I care for someone with Alzheimer’s, but who cares for people like me?

Caring for someone with dementia is hugely demanding, even for trained professionals.
Caring for someone with dementia is hugely demanding, even for trained professionals.

I am a carer. I help look after my mum, who has early-onset Alzheimer’s disease. It is a difficult, demanding and often depressing job, and I only do it part time, filling in the gaps to ensure that my mum receives 24-hour care. Even this limited but significant share of my family’s responsibility has had a profound impact on my life.

Being a carer does not come naturally to me. My mum’s inability to perform theoretically simple tasks often frustrates me. Every time I find myself getting annoyed, or expressing my irritation, I feel enormously guilty. I know that none of this is her fault, but the bitterness rises in me every time I go home. Mother’s Day is particularly painful, as are birthdays, which come with a dollop of nostalgia for what she was. My mum was a wonderful woman who worked incredibly hard and would do anything for anyone. She was the sort of mum who would drive through the night to see you if you said you were upset. I try to follow her example in everything I do.

Reconciling this image of her with the confused, rambling woman I often see before me is extremely difficult. But while my family and I care for my mum, who cares for us? The answer, sadly, is nobody. In a country where everyone’s mental health appears to be constantly under attack, carers are vulnerable people, second only to those they look after, but their needs are repeatedly and wilfully ignored.

GPs are meant to keep a special eye on those whom they know to be carers, but in reality this doesn’t happen. Talking therapy is available at the other end of an incredibly long waiting list. In a survey by Carers UK, 87% of carers said their role had had a negative impact on their mental health. A separate report found that 55% of carers have suffered from depression as a consequence of their responsibilities. Primary carers, many of whom do not have the time to visit a doctor or speak out about what they are going through, essentially become invisible. Caring for someone with Alzheimer’s for a prolonged period of time is like being in prison for a crime you did not commit. Forums on the websites of charities such as the Alzheimer’s Society provide a glimpse of the neverending burden of looking after a person whose brain does not function as it should. The natural responses range from sadness to frustration, anger and resentment, both of the relative you are caring for and the outside world, where your struggles do not register.

Being a twentysomething with a parent who has early-onset Alzheimer’s regularly places a dark cloud over my head. I have often felt lonely, isolated, alienated and desperate, but I cannot begin to imagine what it is like to be a full-time carer. At the same time as you are trying to assist your loved one with getting dressed or using the toilet, making them food, helping with medication, reassuring and comforting them, you are grieving for a person who no longer exists. Many of the behaviours associated with Alzheimer’s are highly distressing; aggression, physical and verbal, is common, while the occasional moments of lucidity are perhaps the worst of all, when the individual with Alzheimer’s briefly realises what is happening to them.

Help is available, but at an enormous cost. If you have property and savings worth more than £23,250, you have to pay for your own care. If you do not, the council will provide carers, but with funds spread ever thinner, visits are becoming shorter and shorter, to the point that the value they initially provided is lost. At some point, every person with Alzheimer’s will need some form of social care, whether a brief visit from a professional to help with taking tablets or a prolonged stay in a residential home. This means that if you spent your life prudently saving, you are effectively being taxed for having Alzheimer’s. The government wouldn’t like you to refer to it in this way. Such a description sounds wantonly callous. That’s because it is.

Charities valiantly attempt to cover the abdication of responsibility by local governments but they are overstretched and underfunded. What carers require is practical assistance; respite homes available at short notice, where loved ones can stay to enable the person looking after them to have a good night’s sleep. Day centres for people with early-onset Alzheimer’s that stimulate them and let their carers take a well-earned break. Where these do exist, places are like gold dust. Currently, respite care takes weeks to organise and often sees people placed in homes rated inadequate by the Care Quality Commission, because the council cannot afford to pay for anything better, even though it is only footing a fraction of the bill. Caring for a family member with dementia is the right and just thing to do, and saves the UK economy more than £11bn a year. But many full-time carers are tired, demoralised and overwhelmed by the constant demands placed on them. It is said that a society will be judged on how it treats its weakest members. Right now, ours is failing them.

If you are a carer looking for advice, visit the Alzheimer’s Society’s Talking Point forum or Carers UK.

Originally published on The Huffington Post on March 23 2016.

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