it takes a community to care
My name is Nancy and I am a lover, a fighter, the wife of the late Michael Cumming, mother to
our son, Nelson, and a full time teacher at Magdalene Catholic College, Smeaton Grange.
I am an advocate involved in raising the profile and need for a one stop memory clinic in the Macarthur Region.
Without a community of caring people, my Michael’s story and indirectly my story would have been very different. There are no winners when it comes to dementia only a gut wrenching realisation of what is very likely to happen to the person you love. It is a world full of contradictions, agitation and changing relationships.
I went from being the lover to the protector and fighter for my husband while allowing his dignity. Mike was ill and suffered a delirium. I was told by the hospital to take him home and to give up work to look after him. I was on sick leave from having a double Carpal Tunnel surgery done only days before. Our son was in his first year of university, on his L plates and now our driver. Michael’s delirium progressed into dementia.
DBMAS (Dementia Behaviour Management Advisory Service) and my sister, Maddalena, became my 2 am frantic phone call recipients when, in the dead of night, the panic would take over my being.
Both Mike and I accessed phone counselling through Dementia Australia. It was while attending a course run by them that I got my first real support. Over coffee the presenter spoke to me about having a specific activity or place or time of day that was to be protected as ‘me time’.
So I joined Toastmasters because I felt I had lost my voice. The once a fortnight meeting fitted around Nelson’s university commitments so we would tag Michael’s care. The presenter also said it was important to think about life without Mike, what that might look like. I am glad he gave this advice because when things became difficult, the reality kept whipping the wind out of my sails.
Once he had dementia, Mike wanted to recapture that dark brunette that he had fallen in love with! Nancy would wonder, do our husbands actually see inside of us, to the beauty of youth that they fell in love with, so that is what they saw every day . . .
Routines became extremely important. Mike was my wakeup call in the morning. I would shower and get breakfast ready. At 7.20a.m. I would buy and deliver the daily paper home - this was the sign that Nancy was going to work. Mike could check the day and the date. He would kiss me on my way. As Mike’s condition deteriorated, it was my work place, Magdalene Catholic High School at Narellan that became our saviour. I was directed to just ring and give an estimated time of arrival and, if I needed to stay home, to do so. This reduced my stress which had a positive flow on effect with Michael’s moods and the general feel at home.
Through the hospital we set up social support for two hours on two days. Mike would also visit the Narellan Men’s Shed, meeting with other men who were aware of his condition and were accepting. Mike just wanted the chin wag and to singalong under the gum tree. Camden Meals on Wheels provided the volunteer transport and it worked for quite a while. On Wednesday’s Mike became part of the Meals on Wheels, Meal with a Mate program.
Two or three volunteers were rostered to sit with Mike and enjoy a meal and a chat. One of the volunteers brought games, puzzles and showed Mike photos of his grandkids. The Volunteers would also chat with Nelson and give him guidance. It became a mini men’s club.
We would listen to Mike about his needs and desires. He wanted to get healthier because his arthritis had also got worse. We spoke to our family doctor about this. He was given the six subsidised visits to work with the exercise physiologist in the rehabilitation program at Anytime Gym. We managed to use the Social Support on Monday to take Mike to the gym and then for a short drive and a bite to eat. We eventually added Thursdays with the exercise physiologist at Mount Annan Leisure Centre. This cost us the joining and ongoing fees of the gym plus $38.00 per half hour session which I claimed on Bupa, but that ran out quickly. I would take Mike to these sessions. Throughout his illness, Mike never had a fall and this has been attributed to the tailored exercise programs.
Fridays, Mike remained bored at home.
Saturdays we would do what we called our dementia run into the countryside and Mike would look for bird nests in the trees, and cattle and horses in the paddocks. He always made comment on the clouds and the different shapes they morphed into. We would chat the whole way. We would troll a friend’s new lawn and give them a score out of 10 for the intensity of green and maintenance they were achieving. We would text them the result and then travel to the local bakery.
One time Mike was inappropriate with his language and I reminded him that he may not be allowed back if he spoke this way. The owner came out and said that ‘Michael would always be welcomed here‘. They understood what was going on. This was our reception in all cafes we frequented. They had seen Mike with his weekly carers. They knew his table, his standing order and his need for a stool rather than a low chair.
Sundays it was Mount Keira Lookout or the Grand Pacific Drive.
Each week I would dial my mum’s phone but Mike would speak to her. Whenever anyone rang us, Mike answered the phone. He wanted to keep up his speaking skills.
If I had given up work, there would have been no way that this routine could have been financed and maintained. By me working, I managed to keep Mike connected within the community and I made many valued connections and friendships. We opened our homes and hearts to community organisations
Nelson Cumming, doing a ‘John Lennon’ for the school Trivia Night, to raise money for Westmead Children's Hospital.
Nelson and his dad.
About six weeks before Mike’s death there was a turning point. Nelson was beginning to understand and bring home a treat for his dad. He would also start to take Mike to the local library and for short drives. Mike in turn had become more appreciative that we really were trying to do the right thing but this was only achievable for us if I worked, Nelson began to realise it was Mike’s condition that he had issue with, more so than his dad.
We lost Mike at home to a massive heart attack. He did not want to leave us and we performed CPR to try to save him. We fought for the man we loved. His community that cares, also mourns him.
Nelson and Mike.
Nelson was embarrassed to walk with his dad. He found the way Mike talked to everyone excruciating. He resented that, when Mike went to sleep, he lost out to the marking and preparation that I needed to do for my work. He was angry that his dad had become an older man. He was angry at the disease, and he was angry that we were no longer a normal family.
Nelson had two melt downs with screaming and throwing things around the room. At these times, Mike became distressed because he had no idea how he had contributed to the outbursts. With the first outburst, I rang my girlfriend who came to collect Nelson and took him. This allowed me time to calm Mike and clean up the mess. I was distressed and rang DBMAS. The volunteer informed me that we had experienced abuse and needed to charge our son. This was not going to happen, but on his return, I quietly explained to Nelson that if there was a next time, I would press charges.
It was a while afterwards, when we were visiting my mum, that a similar outburst occurred. I managed to get our son into the car where he continued to argue the definition of ‘abuse’. So I drove to Nelson Bay police station and walked him in to ask the constable on duty the legal definition of elder abuse. The constable was excellent. He went through what constituted abuse and the process that follows. He advised my son that he had been abusive and then gave him some fatherly advice. That was the last of the outbursts.