Guest blog by Joy Anderson, member of AWOC facebook group
Care and my own destiny was not something I thought about that much before the birth of AWOC although I had been acutely aware that not having children meant society and my family treated me differently. What I have learned from this group is that regardless of how we arrived at being childless, whether it was a life choice or an unfortunate set of circumstances, and regardless of sexual orientation, ethnicity or religion, we all have one thing in common that unites us and that is for many of us growing old without children or a partner can bring us face to face with our own vulnerability.
All this became apparent to me as I took on the role of primary carer for my mum who has been disabled since her mid 40s due to an unfortunate surgery where her sciatic nerve was partially removed leaving her with limited mobility. Whether this was negligence or not, the family could not bear to pursue it, but we have all been impacted upon by her disability and more so as she’s got older as her disability has greatly impacted on her general health.
4 years ago I decided to give up my business, my home, my friends, a relationship, my hobbies and my London life to move to a small town in the country to support her. She needed to stay in her bungalow as it was the most ideal living situation and I decided as the single, childless person in the family I was in reality the only one who was in a position to do so.
It was a difficult decision and the life I chose has not been an easy ride but one I will never regret because I feel I have given my mum the best life she could have had under the circumstances. We have had some stormy times and some amazing times. She started flying lessons this year through Aerobility who teach disabled people how to fly and this has been really exciting for both of us.
When I first moved in she didn’t like it and was pretty hostile at first. There was a lot of resistance and mum was in denial that she needed the support. She saw my presence as a threat to her freedom and it took a while for us to work out how to figure it out.
This is so often the case and a son or daughter is probably the only person who can quietly take control whilst letting the parent feel like they are still in control. I think one of the myths about care is it’s easy to go into denial if the person is sound of mind and can do all their personal care. The illusion is they can cope and don’t need help. Perhaps it can take a long time before the reality hits home that someone isn’t coping.
This is true of the person who needs care as well as the relatives. My mum can beat the computer at scrabble, she can read the Independent from front to back and she can still hold an intellectual conversation. If she was sitting in a chair talking to you, you wouldn’t realise she needed any care at all, and sadly, if she went into care she would probably die from lack of stimulation, claustrophobia and would ultimately lose the will to live. For someone who isn’t ready for a care home and yet cannot look after themselves, there seems to be little available for them and I think this is the gap that children invisibly fill in.
It’s complicated caring for your mum but I find it’s not one role; you have to wear many hats and take on many different kinds of responsibilities.Housekeeper, cook, cleaner, gardener, admin, liaise with doctors, nurses, physiotherapists, occupational therapists, social workers, lifts to hospitals, dentists, doctors etc. Admin, manage household bills, repairs, paperwork, call centres, support with social life, friend and confidant and last of all be a daughter.
These are but a few tasks I take on as well as the regular day to day care. Most of this is invisible but if I wasn’t doing this kind of support, I know my mum would not cope on her own at home.
Another problem, rarely acknowledged, is the virtual and digital world. Online banking, shopping and paying bills are getting increasingly more inaccessible. Due to the number of steps you have to take for each transaction, it’s just too complicated and this has disempowered many elderly people. In years gone by people were able to do these things themselves but this generation have been caught between 2 worlds and suddenly what they could manage easily has all changed. This is particularly the case for my mum, and although she did learn to use a computer, getting through security on the phone and online just creates confusion and frustration and she gets lost in the process.
What is equally shocking is there has been no provision made, no thought as to the impact of banks closing and how this will impact on the elderly. This is another area where people rely heavily on their children and grandchildren. Even the queen with a support network better than most has to rely on Harry to help her with her mobile phone!
Going into care is not a solution either. Recently my mum went away for 2 weeks respite while I had a walk-in bath installed. Due to no fault of the home, she only had one bath in 2 weeks. There were no staff available to take her for a shower, plus the showers were out of action. Had I not put pressure on the home to give her a bath, it wouldn’t have happened. She was still luckier than most, she had several visits and days out with family members which was more than some of the residents had had in years. My sister facilitated a TV for her in her bedroom and I managed to get the home to get her a chair to elevate her legs to prevent her ankles from getting swollen. None of this would have happened had we not pushed for it, so the people that don’t have children to do this are likely to get forgotten about. Most of the residents had dementia which made her feel desperately lonely and sad. It also brought it home to her that this is how it would be if I wasn’t living with her and it made her feel anxious and vulnerable.
It is little wonder that carers without children are now getting anxious about who will look after them then their time comes? One in four people are childless and many of them have already spent the best part of their midlife caring for a parent. Some of the comments I read on the AWOC thread recently were people saying they were considering voluntary euthanasia rather than go into care because the fear of having no one to fight their corner was too depressing. This is a line of thinking now that is becoming more popular which begs me to ask does this group of childless people not deserve better? If you don’t have children does that mean you don’t matter, and is there a time coming when we will we be asked what age we wish to terminate our lives because there aren’t the resources to care for us? It might sound like something from ‘Brave New World’, but it’s a dialogue people are already having.
This has filled me with sadness. Young people and elderly people need each other. We should not be segregating our communities but instead should be brainstorming and lobbying the government to start supporting integrated alternative communities where people can be intrinsic in planning their own old age in a dignified and creative way. Surely if we create our own ‘think tank’ and brainstorm with imagination and vision we should be able to create some exciting solutions which will work for a whole range of people regardless of whether they have children or not. I see that as the beginning process.
There are of course no guarantees that having children will bring support in old age. Families can become estranged or separated for many reasons and the AWOC umbrella includes these groups as well.
As President Barack Obama recently said during his speech at the Obama Foundation in Delhi, first you have to find your voice, then share your stories so your voice gets louder and then when you have a vision of what could be, lobby the government and create pressure groups to bring about political change.
Thanks to Kirsty Woodard the AWOC has brought all these childless people across the globe together, here we are finding our voices and now this process has already begun.