Life Changes and Grief

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 I waited day in and day out for some information on what our life would look like once we were home, the anxiety and stress became overwhelming.  As I have shared before, stroke recovery is unique.  Everyone’s recovery and lifestyle changes varies but I now know that some changes are more universal.  The whole purpose of Stroke Caregiver Connection is to help you navigate these changes. 

Navigating without resources or being able to talk to someone who has been through cause additional stress and slowed down movement on learning how to cope with this new reality.  Feeling alone in this situation caused sadness, depression and grief.  The good news is that you can learn from my experience and the experience of others I have met to avoid landmines.  If you hit a landmine, it’s ok, we can help you because we have been where you are.

A few common changes…

For most stroke survivors and Care Partners, the changes seem to be more evident once at home and the survivor is medically stable.  It is when the day-to-day reality sets in and the realization that this is long term.

Emotional and personality changes following a stroke vary depending on the damaged brain area. Thankfully, many effects of stroke improve gradually. Time is in your favor. Their personality can change in the following ways; not feeling like doing anything, being irritable or aggressive, being uninhibited, saying or doing things that seem inappropriate to others, being impulsive, acting without thinking, and doing things that are not safe or appropriate.

The top three changes will be addressed in today’s blog but for additional information, visit www.strokecaregiverconnection.com.  

Depression

Consistent sadness and the inability to enjoy normal activities mark the mood disorder depression. A life-changing event, for example, a stroke, will change your feelings about limitations and your overall health. There is no one-size-fits-all description of depression. For example, situational depression can develop after you experience a traumatic event.

Depression affects approximately one-third of stroke survivors, significantly more than the 5–13% rate in the general adult population. Its untreated state can reduce quality of life and impede post-stroke recovery. If the following signs last longer than fourteen days, seek medical advice.

How do you and your loved know if it could be Depression…

• Persistent sad, anxious or “empty” mood

• Restlessness and irritability

• Feelings of hopelessness, pessimism, guilt, worthlessness or helplessness

• Loss of interest or pleasure in hobbies and activities, including sex

• Decreased energy and fatigue, and feeling “slowed down”

• Difficulty concentrating, remembering and making decisions

• Insomnia, early-morning awakening or oversleeping

• Appetite and/or weight change

• Thoughts of death or suicide, or suicide attempts

What can be done to improve the stroke survivor’s wellbeing and yours as well…

·  Talk to your healthcare provider. Receiving treatment not only improves the survivor’s mood, but it also boosts physical, cognitive recovery.

·  Social support is also vital. Findings reveal a connection between depression and reduced social support. Family, friends, a stroke support group, or a mix of these can provide the support you need.

·  Awareness of, and preparedness for, the survivor’s depression is crucial for all recovery team members. Survivors can ease their pain and start their recovery journey with the right treatment and support.

Apathy

Apathy is the lack of emotion or feeling, or lack of interest or concern. Giving this effect a name doesn’t make it easier to deal with, but at least you can understand what you are up against. In simpler terms, apathy means a lack of motivation to take part in daily life, as seen by a reduced level of goal-directed activity.

One out of every three stroke survivors’ experiences apathy. According to the American Stroke Association, the most effective way to combat apathy is through physical activity.

What actions can improve the quality of life for stroke survivors and their caregivers?

• List the activities you both loved, both together and separately. Given the limitations, plan weekly activities and determine any required adjustments. For instance: dinner and a movie, catching up with friends, or a walk in the park. Members of a support group recounted how they and their partner spent their days in parks or indoor spaces, walking or sitting. It’s become a daily habit for them.

• Look for things to do when you’re not with your loved one. Rick has developed taste issues and stopped eating out, but I have a few dinner clubs with friends. I take pleasure in yard work and landscaping, whereas he simply wants the yard to look nice without enjoying the work. I enrolled in a landscaping class and became a member of the local Botanical Garden.

• It’s important for all of us to be productive. A survivor’s contribution to the day improves their self-esteem and lessens depression. Create a weekly to-do list, considering constraints, then let the survivor finish it. Tip: Doing it yourself is sometimes the easiest option. This works briefly, but long-term maintenance is impossible; stress and resentment will result.

• Offer fewer choices and make them less vague. Instead of asking what they want to do or where to go, suggest options that you both would enjoy. For instance: Today, would you rather watch a movie or pay a visit to a friend? It offers choice but still enables participation in life.

• Embracing the now, letting go of past and future. His participation in life and recovery fell short of my hopes. Keep your expectations reasonable. Therapy can help you cope with the loss of your relationship and your grief. Every person is different, so what’s effective for someone may not work for someone else. With their professional skills and an array of tools, they can assist you.

• Your relationship wasn’t always harmonious before the stroke; you each had different passions. There’s no need for guilt; live your life even if they’d rather stay home. Several of my friends experience the same issues, and their loved ones have not experienced strokes.

Anger

While not universal, anger or aggression occurs in 11–35% of stroke survivors acutely and 19–32% within the first-year post-stroke. Strokes are life-changing, bringing a wave of different emotions to your loved one. This emotion, anger, can come in phases. Brain damage can cause problems with information processing and comprehension. They may get angry because of impulsiveness or an inability to empathize.

Despite individual differences among survivors, anger frequently stems from task frustration, communication problems, and a feeling of helplessness. Other triggers include fatigue, anxiety, overstimulation, and the behavior of others.

What can be done to improve the stroke survivors and caregivers wellbeing…

• Determine the cause of the anger. When identified, work to lessen or eliminate. In the long run, people can engage with a healthcare provider to gain strategies for adjusting their reactions to triggers. Completely avoiding triggers is difficult, even with a reduction in them, because life is unpredictable. The caregiver must team up with a health professional to gain anger de-escalation skills. Dial 911 immediately if you are in physical danger.

• Give yourself a breather. Exhaustion and frustration can heighten feelings of anger. Deep breaths and a moment of reflection can help prevent things from getting worse. Helpful coping strategies include deep breathing, relaxing music, meditation and prayer, physical activity, visual breaks, and emotional expression through journaling or art.

• A family’s reaction to anger is critical. Experiencing someone else’s anger is draining and painful. Addressing the issue right away will benefit you both. Effective diffusion approaches.

• Empathy. The survivor’s anger stems from their situation, not from you. To help survivors feel heard, focus on empathetic listening and responses, avoiding arguments. Despite the difficulty, responding calmly and deliberately can help diffuse anger, preventing escalation.

• Validate their feelings. Their limitations or insensitive comments often triggered anger. Communicating with your loved one is understandable.

• Loved ones and survivors can lessen anger by working together to minimize controllable triggers; for example, avoiding crowded places, encouraging rest to reduce fatigue, and celebrating recovery progress. Stroke survivors and their loved ones may struggle with anger after a stroke; however, recovery is achievable.