No Judgement, Just Support, by Carmel Clemson

My husband Leon died nearly four years ago. He/we had lived with Alzheimer’s and Parkinson’s disease for six and a half years. Leon was a former engineering blacksmith with Massey Ferguson in Sunshine. When they closed down, he became a youth worker, working with troubled youth at what was then Turana youth training centre in Parkville. It is now known as the Juvenile Justice Centre. We had a large family and Leon was a great provider and an excellent father and grandfather. I first noticed changes in his behaviour when we were still living in Bullengarook and making frequent trips into Gisborne and beyond. I observed that his driving awareness was not as good as it should be, some of our kids also mentioned this to me. He would veer onto the wrong side of the road, drive the wrong way down a one-way street, and often fail to stop at stop signs. Life as Leon’s passenger became very scary.

A few months later he complained of headaches. His doctor ordered a CT scan of his brain, and this was followed by a referral to Bendigo health for a cognitive test. The test result confirmed that Leon was indeed suffering with Alzheimer’s disease. I remember being in dreadful shock and
being very angry with “why us” self-pity. This was very soon followed by guilt about why was I feeling sorry for myself, when it was poor Leon who had the illness? Your whole world is turned on its head, all your plans and hopes for the future are dashed. This is a common sentiment among carers - our futures are being stolen from us but we cannot talk of this, it would appear too selfish. The greatest hurt and humiliation came for Leon when he failed the driving test that is required after this diagnosis. Indeed, all of the carers in Woodend Lifestyle Carers Group agree that their partners were shocked to learn that their independence had been taken away. Driving a car, and being the driver, is very much tied to the self-image of men of this generation. Taking away their licence is somehow taking part of their manhood away.

In the sharing that takes place at our WLCG meetings, many carers felt wounded by the way friends and relatives dropped away after the diagnosis. We all understand that many people cannot deal with the changes this illness has wrought on the person they knew. Unlike most of the fellow carers at WLCG, Leon and I were blessed with a very supportive family and many good quality friends who never abandoned us. The carers support group proved invaluable because “you just don’t know what
you don’t know because you just don’t know”. Let me explain what I mean by this. Other carers and guest speakers gave me information about entitlements, such as companion card, half-price taxis and even how to get respite care. A bit of a joke as respite care was and is near impossible to get.
When you are a full-time carer, your brain is often muddled. The complexity of government forms is
mind boggling and finally the process of placing your loved one into permanent care is like writing a PhD. However, someone in the group has been through it before you and can help guide those new at this.

Sometimes all I would do at our gatherings was sit and cry, other times we would laugh together at some of the funnier sides to being a full-time carer. Nobody ever judged you because even though we might have been on different pathways we were all on the same journey. I was able to care for my husband for six years, but finally as his Alzheimer’s and Parkinson’s became worse, Leon needed full-time professional care. I was riddled with guilt when this happened because I had promised him many years before on our wedding day that I would care for him “for better or worse” and I felt that I had let him down badly. Fortunately, I was able to get a bed for Leon at The Oaks in Gisborne, which was right next door to where we now lived, so I was able to see him daily. We continued the tradition we had established some 30 years before in Bullengarook of having Thirsty Thursday. One of our sons put a fridge in Leon’s room and I kept it full of beer and wine. On Thursday evenings we would stand around in his room talking and laughing and even arguing about footy, or just things in general. Towards the end Leon was non-verbal and he could only enjoy his beer if I held it for him in a sippy cup. He would look up at me while I performed this duty and his eyes told me he was still enjoying himself. Leon’s death in September 2016 rocked my world. His was a peaceful death, he was surrounded by his family who had always been there for him. I still miss him very much, but I believe he is in a better place.

The Woodend Lifestyle Carers can be contacted by calling 5420 7132. Although located in Woodend, the group is for the whole of the Macedon Ranges and its neighbours.

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