Signs of Alzheimer’s disease include a person exhibiting unusual behavior like physical aggression, combativeness, severe mood swings, wandering and repetition of words. These significant behavioral changes can lead to frustration and tension for both parties – the people with Alzheimer’s and their caregivers. It is important to keep in mind that the person is not acting this way purposely to analyze probable adjustments care.
Family members, especially adult daughters, face distinct challenges while looking after parents with dementia and may experience compassion fatigue: the combination of hopelessness, helplessness, social isolation and an inability to be empathic. Previous research on compassion fatigue has overlooked filial caregivers, focusing only on professional healthcare.
The stats and facts
Providing absolute care for someone with Alzheimer’s can be rewarding yet challenging. During the disease’s initial stages, a person may remain independent and need very little care. As the symptoms progress, however, care needs intensity and eventually leads to a need for round-the-clock assistance.
According to Australian Institute of Health and Welfare, dementia is the main cause for disabilities in Australians aged 65 years and older. On the other hand, more than a million Australians are caring for someone with dementia.
It is often heard from family members and caregivers that one of the most upsetting aspects of Alzheimer’s is the behavioral changes it causes. Many relevant resources can help caregivers know what to expect and how to adapt during the early, middle and later stages of the problem.
The story of Claire Poirier
For many young adults, taking on the responsibility of caring for an adult – especially a parent – may seem unimaginable.
When Claire Poirier was 14 years old, she had to quickly step into the role of caregiver for her mother who, at the age of 54, had been a diagnosed with an early onset of Alzheimer’s disease. Throughout her teenage years, Poirier, along with her sister and father, acted as one of her mother’s primary caregiver, making the situation difficult to manage with school and social life. “When we would cross the street I would have to hold her hand. When we would be out in public I would have to say, ‘Jane, walk this way,” Poirier said. “I wanted her to be safe.” She didn’t want anyone to look down on her family.
Now after seven years, despite all the hardships, Poirier has dedicated her life to educating young people about Alzheimer’s care; co-founding a group with her sister called Young People against Alzheimer’s.
Many daughters providing support or care to people with Alzheimer’s by either leaving their jobs or cutting back on spending and selling assets to pay for expenses tied to the disease.
Mentioned ahead is a list of other burdens faced by such female caregivers. It is time to state this here that in cases as such, it is okay to seek help and be open about what you can and what you cannot do and reach out to blogs like dementiatalk.net for guidance and comfort.
Anxiety, stress, and isolation
Compared to adult caregivers, adolescent caregivers face a different set of challenges. According to a 2013 report, young caregivers face the risk of failing to acquire the education and social skills they need while balancing caregiving with school.
The report further suggests that for young people, taking on the responsibility of caring for a parent or family member often comes with “the negative effects of stress, anxiety and social isolation”.
The Director of geriatric psychiatry at Johns Hopkins University, Dr.Peter V. Rabins, says since caretaking is ‘unusual’ for female teenagers, it becomes a difficult task to accomplish. It’s a huge adjustment even for ‘well-adjusted’ individuals.
Emotional distance and socio-cultural pressures
In a researcher’s study, most of the daughter caregivers stated that they were the ones who were most committed to their parents before and after Alzheimer’s. The additional socio-cultural and economic factors, unsettled issues and principles passed on from previous generations creates family anomie. The lack of commitment male sibling’s showcase towards their parents with Alzheimer’s touches upon the idea of morality within the society.
In other cases, married children feel exempted from the responsibility of taking care of their parents, citing the fact that they have their own families to look after. The sibling’s opinion that their ‘single sisters’ should be more responsible for their sick parents is mostly explained by structural and economic factors of every family system. Consequentially, daughters become emotionally distant with a general lack of interest in the treatment process, mainly reporting to feel stressed and highly overwhelmed. Female caregivers, attempting to gain more support, also hold family meetings or contact their siblings to explain the importance of sharing caretaking duties.
A lot of other times, caregiving daughters have been doubtful about their abilities to meet their parents’ needs, feeling an inconsistency between actually taking care of their parents and their expectations for themselves as caregivers. Many females reported feeling that they were not taking care of their parents the way their parents deserved. Moreover, caregiving daughters tried to prevent their parents from feeling upset about dementia issues, like when a parent could not recall the daughter’s name. As one female stated that she ‘couldn’t handle that well, so that was a really bad thing’.
In another instance, a female developed self-hatred because she did not feel that she could ever make her mother happy. The statement above highlights the concept that the daughters were trying – or rather feeling pressured – to prevent their loved ones from experiencing distress in Alzheimer’s. They perceived their parent’s suffering, not wanting to increase it.
Many daughter caretakers describe competing life demands as another contributing factor for compassion fatigue. The competing demands range from husbands to jobs to other activities. Daughters usually have to take time out from other tasks to look after their parents, often feeling that they are missing out on things.
In a study by Jennifer R. Day, daughters caring for dementia patients spoke of how physically drained they were. One of the female caregivers fell asleep on the way home from work, meeting a minute accident. She could hardly function at work and right after coming home, would just ‘nod off’ immediately.
Continuous feelings of uncertainty
Adult daughters usually report feelings of uncertainty and doubt in response to caring for a loved one with dementia. Although they might not be contributing factors of compassion fatigue – a sign of Alzheimer’s – these themes are reflective of perceived suffering in providing care for an Alzheimer’s patient.
Daughters tend to perceive suffering as a parent and, while trying to minimize their suffering, begin doubting their responses to distressing situations for their parents. The feelings of uncertainty are usually the outcomes of the daughter’s exposure to continuous suffering and the fear that something bad would happen if they didn’t respond appropriately to their parent’s condition. Therefore, what female caregivers usually end up doing is preventing their loved ones from experiencing the negative outcomes of Alzheimer’s – the first step towards minimizing compassion fatigue.
Talking through it
According to Rabins, one of the best ways to come to terms with your ‘sudden’ caregiving role is to rationalize it simply. That can, however, be a problem for young adolescents since they often don’t have the maturity to be able to intellectualize about it.
As an individual, you need to find ways to cope with your challenges. In addition to depending on your father or siblings for support, serve on a local committee of a charity event that raises awareness for Alzheimer’s disease. The event’s purpose would not only be to educate people about dementia but help them cope with the illness and social-cultural problems that occur alongside it.
About Ashley Rosa: Ashley Rosa is a freelance writer and blogger. As writing is her passion that why she loves to write articles related to the latest trends in technology and sometimes on health-tech as well. She is crazy about chocolates. You can find her at twitter: @ashrosa2.