EXPERIENCE FOR “SOUL MATTERS”

Anger, loneliness, frustration, exhaustion, impatience, embarrassment, guilt, unfairness, resentment, inadequacy, …. all common emotions experienced by a carer, as I was until recently, and I’m sure emotions experienced by many of you here today.

However because of the underlying conviction that soul matters, hope, fun, laughter, courage, respect, freedom, calm, admiration, gratitude, wisdom, love… all these and much more we discovered together in the nine years of caring between me and my elderly relative. Above all, love.

I didn’t know how to love her before she suddenly lost her sight, hearing and then a few years later, had her stroke. We had never got on well before, and somehow the change in both our lives was like a ticket to a new relationship that began when she 80.

Today we are approaching the subject of older people and of the soul from many angles. What all religions have in common is the Golden Rule – “Do to others what you would have done to yourself”. Treating my elderly relative as I would have wanted to be treated myself meant a radical change in my whole attitude to the way I looked after her.

Soon after her stroke, the chaplain came into the hospital ward and introduced himself to her “Oh hello, I’m Charles!” “Oh hello”, she replied, “I’m atheist!” In fact she always declared with great pride that she didn’t believe in God, and no way was I, as a Christian, ever going to thrust God at her.

And yet how to take care of the soul of a person? You can do things for the body you are looking after, but how can you look after something you can’t see? What approach should we take? The answer is of course that everyone is different, but I believe everyone does have a soul so the need to let that soul be cared for too is the same. In my own circumstance, caring for my atheist relative, the question was “How do I ensure I don’t neglect the soul, without talking about God?”

And the answer was very clear. For me it meant not “what” I did for her or “how much” I did for her but the “how” of what I did for her. The “how” of the very small things like putting on her socks. So frustrating! I’d find myself shouting at her “Well you could at least TRY!” when her foot wouldn’t do what I wanted it to do and I was in a hurry to get to work and then I would arrive at work flustered with my cardigan on inside out and feeling cruel and wretched! Does this sound familiar?!

But the beauty of it was that I could always start afresh, and the next time I could put on her socks with patience and love.

My personal approach is Christian and so, the words of Jesus “Whatever you do to the least of these my brothers, you do to me” meant that whatever I did or did not do for my elderly relative, I did or did not do to Jesus. I wanted to try to see Jesus in her. This always had to be my thermometer - the measure of my love. I am convinced that we can transmit God’s love or our lack of it just through the way we touch someone, through our tone of voice, through our facial expression… and certainly if there is Jesus present in the other person, then something as simple as putting on a sock is a privilege, and I’m sure I could give her something spiritual through the way I held her foot, more than any words.

Another big discovery about myself was in store. She had always been a forceful person, and apparently strokes can bring out negative traits even more. When she was discharged from hospital I found it really hard, and after only half an hour we had had a row. I felt terrible, because I had added more suffering to her affliction. I made a firm resolution to start again with her and see her new every time I went into her room. However I was worried I wouldn’t be able to keep this up.

So I rang one of my Christian friends to share what had happened and my fears. What came out of our conversation was a real eye-opener for me, and I understood that it was I, not my relative who had to change; that maybe all these years I had been trying to treat people in the way I thought they should be treated, or in the way I thought was best for them, and not in the way the other person wanted to be treated. In fact I discovered that it was I, not her, who was the more forceful character!

Up until then I would have argued that a request she had made was ridiculous or not the best way or that she definitely needed this or that to be done….. Now, I was having to bite my tongue and instead allow her to be in control of her own home and of her own life; I had to look beyond the physical weaknesses and disabilities and respect her as a human being with her own dignity. Just as I would want to be treated if it were me in that position.

To give an example, if you walked in to find your elderly family member eating yoghurt out of a bit pot with her hand, with yoghurt all down her sleeve, it would not be surprising if your immediate reaction would be to tell her off for not using a spoon! Well, that’s just what I did.

“No, just let me be!” was the reaction. And then I thought, well, is this person, putting herself in danger? No. We carers want reassurance for ourselves, perhaps, by making things as “normal” as possible, but why upset the other person and take their freedom away just for the sake of doing what is in our own eyes the “norm”? For me it was a choice of being attached to my own way or expanding my horizons to accommodate the happiness of the other person, whose hand was weakened by her stroke. In the end the most healing atmosphere is harmony of relationships which brings our own peace of mind too, and safeguards our own health.

So I looked at all the yoghurt pouring down her arm and said “Fine” and smiled, and then I was able to suddenly relax with the fact that no harm was being done to anyone by not making the effort of holding the spoon. Washing her blouse was a small price to pay for the peace and calm I felt inside.

In many ways like this I learned to respect the dignity and freedom of the person to have the responsibility for their own choices.
For example, soon after her stroke, I had what I thought was a good idea! I bought her a basket for the front of her newly acquired Zimmer frame. I thought it would be really useful for when she had to carry bit and bobs around her flat.

When she saw it she said: “You’re wasting your money. I won’t be needing my Zimmer frame for long, I’ll be walking. By buying me that basket you are demotivating me from getting better”. I was about to insist, but again I felt that little voice inside me was telling me something: “Listen to her”. I realized once more that I was on the wrong wavelength – on my wavelength, not on hers, not on God’s.

To be a carer of the whole person we need to be on the same wavelength also in our souls, and this meant caring for my own soul, praying, going to church and drawing spiritual strength also by being in touch with my other Christian friends, so that I could recharge my own batteries and have some more love to give.

Being able to receive care from the elderly person cared for was another important experience. Time is short because caring for the physical needs takes long. But getting outside help, for example for her cleaning her flat, so that we could have a bit of time to chat, to share, to listen to the wisdom gained from the experience of her years, to laugh together was so important to both of us, and when we could even laugh about the disability itself (her deafness), it was great. “I’m off to buy some noodles” I told her one day. “Don’t bother, dear, I’ve got some.” Only to find when supper time came and she directed me to the cupboard, that I was being offered not noodles but needles – knitting needles!

The loneliness of the carer and the loneliness of the elderly person being cared for can be like two planets apart whose orbits never touch. As a carer, you don’t dare communicate how hard it is because you don’t want the other person to feel bad about being such a bother to you. And the elderly person doesn’t dare communicate how bad things really are, for fear of being a burden, or at worst, being put into a home. So the elderly person tells you they are fine, they’ll keep secrets, they’ll hide the evidence, the relationship suffers, the soul can’t develop….and so the loneliness of two worlds is perpetuated. Body and soul are so inextricably linked that only when both sides discover that the suffering of physical pain and the deterioration of the body are in fact of value in the eyes of God, then the sufferings can be shared and carried on a journey together, not alone.

My elderly relative began to change. A year or so before she died, after over 30 years of having maintained a very hostile attitude towards one of my Christian friends, out of the blue she invited this person over to see her. They had a long chat. Afterwards my friend told me that for the first time she felt there was a relationship. She was struck by my relative's eyes and felt she was very close to God. 

Shortly before she died at 89, she suddenly announced “Do you know, Catherine, I think I’m not an atheist after all, I’ve decided to be that thing in between.” “You mean agnostic? When you’re not sure whether God exists or not?” “Yes, that’s it”.

 I know that the relationship grew into something that was a real development of both our souls and which transformed both of us. A few hours before her unexpected death she gave me a tight hug and said “Thank you for all you’ve done for me. You couldn’t have done more.”
It was something she often said in the last couple of years of her life, and I said the same to her. I believe that relationships, by the very nature of the word, are always something dynamic, a two-way thing, and that whether you talk about God or not, can reach a higher level and become a three-way thing. I tried to love her, and that love came back not just to me but went out to all those who helped her.

As a result of sharing my experience in a group discussion at a carers' conference in Hertfordshire, I was invited by the Primary Care Trust to represent carers on a new committee called Public Involvement Panel. I found myself wondering why I was there, as I have no National Health background and here we were with the power to possibly make changes, at least in Hertfordshire. I realized that when you try to love, just with a simple action, it’s like throwing a small pebble in water. The first ripples spread across the water and grow larger and then maybe waves will come that we can’t even begin to imagine.

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