Grief doesn’t only happen after someone dies. With dementia, feelings of loss are present from the moment of diagnosis – for the person with the disease and the people close to them.
It’s often referred to as anticipatory grief. Sometimes it’s called ambiguous loss. That’s because the person with dementia is still physically present, but they may not be mentally and emotionally present in the same way they were before.
If you’re caring for a family member with dementia, you may be grieving a variety of losses. Your hoped-for future together. Changes in your relationship. Your sense of optimism. Your own independence as you assume more and more caregiving responsibilities. Your financial security.
According to WebMD, it’s a “natural, expected response to caring for someone with a long-term or incurable illness. It’s real. You can’t ignore it and hope to just power through it.”
If you’re looking after someone with dementia on a daily basis, this sense of loss is ongoing. And you may feel it more deeply than anyone else in the person’s life.
At times, you may be overwhelmed by anxiety, dread, or profound sadness. At others, you may feel angry, bitter, resentful, or powerless. Sometimes it may be hard to know what you’re feeling.
It’s natural to want to avoid the pain. The trouble is denying your feelings only intensifies and prolongs the pain.
That’s why it’s important to find outlets to express your feelings, whether it’s through a support group, a counselor, a good friend, or within a private journal.
Even if you think you’re coping well, and you’ve got your feelings “under control”, chances are you’re under more stress than you realize. You may not be consciously suppressing your emotions. You may genuinely be unaware of them – until one day they burst to the surface without warning. It may only take a minor incident to “set you off”.
For that reason, it’s important to seek emotional support, even when you don’t think you need it.
You may be reluctant to share your problems because you’re worried it will reflect poorly on the person you love. But you can be having a hard time and still deeply love the person you’re caring for. Telling your story and being heard can be an important first step in processing your feelings of loss.
Dementia is a scary diagnosis, and so you may be reluctant to spend too much time thinking about where it leads.
That said, learning all you can about dementia – what to expect, supports available – allows you to make plans and gives you a sense of taking action. As WebMD puts it: “You can’t avoid what will happen, but you can have a say in how it happens.”
Because dementia is incurable and irreversible, it’s easy to lose your sense of hope. You may find yourself focusing on setbacks and getting caught up in fighting one fire after another.
But according to Denise Larsen, Professor of Counselling Psychology at the University of Alberta, it’s possible to find hope in even the most difficult circumstances. She suggests taking small steps like looking for small signs of hope in your life like a call from your grandkids or the smell of baking bread and the way it reminds you of good times.
Another way of taking small steps is to think about what you hope for in the near future (e.g. what do you hope for this week?) and not just in the distant future.
“Hope is a choice,” she says. “You need to take care of your own hope or you will not have that resource to offer your loved one.”
If you’d like to talk with someone who understands what you’re going through, we’re here to listen. Everyday, we help people who are caring for family members with dementia. Talk things through with one of our senior living advisors.
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