WORLD ALZHEIMER’S MONTH
Anger and resentment can be difficult emotions to admit to when caring for someone with dementia. But caregivers need support too.
Caring for someone with dementia can involve a profound emotional shift in a relationship. As memory, reasoning, perception, mood and behaviour change, caregivers may find themselves struggling with feelings they never expected to experience.
According to registered counsellor Lorna Quinn, anger, frustration, resentment and guilt can all form part of the caregiving experience. How these emotions emerge can depend on the caregiver’s own history and the nature of their relationship with the person with dementia.
The changes can be alarming and overwhelming, particularly as caregivers take on responsibilities previously managed by their loved one.
They may have to navigate:
- Changes in communication and the relationship itself.
- Medical appointments and interactions with healthcare professionals.
- Medications and changing moods.
- Personal care and other tasks that were previously handled by the person with dementia.
- Behaviour and social changes that can be difficult to understand.
When guilt adds to the burden
Guilt can become another heavy burden. Caregivers may judge themselves harshly, believing they should be coping better or that expressing anger or frustration means they are not good enough carers.
Lorna describes this as ‘counterproductive guilt’ – guilt that becomes accusatory from the caregiver towards themselves and may intensify the feelings already experienced by the caregiver, who may be at their wits’ end.
Instead, caregivers can learn to look at their own experiences with greater compassion. “When words are given for one’s felt experiences of care, then one can find comfort from others who express similar experiences,” says Lorna.
A support group can provide a safe, compassionate and non-judgemental space where caregivers can acknowledge difficult feelings without fear of being judged.
You are not losing your mind – you are facing something difficult
Lorna has facilitated dementia caregiver support groups for many years and says participants often benefit from discovering that they are not alone.
Sharing experiences with others who understand the challenges can help caregivers make sense of what they are experiencing. The group also provides information about dementia, including the effects of changes in brain function.
Even amid the sadness and difficulty, there can be room for appropriate humour, Lorna says, helping to lighten the load of continuous care.
Some of the most difficult experiences may be those caregivers feel unable to discuss elsewhere, including changes in toileting, inappropriate behaviour, sexual matters and changes in social interaction.
Understanding these experiences as recognised aspects of dementia, rather than deliberate actions by the person, can help reduce fear and bring greater understanding to the caregiving journey.
Another particularly painful challenge is coming to terms with the feeling of losing a person while they are still alive.
A support group cannot remove the difficulties of dementia care, but it can give caregivers time, patience, understanding and a place to share what they are going through.
It can also encourage caregivers to be intentional about their own self-care – something that can easily be overlooked when so much attention is focused on the person with dementia.
Support is available
A dementia caregiver support group, facilitated by Lorna, has been running for about 14 years. A registered counsellor with the Health Professions Council of South Africa, Lorna has many years of experience in the dementia field.
The group is open to caregivers and family members of people living with dementia.
“We provide a safe and supportive space to receive information and share the various challenges that come with caring for a loved one,” Lorna says. “The way forward becomes less isolated and overwhelming as the group provides support in ways that draw from the collective contribution of all who attend.”
The group meets on the second Saturday of each month from 09:30 to 10:30 at the Elphin Lodge clubhouse (222 Modderfontein Road, Edenvale), followed by refreshments and informal connection time.
For more information, contact Lorna Quinn on 082 456 5692.
* Rand Aid provides specialised memory care at Ron Smith Care Centre and Thembalami Care Centre, supporting people living with dementia and their families.
ALSO READ: When the person you love begins to change: A family’s Alzheimer’s journey.
