Brian and I have been together since high school – over 40 years. We married when we were just 20 and 22 and have been married now for 36 years.
I first started to notice some differences in Brian about 7 years ago. He seemed to be less interested in his work, a bit forgetful with names and dates and a little complacent about his dress and shaving. I seemed to take over a lot of his traditional roles at home – disciplining children, making decisions about our finances, organising outings – not that he did all of those things before, just that he seemed to defer to me for final decisions now. A lot of these traits just reminded me of his father and I was happy to accept the changes – at first. He did not discuss any concerns he had with me about these things.
Brian was also noticing changes. But he did not want to worry me. He felt like he was wandering around in a fog all the time. Things he used to find easy, especially in his job, were becoming very difficult and he knew he was becoming forgetful. He was seeing a doctor for tests and reading all he could on the internet on failing memory. He self diagnosed stress and vitamin deficiencies and expected to feel better as soon as his body had more vitamin D and less cholesterol.
Luckily the doctor took Brian’s concerns seriously. He ran a barrage of tests, prescribed some supplements and referred Brian to a neurologist. Then he rang me to come and see him.
He was surprised to find out I knew so little about Brian’s concerns and he stressed how important it was for Brian and I to talk about what was happening. He wanted me to attend all Brian’s appointments as he had noticed how unkempt Brian was becoming and how he did not remember from one appointment to the next what they had talked about. From that moment on I became properly involved in Brian’s health. Brian was trying to protect me from the concerns he had.
We went to Burwood for three appointments with the Neurologist. At the time I did not appreciate that neurologists are not part of the care of someone with dementia. They diagnose and move you on to someone who can help. Well – our neurologist diagnosed but did not move us on at all. He did all the simple tests as well as a brain scan and a lumbar puncture and on our third visit told us Brian had dementia – Alzheimer’s type- then sat back with an “aren’t I clever for diagnosing that” grin on his face and told us we did not need to see him again. We were devastated and left his office in shock. We drove silently for the hour and a half trip home and had no idea where to turn. We were very lucky to be advised by my GP of who to contact next. The support we have found through our case manager and our dementia support group has been invaluable over the past 5 years but the journey through this disease has been hard and impacted heavily on our lives.
Brian’s employer was wonderful and did not let him resign his position. They supported him with extra administrative services and redeployed other staff to help him with his role. This was an extraordinary thing for them to do and I do not know of anyone else who was treated so compassionately by their employer. My workplace was also wonderful, understanding that my changing circumstances needed flexibility and they did what they could to support me until I had to retire 2 years ago.
Following the shock of diagnosis we decided to get on with life as best we could. We followed all the advice about getting Enduring Power of Attorney and Guardianship sorted very quickly and put all the paper work in a drawer and forgot about it. We organised a “last big holiday” and had another honeymoon in Tahiti – at the end of the first year we felt so good we had a second “last big holiday” and went to Switzerland and Alaska. By the end of the next year we knew such things were too hard for Brian to manage – flights and hotels became frightening for him. We had a few long weekends away with friends but being away from home, long car trips, public toilets, and restaurants caused Brian to be fearful and me to be so stressed that none of these things continued to be fun. Our last holiday was with our two sons in North Queensland in 2013 – they had a great time but Brian and I had to stay in the apartment in the air conditioning for most of the trip.
The biggest impact on our lives was the changes the disease caused in our relationship and the relationship between our two sons. As Brian became more dependent on me I became more like his mother than his wife. It is hard to keep a “normal” married life when one of you is so dependent on the other. Our boys have felt the loss of their Dad. The very close relationship they had with him as they were growing up has died and their sadness is very evident.
Brian now receives palliative care. His disease has been aggressive and unrelenting. I care for him at home still. He is nonverbal and immobile. He sleeps most of the time and we have a hospital bed in our downstairs study where we both sleep now. Our downstairs toilet and laundry have been converted to an accessible bathroom. We have quite a large home but I rarely go upstairs now. We were lucky that our house lent itself so well to our new needs. Everywhere downstairs is tiled and open plan so we can move his day chair and his shower chair easily from room to room. I use an electronic lifter to get Brian in and out of bed.
Our youngest son still lives at home and he has suffered the most from his father’s decline. Where I have been willing to accept the changes and roll with them our son has withdrawn completely from his dad and just pretends he is not here. He does not eat meals with us as he hates to see me feeding Brian. He does not attempt to speak to him, although I sometimes find him standing silently over his Dad when he thinks I am not around. Our son has become angry and even abusive at times but I cannot persuade him to get grief counselling or to see a psychologist. I sometimes wonder if I am sacrificing him for his Dad, but I feel it is my duty to look after my husband and cannot send him to a facility where I know he will get less attention and not as good care as I can still give him. Besides, I love him dearly and just want him around.
We have led a blessed life. We have had a wonderful relationship since we were teenagers. Brian always earned good money and for 10 years we lived in England taking advantage of our proximity to Europe to travel as often as we could. We have travelled extensively, never had any debts, raised two beautiful young men, come from wonderful supportive families and have the most loyal friends in the world. I would not change anything in our lives. There is nothing we could have done to prevent this disease. Brian ate healthily, exercised regularly, did not drink or smoke and was a brilliant student who was still studying when he turned 50. So much for the use it or lose it theory! While there is no cure for this damn disease I just wish it did not move so cruelly slow.