How a co-ordinator worked to help a mother with a disabled child

How a co-ordinator worked to help a mother with a disabled child

25.01.2019 - 16:42

We were referred a family whose son was disabled.  The mother acted as sole carer and felt she was the only one responsible for his care.  His needs were complex and she cared for him 24/7, which was exhausting for her. But she regarded it as  her duty and didn’t want to burden anyone else, even her family, with the task of looking after her son.

As the Midlothian Family Support Co-ordinator I contacted mum and arranged the first Initial Visit to discuss what a volunteer could offer and how this could help mum.  Mum was initially hesitant about accepting support, she was very anxious at the thought of allowing a “stranger” into her home to spend time with her son, as she felt this was her own duty and responsibility. Mum said her own needs were not important and that she felt very guilty if she spent time doing things for herself, such as arts and crafts, dishes, cooking, relaxation sessions etc. I explained that she was important to the family and that taking care of her health and well being was vital so that she could care for the others.  Although she was reluctant, she said she would try it, but didn’t feel this would make a difference to her.

After some consideration I introduced a volunteer who I thought would be a good match for the family.  I took the volunteer to meet them and we all discussed the support mum would like from our service. Mum said that she was happy to try weekly visits, but that she was still a little unsure.

After a month of visits, I saw the family for a usual first month review to see if the support from their Volunteer was helpful and if the family felt it was working for them. And this is what she said:

When my health visitor referred me to Home Link to see how a volunteer could come and help me with my son at home I was very skeptical about it working out.

My son has long term condition and has complicated needs with regards to handling, feeding, medication and communication. As his full time carer, I convinced myself it was my job and my job alone, but this only resulted in me feeling isolated and incredibly tired. I felt anxious about allowing anyone to help with him, even my own family.

When our volunteer started we spent the first session chatting over a cup of coffee, I felt if I got to know them better I would feel less anxious.

As the weeks went on I consciously pushed myself to create a greater physical distance between my son and myself. I started to feel a little lighter after each session, buoyed by my son clearly enjoying our volunteer's company and the sky not caving in afterwards! I started to look forward to the next week. It was a big step to ask someone else to help with the tube feeding, which now feel I can do. Now I am planning the next step - to let someone else care for my son while I leave the house, which I haven’t done before but now feel is achievable in the near future.

Ultimately, I have come to realise that sharing my son's care not only benefits my physical and mental health but also provides a safety net for him. In the event of the unthinkable, I know that someone else could care for him. It has been a tough journey of accepting my son's lifelong disability and letting others in to share his care but slowly with the help of Home Link we are making changes together as a family (including the wider family circle) to safeguard our future.

I also met the family volunteer to discuss how they were feeling about how the visits were going and plan activities to do with the little boy.  I took the Volunteer to visit Midlothian Playbase, a toy library that we are a member of.  We are able to borrow books and toys for 6 weeks. The volunteer borrowed some unusually large books because they felt that A1 size books would perhaps be different for him and easily accessible. The little boy loved them and the Volunteer enjoys spending time with the boy sharing the books, and said "his wee face lights up when we read together".

This support has had a massive impact on the family after only a few weeks and transformed mums feeling about having to take sole responsibility.