Becoming the carer
At the time of your relative’s SCI, you may initially feel that it is your duty to be the carer and you may not want anyone else to look after them. You may have financial concerns about having a paid PA/carer.
However, if you assume the role of the carer, your role as a partner or parent can become confused and it is possible that the dynamics in your relationship will change and cause stress and friction. This will be the same for both adults and children who try and become carers for their partner or parent.
“My wife is magnificent. She has no time for herself which is regrettable. She and I feel spouses and carers are vastly underrated by the state”.
As an adult, it can be difficult to have intimacy within your relationship and feel attracted to the other person, whilst at the same time dealing with their most basic needs…
Ultimately it is the choice of the SCI person to decide who they want to assist them with their every day personal care needs. Their self respect and self esteem are of the utmost importance.
If you do become the carer, your partner may feel beholden to you and find it difficult to communicate their needs for fear of being a nuisance. Couples need to be constantly aware of the balance of power in their relationship and it is probably helpful for both of you, and any other family member living at home to take time to clarify roles and plans.
At times, a person with an SCI may seem to be very demanding and this can put undue pressure on a relationship, especially if you are feeling tired, have a lot to do at home and feel that your own needs are not being met.
In older couples the partner’s capability for caring could be limited due to their own age or physical impairment. However, there are couples who do manage very well on their own and lead happy and fulfilling lives.
“We have been together for 40 years and I couldn’t imagine someone else looking after my husband. There are times however when I feel exhausted and want some time on my own and my husband goes into respite care once a year so that I can go and see the grandchildren down south”.
For other families, having a carer can give liberty and freedom so that family members can go to work, lead a varied life, go on holiday and enjoy each others company without any additional pressure.
“Partners should not feel pressurised into changing their job or hours in order to provide substantially more care than they possibly already do. Anyone else (family, friends) who provides a substantial amount of care would also be able to receive an assessment in their own right”