Category Archives: Definitions

May is Stroke Awareness Month

May is national stroke awareness month kicking off a variety of activities meant to increase awareness about identifying a stroke, recognizing risk factors, and supporting research/treatment. Sadly, recently there were two high profile deaths from stroke, actor Luke Perry (52) and director John Singleton (51). The death of these two people at young ages reinforces that stroke can strike men or women at any age. While most people associate stroke with the elderly, in 2009, 34% of people hospitalized for stroke were less than 65 years old.

My wife, J, was a healthy 49 when she had her hemorrhagic stroke, and showed no warning signs or risk factors. Over the past two years, I’ve met and talked to many people in the 40 to 50 age range who are stroke survivors. I don’t think we, as a nation, are truly aware of the prevalence of stroke.

According to the CDC website, stroke is the 5th leading cause of death on the U.S. accounting for about 140,000 deaths per year but there are more than 795,000 strokes per year. Maybe more impactfully, stroke is either the 1st or 2nd leading cause of long term disability depending on the age group.

FAST

Stroke Statistics

Benjamin EJ, Blaha MJ, Chiuve SE, et al. on behalf of the American Heart Association Statistics Committee and Stroke Statistics Subcommittee. Heart disease and stroke statistics—2017 update: a report from the American Heart Association. Circulation. 2017;135:e229-e445.

  • Stroke kills about 140,000 Americans each year—that’s 1 out of every 20 deaths
  • Someone in the United States has a stroke every 40 seconds. Every 4 minutes, someone dies of stroke
  • Every year, more than 795,000 people in the United States have a stroke. About 610,000 of these are first or new strokes
  • About 185,000 strokes—nearly 1 of 4—are in people who have had a previous stroke
  • About 87% of all strokes are ischemic strokes, in which blood flow to the brain is blocked
  • Stroke costs the United States an estimated $34 billion each year. This total includes the cost of health care services, medicines to treat stroke, and missed days of work
  • Stroke is a leading cause of serious long-term disability. Stroke reduces mobility in more than half of stroke survivors age 65 and over

Take some time during stroke awareness month to determine the risk for stroke in your family and reflect on how prepared you are if the unforeseen happens.

Dysphagia – A Bitter Pill to Swallow

Recently, J had another Modified Barium Swallow (MBS) test to determine if she was aspirating what she was drinking or eating — that is, allowing liquids or solids into her trachea or windpipe rather than directing it all into her esophagus leading to her stomach. Since this is a potentially dangerous situation that could result in choking or pneumonia, I thought I’d write about it while it is fresh in my mind.

Dysphagia is the medical term used to describe difficulty swallowing. Dysphagia includes difficulty starting a swallow (called oropharyngeal dysphagia) and the sensation of food being stuck in the neck or chest (called esophageal dysphagia). Dysphagia is a common problem for stroke survivors.

J doesn’t display a lot of symptoms that would indicate she has a swallowing problem. She is on a regular diet, eats regular sized pieces and doesn’t cough or choke. The hint came from carefully watching her drink. She has a tendency to hold the liquid in her mouth, and occasionally, once she swallows, she will cough a bit. She has had problems with her swallow all along and has progressed from a nasal gastric tube to a PEG (percutaneous endoscopic gastrostomy) tube to a pureed diet and ultimately to a regular diet. Her current speech therapist was concerned about the liquids and ordered another MBS. The MBS is an easy test where the therapist administers barium-laced liquids and solids and examines the person’s swallow using a fluoroscope. Here’s an interesting example from YouTube.

J’s test showed liquids leaking into her esophagus. Just a small amount but enough to be concerned about it. The approach to deal with J’s problem is twofold:

  1. Thicken the liquids to nectar thick — We’re currently trying out a gel product that we are using to thicken coffee and juice. I’ll report on it once we have more experience. You can also thicken water but there’s less danger in aspirating water, so if you’re careful, and make sure the water is carrying anything else with it, you don’t need to thicken it
    There are also powdered thickening agents and you can buy pre-thickened liquids, but I felt that the gel was most convenient and flexible.
  2. Swallowing exercises — In J’s case, she could ultimately regain a perfectly safe swallow with enough practice. Yes, I said practice. There are a variety of exercises designed to build swallowing strength and timing. Right now, we are focused on doing “hard swallows'” Think about trying to swallow something the size of a golf ball — do a hard fast swallow where you try to force it down. The first one is easy — but then try 10 in a row. It’s quite a workout.

As a caregiver, I find it especially difficult to stay diligent about J’s swallow. Swallowing comes so naturally, and it’s difficult to discern from the outside, but I need to monitor her closely to ensure that her mouth is free from solids when she’s drinking liquids. General oral care is very important as well since bacteria in the mouth can travel to the lungs. Dysphagia is just another complication that makes caregiving so darn exhausting for both of us.

In future posts, I will review/recommend some of the cups and thickening agents we’re using.

What is a Caregiver?

Or how to dedicate yourself to someone else’s support

It makes sense in this blog’s infancy to discuss the definition of a caregiver, especially from my point of view as a male caring for a spouse.

Merriam-Webster defines Caregiver as “a person who provides direct care (as for children, elderly people, or the chronically ill).” Clearly, this is a generic, albeit reasonable,  definition which covers a broad swath of situations. I have had a caregiver role for my elderly parents, my daughter, and now my wife. All three situations are similar in that caring involves tending to the person’s daily needs be they medical, emotional, or spiritual. Caring for your spouse can be more complicated are it puts your relationship, one of choice and not of blood, in a compromised position;

In my wife’s case, she needs assistance with all of the activities of daily living (ADL), Her capabilities change from day to day, even hour to hour due to the nature of her stroke. What she was able to do on her own yesterday such as eating, she may not be able to do today. Each day brings new challenges, progress, and setbacks. Aside from ADLs, she also needs help with speech, reading, swallowing and everything else you can think of. These are not a big burden for me — we will talk about speech more at length in another post — but it all puts a continuous strain on our relationship — mostly due to exhaustion for us both.

Importantly, while J has a network of other care providers such as therapists, who concerns themselves with her physical, behavioral and mental health, I provide the point of coordination and constancy for all of these activities as providers come and go. I am throughout the day J’s psychologist, motivator, therapist, nurse, cook, and sitter, but mostly I am her husband, and that raises issues of intimacy, trust, security, and financial wellbeing. I’m learning that these issues are ongoing challenges, and honestly, at this time I don’t have comfortable solutions for some of them. I intend to write about each at length.

One topic I intend to explore is how to do what everybody tells me to do; that is “take care of myself.” How is really possible to care for yourself when you are so consumed emotionally and physically caring for someone else? Despite the ubiquity of caregivers, our society doesn’t place much value on caring for the caregiver. Sure, there are conferences, websites, even blogs, but rarely does a facility, for example, have a comfortable place (and a cup of coffee) for the caregiver while waiting, or does the home care nurse ask how the caregiver is doing. I’m not whining or complaining — I’m just saying that society has to play a role in helping the caregiver avoid burnout or exhaustion or whatever.

As a caregiver, all I truly want is to be reassured that my actions are having a positive impact on the situation and helping my partner improve, maybe even make her happy. That’s what motivates me every day, and finding that motivator is critical, regardless of your situation as it alone will help you survive being a caregiver.