There are very few things that are more disorienting than the shift from being cared for by your parents to caring for your parents. The only thing that makes it harder is when your parent (or a spouse) has dementia. This is quite possibly the most challenging of all situations.
The biggest challenge faced by dementia caregivers is ambiguous loss. Ambiguous loss refers to a loss that is unclear, that has no resolution or closure. This term applies to situations to a family member who is lost but still present in some way. One example of this is divorce where you might be co-parenting with someone you’ve lost but is still physically there. And another is when a loved one has dementia — where you’re losing someone while he or she is standing right in front of you.
There are so many things that make the loss associated with dementia ambiguous. It’s a situation that’s almost impossible to make sense of and that makes it hard to cope even with day-to-day responsibilities. Who is this person and who are you? These are questions you can no longer easily answer.
Very few people around you will know how to support your loss. You are in a limbo that all too often goes unnoticed (or denied) by the larger community. Perhaps it is convenient for society to let unpaid family caregivers deal with dementia patients on their own.
Here are a few things you can do to cope during this tough phase!
Accept the Ambiguous Loss
When caring for someone with dementia, loss and grief are complex and ongoing. So, it’s enormously helpful to acknowledge that its complicated! When you’re living with someone who is part here and part gone, you’re navigating an ongoing loss from which there is no moving on. In fact you are re-negotiating and re-grieving on a regular basis.
This is a messy and unending process. So, when you notice a new loss — small or large, give yourself permission to grieve it.
Challenging Behaviour is the Dementia, not your Loved-One
Your life is getting harder. Someone you love so much, your parent or spouse, is losing precious parts of him or herself and things are changing. This is just how it’s going to be from now on. There’s nothing you can do to prevent it or to stave off its impact.
On a practical level, the real power and peace comes from recognizing and acknowledging that there’s a new complexity to your life and that “normal” looks different than it used to.
Accept the Change
On an emotional level, a new sadness will now be part of your emotional fabric forever. But, it’s okay. You can handle it. As old ways of doing things change and new ways always emerge. Going through this major transition and learning to adjust to this new normal will change who you are. But, over time you can learn to recognize the beauty and strength in this new you. You will gain resilience and strength. These actions create new brain patterns that change who you are. And, even though the change is hard, chances are you’ll come out the other end liking this new you very much.
When dealing with a loved-one with dementia, always remember the person and not the disease.
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