Caring for motor neurone disease

Mary’s experience caring for motor neurone disease

Meet Mary, a dedicated Live-in Carer who has been supporting her customer, Jacky, to live in her own house for the past four years. Jacky has Motor Neurone Disease, a progressive condition that affects her brain, spinal cord, and motor function.

Are you considering making a real difference and becoming a Helping Hands Carer? Care work can be challenging and rewarding in equal measure. Supporting a customer in their own home is hard work, but is also a vocation guaranteed to provide new experiences – no two days are ever the same. If you’re considering taking the next step and applying through our jobs page, you may want to learn what other Carers have thought about their time with their customers.

For Mary, the decision to become a private carer with Helping Hands felt natural: “I became a Carer because of my compassion and desire to help others who are ill, disabled, or just in need of some companionship. Helping Hands were advertising in the press and I applied. I learnt that Helping Hands were a family company that not only cared for their customers, but supported their employees, too. Our manager has been excellent – always supporting me and Jacky, and recognising achievements.” Mary’s positive experience continues: “I’ve been with Helping Hands for twelve years now”.

Although Mary hadn’t cared for anyone with MND before, she found that with her Helping Hands training, Jacky’s detailed support plan, and close management from their Local Care Service Manager, she easily overcame any potential challenges in caring for Jacky. “I’ve learnt such a lot about Jacky’s individual needs,” shares Mary. “I’ve developed good listening and observational skills that really help me to be alert for specific emergencies like tongue spasms and choking.”

Their relationship is one based on mutual trust, enablement, and most importantly, friendship. Matched by Helping Hands’ dedicated care team, Mary and Jacky clicked from the very beginning, and quickly became inseparable.

“We have an honest, relaxed, and most importantly, professional and caring relationship where there is mutual respect and understanding. We get on well – for Jacky’s birthday, we enjoyed a lovely party for all her friends that support her too.”
Living with Jacky means that Mary is away from her own loved ones, but she makes sure they never lose touch. “I am away from home in Zambia and my daughters and grandchildren in London for long periods of time, but I ensure I make daily contact on my breaks to keep up-to-date with everyone’s news,” says Mary. “In between placements with Jacky, I enjoy long breaks for recuperation and quality time with my family – as a Carer, taking time for yourself is really important. And Jacky is wonderful: she has taught me to email, search the web and use Skype, so I can talk to my family.”

Mary, who is now an old hand at providing the highest standard of MND care, shares some advice for those new to the clinical aspects of homecare:

“It all sounds a bit scary, but you can be confident as you get appropriate training from the district nurses, and you’re constantly learning so you will find it easier to adapt to new challenges. But I would say that the most important thing to remember is to make sure you get the basics right, then everything else will run a lot smoother: maintaining good hygiene and ensuring that PEGs and catheters are infection-free are fundamentals. I’m also very mindful of medication and always check and re-check before administration. It will really help you if you do your research and have a good knowledge of the illness and likely scenarios in terms of progression, too. Communicate with patience. And most of all, remain calm and in control, accepting support from family and friends.”

If you, like Mary, are ready to get stuck in to a fulfilling role that offers you plenty of challenges, new experiences, and the opportunity to make a friend for life, apply directly to us today online.