Writer Christina Macdonald shares her experiences of caring for her mum, Hazel, who was diagnosed with vascular dementia in 2009.
Who are you?
Christina Macdonald – my mum Hazel Neal has vascular dementia and is in the late stages of the disease.
When was your mother diagnosed?
She was diagnosed in 2009. I took mum to the GP after noticing that she had become increasingly forgetful and vague. The clear sign that something was wrong came when she drove her car to the local shops (a five minute drive), bought her shopping, then walked back home, forgetting the car was parked outside the shop. The next day she rang me to say the car had been stolen. She had no recollection of leaving it behind.
She also began to repeat herself and ask the same questions. She would struggle to remember conversations that had only occurred five minutes earlier.
What happened after the diagnosis?
Mum was very reluctant to accept any help, either in terms of home care or wanting to accept that she had a problem. It was difficult to plan for her future without her acceptance of what was going on. Despite her protesting that she didn’t need help, I could tell that she was struggling to cope around the house and wasn’t eating properly (she became very thin and was living on a diet of tea, chocolate and cigarettes), so I arranged for her to have Meals On Wheels, a home cleaner and eventually found a local gardener and odd-job man to take on any tasks that needed doing. She continued to protest that she didn’t need any of this support but in my mind, I had become the parent and she was now the child. I knew what was best for her.
From a medical viewpoint, the GP prescribed Donepezil, which seemed to slow down the progression of the illness and I would say that, despite her awful memory, the condition seemed fairly stable for the first two years. She couldn’t remember much and was confused, but on the other hand there wasn’t much change in the first couple of years.
How did others react to your mum’s dementia diagnosis?
There wasn’t any one defining moment where we sat down as a family and explained to everyone what was going on. But mum lived in a small close-knit village, so for her protection and wellbeing, I did mention to the neighbours that she had been diagnosed and her memory wasn’t very good. They were all marvellous – I lived an hour away so it was very reassuring to me that they were on hand to help her out from time to time. On a few occasions she locked herself out (I made sure they had spare keys) and they would let her in and make sure she was safe. I owe them a huge debt.
What challenges have you faced during the dementia journey?
This could be a very long answer as there were so many and when mum lived alone the phone would ring constantly. I never knew what was going to happen next.
It ranged from simple things like mum ringing me to ask what time of day it was to how to turn the TV on, to neighbours ringing me to say she’d been found wandering in the street, confused, and unable to find her way home. I felt bad that I had to be the person who started to strip away her independence.
She started to do things like leaving her debit card in the shop after buying food (fortunately the local grocery store had honest staff who used to return the card to me) and it was clear to me that she couldn’t drive, as she would get lost. I took her debit card away and switched to giving her pocket money for food every week.
I also took her car keys away. She was furious about that and told me it was unfair and I agreed in a way – it was unfair. But it was also unsafe for her to drive and someone had to make the decision to stop her driving in order to keep her safe.
Neglecting personal hygiene
Sadly, as she got worse, it became impossible to overcome the seemingly never-ending range of challenges. She started to neglect her personal hygiene so I brought in private carers to assist her to get out of bed and get washed and dressed. This made her very angry and she would often refuse their help.
I also arranged for carers to check on her at night and make sure she was safe and the house was locked up but again, she resented them being there. I increased the amount of care she received, but the more care I threw at the situation, the more challenges would arise. I can only describe it as trying to put out a series of small fires. You put one out and another starts in a different part of the room. It was a constant battle as you were fire-fighting the entire time.
The final straw was when a neighbour called me to say mum had been found outside her house in December at 10pm with no coat on, holding a tea cup and seeming very confused. Mum now receives 24-hour care which is the only way to manage the situation.
Have any particular products helped?
When she had greater mental capacity I bought her a remote control for the TV that had only about six buttons on instead of 20! It literally had volume, channels and on and off switch.
I tried getting her a mobile phone that she could wear around her neck which had two numbers (mine and my husband’s) pre-programmed in, but she wouldn’t remember to wear it.
She did have a key safe outside her front door with a spare key which enabled carers to access the property.
What services have you found useful?
Age UK were very helpful and provided a home cleaner who was very supportive and seemed genuinely fond of mum. The cleaner would call me if she was worried about mum and I always felt relieved when I knew she would be going in to see her.
Meals On Wheels also helped a lot – mum gained weight which she needed to do when she started having regular meals. I had varying experiences of carers. There were good ones and bad ones.
Were there any signs or behaviour that, looking back, you now recognise as the early signs of dementia?
When my late father was alive mum, went through a fairly brief phase of doing odd things. One day he found the kettle in the fridge, but she’d denied doing it. On another occasion, she was convinced that she could hear a strange noise in the house which neither my father or I could hear. She became very angry that we couldn’t hear it and got very defensive. I think she probably had the illness about a year or two before it was officially diagnosed in 2009.
Has your experience of caring for someone with dementia changed your perceptions of it?
I didn’t have any preconceptions of what it would be like before my mum developed the disease. I have to say it’s one of the most debilitating illnesses I’ve ever come across and it’s also very cruel because it robs the person of their personality and identity. It’s been very hard to look at my mum and know that she’s not the same person. We can barely converse these days.
What do you know now that you wish you’d known earlier?
It’s a difficult question as it’s hard to plan for what is going to happen when someone has dementia. You know there is going to be a decline but you don’t know how slow or fast the decline will be or what lies ahead.
I wish that someone in the medical profession had taken the time to explain how much dementia can affect the person’s mood. Mum had terrible mood swings and would be angry, aggressive and on occasions, quite nasty. Unfortunately, because she’d always been fairly short-tempered and impatient as a person I put this down to her being unreasonable and didn’t always react well to her bad moods. Had I known that this was part of her dementia, I’m sure I would have been able to handle her aggression more calmly.
What lessons have you learnt?
1. Accept responsibility
When a person has dementia, there will come a time when you have to take over and make decisions for them. It’s not a question of ‘if that time comes’. It’s a question of ‘when’. Be prepared for that and accept it will happen. On that note, it’s worth getting Power of Attorney as soon as possible. Don’t leave it too late or you may struggle to get it (the person may not have capacity).
2. Plan ahead
If the person is living at home alone there will come a time when it’s no longer safe for them to be left alone for long periods of time. Start preparing for this. Look into options, whether it’s the person living with you, moving into a care home (in which case do your research on care homes now, rather than when the person already needs 24-hour care) and consider how to cope when the person gets worse.
3. Look after yourself
If you are the main carer, you can’t care for the person if you are unwell or very stressed. Take time for yourself – exercise is a great mood booster but any kind of a break will make a difference. Don’t feel guilty about having some time to yourself. It will make you a better carer.
Final thoughts on dementia…
Dementia is an unpredictable illness. It can throw many strange situations at you. Although I believe it’s important to plan for the future it’s also important to understand there will be occurrences that you couldn’t predict and may not always be able to do anything about.
Be prepared for mood swings. The person with dementia may cry or be angry. When the tears come, they can be very short-lived as the person is literally in the moment. A minute or two later, they may be demanding a cup of tea or laughing at something on the TV. Accept that rapidly-changing emotional states can be a part of dementia.
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