Advice for Friends & Family - IMNDA %

Advice for Friends & Family

While feelings of anger, disbelief and anxiety are normal for someone diagnosed with MND, they are equally normal reactions for those closest to them. Family and friends may feel guilty because they have reacted negatively or because someone they love and care about has been diagnosed instead of them. At the same time, they are trying to offer as much support and understanding as they can. 

It may be that the person with MND is rejecting any attempt at support – their anger may be directed at family and friends. It may feel as though any help that is being offered is simply not enough. Equally, they may feel some level of resentment that their lives and expectations have changed also. 

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It is important that friends, family and carergivers: 

  • Accept their own reaction as normal and that they too need to find a source of support and help, whether from professionals or friends 
  • Try not to over-react to any anger or frustration that may seem directed at them 
  • Know that any negative reactions from someone diagnosed with MND are usually temporary. Though there may be periods in the months and years ahead when these negative feelings may overwhelm them again, these are normal, natural and understandable and usually transient.  

Everything changes when you are diagnosed with MND. Your family may be affected in a number of ways. For example younger members may be required to take on greater personal responsibility such as helping out with chores in the household or adult members may be responsible for the majority of the care for their partner.  It is important to discuss these changes and how the family roles may change. Changing family roles and taking on greater responsibilities can be challenging for family members.

It is known that as well as being a very distressing time for people with MND, family members can experience a substantial feeling of burden by taking on a caregiving role. It will be important to explore within your family what roles each family member would be willing to take on and recognise that this can change over time. There may be times when it would be better for some roles to be taken on by someone outside the immediate family for a period of time for example by a carer. It will be necessary for each member of the family to take the time to recognise their own personal limitations.  Each member of the family in a caring role will also need to provide care for themselves in order to avoid feelings of being overwhelmed, emotional, or physical exhaustion. Some suggestions on activities that can support self-care for family caregivers include exercising, eating healthily, getting enough sleep, making time for yourself, spending time with your friends and looking after your spiritual needs.

Sharing your experiences of your changing roles within the family can bring you a greater understanding and provide you with the support you will need as you go through the many changes and stages of living with MND.