*This was previously posted on The Wild Rose Journal as one of a series called ‘Letters of Hope’*
To the one left behind,
I recognise how hard this is for you and I am sorry. There are two D words in life that we do not talk about in polite company because they contain one of life’s greatest truths and one of its greatest fears.
The first word, death, is so final that many live in denial of it but the second is far more fearful. There are many who would rather face death than dementia.
I don’t need to tell you what it is like. You already know how it changes them, frustrates them, prevents them from remembering. When the mind sees the end closing in, it goes back to a place when there was still time, it folds itself up like a blanket ready to be put away. Everyone pities the patient and secretly fears the day they might become like them. It is a cruel disease and hard on the sufferer, but only up to a point; then it no longer matters.
But you know that. The reason I write to you is because, in the midst of the pity and awkwardness and selfish fear, the world forgets something about dementia: it is hardest for those who are left behind.
You’ve been left behind by the one you love but it’s not the same as when death takes someone. With dementia, you’ve been left behind – or perhaps in front – in time and place but the brittle shell of your loved one still walks the halls. It’s easier when they forget where and when and sometimes who they are, often it doesn’t bother them anymore, but for the ones they leave behind, it is a heartbreaking thing to watch.
I understand how difficult this is for you and all of the feelings that come with this burden of care, the hope, the anxiety, the resentment, the guilt, the fear, the longing, the helplessness. . . Don’t give up.
I’ve seen many who have been left behind over the years. I’ve been left behind myself and prepare to walk that way again. Anger, guilt, despair, even the denial that some people showed, it was all bearable but it was the defeat that broke my heart in pieces. They are not dead yet, you mustn’t give up on them. Do not bury your loved one until they’ve taken their last breath.
This person is made in the image of God. Sometimes it’s hard to see the image through the dust but it is there and always will be.
Do not feel guilty when you are angry or upset. It’s extremely difficult to understand and accept the condition and, deep down, we all know that this was not the way the world was made to be. Something in creation is broken and the sharp edges cut us all.
There will be moments of crippling helplessness but you mustn’t lash out at those around you. No one expects you to save this person and you mustn’t expect it either. God has not given you that role, he has given to you to be a carer. We already have a saviour and in him is the safest, most secure place you can be. It’s not wrong to ask questions of God. It’s not wrong to express your anger and pain to him; just read the Psalms.
You have a massive burden of care but you don’t need to be strong all the time. Right here and now, you have permission to break down in great, undignified sobs and keep bawling until that solid, strangling weight in your chest has lightened and breathing comes naturally again. Lament what is happening, grieve the tragedy of the Fall and the destruction it has wreaked. You are not being weak and dramatic, you’re simply acknowledging that this was not how it was meant to be. No, this was not how it was meant to be, but as you listen to their muddled remembrances, as you hold their arm and help them shuffle to the bathroom, as you calm them when they wake, lost and frightened in the night, remind yourself that this is not how it will always be.
I write to you because though you know these things, I am afraid that in the sorrow and pain of being left behind, you have lost sight of this truth: the world will not always be this way.
Though they may not recognise you now, they’ll greet you by name and with joy when you meet again on the other side of eternity. Though they are stooped and shuffling and vacant now, in the twinkling of an eye all things will be made new and sickness, sorrow, and confusion will be gone forever. Thought they repeat the same worried questions over and over now, in glory we will repeat the same song, ‘Holy, holy, holy!’
It won’t always be this way, remind yourself of that, struggling one.
And let me testify to this, if they are a believer, then you have nothing to fear. I knew a lady who was so sick she couldn’t move. She had no idea where or when she was nor who was with her but there was one thing she never stopped doing. Every time she felt an ache or pang, with each wave of weariness, each feeble sip of water, she would sigh ‘Oh Lord, help me.’ And every time we came to turn her or wash her or change her sheets or give her water, or add another blanket, she would lift her hand a little and croak the words ‘Lord bless you.’
Even as time passes, do not be afraid that they will forget their saviour. In a sense, it doesn’t actually matter because he will not forget them. They may not remember who their children are but God does not forget his. They may not be able to hold on to the memory of the scripture they once knew but God will hold on to them. Be comforted, our God remembers his own and he does not abandon them.
It is hard to be left behind in the limbo of dementia, to be left caring for someone you love dearly even though they aren’t sure who you are. There is much anger and sorrow and pain to work through, often even guilt, but you mustn’t give up.
I write to you as someone who has walked this way and walked it with (and even for) others before.
Be sad. Be angry if you need to. But do not be afraid. I write to remind you that there is a hope for believers, a promise that the world will not always be this way. One day, all things will be made new; hearts, minds, bodies, souls. While we await that day, remember this certainty and hold on to it: God will never forget nor abandon his own.
Held by the hand of him who holds all things,
Another who was left behind