A neurodegenerative diagnosis can put any family into a cycle of grief, frustration, and loss. We have so little time with our family members, but what happens when that time is cut short? With this type of diagnosis, you start to watch someone fade and lose the capabilities they once had.
Depending on your responsibility for their well-being, you may suddenly find yourself in the role of a family caregiver. Now, you're trying to balance your changing relationship with your diagnosed family member, address concerns from other family members, and still take care of yourself. Maybe you're looking into long-term care facilities or managing in-home caregivers. As you know, this diagnosis comes quickly, changes rapidly, and brings stress and unpredictability to your life.
And, because there's no physical death yet, there's no casserole; the typical cultural condolences that soften the grieving process aren't there. Grieving a family member with a neurological disease doesn't always look like traditional bereavement. Yet, your grief is real, ongoing, and can be completely overwhelming.
It may be time for you to seek support. We'll discuss what caregiver support can look like and how to cope with losing a family member to a neurodegenerative diagnosis. Of course, your family member living with a chronic illness is experiencing their own grief and confusion. However, in this article, we'll focus on how you can cope with this change and how you can receive help and support.
Identifying Feelings of Grief and Loss as a Caregiver
Finding out about a family member's neurologic degenerative disease diagnosis might have come as a surprise initially. But now, you're noticing that they don't remember birthdays or important things about you and yours, their vocabulary is becoming more limited, and they have unexplained shifts in their mood or personality. They might start to show signs that they can't care for themselves like they used to. As you watch this happen, you might start to experience feelings of grief and loss even though they're still alive.
This is called anticipatory grief, and happens before someone passes. It's usually experienced by family members or caregivers who are caring for a loved one and watching their personality fade. People with anticipatory grief might have anxiety or dread as they wait for the passing of their loved one. It's important to recognize these feelings and know that they're a normal part of the grief process.
You might also be frustrated and grieving your own independence during this time. If you're suddenly thrown into a caregiver role, you may be forced to put aside your own interests and life plans. These feelings might lead you to seek caregiver emotional support. Many caregivers benefit from discussing these feelings in a therapy session with a therapist who specializes in grief.
It's important to recognize these feelings and be honest about them with your therapist or support group. You'll find comfort in knowing that other people who are in caregiver roles, especially with family members living with dementia or other neurological conditions, also experience these feelings. Many utilize therapy as one of their primary resources for caregivers, and you may find that therapy is helpful for you as you navigate your feelings of loss and grief.
How can a neurological diagnosis change your family dynamic?
If someone you love has been diagnosed with a neurological disease (Dementia, Alzheimer's, Parkinson's, etc.), everyone in the family is affected differently. Depending on the stage, your family member may experience memory problems, impaired judgement, difficulty communicating, or even confusion. This takes a different toll on each relationship and brings up different feelings for everyone.
For everyone, daily roles and expectations for the future change. Your family members each have their own expectations and understanding of mortality, and different relationships with the diagnosed person. Some might find that unresolved feelings or past resentment start to surface. Others might be grappling with feelings of regret or struggling to identify their feelings. Because of this, families usually experience strains and tension within the family unit.
As the disease starts to advance, you and your family may start to evaluate other care options like at-home care, respite care, or begin managing in-home caregivers. This might cause friction between family members, as everyone can have a different view on how to provide the best care for their mutual family member. Family events might become tense, and some family members might stop coming to avoid the tension.
You may also start to notice that the dynamic with yourself is changing. For many, caregiving starts to become an all-encompassing role. Family caregivers can neglect their own mental health and, after years, notice their life is completely consumed by their role, even if they are not the primary caregiver.
Financial pressures, legal decisions, and disagreements over care settings add more weight to an already fractured system. If your family dynamic has become more strained, you may benefit from discussing these changing dynamics with a therapist. Family therapy can help families navigate these conversations and prevent unresolved conflict from becoming permanent damage. In a family caregiver therapy session or individual caregiver therapy session, you can discuss these relationship dynamics and how to cope with the additional stress it is bringing.
How to Overcome Caregiver Depression
The grief you're experiencing is different than the grief you'd experience if your family member had already passed. As a family caregiver, you're grieving through the whole process. Every time they lose another capability or regress, you experience an intense type of ambiguous loss. You might be feeling anxiety or dread around their passing. All of this could be contributing to your caregiver depression.
If you're experiencing fatigue, appetite loss, social withdrawal, or changes in your sleep, you might be depressed. Talking with a therapist about how to overcome caregiver depression would be a good step to improve your health care.
How to Care for Yourself
Caregivers need to take care of themselves. Self-care can help you to provide better care for your loved one. But also, your life is yours. It's important that you also have your needs met and are able to live a full life.
Schedule regular "me" time.
To combat caregiver stress and potential burnout, schedule regular time where you take care of you. Self-care improves your mental health and physical health, emotional regulation, and resilience, and is an important part of your health care. You'll find that regular self-care will improve your relationships and mood and ease the stress you're experiencing as a caregiver.
Many primary caregivers find that over the years, they lose their sense of identity. You may find that you're sacrificing years of your life, and while you love your family member, you've lost your personal freedom or sense of self. Scheduling consistent time for yourself, even if it's something simple like listening to music in your car or going for an afternoon, can help you claim back your self.
Cultivate a support network.
Reach out to friends and family. For the people who know and love the diagnosed family member, discuss the grief you're experiencing. Share with your network of friends how the diagnosis is affecting you.
You might also find support in a caregiver therapy group or support program. Every 3 seconds, someone in the world develops dementia, and 33% of 85+ year old adults have Alzheimer's dementia. Finding community with other family caregivers for Alzheimer's, Parkinson's, or other neurological conditions would provide an additional layer of support and understanding for you. These types of groups may also have additional resources for dementia caregivers and family members.
Seek therapy.
Many caregivers find that therapy provides support and a place to discuss the difficult feelings they are experiencing. Caregiver counseling typically includes approaches like insight-oriented therapy, cognitive behavioral therapy, and family systems therapy.
Watching a parent or family member regress because of a neurodegenerative disease or condition could also bring up complex feelings about your own mortality. Folks often experience difficult emotions when contemplating their mortality, and death can be an uncomfortable thing to think about. Licensed therapists are equipped to talk to you about your concerns or uncomfortable feelings, and help you cope with difficulties as a caregiver, and as you navigate death as a topic.
In therapy, your therapist will consider the relationship between you and the care receiver and how it affects you. Your therapist could also work with you to correct irrational thoughts or perfectionist ideas about caregiving, while keeping your family structure and dynamic in mind. You'll work through grief and how it affects you, and learn how to cope with the situation you're in.
