[BLOG POST] Dear Caretaker of a Brain Injured

• Veronique Theberge

Many think that a brain injury only happens to the person who sustained it, but the reality is that it also affect people in their network. Although it happens to a particular individual, it is very much a family affair. Getting our heads around it can feel overwhelming, but know that you are not alone experiencing this roller coaster of feelings and changes.

In this blog, I’ll break down how brain injury can affect family members/carers & I will put forward various strategies that can be helpful in supporting that dear person in your life. Lastly, I think that it’s also super important to touch base on ways in which you can best look after yourself as a family member or carer.

How does brain injury affect family members/carers?

Everyone’s challenges may slightly differ, but there are also lots of commonalities in how the whole family can be affected. To name only but a few:

• Less personal time
• Financial difficulties
• Role changes within the family
• Problems with communication
• Lack of support from family/friends

Brain injury is a significant and often stressful event and family members can also go through a range of emotions such as anger, sadness, anxiety, frustrations and guilt.

Some can also find it really hard to see how much their loved one has changed. There might be a grieving process for them too which is often referred to as ambiguous loss. Everyone needs to build their resilience in this type of situation so regardless of where you are sitting on the fence, there is always a learning curve.

How family members/carers can help?

There is a variety of ways in which you can support someone recovering from a brain injury once they get to come back home.

• Attend medical appointments or therapy with them
• Ask your loved one’s GP or treatment team about ways in which you can support them
• Work together on establishing a daily routine that works for all of you
• Ensure the person isn’t getting too fatigue or flag to them when fatigue is starting to set it.
• Communicate with them, keep them involved in decision making and make sure they remain involved in daily activities
• Be honest, but positive. A good way to do this is by focusing on the gains experienced.
• Avoid comparison between the “old me” and “new me” as comparison is indeed the thief of joy.
• Remain respectful; talking down can trigger other emotional issues such as anger, lack of confidence, negative self-image or low self-worth
• Keep a calendar on the wall so everyone is aware of what is on the upcoming agenda
• If memory problems are in play, create an album with pictures and names of familiar people and places.
• Break activities or tasks down in simple steps and review each steps as they come along
• Avoid situations or settings that could lead to sensory overload. E.g.: Have one or two visitors at a time, avoid crowded places, minimize incoming senses to process (visual, auditory, tactile)
• Give your loved one additional time to respond or complete a task.
• Ensure that their environment is safe. E.g.: Avoid clutter, adequate lighting, and limit access to potentially dangerous areas or substances. We want to avoid the potential of additional injuries.

It can be a fine line between giving too little or too much assistance. Make sure you get regular feedback from the person who’s had a brain injury as they will be able to guide you further and asking the questions may take away some of their insecurities too.

How can you look after yourself as a family member/carer?

It’s important to remember that you can’t pour from an empty cup so sometimes you have to take care of yourself first in order to be helpful to your loved one. Navigating brain injury recovery can be stressful for everyone involved. Managing your levels of stress and ensuring that you are sufficiently rested plays an important part in allowing you to support your loved one to the best of your abilities. They need you healthy and rested so here are some ways in which you can look after yourself too:

• Learn to relax (breathing exercises, mindfulness, meditation, etc.)
• Explore new coping strategies as the previous ones may not be adequate anymore

– Keep your schedule regular

– Exercise regularly

– Keep some time for yourself

– Join a carer support group

– Find the humor in some of the situations that arise

– Ask for additional support

– Delegate some tasks

• You can only solve one problem at a time. Identify the problem and discuss with your loved one different ways to solve an issue. Once you settle on a way forward, don’t be bound by it if it doesn’t quite get you the desired outcome.

It’s okay to revisit your options and try something else.

In conclusion, brain injury recovery comes hand in hand with trials and errors. You don’t know what you don’t know right? It’s okay to make mistake and review your perspective. The important thing is to take on board those to maximize how the family unit manages all the changes that may have occurred and optimize overall recovery.

Source

[Infographic] How to Support Someone Impacted by Trauma

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[BLOG POST] Intentional Living After TBI – Brain Injury Blog

Intentional Living After TBI

Finding your way after a stroke, ABI, MBI, TBI, Concussion, and related conditions is uncharted territory in every sense of the word. Intentional living not only defines the attitude that will help you work toward improvement, it also defines how you will continue to live going forward.

For every case that takes a definitive route, and a measurable outcome, others can spend a lifetime making even a portion of headway that others may achieve.

When anyone claims to know the way, it’s only because that’s the way that works for them. There’s no other way to say it. Rehabilitation after a TBI (no matter what variety) is always on a case-by-case basis, with progress being made according to many variables and factors.

Cognitive rehabilitation should be left to professional clinicians, and follow-up cognitive growth can be an independent venture – and best if applied in line with your doctor’s overall plan. I’ll be excerpting some information from the book “Brain Injury – It is a Journey” that is an excellent resource for families of TBI survivors that are helping someone they love to begin their journey.

*In the book, there are tons of resources, but one of the most poignant points are in these simple checklists:

Changes After Brain Injury

Changes in a person after a brain injury depend on which areas of the brain are affected and the severity of the injury. Use these lists to check mark affected areas.

These will change over time as the person progresses. Possible consequences of a brain injury includes:

Physical consequences

– Headaches

– Seizures

– Muscle spasticity

– Weakness or paralysis

– Balance and coordination difficulties

– Changes in vision or hearing

– Loss of smell or taste

– Difficulty swallowing

– Changes in appetite

– Increased sensitivity to smells, light or sound

– Changes in sensitivity to touch

– Fatigue, increased need for sleep

– Changes in sleep patterns

 

Cognitive (thinking and learning) consequences

– Amnesia

– Short-term memory loss

– Long-term memory loss

– Slowed ability to process information

– Difficulty organizing and planning ahead

– Poor judgment

– Inability to do more than one thing at a time

– Lack of initiating or starting activities

– Easily distracted

– Disoriented or confused to surroundings

– Shorter attention span

– Repeatedly says or thinks same thing

 

Communication consequences

– Slurred or unclear speech

– Difficulty finding the right word

– Difficulty staying on topic

– Trouble listening

– Dominating conversations

– Difficulty reading

– Rate of speech too fast or too slow

– Things taken too literally

– Difficulty understanding what is said

 

Emotional/Behavioral consequences

– Increased anxiety

– Depression

– Self centered behavior or thinking

– Easily irritated, angered or frustrated

– Overreacts, cries or laughs too easily

– Different sexual behavior

– Impulsive, acts or talks without thinking

– Mood swings

– Stubbornness

– Dependent or clinging behavior*

[…]

more —>  Intentional Living After TBI – Brain Injury Blog With Free TBI Information

[WEB SITE] Stroke Recovery

Learning to live a normal life after stroke is possible. Learn to take an active approach, adapting new limitations, and finding support for a life after stroke.

Source: Stroke Recovery

[ARTICLE] The relationship between caregiver impacts and the unmet needs of survivors of stroke – Full Text HTML

Abstract

Background

Caregivers play a crucial role in meeting the needs of survivors of stroke. Yet, little is known about how they are impacted by their caregiving role.

Objectives

To describe the relationship between survivor long-term unmet needs (>12 months) and caregiver impacts, and identify characteristics that are associated with reported moderate to severe impacts on caregivers.

Method

This was a cross-sectional survey using data from the Australian Stroke Survivor and Carer Needs Survey. Community dwelling adults 12+ months poststroke and their caregivers participated. Caregivers and survivors were asked about the extent to which the domains of work, leisure and family, and friend and spousal relationships had been impacted using a Likert scale of responses. The extent to which survivor needs were being met was measured over the domains of health, everyday living, work, leisure, and finances, and the total number of unmet needs was calculated. The association between survivor unmet needs and caregiver impacts was assessed using multivariable logistic regression adjusted for caregiver and survivor characteristics.

Results

Of the 738 completed survivor surveys, 369 contained matched caregiver data (survivors: median age, 71 years; 67% male) (caregivers: median age, 64 years; 26% male). For caregivers, the domains of work, leisure, and friendships were most impacted. The odds of a caregiver experiencing moderate to extreme impacts increased with the number of reported survivor unmet needs. This was greatest for spousal (aOR [adjusted odds ratio]: 1.14; 95% CI [confidence interval]: 1.07, 1.21; P<0.001) and friend relationships (aOR: 1.14; 95% CI: 1.07, 1.21; P<0.001). Caring for a survivor who needed daily living assistance was associated with moderate to extreme caregiver impacts across all domains.

Conclusion

Caregivers of survivors of stroke experience large negative impacts, the extent to which is associated with survivors unmet needs. Targeted, long-term solutions are needed to support survivors and caregivers living in the community.

Continue —>  The relationship between caregiver impacts and the unmet needs of survivors of stroke.