An Angus woman who gave up her job to care for her dying husband has spoken of the toll it is taking on her health.
Linda Lennon, 55, from Forfar, said there is a lack of support for the increasing numbers of people under 65 who are diagnosed with motor neurone disease (MND) and wish to remain at home.
She has been battling to get Andy, 61, a respite break which would allow her to rest and recover between periods of care at home.
Mrs Lennon hit out at what she described as the “diabolical situation” facing families that are “totally disregarded” and “simply left to get on with significant care duties”.
“In order for Andy to continue to stay at home and die at home as we both wish I have been requesting a respite placement from social work in Angus for a very long time,” she said.
“With no breaks, there are major effects on my health and wellbeing and consequently my ability to sustain care for Andy at home.”
According to the Motor Neurone Disease Association, 50% of sufferers, usually men in their 50s or 60s, die within 14 months of diagnosis and the remainder within five years.
The couple met in 1998 and were married in 2001 but electrician Andy’s 2013 diagnosis put an end to the dream of retiring together and moving to Asia to be closer to her two sons.
Andy, who has a son and two grandchildren, deteriorated very quickly firstly losing the use of his legs, then his arms, hands and fingers, the ability to swallow and eat and finally his speech.
Mrs Lennon was forced to retire from Dundee City Council and has been caring for Andy full-time for more than three years.
“There is an essential unmet need for high-quality respite care for advanced sufferers of MND and their families who are currently struggling to maintain care at home 24/7 without any break,” she said.
“This should be provided by social work departments and health services working together and using existing resources this is currently far from the case in our experience.”
The responsibility for provision of respite care for Andy lies with Angus Council’s social work department but Mrs Lennon says they have been passed from pillar to post in trying to get a respite spot.
An Angus Council spokesman said: “While we cannot discuss the detail of individual cases, we are trying to assist those concerned and want to find a solution that best suits their needs.”