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Section 7

Make room for the uninvited hitchhiker: Grief

The reality of grief is this:

It’s not a linear journey - especially in the context of dementia. When you’re on the road, grief can be likened more to sneaky potholes, black ice, or the occasional downpour when you are particularly burdened by the sad, heavy weight of watching your person change.

Dementia is often referred to as “the long goodbye” because you may experience grief before the actual loss of your person. You may even experience grief over and over as pieces of your person are lost slowly over time.

Here are some terms for tough feelings you may be experiencing:

Ambiguous Loss

The name kind of says it all. Ambiguous loss is a sense of loss without a definitive endpoint (such as death). There are two main types of ambiguous loss:

  • When a person is physically present but psychologically absent (as with dementia).

  • And the opposite: when a person is psychologically present, but physically absent. (For example: if a loved one goes missing or is in a situation where their physical presence and/or return is uncertain, such as a military deployment.)

Ambiguous loss can be particularly stressful because it doesn't fit the typical grieving process. There is often no closure, and those experiencing ambiguous loss may struggle with feelings of confusion, helplessness, and a sense of being "stuck" in their grief. It is also a bit “invisible” because there is no particular event for your support network to respond to or set of standard practices for them (or you) to follow.

Seeing a therapist or attending a support group specific to ambiguous loss can help you navigate the complex emotions associated with this type of grief.

Anticipatory Grief

This is the grieving that occurs before an expected loss. In other words, the emotional and psychological preparation for a loss that is yet to come. Anticipatory grief can be experienced by family members, friends, and even the person with dementia.

Because anticipatory grief means being aware that a death is likely to occur, there are naturally a range of complex feelings involved. From sadness, anxiety, and fear to anger, guilt, and relief (yup, we’ll get there), it’s normal to experience a rollercoaster of emotions as you grapple with wanting to ease your person’s suffering while simultaneously dreading their loss.

Anticipatory grief can offer an opportunity for reflection, closure, and meaningful connections with your person, whether that is addressing unresolved issues or making final memories together.

Guilt and Shame

You know
“Oh, the places you’ll go!”
but no one really prepares you for “Oh, the guilt you will feel!”

Dementia caregiving comes with its own special brand of guilt and shame, which can show up in:

  • Perceived inadequacies: “I’m not doing enough.” “I’m not providing the best care.”

  • Poor self-care: “I should be able to handle this on my own.” “I can’t ask for help.” “I need to put their needs before my own.”

  • Difficult decisions: “It was selfish to put them in a care facility.” “Maybe it was too soon for these meds.”

  • Unresolved conflict: “Maybe if I’d been a better daughter...” “He never apologized for…”

  • Resentment: “I wish this was over.” “Why is this happening to me?” “If only they were less of a burden.”

  • Changing roles and new boundaries: “It’s awkward to help him shower.” “I don’t know what she would do in this situation.”

  • Societal expectation: “I’m the daughter, I should be handling this.”

  • Emotional shame: “How can I get so frustrated when I’m supposed to love them?” “I should be more patient.”

  • Stigma: “It’s embarrassing.” “I don’t want anyone to know.”

  • Social isolation: “I’m such a bad friend.”

  • Personal identity: “I’m never going to find a partner/finish school/get that promotion.”

Bottom line

Caregiving is HARD and guilt and shame are totally natural responses to hard. As much as you need your squad for external support, you also need to practice self-compassion. Remember: you are doing your best in a challenging situation. Take care of yourself.

The Relief of Grief

We’ll say it. You’re not an a**hole if you feel a sense of relief when your person passes away. Someone you love is free from suffering, you’d actually be an a**hole for not taking some comfort in that.

You may also feel relief from the physical and emotional exhaustion of caregiving. It’s okay to appreciate a good night’s sleep or not having to worry 24/7.

Remember that ambiguous loss? Death can provide a sense of closure that finally allows you to grieve and heal.

Hot Mess Express,
Many Miles Ahead

Grief is complicated and everyone experiences it differently. A hot mess of emotions is normal. Just remember that different emotions can coexist. You can be relieved AND heartbroken and be a totally normal, loving person.

Your Roadside Emergency Kit: Coping Strategies

First things first - you are not alone. Now is the time to tap into your social, spiritual, and community support resources. You may consider joining a bereavement support group (hint: HFC has these too!), seeking support through your place of worship, and making time to spend with supportive friends or family members.

Second, there really isn’t a roadmap to grief. It’s more of a “ride-the-wave” analogy. Our friends at CaringBridge offer these coping strategies to deal with grief and loss:

  • Allow yourself to grieve in your own way

  • Seek out a grief counselor or support group

  • Take time out for self-care

  • Be around the people you love

  • Allow your faith to comfort you

  • Surround yourself with memories

  • Allow time to do its work

Hot Mess Express
Those big feelings might be:
  • Ambiguous Loss: a sense of loss without a definitive endpoint (such as death).

  • Anticipatory Grief: the emotional and psychological preparation for a loss that is yet to come.

  • Guilt and Shame

  • Relief

  • Allow yourself to grieve in your own way

  • Seek out a grief counselor or support group

  • Take time out for self-care

  • Be around the people you love

  • Allow your faith to comfort you

  • Surround yourself with memories

  • Allow time to do its work

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