I read some of Sandy’s story on Sunday:
I am 57 and was diagnosed in 2004 with early-onset Alzheimer’s disease. I was a bank manager and was very active in my community and church.
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.
Where is God in the horror of dementia?
I think the consensus this morning at Wellington South Baptist was that dementia is the thing lots of fear the most about old age. 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 this video clip, with three people talking briefly about their experience of early onset dementia.
Who cares for the caregivers?
Speaking of caregivers, just as with our conversations on crisis pregnancy, it is in looking after the looker-afterers that those of us on the periphery can make an enormous difference.
Living with, or loving, or looking after a person with dementia – or doing all three at once – is extremely hard work.
Often the carers suffer more than the people they’re looking after, being agonisingly aware of the deterioration and picking up all the slack of life tasks that the person can’t do anymore, from doing the grocery shopping to washing themselves.
If you find the idea of dementia terrifying, this is something meaningful you can do to lessen its horror: support a supporter.
Imagine if every caregiver had all the support they needed. That’s a pretty worthy goal, don’t you think?
I want to be a burden
Giles Fraser wrote in the Guardian earlier this year:
I do want to be a burden on my loved ones just as I want them to be a burden on me – it’s called looking after each other. Obviously, I know people are terrified of the indignity of dying and of being ill generally. Having someone wipe our bums, clean up our mess, put up with our incoherent ramblings and mood swings is a threat to our cherished sense of personal autonomy.
…[W]e are not brains in vats. We are not solitary self-defining intellectual identities who form temporary alliances with each other for short-term mutual advantage. My existence is fundamentally bound up with yours.
Of course, I will clean you up. Of course, I will hold your hand in the long hours of the night. Shut up about being a burden. I love you. This is what it means to love you. Surely, there is something extraordinarily beautiful about all of this.
She’s still herself
One thing I am trying to stop saying to my son, when he’s a bit sick or unusually grizzly, is that he’s ‘not quite himself.’ When he’s sick, he’s 100 per cent himself. Being sick or in a bad mood doesn’t make him less, and it doesn’t make him alien. He’s being the sick version of himself.
This matters. One reason people with dementia are vulnerable to poor treatment is that we sometimes think of them, and speak of them, as being less than fully human, because they can’t do what they used to be able to, and don’t behave in the same way.
Your grandmother is still herself. She might not be displaying the personality you remember, and she might not remember you, on a bad day. But those things are not actually her essence. When she was a bonny baby, all those years ago, she couldn’t do anything much either, but she was still a complete human package.
My personality and identity as an eight-year-old were radically different from how they are expressed now. If I develop dementia later on, they’ll change again. But I will still be me.
I don’t mean to downplay the distress of watching someone change in front of your eyes, in ways no one wants. All change is loss and brings its own grief. I do think the personality changes and the loss of competency that often go along with dementia would be less traumatic for loved ones if we were able to see them as unwanted change to be grieved for, rather than a diminishing of personhood.
Dementia and happiness
I’d like to close with an invitation to go and Google ‘dementia’ and ‘happiness’. There’s quite a lot there! You can read stories of the satisfaction people find in looking after their afflicted spouses. You can read of John, who is delighted to tell people about his grandchildren, no matter how often he repeats his stories of their exploits. You can read about research that shows a great many people with dementia do not experience unusual suffering.
Whether you find your hope in God or science or both, there is much to be encouraged about in the world of dementia, as well as much to grieve. If we can devote some energy to supporting those in the middle of it, and recalibrate our own fears in light of the hope and joy we have access to, maybe dementia will get even less scary for everyone.
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