A guide to Neuro rehabilitation journey for family and caregivers
Neurological rehabilitation consists of a journey aimed at helping people with injury, disease or disorders of the nervous system. This journey often increases function, looks to ease symptoms and improve general quality of life. Conditions that may benefit from this type of rehabilitation include vascular disorders, infections, trauma, episodic disorders, degenerative disorders or structural disorders (John Hopkins N.d.). This holistic therapy is meticulously crafted by an extensive list if specialists to best fit the individual and to optimise support and recovery. The caregiver’s role within neurorehabilitation is vital for supporting their loved ones during this journey and may be expected to educate themselves and to create a supportive environment. They encourage and motivate during therapy sessions and exercises, accompany loved ones to appointments and offer emotional support throughout (MRC 2023). Family members have the same role to play, both also needing to provide practical support, such as aiding day- to- day activities, managing medications, appointments, advocating and communicating for their loved ones during this journey (NeuLife N.d.).
Your Role in Recovery: How Caregivers Make a Difference
Caregivers and families caring for loved ones undergoing neuro rehabilitation journeys accept assisting the personal needs, physical and emotional, for their loved one. They aim to maintain dignity, motivation, self- esteem and general quality of life. Personal care may include physical activities such as bathing, dressing and grooming, other aspects may be meal preparations and maintaining daily medications (Grant 2023). Caregivers provide consistent and effective care to their loved ones in a safe, comforting and known environment during their recovery. This level of personalisation is difficult to achieve by specialists alone, as well as in the intimidating environment of a clinical or hospital setting. Caregivers’ familiarity allows patients to engage in their neurorehabilitation journey and fit it into the context of their lives, which has a huge positive impact on the patient’s psychological well-being and mental health during this journey (Reach 2024). Their role is to balance encouragement with realistic expectations during this journey of rehabilitation, ultimately providing practical support to their loved one.
Navigating the Rehab Team: Who Does What?
As a caregiver you will be introduced to a team of specialists during your loved one’s neurorehabilitation journey. Becoming familiar with the team and what each healthcare professional does can make this process easier for all parties involved. The Rehabilitation Team will be specific to the individual and their needs, however in general the following are what you can expect as key professionals. Physiotherapists specialise in movement and focus on prevention, identification, assessment and treatment that aims to improve or regain movement functions. Occupational therapists concern themselves with enabling the patient to participate in activities of everyday life, promoting health, and engaging in self- care, work or leisure. Speech and language therapists specialise on communication, voice, speech, swallowing, feeding and language, whilst providing assessments, diagnosis, treatments and support to maximise the patient’s potential. Psychologists are there to promote psychological well- being, engaging the individual in work, meaningful relationships and activities. Social workers will work closely with caregivers and family members that are experiencing disadvantage, social or emotional issues (Physiopedia N.d.). There are a variety of professionals within this team all working together to optimise recovery for the patient and it is important to keep communication open with the rehab team to be aware of the whole process, have your own say and advocate for your loved one’s needs.
The Emotional Rollercoaster: Managing Stress and Burnout
Another crucial aspect of this journey and supporting your loved one is also being able to recognise your own emotional challenges and needs, being able to recognise your own signs of burnout. Taking care of yourself is vital when caring for someone else, supporting a love one can be emotionally and physically exhausting, so is important to remember to care for yourself as well, whether that be by getting enough sleep, eating healthy or seeking support if you need (NeuLife N.d.). Overtime, tasks such as assisting your loved one physically to support lifting, mobility or moving can take a toll on yourself, such as potential back pain or muscle strain. There are a variety of ways carers and family members can look after their own physical health, such as speaking to healthcare experts about useful exercises, maintaining a healthy diet, attending routine health checks and having a restful environment to improve sleep quality. The mental and emotional health aspect is equally important as it is common for caregivers to experience levels of stress, anxiety, depressions, burnout and mental exhaustion. By deploying an adequate amount of self- care, the emotional well- being of carers can be protected, such as using mindfulness practises and meditation to reduce stress. Staying connected with other family members is also vital for carers’ mental health, there are also communities available of people in similar situations to talk about your experiences. It is also encouraged to seek help from mental health professionals if and when is needed and requesting and accessing respite care where possible (Skills for Health 2024).
Building Independence: Helping Without Hindering
Caregivers need to be able to discover the fine line between helping without hindering, building confidence and independence whilst also not leading their loved one to become purely reliant on them. This journey is about encouraging autonomy and celebrating the small wins in daily activities, striving for greater independence from them. This will enhance the quality of life of their loved one and encourage better self- image and emotional well- being. Building independence also contributes to regaining and maintaining dignity of the individual and prevents them from becoming overly reliant on the caregiver (Vikki 2023). There is also a plethora of home modifications caregivers can access to help further improve accessibility and independent movement within their home environment, such as doorknob extenders, tub transfer benches, rails, non- slip bathmats, night lights, removing rugs toa void falls, clear walkways, locks raised toilet seats and more (Flint Rehab 2024).
Hope, Progress, and Patience: Celebrating the Small Victories
The power and influence of family and caregiver’s roles within neuro rehabilitation is not to be underestimated, celebrating every victory and having a support system is crucial for this process. NeuLife (N.d.) provides two cases of success stories, highlighting the impact of caregivers and loved one’s support. Such as ‘story 1’ about Michael, who with the support of his family emotionally and physically, was able to work alongside specialists and regain much of his physical and cognitive function and return home after suffering a brain injury in a car accident. ‘Story 2’ details a neurorehab journey of a man who, after suffering a car accident and a coma, who wanted to run competitively again, and his family supported him through months and months of physical and cognitive therapy to help him achieve this goal. Measuring progress matters within this recovery journey, tracking the rate of improvement and possibly areas lacking, no matter how small, everything matters within this process (American Stroke Association 2024).
References
American Stroke Association. (2024). 15 Things Caregivers Should Know After a Loved One Has Had a Stroke. [Website]. Available at: https://www.stroke.org/en/help-and-support/for-family-caregivers/15-things-caregivers-should-know-after-a-loved-one-has-had-a-stroke
Flint Rehab. (2024). 15 Home Modifications for Stroke Patients to Improve Safety. [Website]. Available at: https://www.flintrehab.com/home-modifications-for-stroke-patients/
Grant, S. (2023). Importance of Caregivers and How They Make a Difference. [Website]. Available at: https://rtmedhealth.com/how-caregivers-make-a-difference/#:~:text=They%20assist%20with%20your%20loved,struggle%20with%20these%20basic%20tasks.
John Hopkins Medicine. (N.d.). Neurological Rehabilitation. [Website]. Available at: https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/neurological-rehabilitation
MRC. (2023). Understanding Neurorehabilitation: A Guide for Patients and Caregivers. [Website]. Available at: https://rehabindia.org/blog/understanding-neurorehabilitation-a-guide-for-patients-and-caregivers/#:~:text=Caregiver's%20Role%20in%20Neurorehabilitation&text=Create%20a%20Supportive%20Environment%3A%20Adapt,sessions%20with%20your%20loved%20one.
NeuLife. (N.d.). The Crucial Role of Family Support in Brain Injury Recovery. [Website]. Available at: https://neuliferehab.com/the-crucial-role-of-family-support-in-brain-injury-recovery/#:~:text=One%20of%20the%20most%20important,security%20during%20a%20difficult%20time.
Physiopedia. (N.d.). Rehabilitation Team Members. [Website]. Available at: https://www.physio-pedia.com/Rehabilitation_Team_Members#:~:text=While%20during%20the%20post%2Dacute,balance%2C%20strength%2C%20cardiovascular%2C%20gait
Reach. (2024). The Power of Home-Based Brain Injury Rehabilitation. [Website]. Available at: https://reachpersonalinjury.com/the-power-of-home-based-brain-injury-rehabilitation/
Skills for Health. (2024). The importance of self- care for caregivers. [Website]. Available at: https://www.skillsforhealth.org.uk/article/the-importance-of-self-care-for-caregivers/
Vikki. (2023). The Vital Role of Caregivers in Promoting Independence. Lifestyle- homecare. [Website]. Available at: https://www.lifestyle-homecare.co.uk/the-vital-role-of-caregivers-in-promoting-independence-for-older-adults/#:~:text=Adaptive%20Equipment%20and%20Home%20Modifications,ergonomic%20furniture%2C%20further%20promoting%20independence.