Grieving a parent with dementia is something that isn’t discussed enough. When a loved one has dementia it is an emotionally complex and often painful experience.
We’ve heard from many people who find themselves faced with a range of emotions that can be difficult to navigate.
“I wanted to visit my mum more when she was in the care home, but it was so difficult. She didn’t know us and would say mean things. I tried to remember her as she was, my dear mum. But I would cry after almost every visit.” – Meera, Australia
The journey is full of uncertainty, role reversal, and an ongoing sense of loss that can profoundly affect your emotional wellbeing.
Dementia-related grief is complex
Dementia-related grief is particularly complex due to several unique factors that differentiate it from other forms of grief.
- You might grieve the loss of the parent you once knew, even though they are still with you
- Your parent may experience confusion, distress, personality changes and need significant help with day-to-day life
- You might worry about what the future will look like and how their health will progress
- You might have taken on caring duties for your parent, or be responsible for making sure they are safe and healthy, even if they don’t want this kind of help
- You might have to make the decision to move them into care or hospital
- Often your parent may not understand why these changes are needed, and they may be unhappy about the choices you need to make
- You will often be working very hard to manage this situation, and may feel unsupported and overwhelmed
- You may grieve your ‘normal life’ when you didn’t have these responsibilities and when your parent was well and able to care for themselves.
There may be many interconnected situations happening at once, and they all bring difficult emotions, loss, frustration and grief.
Anticipatory grief
Anticipatory grief occurs when you are grieving for a reality that has not yet happened. This is often the case when grieving a parent with dementia or other serious illnesses, where your loved one is still with you but you are not sure how long for, or how their health will progress over time.
You may also be grieving for the person they used to be, and for the relationship you used to have together.
In dementia, anticipatory grief can be particularly intense and prolonged, as the decline in cognitive abilities and personality changes manifest over several years.
This type of grief involves not only sadness and mourning but also preparation for the end of life, which can bring its own set of emotional challenges and stress.
Caregivers may mourn the loss of the person’s former self and the shared memories and experiences that no longer resonate with the person suffering from dementia.
Ambiguous loss
Dementia often leads to a type of loss known as ambiguous loss, where the person is physically present but psychologically they have changed or become absent.
This can be deeply confusing and distressing for family members who may grieve the loss of the person they once knew, despite them still being alive.
The ambiguity of this loss makes it difficult to resolve because there is no clear point of closure.
Ongoing dementia grief
Grief in dementia is not a single event but a continuous process. As dementia progresses, caregivers and loved ones experience repeated losses.
Each new stage of the disease can bring about a fresh sense of loss as more aspects of the person’s memory and personality are diminished.
This ongoing, or “chronic,” grief does not follow a typical grieving timeline and can lead to prolonged periods of mourning.
“It was a nightmare when my dad had dementia during his last year. We would have good days and then very bad days with him. You never knew what would happen next. I was always on edge, every time I got a message or a phone call, every time we went to visit. I feel like I spent a year living on adrenaline.” – Russell, United States
Role reversal and becoming a caregiver
Many people caring for someone with dementia experience a reversal of roles, particularly adult children caring for parents.
This can bring up complex emotions, including resentment and guilt.
Additionally, the physical and emotional burden of caregiving can be overwhelming, often leading to burnout and further complicating the grieving process.
Caregivers may feel isolated due to the demands of caregiving and a lack of understanding from others who might not comprehend the depth of the grief experienced when someone is still living.
Emotions you may experience when grieving a parent with dementia
Sadness and mourning: It’s natural to feel profound sadness as you witness the progressive nature of dementia. The incremental losses — a parent’s fading memories, the decline in cognitive functions, or the eventual inability to recognise their child — can feel like small deaths, each triggering its own wave of grief.
Guilt and self-blame: Many caregivers struggle with guilt, whether it’s about feeling impatient, not doing enough, or even contemplating nursing home care. There might also be guilt associated with relief — feeling a sense of ease when the parent is sleeping or otherwise engaged because it provides a temporary break from the demands of caregiving.
Anger and frustration: It’s not uncommon to feel anger or frustration. This can be directed towards the disease itself, the healthcare system, or even at the parent for their inability to participate in life as fully as before. Anger can also stem from the unfairness of the situation or the disruptions to personal and professional life that caregiving demands impose.
Anxiety and fear: The unpredictable progression of dementia can lead to anxiety and fear about the future. Caregivers often worry about their parent’s safety, the financial burden of care, and what the next stages of the disease will bring. There’s also the fear of inheritance — wondering if they might one day face the same fate.
Loneliness and isolation: As dementia changes the dynamics of the relationship, caregivers might feel increasingly isolated. Friends and family may not fully understand the situation, and the caregiver can end up feeling like they are facing these challenges alone.
Self care when grieving a parent with dementia
There are many emotional and physical challenges to manage when you’re caring for a parent or loved one. It is important that you put yourself first and ensure your needs are being met. This includes having support for coping with grieving a parent with dementia, as well as making sure you are getting enough rest and respite.
Support groups can be helpful, offering a space to share feelings with others who understand the specific challenges of caring for a parent with dementia.
Therapy or counselling can also provide important tools for coping, offering strategies to manage stress, address guilt and anger, and deal with grief.
It’s also important to find respite care when possible, allowing for breaks from caregiving duties to maintain your own health and wellbeing.
Educating yourself about the condition can help set realistic expectations, which can help you in managing day-to-day challenges.
Acknowledging the grief dementia brings
The emotional journey of caring for a parent with dementia is undoubtedly challenging. It’s filled with ups and downs, and walking this path requires support, understanding, and a lot of self-care.
Please don’t hesitate to seek help for yourself or your parent. It’s important to take care of your own emotional and physical health as you care for your loved one.
