it.”   

You can read more stories by people with Alzheimer’s, and stories from their caregivers, here, and watch the video clip we saw on Sunday below, with three people talking briefly about their experience of early onset dementia.

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