The Ultimate Guide to Caring for a Stroke Survivor
Being a Great Caregiver is Hard.
Being a great caregiver isn't an easy task. It’s a full-time job. A great caregiver must not only be the caregiver but also the therapist and motivational speaker. It's a job that requires a lot of patience, empathy, and strength.
However, having a great caregiver is one of the best strengths a stroke survivor has towards making a fuller recovery. In this guide, I will be sharing with you 12 strategies to help your loved one progress faster and be safer in their recovery.
Disclaimer: Please consult with your loved one's doctor, nurse, or therapist prior to making any major changes in care.
Here are 12 Strategies to help your loved one progress faster and be safer in their recovery.
1) Positioning
Repositioning our bodies is a skill most of us take for granted. Being unable to move our bodies can lead to a number of harmful problems. Below are 5 common problems related to positioning and how you can help prevent them in the stroke survivor you are caring for.
a) Bed sores also known as pressure ulcers. These happen when areas of the skin are under pressure for long periods of time preventing new blood flow to that area of skin. Without proper blood circulation that area of the skin dies leaving a hole. Bed sores can be life threatening if left untreated.
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To prevent bed sores, you simply need to help your loved one reposition their bodies every 2 hours. For example, if they are bed bound, you will have them take turns laying on their sides and back. Use pillows to prop their head, shoulders, and hips for increased comfort. Or if they are in the wheelchair, using pressure relieving cushions such as an or to disperse pressure more evenly and have them stand or use a Hoyer to lift them up for 30-60 seconds every 2 hours.
b) Orthostatic hypotension is when your blood pressure drops when going from laying to sitting or sitting to standing positions. This change in blood pressure can cause dizziness, lightheadedness, and possibly fainting if severe enough putting your loved one at risk of having a fall and injuring themselves.
Orthostatic hypotension happens when people are bedbound for long periods of time causing the muscles in their arteries to weaken and have difficulty pumping blood against gravity when going from a horizontal (laying) to vertical position (sitting/standing) in space.
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To prevent/improve orthostatic hypotension, expose your loved one to sitting up in the wheelchair or standing (if able to do so safely) for as long as they can tolerate before sitting/laying down to recover. Consult with your OT or PT for more guidance if you believe your loved one has orthostatic hypotension.
c) Edema is swelling caused by excess fluid trapped in your body's tissues. Being unable to move your arm or leg puts you at high risk for swelling in those extremities. Having excess edema can cause pain, difficulty with movement, and skin issues if edema isn't managed well.
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To reduce edema (swelling), positioning the affected leg and arm on pillows to elevate above heart is the optimal position as gravity can assist with pulling the fluid out of the arm or leg. However, when seated, it is best to elevate leg and arm to be parallel to the floor using pillows or an for their wheelchair. You can also compress and massage the extremities to help move the swelling out of the arm or leg. Consult with your loved one's doctor before using compression and massage for edema due to these techniques being contraindicated with blood clots.
d) DVT stands for deep vein thrombosis. Which is a blood clot that typically forms in the calf or leg. DVT’s can be caused by several ways but the primary way DVT’s form in stroke survivors is immobilization of the limb. Lack of movement causes blood to pool in the veins and causes a clot to enlarge and harden. Symptoms include red, hot, swollen, and painful to touch over the affected area. If you notice these symptoms call the patient’s doctor immediately.
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Prevention of DVT’s includes blood thinners such as warfarin, heparin, or aspirin. You can also use if cleared by their doctor to massage calves to increase circulation and reduce stagnant blood in the lower extremities. Elevation of the legs above the heart for increased blood flow and decreased edema. This can be done while laying or sitting and raising leg. Muscle movement assists with circulation and help prevent pooling of the blood in the lower legs. Movement can be done passively by a caregiver if the survivor is unable to move the extremities independently.
e) Muscle/joint contractures can occur from lack of movement in the joint and muscles. Overtime unused muscles will get stiff and harden in the position they are in. For example, some of my clients who are bed bound lay in bed with their leg straight which causes quadricep and knee contractures leading to the leg being stiff as a board and the person having the inability to bend their knee. This makes standing and walking very difficult.
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Preventing muscle/joint contractures is simple. Move the muscles and joints daily. This can be done by the stroke survivor or the caregiver moving their limbs for them. Motion is lotion to the joints and muscles.
If the stroke survivor you are caring for has spasticity because of their stroke then they have an increased risk for muscle and joint contractures and should have been given a range of motion or passive range of motion exercise program from their PT/OT during their hospital/rehab stay. Follow these programs or you can search for passive range of motion exercises on YouTube for more guidance.
2) Medication & Vitals
Ensure your loved one is taking their medications properly. Take notes on side effects that they may have such as dizziness, diarrhea, fatigue, drowsiness, nausea, rash, or an upset stomach. If your loved one is having one or more of these side effects consistently, report it to their doctor and discuss changes to their medication if possible.
Learn how to check vital signs. This is important information to have and keep records of. Blood pressure, heart rate, oxygen levels, and even blood sugar if applicable. Take these vitals the same time every day and keep a log of them over time. Typically, it is best to these vitals are first thing in the morning before breakfast and before you go to bed. You may also have to check blood sugars 2 hours after each meal.
Make sure to take 2-3 blood pressure readings to get the most accurate results. If your blood pressure is above 160/100 call your doctor to report it. But be aware that after strokes many people's blood pressures run high for a few months and may be normal for them.
3) When Should You Call 911
When should you call 911? Calling 911 can be a scary thing to do. And knowing when the right time to call 911 can either save someone’s life or be a waste of time and money. This is a list of reasons I would call 911 for. When in doubt, call and speak with the operate to explain what is going on and they can assist you in determining if an ambulance should be sent out.
a) High Blood Pressure. If systolic blood pressure (top number) is above 200. This would constitute a hypertensive emergency and would likely require medical treatment to prevent a stroke or heart attack.
b) Difficulty breathing. If oxygen levels drop below 90%. If the stroke survivor is on supplemental oxygen, turn it up and call their doctor to report it. But if they are not on oxygen they may have a pulmonary embolism (blood clot in the lungs) or fluid in their lungs from aspiration pneumonia (swallowing liquids down into lungs).
When in doubt call 911 and speak to the operater to determine if it's an emergency.
c) Become Unresponsive. If the stroke survivor becomes unresponsive. If they don’t respond to you talking to them, tapping them, or if you hold their head and look at them and they don’t seem to see you. Or if you have trouble waking them.
d) New Stroke Symptoms. If the stroke survivor is showing new stroke symptoms call 911 immediately. 1 in 4 stroke survivors will have another stroke. Look for facial drooping, 1 sided weakness, difficulty speaking, or increased confusion/orientation.
4) When Should You Call Their Doctor
If the situation doesn’t look like it is life threatening then get ahold of your survivor’s doctor to report your findings and get guidance. Some reasons you would want to call their doctor include:
a) After falls that result in injury. Falls can result in further harm to a subluxed shoulder, broken bones, and compressed nerves. If the stroke survivor you are caring for has fallen and has had an injury or has persistent pain, call their doctor to report it. You may be asked to take them in to get an X-ray to assess injury.
b) If they have a seizure. If it's their first seizure, you should call their doctor to report it and get guidance on whether to come in and assess or not. They should give you instruction on what to do if the survivor has another seizure.
c) When confused and disoriented. If the stroke survivor you are caring for appears to be more confused, disoriented, or begin to have delusions or hallucinations you should call their doctor immediately.
d) If they have chronic diarrhea. If having chronic diarrhea or vomiting as it could potentially lead to dehydration and malnutrition.
e) If urine has foul smell. If their urine has foul smell, if there is burning when they urinate, or if their urine is cloudy as it could be a sign of a UTI.
f) If they haven't had a bowel movement in a week. If they haven’t’ had a bowel movement in a week you should call the doctor. Opioids for pain relief may cause constipation.
5) Complications from Stroke
It is important to remember that a stroke is a brain injury. Which means unfortunately there can be many different side effects depending on the location and severity of the stroke. Below are a few of the more common ones I see that aren’t obvious to most people and strategies to help protect and enable your stroke survivor.
a) Central pain - It is not uncommon for some stroke survivors to have what is called central pain which is where the brain mixes up signals from other sensory inputs and perceives it as pain. Typically moving and even in severe cases touching can be excruciatingly painful. Consult with your loved one’s doctor about medications or treatments for this type of pain.
b) Subluxation - is a partial dislocation of the shoulder. This happens due to weakness in the shoulder and rotator cuff muscles from flaccidity and causes the joint to sag in the joint capsule.
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Biggest thing to understand here is to support the elbow pushing the humerus (arm bone) back up into the shoulder. You should feel a gap close on the top part of the outside of the shoulder. You can do this through support under the elbow with a pillow or stack of blankets while seated or laying. Or use a sling to support the shoulder when standing/walking or sitting in a wheelchair.
c) Fatigue - some stroke survivors experience generalized fatigue and may sleep a lot through the day. As a caregiver ensure their positioning is safe for them. Make sure they aren’t falling asleep in the wheelchair without proper head, leg, and arm support. Consider even using a seatbelt for the wheelchair if they have a history of falling asleep and sliding out of the wheelchair. Also, when they are awake it is important to fit in feeding, toilet use, and the exercise program.
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Plan rest periods during daily routine. Prioritize activities that need to be done first. You can consult with their doctor to see if any medication can help increase arousal.
d) Depression/mood – having increased depression is common in stroke survivors. This could be a result of changes in brain chemistry, damage to that part of the brain, or because being disabled makes it hard to do the things that give your life meaning and purpose. It is common for stroke survivors to have mood swings throughout the day. Rapid changes from feeling happy one minute to crying another minute. Many survivors describe their mood as a roller coaster. Some signs of depression include getting angry/crying easily, sleeping too much/too little, feeling hopeless or down, not wanting to see friends/family, thoughts of suicide.
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Some ways you can help include helping them exercise, participate in purposeful activities, getting them outside in nature, engaging in sensory experiences with smells, tastes.
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Consult with your loved one’s doctor to see if medications may help depression symptoms. And work with your loved one to find activities or modified activities they can engage in daily to increase their quality of life.
e) Seizures - seizures do happen after stroke. Survivors are more at risk for seizures if they have had a craniotomy (removal of part of the skull) due to excessive swelling. Sometimes survivors will be able to tell you when they are about to have a seizure but most of the time there is no warning.
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Best thing to do as a caregiver is to try and get them in a safe place where they won’t fall or injure themselves. Try to get them to lay down in bed or on the couch and move them on their side if they start vomiting. Support them so they don’t fall off the bed/couch. If it’s their first seizure, call and report it to their doctor.
f) Executive Function Impairments - like we said above strokes are brain injuries. Some stroke survivors’ cognitive skills like planning, sequencing, initiating, monitoring, remembering, impulse control, judgement, problem-solving, decision making, attention, focus etc. can all be affected making it hard for them to complete tasks like getting dressed or organizing your room. A few potential problems from executive function impairments include may have difficulty dealing with problems that arise, require cues for completing simple tasks such as dressing, or have difficulty following instructions. It is very important to have patience with them and understand they are just as frustrated as you are. Keep practicing with them like with any skill and these skills will get better over time.
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Some strategies/tools you can use include daily checklists or calendars, word searches, crosswords, games on a smartphone or entertainment system. This is a very challenging area to work with and would recommend consulting with the survivors OT or ST for intervention ideas and to ensure the interventions are right for the survivor.
g) Aphasia – makes it hard for the survivor to communicate. There are several types of aphasia. The two common types are Broca’s aphasia which is difficulty with saying words and sentences and Wernicke’s aphasia which is difficulty understanding what other people are saying. Aphasia can vary in severity from very severe to mild.
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As a caregiver, there are a few tips to help you better communicate with a survivor with aphasia. You will have to be patient and wait for them to respond. Make sure you talk with them not for them. Use simple and easy words and sentences. And minimize distractions. Work with their speech therapist or look for tools to help them communicate through electronic systems, word binders, pen and paper, or gestures/acting.
h) Dysphagia – is a swallowing deficit caused by damage to the area of the brain that controls nerves and muscles of the tongue, throat, esophagus, cheeks, and lips as these are the muscles involved in chewing and swallowing food/drink. Dysphagia can also cause discomfort when eating, affect the ability to taste or feel different textures of food, be able to identify the temperature of food/drink all of which can making survivors less likely to get proper nutrition and lead to malnutrition and/or feeding tubes.
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A few things to watch out for is pocketing food in the side of their mouth and not swallowing completely as it could lead to chocking on the food later in the day. Aspiration pneumonia is another condition that can result from dysphagia. This is when food or liquid is breathed into the airways or lungs causing symptoms such as shortness of breath, wheezing, coughing up blood or pus, fatigue, or chest pain.
I) Unilateral Spatial Neglect (UNS) – causes stroke survivors to have decreased awareness and attention to one side of their body. This can look like an arm or leg that is always sagging or hanging, or difficulty seeing things on one side of the body for example: if they have left sided UNS and are looking for the remote but can’t find it even though it is right in front of them and it is offset to their left.
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As a caregiver you want to encourage them to engage with their affected side. Instead of talking to them on their right side. Stand on the left side and talk with them. Instead of holding their non-affected hand. Hold their affected hand. Instead of watching TV to the right side of the body, reposition the TV to the left side of them. Get creative in how to help them participate using their affected side.
J) Hemiparesis/hemiplegia – hemiparesis or weakness on one side of the body and hemiplegia or paralysis on one side of the body can happen because of a stroke. This requires a trained therapist to identify what stage of stroke recover the patient is in and to prescribe an appropriate home exercise program.
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If your survivor has an exercise program help them complete it following the dosing given by the therapist. Or check out our YouTube channel @ Stroke Rehab at Home for follow along videos and help self-diagnosing what stage of recover you are in and finding the right exercises for you.
K) Balance – Is commonly affected from strokes and can also cause dizziness. Balance deficits can be from damage to the balance control centers of the brain or from hemiplegia/paresis of 1 side of the body, or from USN causing patient to favor 1 side of the body, decreased sensation to the affected lower extremity, among others.
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There are a variety of ways to train balance post stroke, however, this will require the skills of an OT or PT to help find the right balance exercises for the patient. If you haven’t recently had OT or PT. Call you doctor to see if you can get orders for home health or outpatient therapies.
6) Nutrition
Like we mentioned above, some survivors have difficulty with appetite or swallowing making it hard to get adequate nutrition. Which can lead to malnourishment and possibly a feeding tube placement for long term nutrition needs. If your loved one is having difficulty with getting adequate nutrition try different types of foods from textures, temperatures, flavors to see if there are any foods they can eat more of. Make sure to consult with their doctor or speech therapist before trying new foods to make sure they aren't on a modified textured food.
7) Sleep
Sleep is also extremely important to a recovering brain injury. Sleep is where new changes in the brain solidify. According to research, some of the work you do in therapy to create new neural pathways can be lost without a good night’s sleep. Work with your loved one to create the optimal sleeping environment for them to make the most out of their recovery. Experiment with different room temperatures, different humidity percentages in the room, types of pillows, may even need to elevate their upper body to sit more vertically or inclined. Also you can look at behaviors such as getting more exercise throughout the day, limit day time napping, darkening the room during sleep, stick to going to bed at same time every day, avoid screens before bedtime, avoid caffeine and eating shortly before bed time.
8) A Caregiver's Role in Recovery
Unfortunately stroke survivors won’t always have therapy coming in to work with them. In fact, there are even some insurances that only see therapists as educators to educate the caregivers and family what to do and only provide stroke survivors with as little as 2-6 visits to do that in the home health and outpatient settings.
So as a caregiver, you must learn how to be the therapist for your stroke survivor. Work with their therapists to teach you how to safely do range of motion and stretching, how to do the weight bearing and strengthening exercises, and how to work an electrical stimulation machine. At some point in their recovery, you most likely will have to start leading your loved on through these exercises.
Another big concept to know is the difference between enabling vs disabling your loved one. You can disable someone by doing the activities or tasks that they can do for themselves. For example, if they can put a shirt on but it may take them a few minutes to do so. Then that is a task they should be doing on their own or with minimal assistance unless time is very limited or it is unsafe. By putting the shirt on for them, you take away a few minutes of their brain working to sequence through the steps of the task, the arm working to get into the sleeve and pulling the shirt down behind them, and the cardiovascular benefit they are experiencing when completing a task.
On the other hand, you can enable someone by giving them a safe environment and encouragement to do something challenging on their own or with assistance. For example, take an individual who has a fear of falling but can walk with assistance of a walker and person. Due to their fear of falling, they prefer to use a bedpan or bedside commode for toileting. You can enable them by encouraging and guiding them to the toilet by proving a safe environment for them to walk with you to complete toileting tasks. Over time this will not only help them improve their physical performance but also help them conquer their fear of falling.
9) Equipment
In today’s world there are many different types of home modification equipment such as tub benches, bed rails, and grab bars to increase independence and safety during self-care and transfer tasks. As well as many types of adaptive equipment such as toileting aides, reachers, and button hooks to increase independence and performance during self-care and home maintenance tasks. Consult with your survivor’s occupational therapist on equipment that will help in self-care, transfer, and home management tasks.
10) Establish a Routine
Depending on the severity of the stroke there can be A LOT to do when you become their caregiver. Repositioning in bed, checking vitals, doing their daily therapy program, preparing food, sometimes even feeding, changing the bed sheets, assisting with toileting care, bathing, and dressing. The list goes on.
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Having a daily set routine take much of the guess work out of the equation. Having a set time of day for self-care, feeding, and therapy can not only help you as a caregiver but also very beneficial to the stroke survivor. This will help orient them to the day of the week, time of day, and help prevent learned helplessness by instilling expectations into their daily lives. Work with your survivors occupational therapist on establishing an routine to fit your needs if you are struggling with this and are feeling overwhelmed.
11) Be Supportive and Empathetic
For most of you reading this, you never asked to be a caregiver. It was a role put on you and sometimes out of nowhere. But it is a role you must do to help your loved one. Having patience and mental strength is necessary to be a great caregiver. There will be days you want to give up and quit. You may even be verbally or physically assaulted from the stroke survivor. But you must remain strong and be the rock for them. They can’t be the rock for you.
It is important to understand that a stroke survivor has experience a brain injury. They may not be the same person they were before. They may have cognitive deficits making it hard for them to cope with their condition or hard to communicate their needs or even have difficulty processing what you are saying. They may just be grieving the fact that one day they were completely fine and a functioning member of society and the next they were completely dependent upon someone to care for themselves.
I see far too many caregivers yelling at and putting down stroke survivors out of frustration due to their lack of abilities. Just know that they are just as frustrated as you are with this situation. This is where you need to be supportive and practice empathy. Put yourself in their shoes and be with them and grieve their loss of function and encourage them to keep pressing forward with their recovery.
12) Take Care of Yourself
You must take care of yourself before you can take care of someone else. We hear this time and time again. But for some it can be a difficult practice. In some situations, being a caregiver is a 24/7 job. Finding time to take care of yourself can be difficult to find. Family, friends, and at times healthcare services can give you a few breaks to run errands or unwind and destress from the load and challenges of being a full-time caregiver. It is important to get enough sleep, to exercise, to plan times of relaxation, and to eat well.
For many of you reading this it is also important to take time to grieve your loss in this situation. The person you are caring for is your mother or father, a close family member, or even your spouse. Your picture of your future has changed. You have permission to grieve the picture of what you thought the future would be. Spend time with a friend or family member, someone you trust and talk about it. Or get a journal and spend a few minutes every day writing down your thoughts and feelings. This will help you let go of the picture you were expecting to live out and will allow you to start forming a new picture of what is to come.
There is a lot more that can be said on this topic. If you feel lost and are struggling I encourage you to reach out to a counselor to help you navigate this new chapter in your life.
