I Didn’t Know What to Ask — A Caregiver’s Reality.

During the initial crisis and beyond the caregiver/care partner becomes the medical care navigator for themselves and the stroke survivor.  A stroke comes suddenly and no one has time to prepare, so when placed in that situation, knowing what and when to ask questions is vital to your wellbeing and the overall recovery of the stroke survivor.

Healthcare providers, including physicians, nurses, and therapists, would routinely ask questions upon entering my husband’s room. Once their assessment of his recovery status was complete, they would ask me, “Do you have questions?”  My head was filled with questions that they could not answer.

·         Why did this happen to us?

·         What will he recover and when?

·         How do we turn back time?

·         What will our life be like going forward?

·         How can I handle all of this?

A frustrating reality for brain trauma is that it is time sensitive.  The healthcare team wants to answer those questions, but brain healing is kind of ‘wait and see’ situation. One additional challenge is that, while all brains present identically, the extent of brain recovery after a stroke is unique to each survivor. The team can give you an idea of what to expect based on the stroke’s location and their patient experience, but recovery is different for everyone.

Stroke Caregiver Connection was founded with a mission to provide the caregiver with the resources and support needed to navigate this new world.  It is important to know what to ask and when, but also how to prepare for an office visit.  Because the doctor might only have 15-20 minutes, preparation will ensure a more productive and less stressful visit.

Key Questions to ask and When

Stroke recovery happens at different stages.  The crisis phase is when the stroke initially occurs through their hospital stay.  The rehabilitation phase is when they are transferred to an inpatient facility for physical, occupational and speech therapy. The home phase is the adjustment and ongoing care of the stroke survivor. 

The top three questions for each phase will be addressed in today’s blog but for additional information, “Stroke and the Caregiver” available on Amazon or www.strokecaregiverconnection.com.

The crisis phase

·         What type of stroke and where?  The type of stroke and location will determine the plan of care for the healthcare team.

·         What is the extent of the damage and what does that mean? Knowing the extent and then understanding what that means will allow you to be able to make better decisions regarding their care. 

·         What is the primary concern for today and the care plan?  Knowing realistic expectations for the day allows the caregiver to better understand what they are dealing and that brain recovery is a slow process.  We all hope for 100% recovery, but when our expectations are more realistic, we are better able to deal with the crisis.

The rehabilitation phase:

·         What is a realistic expectation for ongoing recovery?  The neurologist is the best source for providing this information.  Remember, every patient responds differently but this can provide at least a baseline for what to expect.

·         What is the rehabilitation plan and my role? The therapist at the facility is the best resource to answer this question. 

·         What signs of recovery are we looking for?  When a therapist shares, they had a great day, we automatically go to then have fully recovered.  Reality is that a great day may be that they walked two steps or were able to speak a few words. 

The at home phase:

·         What is the plan of care? This is a practical question, medications, ongoing therapies, and when to call for medical help.

·         What changes need to be made to provide a safe environment?

·         What can I expect once the stroke survivor is home?  For me, I was taken back by the amount of sleep he required.  No one shared that it is normal to sleep 18-20 hours.  The brain is still in recovery mode and sleep helps.

How can health professionals help?

As a retired nurse, I’d ask families if they had questions. If they said no, I assumed my explanation was crystal clear.  I’ve learned that when I, as a caregiver, say “no questions,” it really means I’m too tired, overwhelmed, and scared to even think of what to ask.

Share this blog on your next office visit. It’ll help your care team understand your needs and how to ask for what you need more effectively.

Tips for healthcare professionals when asking “Do you have any questions”

·         Assess what they heard and understood.  Ask the caregiver to share what they will need to tell family regarding progress and next steps.

·         Rephrase how you ask for questions.  A great tip is to share “this can be overwhelming, the typical questions that I get ask are…”

·         Check in with the caregivers.  How are they spending their time?  You’ll get the answer of I’m ok, but it’s better to pull them aside and ask them how things are.

You are not alone and Stroke Caregiver Connection was developed to support you.  If you need additional information, support or resources. Please reach out.

How I can help you

As a care advocate, I’m available to other caregivers for consultations on various topics. Frequently, it’s a practical question, yet the real value is my consultation on your present and future aspirations. My healthcare background and caregiving experience are my strengths. Many people shared “I Get It.”

If you would like to arrange a consultation, either email lana@strokeandthespouse.com or go to my website www.strokecaregiverconnectrion.com and connect with me.