The Truth About Caregiving



I have been a caregiver most of my adult life, both professionally and personally. Not only am I the mother of two adult children, I worked in health care as a nurse for over 20 years. On December 6, 2008, I had a massive hemorrhagic stroke. After that fateful day, I was no longer the caregiver. Suddenly, I was the one needing care. I am now functionally independent in most areas of my life, but I occasionally do need help with tasks.

Immediately after my stroke, I was critically ill. I needed help meeting my most basic needs: nutrition, breathing and mobility. As I improved, I could do more for myself but still needed some assistance. My husband, Michael, suddenly took on the role of my caregiver. It was difficult for me to acknowledge and surrender to the need for care. I would often fight the care I needed; denying that I needed help — sometimes to my own detriment.

I am presently nine years post-stroke, and I still struggle with depending on others. But over the years, as Michael has cared for me, we have discovered an intimacy that comes from being a caregiver to someone you love. And being the recipient of the care. This is not the life we envisioned when we started our journey, almost 30 years ago, and we have made many mistakes. But we have also learned there are gifts.

My friend Maria, who is a caregiver to her son, describes caregiving in this way. I think her words are powerful and accurately describe the delicate balance between loving someone who you care for and the hard work caregiving can be.

“Caregiving is demanding. It is draining. There are no breaks. It is no easier for the person who needs the constant care. There is no allowance for privacy, no chance to step away, no independence. But there are moments of profound tenderness and closeness that are greater than the closeness most people share. There is a trust like no other, an acceptance, and there are times of quietly surrendering to the moment. These are the gifts no one asked for. Treasure them like gold.”


 

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Stroke Rehabilitation Two-Part Series

Making the Best Decisions at Discharge After Stroke

The type of rehabilitation and support systems a survivor receives at discharge can strongly influence health outcomes and recovery. In this, the first part of a two-part series on stroke rehab, we offer guidance for the decision-making process required when it’s time to leave the hospital.

What to Expect in Stroke Rehab

Following a stroke, about two-thirds of survivors receive some type rehabilitation. In this second of our two-art series, we want to alleviate some of the mystery, fear and anxiety around the inpatient rehab part of the stroke recovery journey.
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AHA-ASA Resources

The Support Network

When faced with challenges recovering from heart disease or stroke, it’s important to have emotional support. That is why we created a network to connect patients and loved ones with others during their journey.

Stroke Family Warmline

The Warmline connects stroke survivors and their families with an ASA team member who can provide support, helpful information or just a listening ear.

Let's Talk About Stroke Patient Information Sheets

Let's Talk About Stroke is a series of downloadable patient information sheets, created by the American Stroke Association, that presents information in a question-and-answer format that's brief, easy to follow and easy to read.

Request Free Stroke Information Packets

Fill out this online form to request free information about a variety of post-stroke topics.

Caregiver Guide to Stroke

The Caregiver Guide to Stroke is meant to help caregivers better navigate the recovery process and the financial and social implications of a stroke.

Tips for Daily Living Library

This volunteer-powered library gathers tips and ideas from stroke survivors, caregivers and healthcare professionals all over the country who’ve created or discovered adaptive and often innovative ways to get things done!

Stroke Support Group Finder

To find a group near you, simply enter your ZIP code and a mile radius. If your initial search does not pull up any groups, try
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Stroke & Parts of the Brain

When Stroke Affects the Frontal Lobe

Of the four lobes that make up the cerebral cortex, the frontal lobe is the largest. It plays a huge role in many of the functions that make us human — memory, language, movement, judgment, abstract thinking.

When Stroke Affects the Temporal Lobe

The temporal lobe has several functions, mainly involved with memory, perception and language.

When Stroke Affects the Brain Stem

The brain stem serves as a bridge in the nervous system. It sits at the top of the spinal column in the center of the brain. When a stroke happens there, it can cause a few different deficits and, in the most severe cases, can lead to locked-in syndrome.

When Stroke Affects the Thalamus

The thalamus can be thought of as a "relay station," receiving signals from the brain’s outer regions (cerebral cortex), interpreting them, then sending them to other areas of the brain to complete their job.
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Departments

Stroke Notes

Stroke-related news you can use about new scientific findings, public policy, programs and resources.

Readers Room

Articles, poems and art submitted by stroke survivors and their loved ones.

Life Is Why

Everyone has a reason to live a longer, healthier life. These stroke survivors, caregivers and others share their 'whys'. We'd love for you to share yours, too!

Everyday Survival

Practical tips and advice for day-to day living after stroke.

Life At The Curb

A unique perspective on survival by comedian and stroke survivor John Kawie.

Simple Cooking

Cooking at home can be a daunting task, but a rewarding one for your diet and lifestyle (and your wallet). Making small changes in your diet is important to your heart health. Here are simple, healthy and affordable recipes and cooking tips.

Support Showcase

Our new department highlighting the good work being done by stroke support groups from around the nation. If you are part of a successful support group we should consider featuring, let us know!