Thursday, January 23, 2014

Demystifying Dementia

PHS Editor and Harlequin Historical author Michelle Styles's mother in law was diagnosed with dementia in 2011. On 1 January 2014, she was put in a care home. This column seeks to demystify dementia and its care so others do not have to face the living conditions she faced.
A small confession -- when my mother in law was diagnosed with dementia, I was relieved. In my innocence, I thought she would be getting the help she needed. After all my in laws were sensible people and had always used the doctors before. I also did not want to be the pushy FOREIGN daughter in law and so I didn't ask too many questions. I simply accepted what I was told and as my in laws lived over four hours away and we had been discouraged from making most visits (the children were disruptive), the majority of the contact had been by phone. They seemed to be coping and dementia can take a very long time.
On New Year's Eve, my husband had a sixth sense and had our daughter phone just to wish them a Happy New Year.  My father in law had what turned out to be a kidney stone and urinary tract infection and was about to leave by ambulance. He had made no provision for my mother in law except to take her with him to the hospital. He had carefully kept various friends' phone numbers from us and had not given our number to them.
Google came into its own and we were able to reach them. It was then that my husband learnt how much his mother had deteriorated. Her friend had wanted to speak my husband before but didn't want to seem to be interferring. My mother in law was taken into care which was the best place for her.  She is now clean and eating proper meals rahter than exisiting on toast and biscuits.
The friend gained access to the house and finally went upstairs. The conditions were far worse than she had realised.  My mother in law before her demntia had always been very house proud and a fantic cleaner.
At this point my father in law was released, found he couldn't cope and took an overdose. Luckily we were trying to get hold of him and he was found in time. He has now been moved up to live with us and we are trying to get my mother in law moved to a care home near us.
Things are complicated by the fact that despite being given the papers, and agreeing to do it, my in laws had failed to specify a lasting Power of Attorney.
When someone becomes mentally incapable without a lasting power of attorney, the families have to go through the Court of Protection to acquire a Deputyship. in order that certain bills can be paid or indeed porperty can be sold to support care. This is much more expensive and time consuming. It also means the person with dementia loses control of specifying what sort of care he or she might prefer.
My mother in law also had failed to keep appointments with the doctors, preferring the head in the sand approach and so fell through the cracks in the system. Unlike when people have cancer or other life-limiting illnesses, doctors are not so ready to follow up on dementia patients and they can fall through the cracks.
This is a shame as there is a lot of support out there which is designed to ensure the sufferers are able to live independent lives with dignity for as long as possible. The support is also designed to support the carers and explain how to look after dementia sufferers -- what to expect, what to look out for, aids to help etc. My father in law did not realise this.
The aim of this monthly column is to demystify the condition a bit and hopefully provide a bit of awareness and understanding.
First off  dementia means a set of symptoms which includes memory loss, mood changes, and problems communicating and reasoning. There are many types of dementia. Alzheimer's is perhaps the best known but even with a brain scan like my mother in law had, the results can be inconclusive and they may not be able to give a specific type. It is a progressive disease and the rate of progression differs with each individual.
 One of the best ways I heard it described is like a wall is slowly being built up. The person remains inside but she finds it difficult to communicate. Two thirds of dementia sufferers are women. 80% of the elderly in long term care in the UK suffer from dementia. They are classified at EMI --Elderly Mentally Infirm. According to various social workers and nursing home staff, my in laws' experience and the squalour they lived in is all too common.
 Unfortunately in the UK at present, the Alzheimer's society believes about only 44% of sufferers are actually diagnosed. There is a lot that can be done to slow the progression of dementia, particularly in the early stages but people have to get the help and not fall through the cracks.
 For a number of reasons, dementia sufferers and their primary carer can be very good at colluding and preventing the true extent of the problem being known -- perhaps because of a fear of care homes or the stigma it might bring.  One thing is certain a head in the sand approach only leads to an emergency and a quicker trip to a residential care home.
Next month, I am going to look at some of the little ways people can help. And equally some of the little clues we missed that should have alerted us to the looming crisis. My sincere wish is that no one else should have to go through what my in laws experienced or indeed what we did. People need to talk about dementia and stop fearing it.
If you want more information, the Alzheimer's Society is fantastic resource for all forms of dementia.

Michelle Styles writes warm, witty, and intimate historical romance in a wide range of time periods. Her next book Return of the Viking Warrior is published in May 2014. You can learn more about Michelle and her books on her website


  1. Hugs, Michelle. I have a writer friend that went through something similar with her parents, both of them were in mental and physical decline and covering for the other and I know it was very hard on my friend to get it all straightened out.
    I have an older son with special needs and there is a similar desire there to "stick your head in the sand" and leave family in a lurch once the primary caregivers are gone. This New Year, my husband and I met with a lawyer and began drawing up the documents to make sure he is well-cared for and has the best life possible if something happens to us and he is not able to live independently.
    I thought it might be a difficult experience, but it was a huge weight off my shoulders to get it done. So if anyone out there is thinking about putting these sorts of things off, don't! A few moments discomfort or sadness is worth saving people you love from a lot of heartache and worry down the line.

    1. It is amazing what relief doing something like that can bring. It is really good that you are ensuring your son gets the proper care and that others don't have to sort the mess out.