Warrick's Story

If truth be known it may have started much earlier than 2013. In 2011, Mary had a fall one day and hit her head on the side of the bath. She was sent for a head scan but this showed, or so we were told, that there was no damage done to the brain.

Everything went on okay but there did seem to be some changes that at the time didn't seem to be anything to worry about. Over the following months things seemed to get worse to the extent that I insisted Mary go to the Doctor for a check up. I can't remember exactly why, but I insisted that I go into the consulting room with her. After the Doctor asked a few questions she said that Mary had the early signs of Dementia. Needless to say this upset both of us, especially Mary as she felt that meant she was going mad. When we arrived home she told our neighbour, a good friend of ours, that she had Dementia and was going mad. We tried to explain that it only meant she was losing her short term memory.

At this stage, I was unaware that Dementia and Alzheimers were in any way connected, or even what the progression and outcome of this disease actually was. Shortly after the diagnosis I was involved in the renting of the church lounge to Alzheimers Manawatu for use for a day care programme. Through the association with the carers who came from Palmerston North to run the day care and the local coordinator I was able to receive some information as to what to expect and was given a booklet called 'Dipping into Dementia'. This booklet was very informative and I gave it to my family/children to read so they would also understand. They found it hard to believe because on their visits, mum seemed pretty much the same except perhaps a little more quiet than usual. It was only as the disease progressed did the differences become more obvious.

The Doctor referred Mary to the hospital Geriatrician for a follow up of her diagnosis which happened in due course. There were at least 2 follow up appointments with the specialist who when asked about the situation said 'he wouldn't put a name to it'. He did say however that looking at the scan Mary had he could see that there was already some shrinking of the brain. This went on for some 2 years before he retired and we saw a new Geriatrician who after about 10 minutes asked me to take in the Enduring Power of Attorney and she would sign it as Mary had Dementia and was no longer able to make major decisions.

Following this decision we were referred to Support Links who came and gave Mary memory tests.

Over the next several months they came and repeated these tests until it was decided that it was not helping as Mary was only getting more stressed and frustrated as she found answering the questions too difficult. During this time, we were also granted some respite care time for Mary at the Alzheimers Marion Kennedy Club and 28 days respite care a year at a rest home to give me a break. I was also offered some home help for Mary with showering and dressing. Initially this was 2 days a week and later increased to 5 days a week.

During this time, her memory has deteriorated to the stage where she can't put names to photos and has has trouble remembering our children's names although she does recognise them when she sees them.

I took up the offer of the Care Club but did not use the rest home care as I felt I could cope with the day to day issues myself. The club was a real blessing as they had varied activities, and formed a choir and supplied a meal at lunch time and morning and afternoon teas, but the most important part was the fun and games they had.

Over time, I realised that it was not that easy, as showering in the mornings was becoming an issue for both of us, so I took up the offer of a helper who came in 5 mornings a week to help Mary shower and dress.

This did take away some of the strain but then things started to get worse as Mary became very restless in the late afternoons with what is known as 'Sundowner Syndrome'. After returning from the day care, Mary would go around and close all the curtains at about 3pm in the afternoons. If I went to the toilet or went outside she would follow me to see what I was doing. I didn't realise at the time that it was because she needed to know where I was. Also, Mary was losing the ability to find the words needed to communicate what she wanted to say. She was and in fact had been unable to do all the things she used to do like cooking the meals so this became another task for me to learn, along with washing, ironing and housework; although the latter I had always helped with. Prior to this disease, which it is, Mary was a great cook, knitter, sewer and reader but now all these abilities have vanished. She had a wonderful personality and sense of humour, these also have vanished. We also used to do a lot of walking but this became very difficult as she was unable to walk very far without getting tired.

One of the other major problems was the night times when she was unable to stay in bed and yet insisted on going to bed early but kept getting up every half hour or so and then going back to bed. Unfortunately, this continued throughout the night.

I did eventually take up the offer of the respite care at the rest homes which was traumatic for me in the beginning as I felt that this was the beginning of the end, but there is no doubt in my mind that it was very necessary for me to be able to continue to look after Mary for longer than I could have otherwise. Strangely enough when I went to collect Mary after the respite care she never asked me why she was there or where I had been but was just glad to see me and go home.

After the last time Mary was in respite care, the rest home Manager advised that Mary needed to be re-assessed for full time secure care. This came as a terrible shock but I realised that things at home were getting more and more stressful. This was referred to Support Links who then contacted Elder Health who came and did a further assessment and said it was time to go ahead and make the arrangements.

Some of the main things I miss is the chance to share special moments with Mary as she no longer understands. Last year was our 60th Wedding Anniversary and sadly it did not appear to mean anything at all to her.

Mary has now been in care since February this year. While I really appreciate the help I have received from Alzheimers Manawatu and the carers who run the club, I feel that more could be done by the medical professionals to be more proactive in diagnosing this terrible disease that affects so many people - both the sufferers and their families. The toll on them can be devastating.

It may be cheaper to keep the person affected at home with help, but the toll on the carer can also be great. Early information and support is vital to enable carers to care well and also to support them as this is no easy journey and doing this alone would have devastating results.

There are several books available that can give you a fuller understanding of the disease and there are many more things that could be shared but if you require more information, please contact the Alzheimers Society Manawatu on 06 357 9539.