Parents and carers need more help

There is a dark side to caring that’s often unseen and rarely spoken about. To be honest, society would probably prefer not to know what happens behind closed doors for carers and parents. As carers how often do we hear comments like, “I don’t know how you do it”, “special people are given special children” or “you are amazing, I couldn’t do what you do”. Carers are held up as superhumans, while the truth is far from that. While doing our best caring, loving and advocating for the person, or in some cases, people we care for, there is an enormous toll behind the scenes.

Carers – the forgotten people

Carers are often forgotten as a person. Sometimes careers are lost, relationships break down and friendships become difficult to maintain. And of course, there is the carer guilt that I’ve written about previously. While attempting to be everything to everyone I certainly find I often focus on what I haven’t managed to do rather than congratulate myself on what I have achieved. Carers are often highly critical because they love and care so much about their loved one and yet feel inadequate. Parents and carers need more support, and someone needs to step up and provide it. Ultimately there is going to be a far greater cost to our society if something doesn’t change.

In Australia, there is an annual Carer’s Week celebration. A week when the community recognizes the role of carers. There are usually community events held including morning teas and sometimes a pamper session. The sentiment is lovely, but it doesn’t really do anything to raise the topic of the toll carers often experience.

I recently brought this up in a Facebook group I run for parents and carers. The catalyst for the discussion was the outcome of Braeden’s NDIS review and the rigid approach to the number of respite days we can receive. While I understand the NDIS is designed to support an individual with a disability, I am constantly disappointed with the lack of regard for parents and carer’s wellbeing. We provided an impact statement which included lots of personal information about the effect we experience due to Braeden’s nocturnal shenanigans, and we supplied sleep diaries from his respite house to prove that we weren’t making up the amount of time Braeden spends awake at night. My doctor provided supporting evidence as to the amount of caring I provide to both Braeden and my parents and added quite a bit of detail which to me seemed evidence that we needed more support. We expressed our desire to continue to work and maintain a career but again, that was not taken into account.

I always feel fortunate that so many of our Have Wheelchair Will Travel community feel comfortable to share their joys and struggles with me. It’s assisted me in learning more about disability and caring in a broader way and helps me advocate. I find it sad to hear that many in our community have given up their careers because it was impossible to balance caring for their loved ones and their job. This impacted their financial stability as well as their mental health and sense of worth. This of course adds to a feeling of isolation for some. Relationship breakdowns and lack of social life were also highlighted. Many felt that the process of applying for the funding was humiliating and intrusive as the process needs us to lay our lives bare. And for me at least, when I do so and I’m not successful in gaining the additional help, it makes me feel worthless. I feel that my health, my needs and my desire to have a lifestyle around my caring is not valid. As one mother pointed out about her adult child with a disability, it’s not usual for a parent to be unable to go out and do anything, even if that’s a medical appointment for herself, without someone to support her loved one.

Another of our parents pointed out that she never gets to take a holiday. Of course she is able to take a holiday with her loved one but as many of you that are caring know, that is just moving the caring role to another location. Being away from a tailor-made accessible environment at home often involves added challenges . The standard 28 days respite provided spread out over a year does not consider a carer or parent may need to take a holiday. We’ve always had our holidays as a family, but I must admit, as we’ve grown older I’ve been conscious that for Hubby in particular, it is a break from his paid work, but it doesn’t give him an actual rest, as our sleep is still disturbed and Braeden’s care needs are the same. Last year when we travelled to Europe with Amelia it was our first holiday without Braeden. The decision was made to support Amelia by travelling with her on her big trip and we knew that for such a short time it wouldn’t work for Braeden. It was a real holiday for both Hubby and I but it also used up a big chunk of funding, meaning we’d have to go months without respite and any sleep to have that holiday. We all need a break from our day-to-day routine to rejuvenate us. I’m always a better person and carer after I’ve had time out.

We also know that the caring role is made easier with the assistance of others. Over the years Amelia has stepped up incredibly, helping with both Braeden and my parents. At times she has turned down work so she could be at home to make life easier. Of her own accord she often tailors outings with friends to a timing she knows will mean she is at home to assist me. While I’ve appreciated it, and at times I’ve had to ask her to do it, that’s not her role as a sibling. I’m also dependent on Hubby to often step up to help so I am able to take up work opportunities. My cousin has also been instrumental in filling my shoes so I am able to travel and continue on this travel writing and blogging path. It’s something that fulfils me and makes me feel like I’m a whole person. I can only imagine the mental health implications for some of our community members that have given up careers and don’t have the same support.

In the private carer’s Facebook group that I run I found our members to be incredibly honest and raw in sharing their inner feelings about caring. What I took away from just about every single comment was that they take on the role of caring with love and a desire to provide a good life for their loved one. Their comments are full of love, but there are big red flags that many people are suffering from severe burn out and a resounding feeling of lack of support.

These are just a few of their thoughts (shared anonymously and with permission) on the effects of caring without the support they need.

Missed work opportunities.

Careers are lost or don’t progress because many carers need to give up work or cut their hours down to part time due to not only caring they do but also the incredible amount of administration and organisation for their loved one. Support workers can be unreliable. Even when families secure good support workers, we recognise that they are human too and have sick days and injuries. We currently have our four day a week support worker off with a ruptured Achilles tendon. We are fortunate that our other support worker was able to step in and take those shifts.

Physical demands

The physical demands of caring for someone with a disability often results in repetitive strain and other injuries. Carers need a break to give their bodies time to rest.

One of our community members mentioned how they have no ability to sleep in, even with carers assisting, because they have staff in the house so early each day.

Friendship & relationship breakdown

Friendships are lost because its hard to maintain them when a full time carer is so time poor. Other barriers include lack of physical access to friend’s houses, the need to assist your loved one in a social setting leaves carers/parents often isolated from the conversations when they do make the effort to go out. A lack of inclusion of the person with a disability in a social setting leaves parents and carers feeling isolated even when they do catch up with friends. Spontaneous plans are impossible when a support worker needs to be engaged before being able to go out.

Couples often struggle to maintain a good relationship as they are so immersed in caring they don’t have time to take care of their marriage/partnership.

Lifestyles and friendships have been lost when there has been the need to move to be closer to medical care. This is especially true for families who move from rural areas to the city and have to establish themselves again.

Families surrounded by friends who are at retirement age are conscious that caring means retirement will not be the carefree lifestyle that others look forward to.

The sandwich generation

Many of our community care for adult children or partners with a disability and simultaneously juggle caring for aging parents. This means that not only are they dealing with the NDIS system but also the aged care system. I also fall into this bracket and the administration involved is onerous. One member of our group has shared that their family home was lost to the bank as there was an inability to juggle working, caring for an elderly parent with considerable needs, as well as an adult child with a significant disability.

I’m known for my positive can-do posts, but I also think that to bring about positive change we sometimes need to highlight the gaps in the system and talk about the tough stuff. It’s been hard to write this one, and it was even harder to hear some of the heart wrenching comments from our HWWT community. We need to do better as a society and see the incredible people who are in caring roles. If the people with a disability and elderly people we look after were placed into care, instead of staying in a loving environment at home, the cost to the government would be far greater. If we continue to ignore the need to support our carers, there’s going to be other costs accumulated, including visits to psychologists for mental health and medical costs for physiotherapy and other surgeries due to the physical demands.

With the cost cutting of the NDIA (Australian disability insurance scheme) and the government looking for ways to reduce our overall debt, I can’t see any immediate solution. I understand there is not an endless pot of money, but I also want a solution to ensure the human cost is not more than we can bear as a society. If you are a family member, friend or colleague of a person caring for someone who lives with a disability, please assist by stepping up. See the person. They are not superhuman, they need you.

Here’s some ideas on how to be a good friend to someone who is in a caring role.