Finding enrichment and a new sense of purpose when your identity has become that of “caregiver”

REEVALUATING OUR CAREGIVERS NEEDS

This is our 4th post in our caregiving mini blog series....

Tami Howe and colleagues wrote an article in 2012 discussing the need to rehabilitate families in addition to our patients, and conducted a survey that revealed specific goals family members had for themselves during the rehabilitation process, here are the 7 categories that were identified based on the wishes of caregivers during the goal identification process:

1. To be included in the rehabilitation process, especially during the early stages

2. To be provided with hope and positivity

3. To be able to communicate and maintain their relationship with the person with Aphasia

4. To be given information

5. To be given support

6. To look after their own mental, emotional, and physical well-being

7.To be able to cope with new responsibilities

Some of the categories identified might seem obvious...that our caregivers want to be included in the rehabilitation process….they want to be given information and support. It should be inevitable that we provide our caregivers with many of these tools to help support them, so they can be a strong support for our patients with Aphasia. Perhaps we think we are doing a good job, and checking all of these off our list, but I encourage all of us to really delve into the specifics of these categories.

For instance, perhaps you feel you’re including the caregiver in the rehabilitation process but giving them updates on the progress of their loved one, but you’re not truly INCLUDING them in the rehabilitation process. What are you working on? How are you addressing it and how will this task that is targeting individual sounds help my loved one have a conversation again? What is the connection between what you’re doing here during your therapy session with how it’s going to impact his communicative abilities at home? How can I help to facilitate this?

Or maybe we’re thinking…”Of course I give caregivers information on Aphasia and stroke. I provide them with a handout during the initial assessment and give them a sheet that lists communication tips.” This is potentially a great start, but is it enough? Maybe we only provided verbal education and it is too much information to process at the early stages of rehabilitation, so the information was not retained or learned. Are we providing education visually, verbally, and perhaps even in a video or CD format? Are we providing ongoing education based on each individual’s recovery progression and how they’re responding to treatment? Education needs to be adapted, updated, ongoing to meet the changing needs of our patients with Aphasia and their family members.

In the final blog of this caregiver series, I will share some philosophies and words of encouragement that I often use to encourage caregivers to find fulfillment and hope in their disrupted lives.

Howe, T., Davidson, B., Worrall, L., Hersh, D., Ferguson, A., Sherratt, S., & Gilbert, J. (2012). ‘You needed to rehab … families as well’: family members’ own goals for aphasia rehabilitation. International Journal of Language & Communication Disorders.