Caring for a partner
April 15, 2014
Her husband’s stroke turned Dianne Stewart’s retirement into a challenging journey
Each year we celebrate Kevin’s survival and mark this day by reflecting on milestones along the road to recovery. My husband found this difficult for the first few years, as he grieved for the lifestyle he’d left behind. But now we see it as the beginning of a “new normal” for us.
From our involvement with many support groups, it is evident that everyone’s acquired brain injury is unique. Kevin is now a left hemiplegic with visual deficiencies, occasionally epileptic, and has difficulty walking. His post- stroke difficulty in initiating activities and sequencing tasks has affected his personality. He can be impulsive, intractable and emotional, and sometimes gets himself into situations he can’t handle (he was previously a dynamic business executive).
Coping with behaviour & emotions
I am involved with a support group for partners of people who have a brain injury. Although diverse in age and background, we are alike in wanting to stay in our relationships and determined to give it our best shot. When our carers’ group first formed, it didn’t take long to work out that changes in emotions and behaviour cause the most distress in relationships with our partners.
We roll with the punches when it comes to their physical limitations, but the indefinable effects of their brain injury have resulted in changes to our personalities as well. Overlooking our partners’ seeming lack of appreciation, we make allowances for their (sometimes outrageous) confabulations and have learnt to smile at the black humour of our situations. We take one day at a time – for we know that no two days are the same.
This is as good as it gets
Prior to our partners’ brain injuries, each person in our carers’ group had interesting and fulfilling lives, with dreams and plans for the future. Then, through one cataclysmic event, their lives changed forever – and so did ours. Another common thread in our group is that for the first year or so, we still hoped our old lifestyles might resume – until we realised “this is as good as it gets”.
Caring for someone can be a lonely experience
– friends move on, people avoid asking you to join their activities, and you take on many new responsibilities. Family members with their own lives to lead try to fit you in, but often it’s just too hard.
Carers often need to cope with spontaneous unsociable behaviour from their charges, and the reactions this elicits from other people. Thinking for two becomes part of the daily routine, as even the most basic task may require a decision or supervision. Typically, your own well-being becomes secondary, without the opportunity to look after yourself as before. Women can feel as if they are losing their femininity, and can easily become weary, teary and forgotten.
Scant recognition of huge contributions
For the younger women in our group there is the prospect of caring for a husband who is often less cognitive than their school-aged children, and they can expect a lifetime of limited independence and opportunities – financially, socially, intellectually and sexually. As their partners are still young men, their loss of independence, income, masculinity and identity is more likely to be expressed through violence, or impulsive and reckless activities.
The injured person’s parenting abilities are often negligible, and their children may respond poorly to the situation, putting more pressure on the wife/carer. I have nothing but admiration for these dedicated women who face many decades of caring for their loved ones at the cost of their own security, ambitions and independence. Their contribution is immeasurable – but sadly, recognition is scant from both society and government.
Not so golden years
So we don’t have the golden years we had envisaged, but life rolls on and there are many things we still have fun doing together. We get pleasure from our home and garden, family occasions, short trips away, dining out and socialising, and have become discerning film buffs and armchair football experts. We’ve made some lovely new friends, who accept our limitations.
Many of them also have impairments. We consciously choose medical professionals who are pleasant and accommodating; after all, we do spend quite some time in their company. We know as patients we are entitled to be treated respectfully.
Time to remember the carers
I paraphrase the ditty “who takes care of the caregiver’s welfare while the caregiver’s busy giving care?” If there’s one thing I could ask of our politicians, it would be for greater recognition of the role carers play and their value to the community. Most of us have given up careers, and with it the benefit of employer superannuation to support us in our own later years. This is a real concern for carers. Perhaps in future government elections it will be our time to be remembered.
Article originally printed in Synapse Bridge Magazine Volume 14
Each year we celebrate Kevin’s survival and mark this day by reflecting on milestones along the road to recovery. My husband found this difficult for the first few years, as he grieved for the lifestyle he’d left behind. But now we see it as the beginning of a “new normal” for us.
From our involvement with many support groups, it is evident that everyone’s acquired brain injury is unique. Kevin is now a left hemiplegic with visual deficiencies, occasionally epileptic, and has difficulty walking. His post- stroke difficulty in initiating activities and sequencing tasks has affected his personality. He can be impulsive, intractable and emotional, and sometimes gets himself into situations he can’t handle (he was previously a dynamic business executive).
Coping with behaviour & emotions
I am involved with a support group for partners of people who have a brain injury. Although diverse in age and background, we are alike in wanting to stay in our relationships and determined to give it our best shot. When our carers’ group first formed, it didn’t take long to work out that changes in emotions and behaviour cause the most distress in relationships with our partners.
We roll with the punches when it comes to their physical limitations, but the indefinable effects of their brain injury have resulted in changes to our personalities as well. Overlooking our partners’ seeming lack of appreciation, we make allowances for their (sometimes outrageous) confabulations and have learnt to smile at the black humour of our situations. We take one day at a time – for we know that no two days are the same.
This is as good as it gets
Prior to our partners’ brain injuries, each person in our carers’ group had interesting and fulfilling lives, with dreams and plans for the future. Then, through one cataclysmic event, their lives changed forever – and so did ours. Another common thread in our group is that for the first year or so, we still hoped our old lifestyles might resume – until we realised “this is as good as it gets”.
Caring for someone can be a lonely experience
– friends move on, people avoid asking you to join their activities, and you take on many new responsibilities. Family members with their own lives to lead try to fit you in, but often it’s just too hard.
Carers often need to cope with spontaneous unsociable behaviour from their charges, and the reactions this elicits from other people. Thinking for two becomes part of the daily routine, as even the most basic task may require a decision or supervision. Typically, your own well-being becomes secondary, without the opportunity to look after yourself as before. Women can feel as if they are losing their femininity, and can easily become weary, teary and forgotten.
Scant recognition of huge contributions
For the younger women in our group there is the prospect of caring for a husband who is often less cognitive than their school-aged children, and they can expect a lifetime of limited independence and opportunities – financially, socially, intellectually and sexually. As their partners are still young men, their loss of independence, income, masculinity and identity is more likely to be expressed through violence, or impulsive and reckless activities.
The injured person’s parenting abilities are often negligible, and their children may respond poorly to the situation, putting more pressure on the wife/carer. I have nothing but admiration for these dedicated women who face many decades of caring for their loved ones at the cost of their own security, ambitions and independence. Their contribution is immeasurable – but sadly, recognition is scant from both society and government.
Not so golden years
So we don’t have the golden years we had envisaged, but life rolls on and there are many things we still have fun doing together. We get pleasure from our home and garden, family occasions, short trips away, dining out and socialising, and have become discerning film buffs and armchair football experts. We’ve made some lovely new friends, who accept our limitations.
Many of them also have impairments. We consciously choose medical professionals who are pleasant and accommodating; after all, we do spend quite some time in their company. We know as patients we are entitled to be treated respectfully.
Time to remember the carers
I paraphrase the ditty “who takes care of the caregiver’s welfare while the caregiver’s busy giving care?” If there’s one thing I could ask of our politicians, it would be for greater recognition of the role carers play and their value to the community. Most of us have given up careers, and with it the benefit of employer superannuation to support us in our own later years. This is a real concern for carers. Perhaps in future government elections it will be our time to be remembered.
Article originally printed in Synapse Bridge Magazine Volume 14