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Not All Care Circles are the Same: Caregiving with a Stroke Patient

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My engagement was a mere a few hours old, and we were calling the family to tell them the good news.  My fiancé’s mother (my future mother-in-law) was on vacation with other family members. We wanted to speak with her first on the phone. By her reaction to the news, I knew something was wrong. She responded to the report of her son’s engagement with a bit of confusion, with no emotion, and a distance in her voice. Concerned, I alerted my fiancé, but with everyone else so caught up in the excitement of our engagement news, they just kept celebrating in the background. They didn’t see the clear signs of a stroke. 

By the end of my engagement day, my mother-in-law -- aged 58 and in seemingly good health -- became paralyzed on her right side, and the worlds of our newly united families changed in more ways than one.

May is Stroke Awareness Month, and we want to cover some of the aspects of caring for a loved one who has experienced a stroke. Every year, more than 795,000 people in the United States have a stroke. And while every care circle is distinct, there are shared elements of caregiving for a person who has experienced a stroke that remain identifiable for everyone in that role. I learned this as many people do: suddenly, on an otherwise joyful day and with family members who did not know how to recognize stroke symptoms, especially in women.

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The long-term effects of a stroke evolve over an extended period.  There are immediate observable issues like paralysis or mood swings that will change over time and with therapies. This particular care journey starts with an immersive education on what your loved one’s physical and emotional symptoms may require.  In many cases, if the stroke’s initial symptoms remain untreated, the damage can be lasting, and your loved one will need care for the next ten to twenty years or more.

Knowledge is Key to Caregiving for a Stroke Patient

In a New York Times piece on the challenges of caregiving for a stroke patient, Dr. Richard C. Senelick, author of "Living With Stroke: A Guide for Families," says that "one of the biggest stumbling blocks for caregivers is knowledge. But, the more you learn, the better you'll be able to care for your loved one." 

 A stroke occurs when the blood supply to part of your brain is interrupted or severely reduced, depriving brain tissue of oxygen and nutrients. There are two main types of strokes: ischemic and hemorrhagic. Most strokes (about 87%) are caused by blocked vessels (ischemic stroke), and the other 13% are caused by bleeding, leaking, or bursting vessels (hemorrhagic stroke.) While less common, hemorrhagic strokes happen when a blood vessel ruptures and blood builds up pressure in the brain with nowhere to go. 

The long-term effects of a stroke depend on age, the type, and how much the brain can heal itself in the first year. Many people who have strokes make terrific progress and regain forms of independence.  

Yet, according to Johns Hopkins Medicine, about 23% of people who have had a stroke suffer a second one, particularly within 90 days of the initial one. So how quickly a caregiver responds to signs of stroke can save a loved one's life.

The CDC suggests being observant of the following:

  • Sudden numbness or weakness in the face, arm, or leg, especially on one side of the body.
  • Sudden confusion, trouble speaking, or difficulty understanding speech.
  • Sudden trouble seeing in one or both eyes.
  • Sudden trouble walking, dizziness, loss of balance, or lack of coordination.
  • Sudden severe headache with no known cause.

They also offer an easy-to-remember acronym for identifying and quickly responding to any of the above symptoms: act FAST.

FAST acronym

F—Face: Ask the person to smile. Does one side of the face droop?

A—Arms: Ask the person to raise both arms. Does one arm drift downward?

S—Speech: Ask the person to repeat a simple phrase. Is the speech slurred or strange?

T—Time: If you see any of these signs, call 9-1-1 right away.

My husband and I took on our first role as care partners for a stroke patient before getting married; we needed to relocate his mother to be near family and get support. Unfortunately, her stroke resulted in total paralysis on her right side as well as some brain trauma.    

According to the CDC, the main long-term effects after a stroke are:

  • Paralysis (inability to move some parts of the body) and weakness on one or both sides of the body.
  • Trouble with thinking, awareness, attention, learning, judgment, and memory.
  • Problems understanding or forming speech.
  • Difficulty controlling or expressing emotions.
  • Numbness or strange sensations.
  • Pain in the hands and feet that worsens with movement and temperature changes.
  • Trouble with chewing and swallowing.
  • Problems with bladder and bowel control.
  • Depression.

Challenges for Stroke Patients and Caregivers

Stroke care partnering has specific challenges grouped into three areas: physical, emotional/mental, and financial.

Physical

Rehabilitation and physical therapy are standards for living with a stroke and help a loved one regain some mobility. It's also essential to consult with an occupational therapist to review your loved one's home (or where they live) to mitigate safety concerns like stairs or loose rugs. 

Exercise and awareness of physical limits -- for stroke patients and caregivers -- can make the difference between burnout and a sustainable care circle that fosters recovery. For example, carrying your loved one to the bathroom might be needed, but a caregiver taking on that task to the point of a back injury only compounds the challenges.

It's also crucial to treat the causes of stroke that include heart disease, high blood pressure, atrial fibrillation (fast, irregular heartbeat), high cholesterol, and diabetes. In addition, doctors may prescribe medicine or encourage changes to diet, exercise, or the adoption of other healthy lifestyle habits (like quitting smoking). In some cases, surgery may even be helpful.

Emotional & Mental 

Stroke patients and caregivers alike experience depression and emotional swings. About one-third of all stroke survivors experience emotional difficulties, and many others may demonstrate personality changes or different behaviors. Sadly, this is sometimes more difficult for family and friends because the changes can be unexpected and confusing when compared to the loved one's personality before the stroke.

Financial

The American Stroke Association (ASA) estimates that the lifetime cost of ischemic stroke at $140,000; this includes inpatient care, rehabilitation, and follow-up care. Because everyone's care situation can shift, people often find the dynamic financial challenges difficult to understand fully. I know that our costs were far higher than that estimate.

Part of your education as a care partner is finding resources that exist for help. For example, Medicare or health insurance can cover the hospital stay and rehab, but learning what is -- or what isn't -- covered will help planning.

finances after stroke guideThe ASA suggests breaking the financial assessment of a care journey with a loved one who had had a stroke into four key areas:

  1. Social Security Administration Benefits
  2. Patient Advocate Foundation
  3. Prescription Drugs
  4. Ongoing Therapeutics Coverage  

Check out the ASA's "Finances After Stroke Guide" for more detailed information; many benefits are available specifically for stroke patients.

 
Care Circle Support

The CDC clarifies that rehab can often include working with speech, physical, and occupational therapists.

Speech therapy helps people who have problems producing or understanding speech.

Physical therapy uses exercises to help you relearn movement and coordination skills you may have lost because of the stroke.

Occupational therapy focuses on improving daily activities, such as eating, drinking, dressing, bathing, reading, and writing.

Caregiver Self Care

Burnout is a common phenomenon for long-term care partners, and you need to be in good shape to take on this challenge. Find time for yourself emotionally, physically, and recreationally. Seeing a therapist and dealing with your mental health and potential depression is essential. There's no "right" way to do this -- all care partners learn while doing it.   

Here are some suggestions for care partners in this situation:

  • Take time to laugh. A loved one's suffering isn't funny, but many of the situations you find yourself in can be -- a little humor goes a long way to rewriting attitudes.
  • Seek out support groups. There's great comfort in hearing that you're not alone in this caregiving situation and the chance to bond with others while learning from their stories.
  • Maintain your mental health. Journal. Express yourself. Be vulnerable. Work with a therapist.
  • Find time for yourself and the activities you love to do. These hobbies and cathartic escapes might not be as frequent but abandoning them does nobody any good.

Take advantage of respite facilities: they provide short-term care of a loved one for primary caregivers. This respite locator site will help you find one in your area.

Wellness Apps for Caregivers and Loved Ones

In the past, many care partners had to go it alone once their loved one came home from the hospital or rehab center. But with technology, we have some fantastic resources at our fingertips to help

make the care journey more manageable and less overwhelming. So the following are some helpful resources for those partnering with their loved one to recover from a stroke:

  • Caregiven Social (77)Caregiven is a mobile app explicitly made for care partners to provide the structure and guidance to manage a care journey confidently. It keeps track of appointments, documentation and provides the ability to share this information with anyone in your loved one's Care Circle. More than that, Caregiven offers guidance and resources to care partners in a way that supports them through their care journey. (Yes, this is our app, and we're biased, but care partners who use it tell us how much it helps.)
  • Medisafe is an app that can help keep track of your loved one's medications to ensure they take the proper medications on time. For many stroke patients, ongoing medication is a way of life. Medisafe allows your loved one to invite a 'Medifriend' so you can help support them if they forget to take their medication.
  • Headspace is a mindfulness meditation app that supports users in sleeping better and reducing stress. Taking time to relax and re-energize yourself will keep you grounded when providing care.
  • Constant Therapy is a speech therapy and communication app that can help people recovering from a stroke, TBI, dementia, or other neurological conditions. While many patients recovering from stroke benefit from in-person therapy, this app is a way for your loved one to practice on their own, with real-time feedback and in-app support.

Because being a care partner to a loved one who has had a stroke is different from many other care journeys and has its unique challenges, remember to take advantage of resources that can support and help you and your loved one through the long term. My husband and I learned through our journey out of sheer urgency and without much time for reflection. We hope that others will find themselves better prepared for the journey ahead by reading this piece and learning more through the linked resources. 

And we want you to know that open space resulting from education lets you and your loved one appreciate the moments of simple beauty that are there to be shared -- even and especially after a stroke.

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