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Supporting a progressive condition

How Jacky is receiving ongoing support for her condition

Live-in support works well when a progressive condition necessitates a more permanent level of support. Jacky Smith was an energetic, fit and active police officer when, at 42 years, she was diagnosed with motor neurone disease (MND).

“Initially I had a foot splint and managed to get around quite well,” Jacky explained. “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 support package in place. I had a care agency come in to assist me with personal care and PEG feeding.”

As the disease progressed Jacky slowly lost the ability to walk and had weakness in her arms. At this time she was being very well supported by the local hospice and clinical nurse specialist who suggested Helping Hands and a full time live-in support worker.

“I was initially resistant to this suggestion as I felt I would lose my independence. The most important aspect to receiving full-time support is that I remain as independent as possible and am fully involved in decisions about my care. Although my mobility is slowing down my mind is as active as ever and social stimulation is important to me.”

Jacky, a customer who is living with motor neurone disease

“I was very resistant to having a live-in carer initially but without Nora my condition and quality of life would have deteriorated to nothing. Without sounding dramatic I owe my life to Nora.”

After an initial meeting with the Helping Hands senior nurse assessor, Jacky helped select the person who she thought would be able to support her best.

Nora settled in quickly and established a routine, and her infectious laugh soon warmed her to the very many friends who call in. She has been readily accepted into Jacky’s 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 everything – the condition itself, my deterioration, and the poor quality of life I had before Nora came here. Living with someone always presents its own challenges 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 spotlessly clean.”

Jacky says that live-in support has given her life purpose again. “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 a real friend – and events to look forward to such as holidays and days out.”

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