Grief is a universal emotion experienced throughout one’s lifespan. And while it brings about complicated and difficult feelings in any situation, dealing with dementia adds another layer of complexity. Your loved one may still be alive, but you are already feeling the weight and pain of the impending loss as well as the loss of the person you used to know. Goodbyes are already painful, but when dementia makes them long and drawn out, it’s even more difficult.
This is called anticipatory grief — also referred to as dementia grief — and it is very common among loved ones and caregivers of people with Alzheimer’s and dementia. Memory loss and personality changes within the person with the disease can cause caregivers and loved ones to feel as though they are already gone.
Rollercoaster of emotions
If you are feeling these complex emotions as a caregiver, you are not alone. From anxiety and dread to sadness and longing, all of these feelings are common as you await the passing of a loved one struggling with dementia. As you spend more and more time caring for your loved one, you may also be feeling a loss of independence, which can lead to bitterness and guilt. Whatever emotions you’re experiencing at any moment in the grief process, remember that these are all normal feelings.
How to cope
Caring for and loving a person with dementia can be overwhelming, and it can be easy to neglect your own health and wellbeing. Here are some tips to help you deal with confusing emotions, take care of your loved one with dementia — and take care of yourself along the way.
1. Face your feelings
Let yourself feel whatever you are going through, from sadness and anger to guilt or bitterness. These emotions are healthy, and it is common to feel conflicted. Realize that you may experience multiple emotions at once and try to accept that it is all part of the grieving process.
2. Learn as much as you can about Alzheimer’s and dementia
The more you learn about the actual disease, the more prepared you’ll feel for future challenges. Your knowledge will help you manage your expectations and can help reduce your frustration going forward. Search for books, workshops, online trainings — whatever method helps you learn best. You can also do research to brush up on your caregiving skills in general.
3. Plan ahead
Even if the disease is in early stages, the cognitive and physical regression of dementia will eventually take its toll. Your loved one will eventually require help around the clock. Start planning now for future housing and long-term care. Allowing your loved one to be involved in the decision-making will ensure their wishes and opinions are respected.
4. Ask for help
You cannot do it all on your own. Reach out to family members and friends to help with daily tasks and stresses. Keep up with your regular hobbies and things that make you happy. Taking time to rest and recharge will help you give higher quality care and feel better overall.
5. Talk to someone
In addition to getting help with your caregiving duties, make sure you have someone you trust to talk to about your grief. This could be a licensed therapist, a chaplain or cleric from your religious tradition, or simply a loved one who will provide an understanding, listening ear.
There are so many resources available — in the community and online — to help you provide excellent care as well as take care of yourself on this journey.
To search for caregiver support groups in your area, visit: Alzheimer’s Association.
For a free senior care consultation, visit: Arthur’s Senior Care.