A lot of attention has appropriately focused on frontline staff during this Covid-19 pandemic and I have talked about that in the ‘Coronaville' blog series over the last number of months. Past time now to give some attention to those caring for elderly, unwell and special needs relatives at home, whose circumstances may have suffered more because of the pandemic. Carers are experiencing a decrease and lack of everyday support due to social distancing, redeployed medical resources and the absence of sufficient and financial recognition by the government. Many feel that Covid-19 has doubled down on the efforts required in the caring role. The lack of external assistance enhances the sense of isolation in their situation but also increases the level of personal responsibility that carers now feel. When someone has a caring role for a family member, it routinely comes with a lot of stress and strain. Irrespective of the type of incapacity of the person being cared for, there are a number of experiences shared by carers. 
The level of support from public and private sources is inadequate even when funding is not an issue. Carers frequently experience frustration, despair and a sense of failure. The sense of failure is greatest when the person cared for has to go to a care facility, such as a nursing home, despite this being in their best interests. Carers are spent, tired, frequently exhausted and often with no respite. Loss is experienced on many levels from the eventual passing away of the loved one, to the suspension of the carer’s own life which may have been put on hold, to perform the caring role. Often, this latter loss is not acknowledged as the person feels selfish and guilty if they express it. Hearing others describe their experience of reward or the honour of caring for a loved one, does not help in the moment and only seems to heighten their internal sense of isolation. If not expressed, inner conflict arises between reasonable, normal feelings and guilt. When the caring role ceases, difficulty is often experienced by carers re-integrating with ‘normal’ life – getting a job, having a social life, making friends. The carer may have been a carer for so long, it became their identity. Now it is gone. In many cases, the person feels like they have lost their identity and become invisible. Thus the sense of loss is extended beyond the loss of the person cared for. Guilt at feeling relieved or released of the caring burden is common and is difficult for the carer to acknowledge at times. Anger and resentment may be experienced whether the carer volunteered for the role or whether the role was imposed on them because of their ‘position’ in the family (spouse, unmarried, no children, local, not abroad, due to inherit etc). Often ‘position’ can be imposed by other family members –because the carer has historically fulfilled the role of the ‘the fixer,’ ‘the go for’, ‘the strong one’ and so forth. The carer can feel ‘landed with it,’ feel they have no choice in the matter and no voice to push back on the imposition. Lack of support and criticism of the carer or their efforts can be extremely hard to take. Ill treatment by the person being cared for, is not uncommon. Some of this is part of the illness, some part of the frustration dealing with the illness and then sometimes it is the nature of the person to be demanding or ungrateful. Personnel in hospitals receive some training for dealing with this but a carer often won’t have and feel they can’t give voice to what essentially is an abusive situation. 
There is a taboo in our culture regarding the use of care homes. So widespread is this, that many now in advancing years, are instructing their children and potential carers, that should it be required, they wish to be cared for in a care home. Some, are proactive around researching and specifying where they would like to be. This goes a significant way to absolving the guilt that can be felt around the decision, by family members. Instead of allowing reproachful thoughts to take hold, those thoughts can be reframed around the sense of relief and peace of mind that a loved one is safe and cared for 24/7, if there is difficulty in providing this otherwise. As parents, it is our duty to care for and raise our children, with core values certainly, but without the expectation or belief that they should return the favour, when we are elderly. Family members that are full time carers should be encouraged to feel it is okay to ask for help and respite. True resilience is recognising when your limits have been exceeded and the importance of looking after yourself first. 
Psychological and immunological studies of responses of individuals to stressful situations have shown that care giving stress confers an increased risk for all types of illness [1-3]. Intensive, care giving can produce a variety of adverse mental and physical health consequences, best documented among those caring for a family member with dementia [4,6,7]. According to a Trinity College Dublin study [7], which assessed the health and wellbeing of spouses caring for partners with dementia in Ireland, high burden levels were associated with a poorer quality of life and were linked to an increased number of chronic health conditions in the carer. It found that one in three carers had clinically significant symptoms of depression and the prevalence of the symptoms did not decrease once the caring role ceased. The study also identified high levels of anxiety among carers, largely around overall management and logistical requirements. The levels of depression and anxiety in carers were at levels that could affect self confidence and motivation. 
The role of caring clearly has implications for the carer’s own mental health that have been documented in many different types of studies. It is important therefore, that a carer pays attention to their mental health. Coming for therapy is an important first step in self-care. Being able to speak confidentially with a professional, about suppressed thoughts, frustrations and feelings of guilt is very important to the wellbeing of the carer, enabling them to be resilient in their role and protecting their mental and physical health. The widespread availability of on-line therapy warranted during Covid-19, is one aspect of the pandemic that can make support more accessible to carers. 
If you are a carer and feel in need of some support, on line or face to face, get in touch here
1. Schulz R, Beach SR. Caregiving as a risk factor for mortality (1999) The Caregiver Health Effects Study. JAMA 282:2215–2219. 
2. Kiecolt-Glaser JK and Wilson SJ (2017) Caregiver Vulnerability and Brain Structural Markers: Compounding Risk. Am J Geriatr Psychiatry. Jun;25(6):592-594. 
3. Glaser R, Kiecolt-Glaser JK (2005) Stress-induced immune dysfunction: implications for health. Nature Rev Immun 5:243–251. 
4. Smagula SF, Beach S, Rosso AL, et al. Brain structural markers and caregiving characteristics as interacting correlates of caregiver strain. Am J Geriatr Psychiatry in press 
5. Segerstrom, S. C. & Miller, G. E. (2004) Psychological stress and the human immune system: a meta-analytic study of 30 years of inquiry. Psychol. Bull. 130, 1–37 
6. Kiecolt-Glaser JK, Marucha, P.T, Milarkey, W.L,Mercado, A.M., Glaser, R (1995) Slowing of wound healing by psychological stress. Lancet 346(4): 1194-1196 
7. https://www.tcd.ie/news_events/articles/high-levels-of-mental-health-issues-for-spousal-carers-of-people-with-dementia/ 
Tagged as: Carers, Coping, COVID-19, Loss
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