After Stroke Care at Home: How Palliative Care can Help

Overview

Strokes are the result of blood flow interruption to a certain region of the brain due to the formation of materials such as fat and cholesterol inside the blood vessel, or the migration of a clot from a distant body part. 

The most common cause of strokes is blockage due to a clogged artery, cutting off blood supply to the brain. This is known as ischaemic stroke. Another type of stroke – known as hemorrhagic stroke – happens when there is bleeding from an artery in the brain, causing pressure on the surrounding parts of the brain. 

In both types of strokes, brain tissues can be damaged quickly. It is estimated that the brain ages by 3.6 years each hour after an ischaemic stroke. Cognitive function deteriorates even more rapidly, at double the rate of overall brain aging during a stroke. Without immediate medical care, a stroke can cause deaths, or irreversible damages to the brain and the body. Stroke survivors often spend months or years in rehabilitation to get back to the life before the stroke, with various levels of success. 

In this article, we will discuss the common long-term effects of strokes, the role of palliative care in long-term stroke recovery for stroke survivors, and how to provide palliative care to a stroke patient at home to improve their quality of life, as well as that of the caregiver and family members. 

1. Common long-term side effects of strokes

Strokes often leave behind side effects, depending on which part of the brain was affected and how long blood supply to the brain was interrupted. Side effects range from temporary to long-term or permanent, from physical to emotional and mental changes. Below are commonly seen long-term side effects after strokes: 

  • Physical side effects
    • Weakness or paralysis on one side of the body, resulting in difficulty in walking, moving independently or balancing in many cases.
    • Difficulties with swallowing or eating.
    • Changes in physical ability to carry out daily activities such as holding items or doing exercise.
    • Physical pain, often due to damages to tissues or nerves. 
    • Spasticity, causing muscle stiffness, or spasm in severe cases. 
    • Other physical changes such as fatigue, insomnia, incontinence, impaired vision, seizures, etc.
  • Side effects affecting communication: Depending on the part of brain that is affected during the stroke, patients may experience one or more of the following:
    • Difficulties with finding words and speaking.
    • Difficulties understanding what others are saying.
    • Slurred or muffled speech.
    • Troubles with reading and writing. 
  • Memory and cognitive side effects 
    • Memory loss 
    • Difficulties with learning and grasping new information
    • Mixing up information and details 
  • Side effects affecting emotional state and personality
    • Anxiety and excessive worrying, often stemming from life changes after a stroke.  
    • Depression (also called post-stroke depression, or PSD).
    • Changes in behaviour and personality, such as becoming aggressive or impulsive or withdrawn.
    • Pseudobulbar affect (also called involuntary emotional expression disorder), resulting in uncontrolled crying or laughing, and mood swings.
Ninkatec_Infographic_Stroke_Common long-term side effects of stroke

Common Long-Term Side Effects of Strokes

2. Stroke rehabilitation & recovery from long-term effects of stroke

Stroke rehabilitation process starts after the doctor has stabilised the condition. The first few days or weeks are typically spent in the hospital under the observation of doctors and stroke rehabilitation specialists. Patients then continue recuperation at home or their place of residence for as long as necessary. 

Studies reveal that stroke recovery is most rapid within the first 3-4 months, the first 4 weeks of which is when patients make the most noticeable progress. This is also the period when a recurrent stroke is likely to happen. An important part of stroke recovery therefore is to prevent a recurrence. Depending on the cause of the stroke and risk profile of the patient, doctors may prescribe certain medications or advise regular monitoring to reduce the chance of a secondary stroke.

The main purpose of stroke rehabilitation is to retrain the brain and the body to perform the functions that are affected during a stroke. Though the part of the brain that is damaged during a stroke cannot be recovered, the healthy part of the brain can be trained and rewired to form new connections, thereby helping the stroke patients to regain the lost functions. 

Post-stroke rehabilitation therapies may include:

  • Physical therapy to regain mobility, coordination and balance function. Depending on individual situations, rehabilitation goals can be to walk without using walking aid, or to use a wheelchair and be able to transfer to and from the wheelchair independently. The physical therapist will agree with the stroke patient on the goal and work out a training plan to achieve such a goal. 
  • Speech and language therapy to restore the ability to communicate, and to swallow if the patient has difficulties swallowing (dysphagia).
  • Occupational therapy to regain the ability to perform daily activities such as bathing, toileting, dressing, feeding, preparing meals for oneself. 
  • Cognitive therapy to improve memory and cognitive functions after a stroke
  • Behavioural therapy to help stroke patients to overcome social challenges when interacting with other people, and other mental health problems.  
  • Home therapy: these are additional training exercises set by doctors or rehabilitation specialists for stroke patients to carry out at home to support the recovery process. For example, brain-stimulating games, light swimming exercises, or arm and hand exercises that patients can safely conduct by themselves.  

Aside from the extent of brain damage incurred, age, overall health condition and commitment to training can also affect the outcome of stroke rehabilitation. For example, younger adults can recover faster and to a greater extent than older adults. Stroke patients with comorbidities are known to have more challenges recovering. However, with motivation, commitment and adequate medical care, patients can increase their chance of a fuller recovery.  

3. How palliative care can help with stroke recovery

Palliative care brings together a multidisciplinary team to tend to the various care needs during stroke recovery

Due to the wide range of side effects that strokes may cause, people recovering from a stroke often need support from a multidisciplinary medical team, including: 

  • Neurologists
  • Rehabilitation nurses
  • Physiotherapist and/or occupational therapists
  • Speech therapists
  • Psychiatrists
  • Caregivers

Palliative treatment, with its holistic care approach, can bring together medical professionals from various specialties, under one common objective of improving the patient’s quality of life. It is also highly personalised. Depending on the needs of each stroke patient, the makeup of the palliative care team can be different. The goal of palliative care, however, is the same for all patients, and that is to support the best recovery outcomes for patients suffering from a stroke.

Palliative care is designed for home recovery and deployment of quick responses to home 

Stroke recovery is often a long process, sometimes with unpredictable outcomes. After a short period of stroke rehabilitation, most of the recovery happens at home, or a place of residence, rather than in hospital. Palliative care is appropriate for stroke patients because it is designed for recuperation in any care setting. When a stroke patient is discharged to go home, family members may find themselves unprepared to tend to the complex post-stroke care needs of their loved one. 

Palliative care team is equipped with helping the stroke patient settle in and achieve the best progress from stroke rehabilitation. Family members can also benefit from having a palliative specialist to explain the symptoms and possible complications, as well as getting necessary caregiving skill training. 

Palliative specialists are also adept at responding quickly to the changing needs of their patients, which is another important consideration for stroke patients recovering at home. For example, due to limited mobility, a stroke patient may develop an unnoticed pressure sore, which turns into a wound and causes high fever. A palliative specialist can assess the situation, tend to the wound, prescribe the necessary medication and call on the nurses to continue caring for the pressure sore until it is healed.     

Palliative care focuses on reducing symptom burden and improving quality of life for stroke patients and their families.

Stroke is known to be one of the leading causes of disability and health burden in Singapore. Stroke survivors experience a number of long-term side effects that are life-limiting in nature. Paralysis and limb weakness on one side of the body – a very common side effect – may prevent the person from moving independently in the long run. Muscle weakness in the throat area may cause swallowing difficulties and make eating a chore. Communication, memory and mental capacity can also be affected after strokes. In short, stroke can be a life-changing event that significantly impairs the patient’s quality of life. 

Family members also experience the impact of the stroke happening to their loved one, such as a rapid and unexpected change in living situation, additional and unfamiliar care responsibility, sometimes loss of income and emotional distress. Feelings of uncertainty are reported among many caregivers and family members of stroke patients. However, they often have to set aside their feelings and challenges to focus on the recovery of their loved one.   

With such a heavy burden on patients and family members, stroke recovery calls for a care approach that focuses on improving well-being and quality of life. This is one of the core principles of palliative care. In addition to relieving physical symptoms, the palliative team helps to address mental, spiritual and social care needs for stroke patients, thereby elevating the patient’s overall well-being. Research shows that stroke patients who receive palliative care early on report better quality of life. Their family members also benefit from having the palliative care team to guide them with necessary medical knowledge, and consulting with when they have to make decisions with, or for their loved one. Social workers, who are a part of the palliative team, can also lend their helping hands to both patients and families. 

Above are important aspects of palliative care that makes it helpful for stroke recovery. To learn more about the role, benefits, and limitations of palliative care in general, check out our article on palliative care in Singapore here

In the following part of this article, we will discuss specific care needs that stroke patients and their families can rely on palliative care for. 

4. Managing post-stroke paralysis and muscle weakness with palliative care 

The most common symptoms of stroke include paralysis and weakness that affect one side of the body. In severe cases, patients could become disabled. In other cases where patients could recover and move around on their own, spasms, pain, and restricted range of motion are common complaints. Patients also experience loss of coordination – which makes daily activities such as dressing, bathing difficult, and poor balance – which makes them prone to falls and injuries.

When you work with a team that specialises in palliative care for stroke, you will receive information about the nature of your paralysis and muscle weakness –the possibility of improvement, and the general management plan to address your issues. The palliative care team will assess the situation, discuss and agree on a mobility and self-care goal and a timeline with the stroke patients and their families. It is important for the family to be part of the care team, as they will play a substantial role in providing assistance, support and motivation to the stroke patients during their loved one’s recovery process after a stroke.  

Medications and other therapeutic approaches may also be used to improve the overall well-being for the stroke patient. For instance, if the patient suffers from severe pain that interferes with your daily lifestyle, the palliative care specialist may suggest medications that block nerve reactions, which will effectively relieve the pain.  

5. Managing post-stroke communication difficulties with palliative care

The processes involved in communication – speaking, listening, and understanding – are complex brain functions. When a stroke affects communication, recovery often requires the specialty from a speech-language pathologist from the palliative care team. Once the type of communication issues are identified and a communication goal has been agreed with the patient, the speech therapist will work out a recovery plan with the patient. In case progress is slow, the speech therapist will collaborate with the rest of the palliative team to identify the reasons and adjust the recovery plan. 

Caregivers and family members can also receive advice or training on how to communicate more effectively with your loved one suffering from communication difficulties after a stroke. For example, slowing down when you speak, making eye contact, giving time for answers, are some of the helpful tips in communication for families and friends of stroke patients. If difficulty swallowing develops, stroke patients and families can also seek help from speech pathologists.

In all cases, palliative care specialists will help you understand the ins and outs of every recovery step you take, as well as ensure a cohesive recovery plan. For instance, if the muscles of your throat get damaged and dysphagia develops, the palliative care team may suggest getting a feeding tube, which will deliver nutrients straight to the stomach, while the speech therapist works with the patient to improve throat muscle function. 

Working with a palliative care team, the patient and family will be informed in advance the pros and cons of each measure, whether they are temporary and permanent, and possible complications to watch out for, among their other concerns. 

6. Managing mental, emotional and personality changes after a stroke with palliative care

The brain controls our emotions, behaviours and awareness. The obstruction of vital blood vessels that supply important regions of the brain can cause drastic behavioural changes, manifesting as irrational and unexpected actions or speech. After a stroke, these changes can manifest as various symptoms ranging from headaches, forgetfulness, loss of sleep, to anxiety, depression and inappropriate behaviour. The psychologist from the palliative care team will be able to assess severity of symptoms and recommend medications and therapies to improve them. 

Often, the palliative care team for stroke have deep knowledge of post-stroke depression and other related issues. They will discuss and agree with the stroke patient and family on a set of cognitive goals and social skill goals to work towards. Besides providing direct care, the palliative care team will also inform stroke patients and their families about the benefits and potential side effects of the treatments and the purpose behind their use. 

Furthermore, caregivers and family members can express all your worries and needs to the palliative care team. A stroke can be a life-changing event for the family members of the stroke patients. With their experience in counselling and helping stroke patients and families improve their quality of life, family members can expect useful tips, advice to manage and improve their wellbeing.   

7. Managing post-stroke recovery expectations with palliative care

Communication is a cornerstone in palliative care. By creating a healthy environment between the stroke patients, their loved ones, the doctor in charge, palliative care experts help to create a strong foundation of care and support for the stroke patients to make the most optimal recovery and for their families to navigate the impact in daily life. 

Most importantly, with their experience and expertise, a palliative care team specialising in stroke will help you set realistic expectations to achieve. While it is crucial to have a positive mentality and the willpower to get better, it is never a good idea to set the bar too high, only to be disappointed later in the process. 

Recovering from a stroke requires substantial support from various sources, often over a prolonged period of time and sometimes with unexpected turn of events. Having access to palliative care can help you navigate the healing journey effectively and confidently, for both the patient and the family, by knowing what to expect and having someone reliable to turn to every step of the way. 

8. How to care for someone with a stroke as a family member or friend

After covering the role of palliative care in taking care of stroke patients, let’s discuss the potential role of a family member or loved one in assisting a patient with stroke. For many patients, recovering from a stroke is an extremely challenging process. They need all the support they can get from families and friends to get back to life before the stroke. 

If you have a friend or a loved one with a stroke, here’s how to take care of them:

Provide support

The first thing you can do is to aid them with their rehabilitation exercises in between sessions, as this is the only way to recover some of the lost functions. You also need to provide emotional support and reassurance since patients tend to overthink their condition and always focus on the worst-case scenario.

Keep in mind that despite the severe damage that can be caused by strokes, one of the major keys of treatment is to set short and long-term goals for patients, which pushes them to attend physiotherapy sessions and work hard to recover. Therefore, you should always act as the motivator to keep them going.

Adapt to their behavioural changes

As discussed above, stroke may cause unexpected emotional and behaviour changes. For instance, they may develop resentful feelings for no apparent reason. This can be very frustrating or overwhelming for families and close friends, causing them distress along the way.

However, you must remember that these changes are often temporary, and they will likely revert to their old self as the rehabilitation sessions progress. To ease this process, seek help from  support groups or the palliative care team. It is also advisable for caregivers to take time off to take care of your physical and psychological needs whenever you require.

Call on the professionals

Caring for a stroke patient can be extremely demanding, especially if the primary caregiver is a family member who has a full-time job. Remember, you can improve your loved one’s quality of life by adding appropriate ‘equipment and tools’ to the house. It is useful to tap into professional help, such as getting respite care, a professional caregiver, or palliative care specialist for stroke to ease your burden. The professionals will be able to provide physical and psychological support for the patients, which relieves the pressure off you.

9. Takeaway message

Caring for your loved ones after a stroke is an extremely important task to alleviate their sufferings and help them get back to life before stroke. Hopefully, this article helps to shed some light on the processes needed to take care of stroke patients, especially the role of integrating palliative care in post-stroke recovery at home. 

Ninkatec is one of the leading home care specialists in Singapore, with the technology and experience to provide 24/7 professional care to stroke patients in the comfort of their home. We take a patient-centric approach and provide palliative care that is personalised to each individual patient’s situation. For a private consultation on the stroke condition of your loved one, please feel free to call, email, WhatsApp us, or leave your contact in the form below.

 

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