Alzheimers - My Story

Alzheimers disease. What the hell is Alzheimers anyway? Two dictionaries at home here don't even list the word. Yes, they are both old. Wiki says is is a neurodegenerative disease that starts slowly and gradually worsens over time. But I do know one thing – its a bastard. A bloody bastard. It destroys the lives of those who have it, and ruins the lives of the partners, family or friends of the person that has it. The pressure, the stress, the worry, and the hardship is huge. All that stress and hard work I went through in my working life was just practice. Practice for what lay ahead....

My story began long before I even realised my wife had a problem. Before I retired from work, I remember coming home and there sometimes would be odd things that my wife had done. Nothing too odd I guess, but things like being told we were going out for tea. We were off to so-and so's place, all good but a little out of the ordinary. And the grocery shopping had been done, and I noticed like a double-up of a few things. Like another big bag of flour, another pack of toilet rolls, and yet another bag of salt. When I commented, the response would be “Its ok – we will definitely use them.” True. No problem. If she was talking to someone on the telephone, I would continually be asked who did we see last weekend, or what was the film we watched last night, etc. I thought nothing of it. She could no longer manage zippers – doing up zips became a major problem. Most often, she would give up, unless I did it for her. I remember the time our girl called me on the telephone, and asked me if I thought something was wrong with “ma”? Of course I said “Nothing, all good,” and she said “Are you sure?” Of course I was.

Things slowly got more mixed up. When she was cooking, I could see things getting out of order, so I would step in and help. No problem. Even feeding the cats and dogs, I could see her getting confused about dog food and cat food, and how much to give each animal. We had an aviary, and some chooks. I was surprised to see her getting that all wrong. The parrots sometimes got the chook food and the chooks got the parrot food. I found myself constantly “checking” on things.

I retired from work May 2015, and from then on I could see there was definitely something going wrong, and my wife could sense it too. She would admit it to me that she was forgetting things, but I was not to tell anyone about this. “Don't you dare tell anyone about me, will you!” Fair enough. Time went on and I could see that there was less and less that she could do about the house. Even her hobbies took a toll, and I took over most of the chores in the house.

I cannot remember exactly when I decided to take action and call for help. Initially, I suspected a memory issue. But where do I start? Who do I ring, or go and see? I did talk about the problem of my wife with my doctor, he listened, but was unable to offer a solution, etc. So, where do we go when we want answers? Google, of course. So, one morning when my wife was still in bed (she had never been a morning person) I did an internet search of Alzheimers NZ. That was fruitful, there was an office in Manawatu, and there was even an 0800 number. So that is where it started – the help that is.

The woman I spoke to listened to me, asked a few questions, and she listened to my answers. I genuinely got the feeling that this person sounded as if she cared. I felt grateful. She said someone would call into our home and talk to us. I recall hanging up the telephone feeling somewhat relieved. Little did I know. Anyway, it was a start, and we have to start somewhere.

Someone did call in to see us, talked at some length to us both, filled out some papers, left some information sheets, and advised me to take my wife to the Marion Kennedy Centre sometime soon. It did happen, but not without tears and protest. The second time was not so bad, and eventually it became the normal thing that happened. And slowly it became more and more of a challenge to get my wife out of bed, showered and to have some breakfast, and get her to the MKC by 10.00 am. So home help was set up, initially for the three days she went to MKC. But it soon followed that she needed help for the other days as well. We were well and truly into our journey into this horrible disease.

At some stage, I cannot remember exactly, we updated our wills and set up our EPOA's, after receiving advice from friends.

That was our life for some time. She seemed to be reasonably happy about going to MKC, and it gave me a little break. My life became different. I attended support group meetings, which were a huge help. Helpful hints, things to do to assist our lives, and information leaflets etc. to take home and read were all of great assistance. I also became involved in the local art group, and started drawing, and it gave me great satisfaction. The art club became something I looked forward to, and I was learning to draw better all the time.

Early in 2018, my wife started to say things like “Where are we going today?” I would say “to your club”, and I would get the reply “I am sick of going there” or “I don’t want to go there anymore”. So it was started, Day Care at a rest home. Not received very well at all to begin with once again, more tears and protest, but it soon became “the normal” happening. First one day a week, after a while two days a week, and eventually three days per week instead of MKC. And then of course, an assessment was done and it was decided she was ready for full time care.

All this sounds matter of fact, but is just a sort of a record of the facts. But behind the scene, I have not made any mention of the hardship, heartache and pain of watching my best friend slowly, slowly,.... what? I am still not sure. I visited my wife often, sometimes when I left, she would be in tears, and sometimes I left and wept. It didn't seem to get any easier. But, I know it did. She was being looked after and cared for by trained staff, something that I could no longer do. That now was her normal. She was one of “them”. But what about myself? A normal life? No, not really. I know my life got easier, not having to care for my wife, but it was still not a good place to be. Christmas 2018 came and went. I spent time with my wife on Christmas day, and enjoyed a very nice Christmas dinner. I kept busy, our little dog was great company, and the art club was getting better and better for me. I started painting, and looked forward to going there even more. I also bought myself a “toy” (two wheeled) and at last I was able join some friends on outings and rides. A South Island trip was planned. I have some great friends that have been very supportive, and they have been a great help throughout this journey, and continue to be so.

The years passed, 2019, then 2020. That was a bad year. Firstly, my place was burgled. Twice. Lockdown came and no visiting was allowed with level 4. When we were allowed to visit with level 3, masks were required, which was very confusing for someone with dementia. Her gradual decline was evident. At some point she suffered a stroke and was hospitalised, as she required greater care. Finally, she passed away October, 2020. Even though I knew what was coming, it was still a massive shock.

I am now well into 2021. What will happen I am not really sure. I continue to look forward. Be positive, etc, etc. Is there any other way to be? I suppose eventually I will sell up here and move, somewhere. But I am really not at all sure, but it will take quite a while to clear out this place. I know there is no hurry. Moving away to a new area and starting a new life is an option. Staying put with familiar surroundings and good friends is another. I do know that if I do nothing, then nothing will change. Maybe it doesn't need to.

Time will tell.