When a parent is diagnosed with dementia, it’s common to grieve for them while they’re still alive. However, because of the lack of conversation about such a sensitive topic, many people think it’s ‘wrong’ or that they shouldn’t be feeling that way.
It’s important to know that it’s okay to accept and talk about your emotionally complex and painful experience of dealing with a parent with dementia. Today, we’ll explore the process of grieving a parent with dementia and how to deal with it.
What Is Dementia-Related Grief?
Dementia-related grief is a complex group of emotions. There are numerous unique factors that differentiate it from other forms of grief.
These include:
- Grieving the loss of the parent you once knew, even though they are still with you
- Your parent might experience challenging symptoms, such as confusion, distress, personality changes, meaning they need significant help with daily life
- Worrying about what the future will look like and how your parents’ health will progress
- Having to make the difficult decision about moving your loved one into a care home, or taking on more caring duties to ensure they’re safe and healthy
- Your parent might not understand what’s happening to them or why they need round-the-clock care, making them frustrated and agitated
- Working hard to manage your parents’ condition and feelings while often neglecting your own, making you feel overwhelmed and unsupported
- You may grieve your ‘old’ or ‘normal’ life, which can make you feel guilty and distressed
To learn more, read our article on how to deal with dementia in a parent.
Types of Dementia-Related Grief
There are several different types of grief that you may feel when a parent is diagnosed or when symptoms progress. You may feel only one type, or they may be interconnected due to multiple situations occurring at once. All types of grief can bring difficult emotions of frustration, upset, loss and grief.
Anticipatory Grief
Anticipatory grief is felt when you begin grieving a reality that hasn’t occurred yet. You may feel this when you notice your parent experiencing stronger symptoms that impact daily life, such as delirium and memory loss to the point where they struggle to remember who you are.
Anticipatory grief is the feelings of sadness and overwhelm you get when your parent is still with you, but you’re not sure for how long. You may also experience it if you’re worried about the future’s uncertainty.
Common feelings of this type of grief include mourning and sadness. You may feel the need to prepare for your parents’ end of life, which can further induce emotional distress. You may also mourn the loss of your parents’ older selves and the shared memories they now have trouble remembering.
Ambiguous Loss
A dementia diagnosis often leads to feelings of ambiguous loss, which is another form of dementia-related grief. You’ll often feel this when your loved one is physically with you, but psychologically has changed or become distant.
This can bring strong feelings of confusion, distress and sadness for family members. You may grieve the loss of the person you once knew, despite them still being alive. It can be difficult to look at a loved one you’ve known for all of your life, only to not recognise the person you once knew.
The ambiguity surrounding the loss of a parent to their condition often makes it difficult to resolve these feelings, making you feel trapped and unsupported as you continue to care for them.
Reversing Roles with A Parent
As your parents’ symptoms progress through the seven stages of dementia, you may find yourself becoming their primary carer. This creates a role reversal, where you’re now caring for someone who nurtured you your entire life.
This can create a range of complex emotions, including anger and resentment, which often transform into guilt.
You may also feel overwhelmed with the new physical and emotional burdens of caring for a parent with dementia, alongside your other responsibilities and busy schedule. This may lead to burnout, further complicating your grieving process.
Primary carers may feel isolated from the demands of their parents and unsupported by other loved ones. Your parent may reject care or experience negative emotions from this role reversal, which can strain your relationship.
Common Emotions You May Feel When Grieving A Parent with Dementia
Grief often looks different for everyone. What one person feels when caring for a parent with dementia may not be the same as what you’re feeling. It’s important to remember that your feelings are valid, no matter how unexpected they are.
- Sadness and mourning – Profound sadness is one of the more common symptoms when caring for a parent with dementia. The feeling of slowly losing your loved one, watching their memories fade and cognition decline can all feel like one loss after another.
- Guilt – Many carers struggle with feelings of guilt, impatience or a sense that they’re not doing enough. You may feel guilty that you can’t do enough for your parent, especially if you’re considering professional care. You may also feel guilty about feeling relieved when someone else takes over the caregiving duties or your loved one is asleep, granting you temporary respite.
- Anger – Anger can feed into guilt and make you feel like you’re a bad child for lashing out. Your anger will often be directed towards the dementia itself, the healthcare system, or even your parent. You may also feel frustrated at the unfair situation you’re in, where you are responsible for the majority of the care duties.
- Anxiety and fear – Dementia progression is unpredictable, so you may feel anxiety and fear surrounding the future. You may worry about your parents’ safety, the financial burden, and what life will look like in a few months.
- Loneliness and isolation – Being a primary carer to a parent can be incredibly lonely. You may not have enough time to socialise with friends and family, leaving you feeling alone. You may also grieve the loss of being able to confide in your parent as their condition progresses.
Acknowledging Your Grief and Caring For Yourself
The emotional toll that taking care of a parent with dementia can have is often very challenging. Understanding your feelings and why you’re experiencing them can be instrumental in getting yourself the right amount of support from peers and professionals.
Looking after yourself is just as important as your parent. If you’re grieving a parent with dementia, consider the following self-care options:
- Support groups: Talking to others who are going through similar situations can be beneficial, helping you feel heard and less alone.
- Therapy: Counselling can provide important tools for coping, offering strategies to address negative feelings, manage stress and deal with grief.
- Respite care: Respite dementia care gives you breaks from caring for a parent, helps you maintain your own health and well-being, and lets you worry less about their safety.
- Educate yourself: Understanding dementia and how it affects you and your parent can help you set realistic expectations and manage daily care duties.
It’s important to know when to ask for help. If you’re struggling with looking after a parent with dementia, or don’t know how to deal with your grief, acknowledging your feelings and reaching out to a trusted loved one is the first step.
How Trinity Homecare Can Help
At Trinity Homecare, we understand the weight of looking after a parent with dementia can have on adult children. Our team of compassionate, fully trained carers can support you with respite visiting care to give you regular breaks from your duties, or with more comprehensive, round-the-clock live-in dementia care.
Our person-centred approach ensures your parent continues living life the way they want for as long as possible. We maintain independence and honour their dignity, and we can offer the entire family emotional support as you navigate this time of uncertainty.
Talk To Us Today
At Trinity Homecare, our ultimate goal is to enrich your lifestyle in the comfort and familiarity of your own home. This allows you to live the independent lifestyle that you love without the daunting thought of moving into a care home. We are here to support you with various forms of live-in care.
Call us now on 0207 183 4884 in confidence for a free, no obligation quotation. If enquiring outside of our opening hours, please complete our online form and we will contact you the next day.
