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On Caregiving

“Adopting a sole identity as our care-giver highlights our illness and strips both of us of other identities, we have become care-giver and sufferer, in a relationship of co-dependence… In this role, you may feel soon overwhelmed by the multitude of tasks, of remembering for two, of planning and organizing for two, of covering up our deficits, and grieving over our losses, rather than looking for what remains. You can quickly become exhausted, sad, depressed and in despair…” (Christine Bryden, Dancing with Dementia, 2005, p149).

Becoming the caregiver of a spouse is a painful transition from being their husband or wife. I have often wondered if this is a healthy or even normal transition. Should you become the carer of your spouse? What happens to the role of wife or husband? Do you just let go of that? I am not sure that I have an answer to this.

I think (and I am not an expert as this has not happened to me – and I hope it never does) that this dual role is extremely difficult to navigate. When do you give up sleeping in the same bed? When do you give up YOUR need to be held, to be loved? The reciprocal nature of a loving relationship is exactly that – reciprocal. If you give up on your expectations of being loved and nurtured by your spouse living with dementia, you are bound to build up resentment.

If you give up the role of wife/husband completely and just become the caregiver, you will forsake the reason for being together. But more than that, you will (unknowingly) rob your partner of the reason why he or she married you in the first place – to be your loving partner. Your best friend. Your lover. So you both lose the essence of why you are in his thing together.

Of course, relationships change regardless of whether one of you develops dementia. However, the way you hold your partner – physically or emotionally – is essentially always being your partner. The person who you have chosen to spend the rest of your life with. Hell yes – for better or for worse…

You did not, could not in your wildest dreams have imagined that THIS would be your path. A husband or wife who now lives with dementia, seemingly not recognising you at times, being extremely irritated with you at times, not wanting you to chat on the phone with friends, being suspicious of your friends, not wanting you to be out of their sight. Wetting the bed. Missing their aim for the loo. Staring at you with a blank stare. Slapping you through the face when you try and change soiled incontinence wear. Sleeping most of the day…

This is not what you signed up for! So don’t. I know this is easier said than done. But try to keep your role as a wife or husband. Hold your spouse in the loving gaze that you held him or her the day that you met. See the person whom you married, the father or mother of your children. The person who ran a successful business. The one you went on holiday with, made love to, in whose arms you fell asleep.

Foucault talked about “the medical gaze” – if you start seeing your spouse through the medical gaze as a patient living with a disease, if you focus on bodily functions and de cits, you will sever the ties of the loving gaze and not be able to hold them in your heart as the most important person in your life.

Get help. Find someone who can help with the physical stuff and bodily functions. Many people in South Africa have wonderful housekeepers or domestic workers who can and will help, who are natural caregivers with huge compassion. Let them help you. Don’t go at this alone. Look after yourself – every day. Go and play your golf, have your hair done, go to the movies, go for walks, go out with your friends? And maintain your role as wife or husband.

The biggest gift you can give your spouse who lives with dementia is not the best physical care or medication or doctors. It is your loving gaze, it is your mindful presence, it is just being there, holding hands. That is enough. And that is what you signed up for.

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