Once my mother had a firm diagnosis of vascular dementia, my sister and I decided it was time to tell her remaining friends and family. Of course the first reaction we generally received was ‘Does she know you?’. To be honest I didn’t know much about the various types of dementia so I suppose it is only to be expected that other people don’t really understand it either. There was also the ‘coincidence’ of meeting other people who were suffering, or caring for sufferers.
Obviously the diagnosis has not changed anything; I suspected dementia even when Mum was just suffering from Mild Cognitive Impairment. Like a hovercraft daughter I am ever vigilant and looking out for changes and risks, and risk is definitely the most important factor. She lives alone in a state that I refer to as ‘dependantly independent’, relying on visits from my sister and me, seeing her carers twice a day, and spending the greater part of her days alone.
We have talked about installing a Granny Cam as we often wonder what goes on in her flat when nobody is there. Examples are the huge amount of bread that seems to disappear between restocking the freezer. She is not particularly interested in food and usually opts for the quick fix of bread and butter. Even when her carers offer her something to eat she responds that she is not hungry, so they just make her another sandwich. She doesn’t eat her crusts, not because she can’t but probably because it is easier not to. Sometimes I make her a light dish of bacon and eggs, baked beans on toast, or suchlike but she rarely manages to finish the smallest portion. Everything is usually washed down with cups of artificially sweetened black coffee, a throw back to the days when she used to diet, or glasses of warm fizzy drinks. Nothing is refrigerated. If she is offered a choice of what to eat, she always leaves it up to the person preparing the food. She probably now weighs about 6st and is somewhere between a size 6 and a size 8.
Her time is spent sitting in her armchair and popping back to bed for another sleep. She often wonders why she feels so tired, to which I reply that she is not getting proper nourishment and has no stimulation. She has been out of the flat twice so far this year and it is now the middle of May. Since breaking her hip fourteen months ago she has relied on a Zimmer frame for moving around her home and reluctantly uses her wheelchair for visits to the great outdoors. Recently my sister and I have been encouraging her to play cards as it passes the time and keeps her brain active, although there are often occasions when she seems to forget the rules.
There are phases when she seems to fall frequently and the Paramedics are summoned to get her back on to her feet, but she always refuses to go to hospital to be checked over. She still smokes heavily and probably doesn’t even realise that she has just finished one cigarette before starting on the next one. She doesn’t seem to inhale any longer and just puffs away. Another worry is that she often fails to extinguish her matches. The arthritis in her wrists presents problems when it comes to using a lighter and also when it comes to waving out the matches, which are frequently tossed into an ashtray when still alight, or worse still thrown into the waste bin. She burned one waste basket this way and chucked a lighted match into the bin in front of me recently. My reactions were fast when I saw a flare of orange, but she appeared to be completely nonplussed. Her clothes, sheets and rug are also punctuated with burn holes. She has left food under the grill (luckily an electric one) and gone back to bed. One of her carers found her recently, fast asleep in bed in a smoke-filled apartment. The only upshot of this is that I have organised a safety check from a local fireman: practically every woman’s fantasy, and a change from the usual Paramedic in green uniform.
Because Mum is so tired she can’t be bothered to keep in touch with friends and family. She ignores the phone when it rings, doesn’t check her messages, and never phones anybody. This is all exacerbated by her failing hearing, which she refuses to correct by wearing her hearing aids. People think she is annoyed with them, but the truth is that she can’t be bothered to talk to anybody, and indeed has nothing to talk about as she goes nowhere and sees nobody.
The most recent and upsetting change is to her behaviour. She has begun to get bitchy and often picks on me, criticising my clothes, my shoes, my tights or anything else. There are good days when everything is fine, but then there are the occasions when we revert back to the old days of little daughter trying to please Mummy and not managing to get it right. A friend told me that, before her mother’s dementia was diagnosed, she picked arguments with family members. I just try to remain my old placid self, but it is upsetting when you try your best and are just rewarded with snarky remarks.
It’s all a learning curve and we just have to adapt and adjust as we go along, finding our own coping and helping mechanisms along the way.