Kay – Living with her mum’s dementia

When Kay made the decision to become a full time carer for her mum she had two concerns, “I was concerned about money and I was concerned whether I could do it without shouting at her”. But actually neither of these things have been the issue. Kay finds the hardest thing to deal with when looking after her mum, is not knowing what simple aspect of daily life her mum has forgotten how to do. “I don’t know if she’s forgotten how to wash up. I don’t know if she’s forgotten to put her knickers on”. It was just before Christmas when Kay realised that her mum had forgotten what the dishwasher was for. “She thought it was just a big cupboard. When my brother came around and put all his dirty dishes in (the dishwasher), she was taking them out, washing them and then cleaning the ‘cupboard’”.

Kay’s mum has Vascular Dementia, which is a condition where blood vessels in the brain thin, causing bleeding. Which aspect of the brain stops working depends on where these bleeds are. “There is no natural progression, so my mum has particular problems with her speech, but that’s just where it is at the moment.” Kay says it’s not like other forms of dementia where you can see the person deteriorating as the disease gets hold. “The prognosis is that she will either die of a heart attack or a massive stroke. It’s a bit of a ticking time bomb”.

“It’s so easy to take someone’s independence away from them.”

When Kay’s mum was diagnosed the doctor told her she wouldn’t be able to drive anymore, the first step down a slippery slope to losing her independence. Her mum could still walk to the shop to buy a few groceries, but if she needed to buy some heavier items or go further afield, she needed someone to take her. “It’s so easy to take someone’s independence away from them,” says Kay. She didn’t want her mum to miss out on going out and having the interaction she enjoys, “you’re crushing their independence even more and narrowing their horizons,” so she takes her mum out most days, whether it is shopping, to the garden centre or out to a cafe.

Kay finds it’s a thin line between realising there are some things her mum is unable to do and taking over every aspect of her mum’s life. She gives an example of her mum’s tablets. Her mum takes four tablets a day, which are in a box labelled for each day. Kay found out her mum was forgetting what day it was. She would think it was a Friday and thought she had forgotten to take Wednesday’s and Thursday’s tablets so would throw them away. In fact is was a Wednesday and she had just thrown two days of tablets away. Kay still wanted her mum to have the responsibility of taking her own tablets, but she needed to make sure her mum was actually taking them correctly. She found if she visited her mum every morning and gave her the box of tablets just for that day, her mum would then be quite capable of taking all her tablets throughout the day.

Kay struggles with balancing her own family life with her mum’s needs.

I think internally Kay struggles with balancing her own family life with her mum’s needs. Kay tries to keep Sunday as a day just for her, her husband and her 11 year old daughter. “I am quite precious about our Sundays now…we do try and do something with just the three of us.” Holidays have to be carefully planned so her mum can be looked after. Someone needs to be around in the morning to give her mum the right tablets for the day and then either at night or at lunch to give her a decent meal. Her mum is then able to make herself a cheese sandwich for the other meal. Kay, her husband and her daughter plan to go away over the Easter holidays for six days, but it seems the real challenge is when they want to go on a longer summer holiday. “We’re due to go on a holiday in the summer for 2 1/2 weeks and I don’t really know what’s going to happen,” says Kay as she trails off. It is something that is visibly playing on her mind.

I ask Kay if her mum has gone through any personality change, as some people with dementia do experience behavioural changes. This hasn’t happened and Kay paints a very lovely picture of her mum when she says, “she’s always been kind and placid and thoughtful and understanding.” Listening to Kay’s story I feel these are traits that her mum has passed on to her.

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