Caregiving Your Spouse Following A Brain Injury

It is a challenging and difficult task to be a caregiver for a spouse. The caregiver will often have to be in the role of being parent to their spouse. This is not a comfortable situation for either the brain injured survivor or for the ‘healthy’ partner but may very often be necessary – particularly if there is no one else to act in the ‘caregiver’ capacity.

With a brain injury and possibly physical injuries, the injured person may be a shell of who he/she once was. Because of this, caregivers often become ‘married widows’ because of the loss of the relationship they had prior to the injury. They may no longer have an equal partner. With the many changes in their spouse, social occasions with friends and family may also gradually become fewer and fewer. This places the ‘healthy’ partner in a ‘social limbo’ situation.

Caregivers very often receive little sympathy or support from family and friends because the injured person will often be on their best behaviour when they occasionally do see those outside of immediate family members. Survivors usually save their worst behaviour for their spouses.

And for this reason, occasionally parents or grown children, (particularly if they are not the caregiver’s children), of an adult survivor may attempt to intervene to the detriment of the attempts of the spousal caregiver to give support and stability. The intervention sometimes may not be in the form of help but rather of criticism or attempts to dissuade the brain-injured survivor to cooperate. i.e.: not attending support groups or therapy sessions, etc. if he/she doesn’t want to or the parents or children don’t think there is a need for them to go. This makes the role of a spousal caregiver even more difficult.

For the non-injured person, although the spouse they once knew may no longer exist, he/she is still alive. How do they mourn the loss of what is gone but is actually there? For many there will be a process of mourning for the relationship that once existed but few friends and family members will understand or have sympathy for those feelings of grief that will likely be experienced by the non-injured spouse.

It is important for caregivers to look after themselves so that they remain healthy and are able to make better decisions. It is also important that they stay connected with others – their friends and family, as well as possibly joining a support group. It will be equally important for them to occasionally get respite and take time for themselves, and if necessary, they must ask for help. No one knows if help is needed unless it is asked for.

Because of the difficulties of being a caregiver, many relationships dissolve following the injury. Those who make the decision to leave the relationship usually do so with feelings of guilt and certainly with feelings of failure. Friends and family will sometimes not understand this choice and may fault the caregiver for ‘giving up’ especially if it appears to others that things are going well.

For those who would criticize, it is best to remember that none of us know what goes on behind closed doors. For each of us, a decision such as this can only be made by those individuals involved.