My partner has a brain injury
March 06, 2013
A brain injury after stroke can be a devastating experience for spouses and partners. There is no time to adjust gradually to the injury and nothing can prepare people for the changes that occur.
It is common to feel that the Acquired Brain Injury after stroke (ABI) is unfair, and that the injury and its consequences are undeserved. Life plans can disappear in an instant.
Possible reactions
Partners often experience a range of emotions following an ABI which may include some of the following:
• Shock and denial at the immediacy and severity of the injury, and the consequences of changes to your partner
• Anger and frustration, wanting to blame someone for the injury. Frustration at the recovery process and changes to your life and the life of your family
• Loss and grieving for a lost lifestyle, finances, relationships or changed plans.
• Anxiety or depression.Ongoing lowmood and anxiety are common issues reported by partners of people with ABI, and a normal reaction to difficult circumstances, so it is important to recognise the signs and ask for help
• Resentment and guilt, wanting to blame someone, feelings of guilt when people blame their partners, not having time for other life
responsibilities or relationships.
• Loss of interest in activities that were formerly enjoyed is reported by some partners
• Loneliness and isolation, many partners also report the gradual withdrawal of their friends as their lives have now taken different
directions with different priorities.
• Mourning and chronic sorrow.
This grieving process cannot be completed for the family of someone with an ABI as the loved one remains with the family, but often as a new and altered person. Family mourn the personality and characteristics that have been lost while learning to relate to a different person. Mourning is never completed, but can begin again with reminders of what has been lost.
Relationship & role changes
The occurrence of an ABI (stroke) may change the relationship between partners and the roles of all family members. Changes that occur cover many areas. Partners may need to take on a caring role. If this involves basic personal care and cueing with daily living tasks, it may feel like parenting their partner. This can be especially difficult if the ABI has resulted in challenging behaviour. The intimate couple relationship may be difficult to maintain.
ABI in one partner places a strain on many marriages. For some, the ABI may result in changes that are extremely difficult to cope with, leading to thoughts of separation or divorce. In the circumstances, ambivalent feelings of this nature result in guilt at even considering such actions. Seeking counselling may assist.
Effects on intimacy may occur due to personality changes or the confusion of now being carer as well as partner. As well, the person with the ABI may have lost the physical, social and emotional skills necessary to maintain a satisfying caring and sexual relationship.
Having carers or lifestyle support workers coming into the home on a regular basis can place a strain on relationships as family life
becomes less private. Grandparents may need to take on a more practical role with the family. This can ease practical situations but changes relationships and can be another adjustment for the partner to make.
If there are children involved, partners often worry about how the ABI has affected their relationships with their children. Some parents find themselves being more over-protective of their children; some worry that they are neglecting their children and feel their
resources (financial, time, emotional) are stretched in this regard.
Relationships with friends and extended family may also change especially if partners feel that others do not understand the ABI. Many partners find that roles in the family change as a result of their partner sustaining a brain injury. Partners may have to take on a carer role with their partner, and previously valued roles may change (e.g. giving up work to be a carer, loss of future plans as a couple and as a family). Partners may need to help educate and support other family members and friends about brain injury.
Practical consequences of abi after stroke
In addition, there may be many practical consequences of the brain injury. Some of the following situations may arise:
• Partners may find that they becomethe major decision-maker within the family, a difficult change if previously decisions were made
jointly
• Needing to become the carer for a partner with the added demands this involves
• Difficulty enjoying previous hobbies and activities, and being able to relax
• Less time for social activities and interaction with friends, some of whom may not understand what it means to have an ABI
• Responsibility for all household management tasks (e.g. managing the finances, cooking and housework, child care, maintenance) now falls to the uninjured partner
• Not being able to consult and discuss important decisions that were previously shared
• The need to ask other family members or community services to assist their partner
• The effects of the loss of income if the injured person was the primary income earner
• Being unable to meet previous financial commitments such as mortgage repayments, car payments, childcare or children’s school-fees
• Needing to provide transport to appointments and recreational activities and attending medical and other appointments with their partner.
At times an ABI will result in challenging behaviour which requires understanding of the reasons for the behaviour and strategies to
manage the behaviour. Professional assistance may be required in some cases.
Useful strategies
Obtain information about brain injury to understand the changes that may be expected. Encourage other family members and friends
to do the same. Involve family (especially children) and friends in hospital visits and rehabilitation stages. Don’t try to do it all.
Attend to financial considerations, and consider options for alternative income sources (e.g. Centrelink, a financial advisor, solicitor,
insurance company). A hospital or community health centre social worker could assist with this process.
Maintain as much normality as possible in family daily life and routines. Try to arrange quality time away from the situation with other
family members or friends if possible.Ask family or friends for assistance. Often people are willing to assist, but don’t know what to do. Tell them, or make a list of jobs that would help, e.g. hospital or home visits or outings, meal preparation, some household tasks such as mowing, shopping, transporting to therapy or children to activities etc. You can even organise a roster.
Allow time to deal with the significant changes that usually result from an ABI. Be open to being involved in support groups or professional counselling. Ways of coping vary. Some find talking/counselling helps. Others need more active ways of dealing with the changes (e.g. taking up a hobby or leisure activity, meeting with friends).
Look after yourself. Despite the many demands that are part of caring, it is most important for the partner to factor in regular breaks in order to maintain health and manage the stresses of the new role. Respite care may be possible also.
This story was first seen in the Synapse bridge magazine Vol 1. Reprinted with permission from the ABIOS www.health.qld.gov.au/abios/
It is common to feel that the Acquired Brain Injury after stroke (ABI) is unfair, and that the injury and its consequences are undeserved. Life plans can disappear in an instant.
Possible reactions
Partners often experience a range of emotions following an ABI which may include some of the following:
• Shock and denial at the immediacy and severity of the injury, and the consequences of changes to your partner
• Anger and frustration, wanting to blame someone for the injury. Frustration at the recovery process and changes to your life and the life of your family
• Loss and grieving for a lost lifestyle, finances, relationships or changed plans.
• Anxiety or depression.Ongoing lowmood and anxiety are common issues reported by partners of people with ABI, and a normal reaction to difficult circumstances, so it is important to recognise the signs and ask for help
• Resentment and guilt, wanting to blame someone, feelings of guilt when people blame their partners, not having time for other life
responsibilities or relationships.
• Loss of interest in activities that were formerly enjoyed is reported by some partners
• Loneliness and isolation, many partners also report the gradual withdrawal of their friends as their lives have now taken different
directions with different priorities.
• Mourning and chronic sorrow.
This grieving process cannot be completed for the family of someone with an ABI as the loved one remains with the family, but often as a new and altered person. Family mourn the personality and characteristics that have been lost while learning to relate to a different person. Mourning is never completed, but can begin again with reminders of what has been lost.
Relationship & role changes
The occurrence of an ABI (stroke) may change the relationship between partners and the roles of all family members. Changes that occur cover many areas. Partners may need to take on a caring role. If this involves basic personal care and cueing with daily living tasks, it may feel like parenting their partner. This can be especially difficult if the ABI has resulted in challenging behaviour. The intimate couple relationship may be difficult to maintain.
ABI in one partner places a strain on many marriages. For some, the ABI may result in changes that are extremely difficult to cope with, leading to thoughts of separation or divorce. In the circumstances, ambivalent feelings of this nature result in guilt at even considering such actions. Seeking counselling may assist.
Effects on intimacy may occur due to personality changes or the confusion of now being carer as well as partner. As well, the person with the ABI may have lost the physical, social and emotional skills necessary to maintain a satisfying caring and sexual relationship.
Having carers or lifestyle support workers coming into the home on a regular basis can place a strain on relationships as family life
becomes less private. Grandparents may need to take on a more practical role with the family. This can ease practical situations but changes relationships and can be another adjustment for the partner to make.
If there are children involved, partners often worry about how the ABI has affected their relationships with their children. Some parents find themselves being more over-protective of their children; some worry that they are neglecting their children and feel their
resources (financial, time, emotional) are stretched in this regard.
Relationships with friends and extended family may also change especially if partners feel that others do not understand the ABI. Many partners find that roles in the family change as a result of their partner sustaining a brain injury. Partners may have to take on a carer role with their partner, and previously valued roles may change (e.g. giving up work to be a carer, loss of future plans as a couple and as a family). Partners may need to help educate and support other family members and friends about brain injury.
Practical consequences of abi after stroke
In addition, there may be many practical consequences of the brain injury. Some of the following situations may arise:
• Partners may find that they becomethe major decision-maker within the family, a difficult change if previously decisions were made
jointly
• Needing to become the carer for a partner with the added demands this involves
• Difficulty enjoying previous hobbies and activities, and being able to relax
• Less time for social activities and interaction with friends, some of whom may not understand what it means to have an ABI
• Responsibility for all household management tasks (e.g. managing the finances, cooking and housework, child care, maintenance) now falls to the uninjured partner
• Not being able to consult and discuss important decisions that were previously shared
• The need to ask other family members or community services to assist their partner
• The effects of the loss of income if the injured person was the primary income earner
• Being unable to meet previous financial commitments such as mortgage repayments, car payments, childcare or children’s school-fees
• Needing to provide transport to appointments and recreational activities and attending medical and other appointments with their partner.
At times an ABI will result in challenging behaviour which requires understanding of the reasons for the behaviour and strategies to
manage the behaviour. Professional assistance may be required in some cases.
Useful strategies
Obtain information about brain injury to understand the changes that may be expected. Encourage other family members and friends
to do the same. Involve family (especially children) and friends in hospital visits and rehabilitation stages. Don’t try to do it all.
Attend to financial considerations, and consider options for alternative income sources (e.g. Centrelink, a financial advisor, solicitor,
insurance company). A hospital or community health centre social worker could assist with this process.
Maintain as much normality as possible in family daily life and routines. Try to arrange quality time away from the situation with other
family members or friends if possible.Ask family or friends for assistance. Often people are willing to assist, but don’t know what to do. Tell them, or make a list of jobs that would help, e.g. hospital or home visits or outings, meal preparation, some household tasks such as mowing, shopping, transporting to therapy or children to activities etc. You can even organise a roster.
Allow time to deal with the significant changes that usually result from an ABI. Be open to being involved in support groups or professional counselling. Ways of coping vary. Some find talking/counselling helps. Others need more active ways of dealing with the changes (e.g. taking up a hobby or leisure activity, meeting with friends).
Look after yourself. Despite the many demands that are part of caring, it is most important for the partner to factor in regular breaks in order to maintain health and manage the stresses of the new role. Respite care may be possible also.
This story was first seen in the Synapse bridge magazine Vol 1. Reprinted with permission from the ABIOS www.health.qld.gov.au/abios/