Practical advice for new caregivers
Recovering from a stroke can be a difficult and confusing situation for the patient and their caregiver.
In general, a caregiver of a neurological patient is considered the person who takes care of the patient, e.g. nursing staff in the acute phase, relatives (spouse, mother, siblings, daughter, son, etc.). Below you will find ideas that will help you better cope with the recovery process of a person who has suffered a stroke.
Advice is also provided on how to communicate with your healthcare team to manage the effects of a stroke.
Emotional support
Common feelings experienced by patients and their families after a stroke are initial shock, feeling helpless, and anxious. Immediately following a stroke, it is not uncommon to feel overwhelmed, scared, and unsure of your new role as a caregiver.
These feelings may be a result of your loved one’s severely limited physical function and personality changes. You may also fear that a second episode may follow and that it is your duty to help prevent it.
Your relationship with your loved one is also disrupted. In addition to your previous responsibilities, you may need to take on more household chores and other tasks that your loved one used to handle.
To help you adjust to your new responsibilities, this section will help you find the emotional care and support you need from your community, family, and friends.
Get informed!
By increasing your knowledge about what a stroke is and what to expect, you may feel more in control and less overwhelmed.
- Learn more about AEE. It is important to learn the signs and symptoms of a stroke in case a second one occurs.
- Learn more about the effects of a stroke. You can contact specialized doctors and physiotherapists, who can give you initial guidelines and advice.
Find support in others!
- Talk to family and friends. Talk to your family and friends about what you are going through. Visits, phone calls, emails, or some time together at a restaurant or coffee shop can help you feel supported, refreshed, and renewed.
- Create a network with other stroke survivors and caregivers.
- Consider seeking professional help. Mental health professionals and specialist counselors can listen to your questions and concerns while teaching you coping skills to help you better understand and deal with your emotions.
- Determine exactly what you need. Don’t hesitate to ask for help with grocery shopping, meals, doctor visits, miscellaneous tasks, etc. Write down the things that are most difficult to complete and find the right person for the job. Then, ask that person to help you with a specific task.
- Take time for yourself.
Eat a balanced diet. Learn how you can maintain good eating habits and help prevent stroke and heart disease. Exercise regularly. Find time to do a hobby at least once a week. Spend time with family and friends.
Medical management
Communicating with your healthcare team can help you understand what happened during your loved one’s stroke, what to expect during the recovery process, and how to help them.
Give the care team a comprehensive medical history
The information you will provide includes:
- Previous illnesses
• Medications
• Family history
• Previous surgeries
• Allergies
Ask questions
- What type of stroke is he having? (ischemic, hemorrhagic, etc.)
- On which side of the brain did the seizure occur?
- What caused the stroke?
- What risk factors may have contributed to the stroke? (high blood pressure, smoking, atrial fibrillation, etc.)
- How can another stroke be prevented?
- What is the likelihood of another episode occurring?
- What are the possible long-term effects?
- What rehabilitation services are available?
- What rehabilitation services will the patient need?
- What are the dietary recommendations?
- How can I prepare my home for my loved one’s return?
- What medications are needed and how can I manage them? Maintain a medication chart to help manage the patient’s prescriptions.
Restoration
Rehabilitation is a critical part of recovery for many survivors. The majority of survivors’ recovery is usually within the first year after the stroke. However, recovery can continue for many years—especially if they continue to work on specific functional goals they wish to improve.
Rehabilitation can help improve survivors’ independence in many areas, including self-care, mobility, communication, cognitive and social skills. Rehabilitation specialists offer a treatment program specifically tailored to the patient’s needs.
Caregivers play an important role in the recovery of survivors as key elements of the treatment team.
Caregivers should ask their healthcare team about rehabilitation services as soon as possible to ensure their loved one is on the road to recovery. They can then talk to qualified physical therapists about how they can help with rehabilitation at home and appropriately assist with the patient’s individualized rehabilitation plan.
Rehabilitation services may include:
- Nursing care
- Physiotherapy
- Occupational therapy
- Speech therapy
Create an emergency box
In the event of an emergency, be prepared to provide healthcare professionals with the necessary information and documents. Store them in a safe location, such as a bedside table, and tell your family members and/or friends where they are.
Tips to help with recovery
Many caregivers ask us how they can help the person they care for recover. Becoming a caregiver and supporting your loved one is a good start to making them feel independent again. Here are some suggestions that may help you.
- Seek guidance from professionals who have played a significant role in your loved one’s recovery. Their recommendations will be helpful.
- Encourage the person to take on family responsibilities from the start. You may need to find new roles that are manageable to help build their confidence and maintain their relationships with other family members.
- Try not to be overprotective. You need to find the right balance between helping the person you care for and developing their independence. Encourage them to do as much as possible, right from the start. This can be a very slow process and can be frustrating at first, but in the long run, it is the best way to help someone.
- Be patient. A stroke damages the brain, which can make it difficult to resume even simple activities.
- Set up a daily routine that works for both of you. This may take time, but it is worth it. Think about the daily tasks that he can do independently, may be starting to relearn, or may need help with. Plan the time he will perform each activity, and then make a list of small steps to perform some of the missing skills. Work with your physical therapist to set short, but frequent, periods of the day for functional movements, exercises, and skills.
- Be positive! Recovering from a stroke is a slow process, so praise is essential for any sign of progress, no matter how small. Reassure the person you are caring for that things can get better, especially when progress seems slow.
References:
- Stroke association
- American stroke assosiation
- Pei-Chun Tsai, Ping-Keung Yip, John Jen Tai, and Meei-Fang Lou. (2015) Needs of family caregivers of stroke patients: a longitudinal study of caregivers’ perspectives. Patient Prefer Adherence. 9: 449–457.
Evangelia Manta
Physiotherapist PT, MT, Bobath (IBITA) instructor
