I subscribe to a few dementia support groups on Facebook. These are safe, moderated, on-line spaces where people caring for their loved ones with dementia can share their stories, seek advice, and experience the solidarity of others who deeply appreciate what they are going through.
Many posts are from people who are almost single-handedly caring for a family member, and are experiencing what is known as compassion fatigue. They feel alone, unappreciated, burned out, resentful. The sense of overwhelm is palpable.
We know that “you can’t pour from an empty cup.” But how can you avoid becoming drained, especially if you can’t afford professional care? Here are some suggestions …
- Don’t try to go it alone
There are many reasons why a primary care partner might get find herself in a 24/7, 365 days-per-year commitment to caring for a loved one with dementia. From marriage vows and personal promises, to a deep sense of responsibility or a belief that nobody can do the job as well as you can, to a fear that asking for help might make you look less than competent – these and more reasons can stop you asking for help. But the truth is that you don’t have to do it all, you CAN ask for help, and it will be a lot better for you and your loved one if you share the responsibility with others.
- Stop trying to protect others
Ironically, we sometimes try to protect others from playing an active role in supporting a loved one with dementia, while burning out ourselves. Before asking for help, we assume that they are too busy, or don’t want to be involved, or that they won’t be able to cope with how the person is changing. And yet, none of that may be true – and we may be denying both parties precious opportunities for connection.
- Share what works with others
It’s time to get dementia out of the closet. It’s time to get rid of the stigma that disconnects people with dementia from the people, places and experiences that give their lives meaning. Let’s share with family members and friends how to communicate with a person with dementia, so that they can continue to play an active role in your loved one’s life.
- Draw up a roster – and stick to it
When Mum was diagnosed with dementia, we drew up a roster of visits and activities to keep her stimulated and connected. Friends and family members visited regularly for a cup of tea, or to take her shopping, or out for a walk, or to her house church group. A driver fetched her for her regular hair and beautician appointments. This regular rhythm of appointments created structure in her life, and ensured that every day of the week, someone would be there to check that all was well.
- Make time to do things that bring you alive
Once you have established a roster, make it work for you too. Go for a long walk at the beach, meet a friend for coffee, go to a movie, take a dance class, have a nap, lie under a tree and read a book – whatever your body and soul are longing for.
Let’s all keep connected to life, love and meaning!