MS is overwhelming and unpredictable, not only for the person who has it, but also for those caring for them. Often, the focus is on the person with MS and the person caring for them can be forgotten or ignored. Carers can also experience the fear and worry about long term complications or the possibility of a future relapse. The physical, cognitive, emotional and financial effects wrought by this illness also has an impact on the person closest to them who are usually their carers.
According to recent research on family carers in Ireland, 68% feel their health has suffered as a result of their caregiving work, 48% have been diagnosed with mental ill-health and from 2009 to 2019 there was a 70% increase in the number of carers diagnosed with depression.* This research was completed before the onset of Covid-19.
Caregiving can be stressful but over the last year it has been even more so with the worldwide pandemic. Carers may have worried about catching the virus and giving it the person they care for. They may have felt even more isolated and stressed due to lack of support from other family members or friends due to social restrictions and so many options for socialising were closed. Things like meeting for a weekly coffee with a friend or being able to exercise by swimming a few laps of a pool have not been possible. These moments of respite are crucial in being able to maintain mental and physical health and avoiding burnout. We all need time to ourselves to recharge our batteries.
Currently the MS Care Centre in Bushy Park is only open for 40 weeks per year as a result in decreases in both statutory and fundraised income over the last number of years. This facility is so vital to help not only the person with MS but also in providing respite for their carer, who also need a break. This Centre needs to be open at least 50 weeks per year to meet the increased demand.
A recent webinar from MS Ireland on ‘How carers can maintain their mental health’ is available online under the Progressive MS Webinar series. This is fundamental, previous research points to the negative impacts of mental ill health on carers.
Thankfully, with the rollout of the vaccination programme and the easing of restrictions, the days ahead are looking bit brighter.
This year the European MS Platform Conference from June 9-11th is dedicated to MS Care in a Changing World and registration is free for people with MS and carers (www.emspconference.org)