Caring for Mum: a touching Alzheimer’s story
As September marks World Alzheimer’s Awareness Month, we wanted to show our support for the millions of family members across the UK who are caring for those living with Alzheimer's Disease by providing a true and honest overview of what daily life can be like.
As well as releasing a Carer’s Guide to Alzheimer’s Disease, we took the time to speak with Val – a lovely lady who ended up caring for her mother during the last years of her life after she was diagnosed with Alzheimer’s. Although Val was supported by her brother, Vaughn, and her daughter, Hannah, she received no external help when caring for her mother and she wanted to share her story so that others who find themselves in a similar situation may learn from her experience.
How was your mum first diagnosed with Alzheimer’s?
Mum’s memory condition was picked up by her own doctor in about 2009, during a routine appointment. She was sent to a dementia clinic at the local hospital to see a specialist for an assessment. Once diagnosed with Alzheimer’s she was prescribed Aricept tablets and then had appointments for a review every 6/12 months to assess changes in her condition.
Did you learn to communicate differently with your mum when you were caring for her?
We just treated mum as normal - especially in the beginning, as she didn’t think there was anything wrong with her memory. When she did get a little confused over her tablets and other things, we used a shorthand notebook as a daily calendar to help her keep track.
Every morning we wrote down what tablets we had given her, and also noted that she’d had a shower and breakfast. If there was anything else relevant such as a hair appointment, doctor’s appointment or someone was coming to visit, e.g “Val and Hannah here at 2.30pm”, that was also written down.
Additionally, we also made a note of what she was supposed to make for her evening meal and whether my brother, Vaughan, was joining her for dinner. Everything was written down in order of time so she could keep checking if she got muddled throughout the day.
Did you have any external help when caring for your mum?
We didn’t get any help at all, although we never thought to ask for any (as we didn’t have time to find out). Another issue was that mum wouldn’t have people in the house, such as carers or nurses, who she didn’t know or recognise.
After a fall at home, mum fractured her left shoulder in two places and was in hospital for two weeks. When she came home she had to have carers for two weeks to help her wash and dress herself. However, she would often get up early, shower and dress herself before the carers arrived to help her and even took her sling off after just a couple of days back at home.
Luckily, after six weeks she went for physio and the therapist who assessed her said she didn’t require any physio at the hospital. We were given a sheet of exercises to do at home to help strengthen the muscles in mum’s arm, so I didn’t feel the need to have external help when caring for Mum.
Did you use any techniques to help understand or deal with difficult situations?
Initially, mum had problems with urine infections which affected her Alzheimer’s and changed her attitude for the worse, although at first we didn’t know or realise this was the cause of her worsening symptoms and aggressive behaviour. Once we realised that an infection could trigger worse symptoms we were able to work with her doctor to give her antibiotics as early as possible.
On the days when her behaviour altered, we were also able to work with Community Support Officers. For example; in the later stages of her condition, mum would ring the police and tell them I had stolen something which belonged to her. After this happened a couple of times, we found that the police referred us to a community officer who would ring us before going out to see her. This meant we were better equipped to deal with certain situations and it made caring for her a little easier.
Did you use any products to help deal with your mum’s condition? I.e. living aids for the physical challenges of dementia, memory aids etc.
At the time, we didn’t really understand what these were as there wasn’t much support available and we didn’t know about any specific products to help mum live more independently. Even when doctors visited mum to assess her, we weren’t advised on what we could do to help ease the situation.
It wasn’t until we were facing a crisis that we were introduced to the Rapid Response In Crisis (RRICS) team - a team of wonderful people who come out asap when a family member has worsening dementia symptoms. They were a god send to us and helped us to cope as a family.
Information on the availability of benefits, help and living aids isn’t easily accessible and at the time we were caring for Mum we didn’t really think about it, we just got on and dealt with it as best we could as a family.
Did you have any external support for yourself when you were caring for your mum? (ie. respite care)
As I mentioned before, not only would mum not accept help in the home from carers or nurses, we were never advised on what other options were available. Luckily, as a family we managed to look after mum, with my brother Vaughn taking on caring duties in the mornings and evenings, me caring for mum during the day around part time work and my daughter, Hannah, caring for her grandma at the weekends. When it came to taking holidays, we also had other family members who could help out.
Do you have any advice for family or friends who are caring for people with an Alzheimer’s or dementia diagnosis?
It’s important during the early stages of diagnosis to ensure you and your family are able to deal with finances for when things deteriorate.
Have records and statements, not just for family but for the person diagnosed with Alzheimer’s. For example, when the doctor said mum was no longer able to drive, we had a letter from the doctor stating so. This made it easier to explain when we wouldn’t let her drive her car.
Lasting Power of Attorney (L.P.A’s) and wills must be in place for when things start to deteriorate as it will make life easier. Mum kept the bank books etc and when bills had to be paid we wrote out cheques to show her what had been done. She wasn’t capable of making the financial decisions herself anymore, but as a family we were and her banks and other financial institutions were aware of this.
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