Pronia’s ‘Mazi’ palliative Care program for carers of people living with life-limiting illnesses facilitated today a workshop with Carers Victoria at Clayton Community Centre. The ‘Caring till the End’ workshop focused on Carers’ well-being and self-care during the end of life stage of a loved one.
The workshop provided the opportunity for discussion around expectations and desires of families versus systemic barriers and organisational challenges in regards to end-of-life care.
Carers expressed their feelings of guilt, expectations of responsibility and challenges when it comes to acceptance that the death of a loved one is eminent. The lack of control, unavailability of culturally and linguistically relevant services and supports in palliative care settings and the family’s pressure on women to assume caring roles makes many female Carers feel that they have no say in the decision-making process. Discussion around collectivist culture versus the needs of the individual took place.
There is a common perception across many cultures that females are more caring and nurturing; and despite this myth, the statistics show that there are more female Carers worldwide than males. Many do not get to choose this role.
The session helped participants to identify culturally appropriate strategies to have conversations about death, advance care directives, wills and other important matters when a loved one has been diagnosed with a terminal illness.
It is a generational cross-cultural trend to not talk about such matters with ease.
Attitudes towards death and dying may vary from individual to individual, even among the same cultural group as everyone endeavours to achieve acceptance and find peace when confronted with the death of a loved one.
READ MORE: National Carers Week casts the spotlight on the unpaid workers of love and sacrifice
Self-care is a difficult thing for most Carers who often do not have time to look after themselves or take time out. Feelings of guilt, shame, fear often act as barriers to self-love. Sleep, healthy nutritional diet, exercise, music, gardening, pets, cooking and enjoying family time are some of the mechanisms that help Carers support their loved ones through the last days of their lives.
There is social isolation, especially among elderly Carers who look after a spouse or child living with life-limiting illness. Various emotions, including anger, as well as feeling trapped and mourning the loss of who they used to be; and the relationship they had prior to the diagnosis of their loved one are common amongst Carers.
One mentioned: “I’d go home after the visit to the facility and feel helpless, alone, invisible. Not even having the energy to do my house chores!”
Emphasis was also given on how to help the dying person to have peace and to prepare for their death.
The problems and limitations of the aged care, hospital system versus the needs of Carers where highlighted with the statement of a carer: ‘ Aged care packages are not enough. And it takes forever before they get allocated. In many cases the person enters aged care facility or dies and not having received their package. This is what has happened to us.’
The session was completed with an outline of various services and supports available for carers.
This week as part of Carers week 2019, Pronia celebrates the role and service of Carers with a special event on Thursday 17 October from 12.30 – 2.30 pm at Pronia’s head-office at 7 Union Street, Brunswick.
The ‘Caring till the End’ workshop will be presented in Brunswick on Thursday 24 October, 12.30 – 3.30.