When my mother was diagnosed with dementia, I had no idea what that meant or what it would mean as time went on. She lived on her own and made it clear that she wanted it to stay that way.
Once the diagnosis was made, I visited the specialist NHS psychiatrist with her a couple of times – but then we were on our own. There was no further follow-up.
I found out much later that the GP should have referred us for family support, but that didn't happen in our case, so I lived on tenterhooks, waiting for a crisis.
My brother lives abroad so the bulk of the responsibility of supporting my mother fell to me.
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Juggling life around caring
My mother lived 30 miles away from me. I had a job and three young children (six, nine and 12 at the time) and my own home to run.
We hired a carer (actually he was her cleaner and had no caring qualifications, but he was brilliant) to visit her daily for two hours, my brother ordered online shopping to be delivered to her while he was at her house. And I visited at least once a week and had three telephone calls with her each day. If she didn't answer the telephone I was terrified that something had happened to her.
She couldn't remember to put her emergency panic button on around her neck, nor would she have remembered how to use it if required.
I became exhausted driving up and down the A3 to visit her once or twice a week and the constant worry was a burden. As my brother lives abroad, all the on-the-ground practical stuff was left to me.
I was lucky to have a compassionate boss who was a family man himself and was sympathetic whenever I needed to deal with a crisis – of which there were a few.
My husband was also a great help. He is self-employed and works from home, so I was able to leave him to pick up the childcare arrangements (school runs, etc) most times I needed to rush to my mum's house.
Unfortunately there seemed to be no support from any of the public services for someone in my mum's situation, nor for me. I certainly was not made aware of any support for her or for me. To this day, I am not sure what would have happened to my mum if I'd lived further away.
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My mother and dementia
My father died in 2006 and my mother became lonely without him. Her mental health worsened.
Looking back, I remember often thinking that she was being difficult or belligerent as I had no idea that she had dementia. It was very confusing.
My mum obviously knew that something was wrong and she had ways of covering up her own confusion, batting away any queries from me or my brother very convincingly. I learned later that this is classic of the early stages of dementia. It must have been frightening for her – not understanding what was happening.
Her doctor had concerns about dementia and asked to run some tests, which took place at mum's house with me present. But once the diagnosis came that was the end of it.
A lack of support
What happens after that is that you apparently just have to wait until you hit crisis point.
My father's last years were very different. After he became ill with cancer, he had a lot of support from the NHS and other public health bodies. I had no idea what or who to ask regarding advice or help to support my mum. It was simply 'muddle along on your own'.
All I knew was that there would be tears at some point...
Over the next three years my mother's condition worsened. There is only one road with dementia, and that is downhill.
As I said, we extended the hours of the young man who worked for her in the house and we also tried getting in a private care agency to provide other support at weekends, but my mother was not comfortable with having strangers in her house.
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I was calling her several times a day. I couldn't concentrate on much either at home or at work, as I was constantly worrying about her.
One January evening I was waiting for some friends to turn up to my birthday dinner when I received a call from a local taxi company that she used. She had called them and asked them to take her to a hotel, any hotel – she couldn't bear being alone in the house one minute longer.
I asked him to drive her down to me where I gave her a hug, put her into bed with a hot water bottle and the next morning she was desperate to get back home. So I drove her there, a 60-mile round trip for me, leaving my children at home with my husband. Family life was very disjointed at this time. I couldn't plan anything... just in case.
My brother and I realised that we now needed to organise 24 hour live-in care for my mother. I was recommended a super agency who provided a specialist dementia care-worker.
She left after two weeks because my mother was too difficult to live with. My mum just did not understand who this person was in her house and was rude and difficult.
Another carer was booked. On her second day I went up to meet the new carer (my brother had been there the previous day) and drove back home, only to get a call from the carer telling me she had locked herself in her room as my mother had started screaming at her and had physically attacked her, drawing blood by scratching her hand.
My mother had dialled 999 to report her as an intruder and the police were on their way. I turned round and drove straight back, first having to make arrangements for my children. My eldest was now 15. I had to leave the other two with her. I felt sick with anxiety.
The police called an ambulance which took mum to A&E, with me following behind. At the hospital all the normal physical checks were taken and they pronounced mum completely fine and able to return home. Of course, by then my mum had calmed down and at a quick glance appeared chatty and normal. They wanted me to take her home. I refused and suggested to the young doctor that the responsibility for my mother rested with the NHS, as my mother was not safe at home on her own and no carer was safe living with her.
The crisis that I was waiting for was happening right now.
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Living in limbo
Eventually the duty psychiatrist was called and he assessed my mother and found her a room in a mental health unit several miles away.
The following three weeks were what I can only describe as a living hell. The hospital had no facilities or staff to do my mum's laundry, so I had to visit her 3-4 times a week and that visit was spent doing her washing.
Mum herself was bored and miserable and confused. Finding out 'what happens now'? was also a test for me.
Days stretched into weeks and I could see weeks stretching into months. With persistence I got her seen by a psychiatrist, who ruled that she could not go home and had to go into a specialist residential care.
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I had been doing my research and had found a lovely care home with a dementia wing, two miles from my home in Surrey. Someone was looking down on me the day I phoned them – they had a room! What luck. A frantic week of moving mum's possessions and some of her furniture into the care home, as well as getting her signed out of the hospital followed.
Finally she was in. Although I knew there was still the problem of settling in to go through, I do remember sleeping well for the first time in months that night. My mum was safe. She was out of danger. What a relief.
The six months leading up to this moment (and the following six months clearing and selling her home) were probably the most stressful of my life. I never want to go through anything like that again. Moving house is a doddle. Getting divorced is a breeze (I'm on husband number two). Losing your job is child's play.
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Losing my mother slowly
Alongside all the mental stress and the time-consuming nature of dealing with the 'problem', I was also losing my mum.
Dementia was – and continues – to erase her. I didn't have time to enjoy being mother and daughter with her. I was grieving for her constantly.
Even after my mum moved into her lovely care home, I was grieving for the loss of her for quite a few months, until I came to terms with what the process of dementia is and what it robs you of.
I have lost some of my mum, but I haven't lost all of her. She is still there. Her hand feels the same as it always did when I hold it. The cheek that I kiss is still the same soft cheek I always enjoyed being close to. She hugs me tight and I feel like her little girl...still.
I am grateful that I have got to this point with her and that we still have some time left to enjoy together. In fact, now that I don't have to worry if she has locked her doors, or paid her bills, or turned off her gas hob, or has eaten some food, when I do see her I can genuinely just enjoy being with her.
I try to visit mum once or twice a week, but I am still riddled with guilt that I should spend more time with her, as I know I don't have a huge amount of that left in the bank. She's 91 and could go tomorrow, or in another five years.
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Along with that I'm aware that my time as a hands-on mum is also diminishing. My eldest goes to university next year and I want to spend as much time as possible doing things together as a family. My youngest has just started senior school and needs support with her homework timetable.
Am I spending enough time with any of them: mum? husband? children? I constantly fret to myself. When I have my day off from work, should I spend it visiting my mum or should I get the house sorted so that I can go and watch my daughter in a netball match? I can't do it all, but I will certainly get my 'guilty' badge trying to.
To me, having a mum with dementia in residential care must be like having a special needs child at boarding school. That's the only thing I can think must be similar. Just as you wouldn't leave a child at a boarding school all term without any contact or concern, so you cannot leave your mum to fend for herself in a care home without any visits or calls.
As an example, when my mum arrived at the care home I labelled all her clothes, but was distressed one day early on to find her wearing another lady's bra.
I happened to be getting mum ready for bed and found her bra was cutting into her. I checked it. It wasn't my mother's. I had no idea what my mum's bra size was – who does? I had to run home and back again to get a measuring tape and went out the next day and bought her some new underwear. This may be a small thing but to me it was important.
I want everything as much as possible to be how mum would want it to be. I try to keep an eye on the small stuff, and there are many wonderful carers who look after my mum, who care just as much as I do about these things. They are a great support to me.
Care is a funny old word, though. I think anyone can provide care, but not many provide compassion. I am lucky that my mum is now somewhere where those looking after her are genuinely compassionate and empathetic. It would be good if there was also some compassion and support for us, the sandwich generation, who are stretched both ways. I haven't found it yet.
Read more experiences of sandwich generation carers on the Care Quality Commission website.
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