Monday, 7 May 2012

LIVING WITH DEMENTIA



My mother in law has Alzheimer’s. She was diagnosed six years ago and for the last three years she has been prescribed Aricept. Every day, from six AM to One PM my sister in law stays with her. For the next two hours my son, her grandson sits with her until my wife gets in from work just after three. For four nights a week my wife stays with her mother, my sister in law stays with her the other three. The family do this because they want my mother in law to end her days at home and not in a care home. They give a lot but it is beginning to take its toll. When Prime Minister Cameron talks about his big society he should acknowledge the role played by unpaid carers. For one thing, how much money are they saving the state?

For six years they have watched their mother’s condition degenerate: each day seems to bring a new change as slowly Janet’s brain closes down, and she communicates less coherently and keeps obsessing on one theme for a day. Some days she looks for her coat and says that she wants to go home. We don’t know what she means. She doesn’t know where she is so she could mean that she wants to go to her own house thinking that she is somewhere else, or does she mean home to Scotland, to the Outer Hebrides? There is no way of telling. Janet calls everybody “Catriona”. That is my sister in laws name. Even if it is my son or myself that are with her we are called Catriona.  She gets confused and frustrated by being asked a question so if whoever is with her can’t catch on to the current obsession they can do nothing more than show patience, keep her happy and comfortable, and hopefully distract her.

Janet is 88: she has other health conditions that come with age. She has Pernicious Anaemia and Diabetes. This means giving her other medication along with her Aricept. Trying to give her pills is like dealing with a child: in fact, in behaviour and conversation that is exactly how she behaves with moods, tantrums and frustration commonplace. She cannot reason or express herself coherently any more. She is hardly eating and all awareness of social   etiquette has gone. She sometimes spits her food out, usually in to a bin, but not always. she was such a wonderful woman: Christian, caring, giving, loving and had very high standards in hygiene and social behaviour. Now she is confused and is no longer able to control her bodily functions. Being doubly incontinent means that costs have been incurred with bedding, mattress, even the carpet below the bed and extra washing killed off the washing machine. Despite all this a recent attempt to get an emergency grant from the department of work (lol) and pensions was refused as “There are more important cases to consider.” 

I have noticed my wife change over the years as the strain of caring takes its toll. She is up at 4:30 AM to wash and dress her mother before starting work at 7:00. She goes straight back to her mother’s at 3:30 after work to make her dinner, wash and change her and get her to bed. Driven by the love that she has for her mother she doesn’t take a break, and having seen more than one horrific documentary about the treatment meted out by carers, some of whom seem to be drawn to that line of work because it allows them to exercise their sadism against a helpless victim that can’t report it; not to mention the “helpers” who help themselves to their patients belongings. For such reasons my wife and her sister are reluctant to take help from outside. Every weekend, when I see my wife I see less sparkle in her eyes, she has no energy and she says that she is feeling like she doesn’t have a home because she is away so much. Her life is not her own, it is lived around the needs of another. Everything is on hold until the inevitable happens.

To lose someone to Alzheimer’s is a tragic loss indeed: you watch your loved one slowly disappear before they die. It is worse than death.

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