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.

RAW publishes interviews regularly about a community member from Hemel Hempstead or the surrounding villages. To keep up to date with RAW’s interviews, click follow at the top of this page or like RAW’s Facebook page, highlighted at the side of the page.

Rebekah and Caroline – Living with dyspraxia

Rebekah had a traumatic birth. She was born with her umbilical cord wrapped around her neck and wasn’t breathing when she came out. After the initial panic though, there were no real concerns for her. The only sign that something might be wrong was that Rebekah never really babbled as a child, but Caroline thought it may be a genetic trait. “My aunt didn’t talk until she was five and she hasn’t stopped since!” It wasn’t until Rebekah went to nursery that her condition was recognised.

Rebekah has moderate learning difficulties and profound verbal dyspraxia, which means she finds it hard to make sentences and hard to remember words. She can’t sequence things, which also means she can’t grasp the concept of time, so any event she talks about is last week. There is no obvious pattern to her thought process, she will just talk about unconnected things. She also has slight physical dyspraxia, which means her brain knows what she must do to move her body, but the messages to the body parts gets muddled up.

“You always feel on edge, you have to say ‘this is Rebekah and she has special needs’”.

I ask Caroline about other people’s prejudices towards Rebekah and if this presents problems. She does find day to day encounters with strangers hard, because people do judge her and Rebekah. “You always feel on edge, you have to say ‘this is Rebekah and she has special needs’”. She remembers one time when Rebekah was younger and singing in the school concert. “She couldn’t say the words, she’s tone deaf and has one volume, which is loud. I was blubbing my heart out as I thought it was fantastic and I could hear other parents saying, ‘what is wrong with that child?’. You get that all the time.” She finds solace with other parents who have children with similar needs, and the various disability sports groups that Rebekah is involved with offer that informal support network. “It’s like therapy; we all chat together. You don’t feel like you have to justify anything at all”.

Caroline, and her husband Matthew, have made a conscious effort to treat Rebekah and her older brother the same as much as they can. They are disciplined the same and participate in family activities together; the family go skiing every year and run the 5km Park Run every Saturday. There are, of course, some ways they are unable to be treated the same. Rebekah wants her own house key and although her brother at age 12 could be responsible in the house by himself, Rebekah is not able as she wouldn’t be able to react to an emergency. “There could be a fire (on the stove) and she would just sit there and think it’s getting a bit warm, but not know what to do”.

The Special Olympics is a multi-sports event for athletes of all ages with intellectual disabilities.

For a girl of 12 though, Rebekah has already achieved so much. She competed in the Special Olympics in Sheffield in the Summer and was one of the youngest team members from the Eastern Region. The Special Olympics is a multi-sports event for athletes of all ages with intellectual disabilities. Rebekah entered three swimming races and won a bronze medal in the backstroke. I ask her how it felt to stand on the podium. “Happy. Sad”. Happy for the obvious reasons but sad because she is very competitive and wanted to win the gold.

Another benefit of training with the Special Olympics team, which is based in St. Albans, is that the team have a good social life. They go to concerts and participate in different activities, so as Rebekah gets older she can hang out with others who have intellectual disabilities like her. “Nick,” interrupts Rebekah. Caroline sheds some light, “She met him and had a bit of a holiday romance (at the Special Olympics)…she talks about Nick a lot”.

Caroline has recently started working at the school and has now become use to the normality of sheep walking through the corridor.

Rebekah now attends a Special Needs school, which has considerable grounds and is resident to numerous animals. Rebekah tells me about all the animals; rabbits, a snake, insects, a chameleon, donkeys and sheep. Her favourite animal is the red labrador, Maple. Caroline has recently started working at the school and has now become use to the normality of sheep walking through the corridor, a parrot perched on the shoulder of one of the staff members as he goes about his daily life at the school and a school nativity play with real animals. “The children don’t even bat an eyelid, no-one does,” laughs Caroline.

In some ways Rebekah is just like any other 12 year old. She argues with her older brother over incidental things, winds her parents up playing loud music (its Bars and Melody at the moment, which she plays “24/7” according to Caroline), participates in sporting activities and falls in love on holiday. But Rebekah’s journey to adulthood and independent living is full of a lot more hurdles and anxieties for both her and her family than the average teenager and their family would ever face. However Caroline seems to face these anxieties in a very practical way, and as she says, “you do have to have a sense of humour if you’ve got a special needs child”.

RAW publishes interviews regularly about a community member from Hemel Hempstead or the surrounding villages. To keep up to date with RAW’s interviews, click follow at the top of this page or like RAW’s Facebook page, highlighted at the side of the page.