Understanding End-Stage Stroke: A Guide for Families

Published on December 4, 2023

Updated on November 18, 2023

Receiving news that a loved one has reached the end-stage of a stroke can be overwhelming and emotionally challenging. As an experienced with years of experience, I understand how crucial it is for families to have accurate information about what to expect during this journey. In this article, we will explore the changes that may occur in a loved one with end-stage stroke and how you can best care for them throughout this process.

What is End-Stage Stroke?

End-stage stroke refers to the advanced and final phase of a stroke, during which the brain has experienced severe damage, leading to significant neurological impairment. At this stage, the body's vital functions are significantly compromised, and the patient's health condition is irreversible. It is important to recognize that every individual's experience with end-stage stroke can be unique, and the progression can vary from person to person.

Changes and Symptoms to Expect

As your loved one's stroke advances to the end-stage, you may notice several changes in their physical and cognitive functioning. These changes can include:

  1. Limited Mobility: Your loved one may have very weak muscles or lose the ability to move some parts of their body. This can make it hard for them to get out of bed or use a wheelchair. They may need your help to change their position, transfer them to a chair or a toilet, or lift them up. You can also use pillows, blankets, or cushions to make them more comfortable and prevent stiffness.
  2. Difficulty Swallowing: Your loved one may have trouble swallowing food, drinks, or saliva. This can make them choke, cough, or spit out what they are eating. They may also lose their appetite or . You can help them by giving them soft, moist, or pureed foods that are easy to swallow. You can also use a spoon or a syringe to feed them slowly and carefully. You can also keep their mouth clean and moist by using a wet cloth, sponge, or spray.
  3. Communication Challenges: Your loved one may have difficulty speaking or understanding what you are saying. They may not be able to find the right words, say what they mean, or follow a conversation. They may also have trouble reading, writing, or using gestures. You can help them by speaking slowly, clearly, and simply. You can also use pictures, objects, or yes/no questions to communicate with them. You can also encourage them to express their feelings and needs, and listen to them patiently and respectfully.
  4. Cognitive Decline: Your loved one may have problems with their memory, attention, or reasoning. They may forget who you are, where they are, or what time it is. They may also get confused, lost, or disoriented. They may also have trouble making decisions, planning, or solving problems. You can help them by reminding them of important information, such as their name, the date, or the place. You can also use labels, signs, or calendars to orient them. You can also avoid arguing, correcting, or criticizing them, and instead reassure them and distract them with something they enjoy.
  5. Changes in Consciousness: Your loved one may sleep more often or for longer periods. They may also become less alert or responsive to you or their surroundings. They may not open their eyes, talk, or react to touch, sound, or pain. They may also drift in and out of consciousness, or have periods of wakefulness and restlessness. You can help them by keeping a regular routine, such as waking them up and putting them to bed at the same time. You can also keep the room quiet, dark, and comfortable. You can also talk to them, hold their hand, or play their favorite music, even if they do not seem to respond.
  6. Incontinence: Your loved one may lose control of their bladder or bowel. They may wet or soil themselves, their bed, or their clothes. They may also have constipation or diarrhea. You can help them by using pads, diapers, or catheters to keep them dry and clean. You can also change them frequently and gently, and wash their skin with warm water and soap. You can also give them fluids and fiber to prevent dehydration and constipation.
  7. Respiratory Issues: Your loved one may have trouble breathing or catching their breath. They may also make noises, such as wheezing, gurgling, or rattling, when they breathe. They may also cough or have a fever. You can help them by raising their head or chest with pillows or a wedge. You can also use a fan, a humidifier, or an oxygen mask to provide fresh air and moisture. You can also suction their mouth or nose to remove any secretions or mucus. You can also give them medication to ease their cough or pain.
  8. Skin Breakdown: Your loved one may develop sores or wounds on their skin, especially on areas that press against the bed or the chair, such as their hips, heels, or elbows. These are called pressure ulcers or bedsores, and they can be painful and infected. You can help them by changing their position every two hours or more often. You can also use special mattresses, pads, or cushions to reduce the pressure. You can also keep their skin clean and dry, and apply creams or dressings to protect and heal the sores.
  9. Increased Susceptibility to : Your loved one may have a weak immune system that makes them more likely to get sick from bacteria, viruses, or fungi. They may have in their lungs, bladder, skin, or blood. They may also have signs of infection, such as fever, chills, sweats, or redness. You can help them by keeping their environment clean and hygienic. You can also wash your hands before and after touching them or their belongings. You can also give them or other medications to treat the infection.
  10. Changes in Emotional Behavior: Your loved one may have changes in their mood, personality, or behavior. They may become more sad, angry, anxious, or fearful. They may also cry, laugh, or shout for no reason. They may also have hallucinations, delusions, or . These are called emotional lability or pseudobulbar affect, and they are caused by the brain's damage. You can help them by being calm, supportive, and understanding. You can also acknowledge their feelings and emotions, and validate their experiences. You can also give them medication to reduce their distress or agitation.

Caring for Your Loved One

Caring for a loved one with end-stage stroke can be challenging, but with the right approach and support, you can provide them with the best possible care during this difficult time. Here are some essential tips:

  1. Comfort and Safety: Your loved one may have pain, , or anxiety because of their condition. You can help them by making sure they have a soft and supportive bed or mattress that fits their body shape and size. This can prevent pressure sores, which are wounds that can happen when the skin rubs against the bed or the chair. You can also use pillows, blankets, or cushions to make them more comfortable and prevent stiffness. You can also check their skin regularly for any signs of redness, swelling, or infection, and treat them as soon as possible.

    You can also help your loved one by making sure they are safe from falling or hurting themselves. You can use safety measures, such as bed rails, to prevent them from rolling off the bed. You can also use a belt, a sling, or a hoist to lift them up or move them around. You can also keep the floor clear of any objects that could trip them or cause them to slip.
  2. Medication Management: Your loved one may have pain and other symptoms, such as nausea, vomiting, constipation, or breathing problems, because of their stroke. You can help them by working closely with your healthcare team to manage these symptoms effectively. Your healthcare team may include doctors, nurses, pharmacists, or hospice workers. They can prescribe medications to ease your loved one's pain and , and explain how to use them properly. You can help by ensuring that the medications are administered as prescribed, and keeping track of when and how much your loved one takes. You can also watch for any side effects or allergic reactions, and report them to your healthcare team right away.
  3. Nutrition and Hydration: Your loved one may have trouble swallowing food, drinks, or saliva, because of their stroke. This can make them choke, cough, or spit out what they are eating. It can also make them lose their appetite or . You can help them by giving them soft, moist, or pureed foods that are easy to swallow. You can also use a spoon or a syringe to feed them slowly and carefully. You can also keep their mouth clean and moist by using a wet cloth, sponge, or spray.

    You can also help your loved one by making sure they get enough fluids to stay hydrated and prevent dehydration. Dehydration can cause headaches, dizziness, confusion, or kidney problems. You can give your loved one water, juice, milk, or soup, depending on their preference and tolerance. You can also use ice chips, popsicles, or gelatin to provide fluids and cool their mouth. You can also check their urine color and amount to see if they are hydrated enough.

    If your loved one has swallowing difficulties, you should consult with a speech therapist or dietitian for guidance on appropriate food and fluid consistency to avoid aspiration. Aspiration is when food or fluids go into the lungs instead of the stomach, and it can cause pneumonia or other infections.
  4. Communication: Your loved one may have difficulty speaking or understanding what you are saying, because of their stroke. They may not be able to find the right words, say what they mean, or follow a conversation. They may also have trouble reading, writing, or using gestures. You can help them by speaking slowly, clearly, and simply. You can also use pictures, objects, or yes/no questions to communicate with them. You can also encourage them to express their feelings and needs, and listen to them patiently and respectfully.

    You can also help your loved one by offering reassurance and comfort through touch and presence. You can talk to them, hold their hand, or hug them, even if they do not seem to respond. You can also play their favorite music, read to them, or watch a movie with them. You can also tell them that you love them and that you are there for them.
  5. Frequent Repositioning: Your loved one may be immobile, or unable to move some parts of their body, because of their stroke. This can make them uncomfortable and cause pressure sores. You can help them by regularly changing their position to relieve pressure on certain body parts. You can also use special mattresses, pads, or cushions to reduce the pressure. You can also massage their muscles and joints to improve blood circulation and prevent stiffness.
  6. Emotional Support: End-stage stroke can be emotionally challenging for both the patient and family. You may feel sad, angry, guilty, or hopeless about your loved one's condition. You may also feel stressed, overwhelmed, or exhausted by the demands of caregiving. You can help yourself and your loved one by seeking support from hospice professionals, counselors, or support groups. They can provide you with information, advice, and resources to cope with your situation. They can also offer you emotional, spiritual, and practical support to ease your burden.
  7. Family Involvement: Your loved one may appreciate having family members around them to care for them and support them. You can encourage family members to participate in your loved one's care and provide emotional support for one another. You can also share memories, stories, or photos of your loved one with them. You can also respect your loved one's wishes and preferences, and involve them in decision-making as much as possible.
  8. : Caring for your loved one can be very tiring and demanding. You may need some time to rest and recharge your energy. You can consider arranging respite care to give yourself a break and prevent . Respite care is when someone else takes care of your loved one for a short period, such as a few hours or a few days. This can be done at home, at a hospice facility, or at a nursing home. Hospice and teams can help coordinate this for you.
  9. Advance Care Planning: Your loved one may have some preferences for medical interventions and end-of-life care. They may want to have or refuse certain treatments, such as CPR, feeding tubes, or ventilators. They may also want to die at home, at a hospice facility, or at a hospital. You can help them by discussing these preferences with them and ensuring their wishes are documented in an advance directive. An advance directive is a legal document that states what your loved one wants and does not want for their care. It can also name a person, called a health care proxy, who can make decisions for your loved one if they cannot speak for themselves. You can also share this document with your healthcare team and family members, so they can respect and follow your loved one's wishes.

Conclusion

Facing the end-stage of a loved one's stroke can be emotionally challenging, but understanding what to expect and how to care for them can ease the journey. By providing compassionate care and seeking support from healthcare professionals and support groups, you can make this time as comfortable and meaningful as possible.

Resources

National Stroke Association

When someone is seriously ill or dying after a stroke

Palliative Care for Different Types of Stroke

CSBPR webinar: Palliative and end of life care for stroke patients

Understanding Hospice Care: Is it Too Early to Start Hospice?

What's the process of getting your loved one on hospice service?

Picking a hospice agency to provide hospice services

Medicare — Find and compare hospice providers

Providing Comfort During the Last Days of Life with Barbara Karnes RN (YouTube Video)

Preparing the patient, family, and caregivers for a “Good Death”

Velocity of Changes in Condition as an Indicator of Approaching Death (often helpful to answer how soon? or when?)

The Dying Process and the End of Life

The Last Hours of Life

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The Eleventh Hour: A Caring Guideline for the Hours to Minutes Before Death

By Your Side , A Guide for Caring for the Dying at Home

Eldercare Locator: a nationwide service that connects older Americans and their caregivers with trustworthy local support resources

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