SURVIVING STROKE: FIVE CAREGIVER STORIES

Stroke can be a devastating event and can be fatal. For those who survive, it is often a long road to full recovery, and they can’t do it alone. The need for caregiving is only growing as the population ages, and many people find themselves in a caregiving situation with no warning. It can be difficult to navigate this new role. Read on to learn how five family caregivers handled the situation and what advice they would give other caregivers.

Stroke: A Caregiver’s Personal Story

Susan and Johan DeRoos had been married just over a year when he suffered a stroke. Although they made it the ER right away, Johan had an unusual tear, called a dissection, in the wall of the left carotid artery. What had seemed like a small, manageable stroke early in the day became a life-changing event by midnight.

Johan had no speech, complete expressive aphasia, and full right-side paralysis. The prognosis was very bleak at times. He was discharged in a wheelchair into Susan’s care. In this first-person account, Susan describes the grueling caregiver schedule and how she coped:

“I have lists of names of other caregivers I can call, so that’s what I mean about building the network. It’s just as important as building your network professionally,” she says. “The same thing is true with caregiving — get online, get on a blog. Those best-practice things are what’s going to help you, whether it be understanding new research or therapy programs, wading through Social Security Disability or Medicare, what’s the latest on electrical stimulation, talking with other people. So create a network just like a business network, to share best practices.”

Read more of Susan’s advice in the full post.

Natalie’s Stroke Caregiver Story

Natalie was preparing for her graduate school entrance test when she got the call that her mother had suffered a stroke at the age of 48. After 5 months in acute therapy, her mom was able to come home but needed a lot of help. Natalie was struck by how the littlest things had to be considered when caring for her mother:

“There are a ton of small things that you don’t really think about. How is she supposed to put her socks on by herself? How is she supposed to reach the remote when it’s on a different table? Standing and sitting is really hard for her and somebody has to be present for that.”

Natalie describes how technology helped her mother in her recovery and aided her caregiving. Watch the short video of her experience here.

Stroke! The Unexpected Shock of Becoming a Caregiver

Even health care providers are affected by stroke. EMT Kristen Heller shares her story of caregiving for her father, who suffered a stroke. She arrived at his house to discover that his speech was slurred, and he was unable to get himself dressed. It turned out the symptoms had been occurring since the day before, so it was too late to try to stop some of the damage. After two weeks in the hospital, he was able to come home but unable to walk or talk.

In this post, Kristen shares about her caregiving journey and gives some very real and practical advice on the financial and emotional toll that the stroke had on the family:

“You will inevitably get angry at the person you’re caring for. You may sense feelings of resentment begin to creep into your mind. When they call for you, you may find yourself wanting to yell at them to shut up. I understand. I was there. It’s okay to get mad, but don’t let them see it. Remember, they are at the lowest point of their lives and it’s not their fault. In speaking with my dad since, a big part of his depression at the time was knowing how much his stroke affected my mom and me. Trust me, the person you are caring for feels bad, too.”

Continue reading her story here.

Jessica’s Story of Caregiving After Her Mother’s Stroke

Firefighter-in-training Jessica had to put her life on hold when her mother Shari suffered a stroke.  Jessica provided 24/7 care and took over the household duties, from finances to grocery shopping to laundry, while her mother recovered.

In this article, Jessica opens up about some of the emotional issues she went through while caring for her mother:

“It’s kind of selfish, to be honest, but everyone asked how [my mom] was doing,” Jessica said. “Nobody asked how I’m doing, but I’m here, too.”

Jessica said providing all the care wasn’t easy, but being there to celebrate her mom’s progress made the struggles worthwhile.

Learn more about Shari and Jessica’s journey in the full post.

When the Roof Fell In – A Stroke Story

Dan Martin’s wife Barbara suffered a stroke while on a family vacation in Greece. After nearly four months in hospitals and rehab centers, she was able to return home but had very little ability for to communicate and limited mobility.

For Dan, that is when the reality of their new life really set in. In this article he speaks candidly about what it’s like to care for a loved one who has suffered a stroke:

“It is true that many recovering patients go through episodes of depression, and my wife was no exception; after all, a truly terrible thing has happened to them. But… (and here’s where the caregivers come in) these do not have to be permanent, or even prolonged. [A note of caution here: many patients with aphasia cry a lot in the first weeks after losing their speech; this is not necessarily a sign of depression]. What is crucial is that the caregiver (and everyone else) tell the truth about the situation, be very supportive (without being glib or pretending the road will be easy – this is tough to carry off, but very important) and insist that the patient never give up the fight. This will sound trite, but the key element is love…. Pour it on!”

Read about his caregiving experience here.

 Stroke: A Caregiver’s Story

In 2010, Diane’s husband Bob suffered a massive stroke post-surgery. After a two-month hospital stay, Diane was faced with her first fight – to take Bob home rather than have him go to a nursing home, which is where the doctor and hospital were pushing for him to go. Fortunately, Bob was released into her care.

Diane admittedly had “no idea what she was getting into” and faced a steep learning curve when it came to caring for Bob. She expected there to be programs and help available but was shocked to learn her husband didn’t qualify. He was too old for some, too young for others, and barely over the income level for others. She was able to bring in a Certified Nursing Assistant for four weeks to “train” her before the insurance ran out.

In this post, Diane outlines the various physical, financial and emotional challenges she faced. One of those challenges was how others treated her husband:

“Another shock was the way people treated Bob post-stroke. “Baby talking” to him as if he were a child or an idiot. Talking over his head, to me, as if he wasn’t in the room. Shouting at him – as if he couldn’t hear. The friends and family who fled – as if stroke is contagious. Bob was still the same person just trapped in a disabled body. I wanted people to treat him with respect. Speak to him normally. Include him in conversations. Have patience as it sometimes took him time to respond. To listen. Visit. Make a phone call. Only a few did. I am grateful for those few.”

Learn more about her caregiving story here.

This educational blog was provided by Boston Scientific.