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Motor neurone disease: meet Jacky

Clinical nurses providing nurse-led care. Redefining home care for complex needs.

How live-in support is helping Jacky each day

Jacky with her previous carer, Norah

Jacky (right) with her first live-in carer, Nora

Jacky was diagnosed with motor neurone disease (MND) at 42 years old. An active police officer before her diagnosis, Jacky shared about how MND has affected her and how live-in care has made all the difference.

“I was an energetic, fit and active police officer, when at 42 years I was diagnosed with motor neurone disease (MND),” said Jacky. “I had started to trip over my foot, which resulted in two weeks in hospital and being assessed with various tests, including MRI, EMG and muscle biopsy. The result was MND.

“Initially I had a foot splint and managed to get around quite well, I even completed the police fitness test! However I started to lose a lot of weight so I had a PEG (feeding tube) fitted and in order to be released from hospital I had to have a care package in place. I had a care agency come in to assist me with personal care and PEG feeding.”

Moving from visiting care to live-in care

As the disease progressed, Jacky lost the ability to walk and had weakness in her arms. She said, “Handling belt transfers became an issue and a hoist was fitted. I had gone from two visits per day to four but was not drinking due to not being able to get to the bathroom unaided. I was also very unwell with PEG infections and suffered with nausea.

“At this time I was being very well supported by the local hospice and clinical nurse specialist, who suggested Helping Hands and a full-time live-in carer,” she explained. “I was initially resistant to this suggestion as I felt I would lose my independence. The most important aspect to receiving care is that I remain as independent as possible and am fully involved in decisions about my care as although my mobility is slowing down, my mind is as active as ever and social stimulation is important to me.

“I first met with Helping Hands when the registered nurse came out to visit me and do an assessment of my needs,” Jacky explained. “I was able to work with Helping Hands and be involved in choosing a carer that would be right for me. I was sent a profile of Nora who on paper fitted my expectations.”

Getting to know my live-in carer

Jacky shared about her first live-in carer, Nora. “Nora settled in quickly and established a routine,” she said. “Her infectious laugh soon warmed her to the very many friends that call in. This is evidenced with me always being asked to send their love onto Nora. She has been readily accepted into my extended family of friends.

“All my friends, without exception, have recognised that Nora has been good for me and given me my life back. I was quite depressed with the condition, the deteriation and the poor quality of life I had before Nora came here. I was very resistant to having a live in carer initially but without Nora my condition and quality of life would have deteriated to nothing. Without sounding dramatic, I owe my life to Nora.

“Nora has quickly adapted to the police sense of humour and is a real good sport (although she did draw a line at taking me out in the freezing cold to play snowballs!). Nora always gives me a choice as I am readily able to make decisions for myself. However, Nora encourages me to make sensible choices given my condition and state of health at that time. Entirely on Nora’s own initiative we have established a good feeding protocol to make sure I have sufficient good calories with my feed.

“I was very poorly in September, October and November, requiring three hospice stays and emergency admittance to Hospital. I had a PEG infection that was making me very sick. Nora recognised my failing health and quickly called a couple of my friends out in the middle of the night to comfort me. Nora coped with my incontinence, vomit, agitation and pain very well, ensuring I stayed clean and as comfortable as possible at all times.

“I said earlier I owe my life to Nora. She saw me through this tough time and I feel so confident in her abilities that if I get ill again or the MND takes it final stages I know Nora will support me, look after me and be there till the end. I trust her to do the right thing at the right time and this knowledge is of great comfort to me so much so I am not so afraid of dying.”

Shared interests and extra encouragement

“Nora has improved my quality of life. We share a Christian belief and she has attended a prayer meeting with me, accompanied me to birthday parties and an art exhibition.

“Nora has encouraged me to paint and made it possible by setting up my own bed studio. I couldn’t draw a straight line with a ruler with my right hand but with encouragement from Nora I am painting with my left hand and now have a collection of paintings. We also share a lot of interests such as growing our own vegetables, music, shopping reading and discussing what is going on in the world.”

“Living with someone always presents its own challenges,” Jacky said, “but we have a strong relationship to weather any storm. I would like to think it is a good working environment for Nora but that is down to her own commitment and enthusiasm to make it work also. Nora knows what is important to me and keeps the house and me spotless.

“Live-in care really has given me my life back and a purpose,” she added. “I was very depressed before Nora came, I had no interest in anything and was just existing day to day it was easier, warmer and safer just to stay in bed. Now I have events to look forward to such as holidays and days out.

“With regard to the care managers at Helping Hands, I feel that I can make contact with the care manager concerning any issues,” Jacky said. “I prefer to communicate by email and have found my emails are always answered promptly. The care managers frequently make contact with Nora ensuring she is happy too.

“Making the move to live-in care is a big step and not one to go into lightly. However all my concerns and fears were acknowledged by Helping Hands and my expectations and needs met as far as possible. Helping Hands is very professional in their approach to their business and I feel safe and secure with them looking after my care.”

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