7 Tips for Traveling when Caring for Someone

LifeEffects.teva has published my article on tips for traveling with a disability or chronic illness. This article explores my experiences working with J to be able ultimately to undertake a family trip of more than 10 hours of air travel time.

LifeEffects.teva is a site providing patient and caregiver stories. The site is published by Teva Pharmaceuticals but the stories are not product-specific or endorsing. My contributions to the site are in the interest of increasing the reach of my content and do not constitute any endorsement of Teva or its products. That said, the articles and podcasts may be of interest to my readers.

I’d love to hear your concerns and suggestions about traveling with a disability or chronic illness.

The Importance of Family

As we enter the holiday season, it’s important to recognize the importance of family. I’m not brazen enough to think I can add something new to all of the articles written this time of year every year extolling the values of giving thanks and family. What I can do is relate my own experience and hope you can build upon it.

In my youth, I was all about avoiding reliance on my family in all forms. I didn’t want to feel indebted to anyone nor did I want to be inconvenienced by having to deal with other’s problems. In hindsight, I was heading down a potentially destructive path. Once I reached middle age and my parents entered their senior years, my view began to soften and I realized how many years of precious family time I may have wasted — it sounds cliche but it’s actually the way it all played out.

Now as I journey into my senior years, and care for my wife and young daughter, I’ve come full circle and now fully acknowledge both my desire to be close to my family and my growing reliance on them. While both my parents are now gone, I’ve increasingly reconnected with cousins on both sides of the family.

I could easily drone on and on about this topic but I want to keep this short and simply say: If you want to understand the true meaning and benefit of the holidays — any holiday — take time to think about your relationships with your family and look for ways to reconcile and reconnect. Life is challenging enough without being alienated from those who should be closest to you.

Most importantly, look around you for those without family who would benefit from your friendship, support, and comfort. The holidays can be especially hard on the elderly, the infirmed, the disabled, and their caregivers. Take someone into your heart and you may find your heart grows two or three times in size — in a good way.

Now, remember to breathe, reflect on the importance of family, and enjoy the holidays!

The Proverbial Last Straw

The poor little innocuous plastic drinking straw is under attack in the war against pollution. The problem started when a 9-year-old did the math and computed that roughly 500 million straws are used in the US each day. No one knows if this number is too high or too low but that’s not the point. The issue is that these straws, which comprise only 0.025% of the plastic waste flowing into the oceans, are something most people can do without.

Most people can easily adapt to other types of straws, be they paper, metal, or silicone, or they can elect to just not use one at all. My disabled wife, J, is one person who may feel a negative impact from the demise of the plastic straw because of its bendy, flexible nature. The loss of this feature could just be the straw that breaks the camel’s back. Between J’s dysfunctional motor control and her problems with the aspiration of liquids. a flexible straw is the best way to keep her healthy and hydrated.

Our community along with an increasing number of towns and cities across the country and around the world are banning plastic straws. Even chains like Starbucks and McDonald’s are jumping on the bandwagon evaluating alternative cup caps and eco-friendly straw materials. I’m all for making even the slightest difference when it comes to doing something good for the environment, I’ve started my own non-scientific evaluation of plastic straw alternatives for J’s use.

Here a Straw, There a Straw …

We regularly encounter paper straws when we go to local establishments and I’ve bought a few brands to try at home. I’ve also bought an assortment of metal and silicone rubber straws for home use, and I’m always on the lookout for a cup that doesn’t require a straw that would fit J’s needs. There are also bamboo, wooden, reed, glass, copper, silly, Krazy, and hay straws that we haven’t tried — though we did have a glass straw until it broke. Here’s a summary of what I’ve discovered:

  • Paper straws — I give paper straws a B- grade. Sure, they may – and I emphasize may be more environmentally friendly than plastic straws, but they get soggy too quickly. They aren’t flexible at all until they get soggy and I haven’t found any with a bend in them. The drinking end gets saturated and collapses especially when drinking hot liquids like coffee. (Yes, J drinks her coffee with a straw) Considering the environmental impact of making straws from paper isn’t well understood, and disposal of the now wet and possibly non-compostable waste means they may just end up in landfills anyway creating more pollution, I’m not convinced these are the best alternative — they may be the lesser of two evils.
    Paper Straws
  • Metal straws – I give metal straws a C. Sure, they work pretty well for cold liquids but they are not recommended for hot liquids as they conduct heat. Plus they are difficult to clean and transport. The bend in them is useful but they tend to be too long to use comfortably and don’t fit all cups well. While unlikely, I think they are an eye-poke hazard, and I’m not sure how to dispose of them. Finally, I think they add an odd taste to some liquids. The good news is that they could last forever — wait, is that good news?
    Metal Straws
  • Silicone straws – I give silicone straws an F. On the surface, silicone appears to be the best material as it’s flexible, inert, easily trimmed to an appropriate length and colorful, but it has one major flaw in being difficult to clean. I should have expected that issue when the straws I bought came with long metal (and plastic!) straw suitable pipe-cleaners. I’ve pretty much ignore these cleaners and just assumed that rinsing the straws out is sufficient. The problem is that you can’t see what’s growing inside your straw, because they are colorfully opaque, until it starts growing out of the straw. Something didn’t taste right so I got out the straw cleaner thingies and set out to clean the straws and boy, was I grossed out. Everyone of the straws needed to be scrubbed out which isn’t easy to do since the silicone likes to hold onto the cleaner. Maybe if manufacturers could produce clear silicone straws, their grade would improve to an A.
    Silicone Straws

So Now What?

At this time, we don’t have a solution we’re happy with and we continue to work on J’s swallow capability so that she might be able to avoid straws altogether. Plastic flexible straws are still being sold around here so we’ve stocked up on a solid supply expecting that they will be our mainstay at home for the near future. We’ll minimize our use as best we can and try to dispose of them responsibly and not create more pollution until better alternatives appear. What are your straw stories?

Navigating Long-Term Care

I spend an inordinate amount of time thinking about long-term care and worrying over who will take care of J if (or when) something happens to me. This is a complex and troubling problem exacerbated by: our age difference — I’m 11 years older and approaching retirement age; having an 11-year-old who has 10 years to go before graduating college (hopeful father!); having a limited number of immediate family members many of whom are already dealing with age-related problems; and a strong desire to keep J out of a traditional nursing facility.

The key question is whether J will regain any level of self-sufficiency with respect to activities of daily living (ADLs) and what will that look like. The answer is … nobody knows, but I suspect the most prudent thing to do is plan for the worst case where she is in need of full-time support for all activities. Putting aside the obvious financial challenges of this scenario, I worry about how J will receive that support in a way that maintains a reasonable lifestyle and allows her to continue her parental duties with our daughter. Remember, J is young (51) and could live a long life — her grandmother is thriving at 100 years old. Additionally, she doesn’t have any pressing medical conditions that might shorten her lifespan. She deserves to be able to live a fulfilling, love-filled life once I’m unable to care for her. To complicate matters even more, I haven’t even considered the scenario of what we will do if I become disabled and we both require long term care.

One Strategy of Many

Our current strategy is that my sister who is 7 years younger will take over the caregiving role for both J and our daughter. She lives nearby, is unmarried with no kids of her own, and very familiar with the daily requirements of running this family as she is my regular backup. She does have a full-time job that requires some travel so she would need a daytime aide and occasional full time support to help with J unless she is willing to stop working. While this is a sound plan, it’s a huge imposition. I’ve considered other family members or close friends, but none are easily able to assume J’s care. J’s older sister is already caring for their mom, J’s father is approaching 80, and J’s closest friends are dealing with their own life complexities. While I’m certain people (including friends in town) will step up to help if the need arises, there isn’t an obvious long-term care solution.

It all comes down to money. I have friends who are financially secure and caring for an elderly parent, and able to afford one or more full-time caregivers, housekeepers, chefs, drivers, etc. We don’t fall into that category by a long shot — if we manage our investments carefully, we should be able to put our daughter through college and provide a reasonable financial cushion for us (or just J) as we age, but full-time help is expensive and would drain our resources in a matter of years.

There Needs to Be a Better Way

Over the past decade, I’ve joked with family and friends about the need for building a “compound” where we can all live and care for each other as we age. The truth is that this is a reasonable idea, and something that we as a country should consider encouraging and supporting as more and more baby boomers approach retirement age. For example, J’s grandmother recently moved into a home which is basically someone’s house where a few senior citizens live, receive meals, medical assistance, and companionship.

This a compelling model, far more affordable than traditional long-term care assisted living or nursing facilities, but one not easily found in the US. Oh, and I should mention that most social workers and attorneys I’ve discussed all this with have already suggested that I separate and “spend down” J’s assets to qualify her for Medicaid — alleviating most of the financial burden of placing her in a facility. I’ve resisted this and will continue to until I exhaust all other options. Interestingly back in 2010, Joe Shapiro from NPR wrote about the increasing population of younger people in nursing homes, so at least, I know I’m not alone in trying to figure this all out.

As is the case with most of my posts, this one is not an exhaustive study of this topic and doesn’t even offer any advice. Our journey towards a solution will take time, and all the while the clock is running, and my sense of urgency is growing. What challenges do you face and what solutions have you found?

Women Like To Have Their Faces Washed!

This blog was created to discuss the difficulties of being a male caregiver, especially when the person needing care is your spouse and a female. Clearly, if you look back through my published posts you’ll see that I haven’t written much about that topic, not that I haven’t spent a huge amount of time thinking about it. The problem in part is that this is a difficult topic — duh, of course, and, confidentially, I’m embarrassed to admit how little I know about a woman’s needs despite considering myself a well-versed, modern male who has had plenty of female friends and relationships (and even two marriages) over the years — I even have a female sibling who I will herein refer to as my “sister.”

The other day, the problem came to a head when my sister, who was helping out for the weekend, declared that she had brought over some “Neutrogena naturals purifying facial cleanser” to the house because “women like to have their faces washed!”

No offense Sis, but I’m not sure if you meant that this particular product was especially nice for female face washing, or you were implying that I don’t wash J’s face regularly or correctly. I, of course, assumed the later, and, reluctantly, I admitted that I don’t wash J’s face either regularly or likely correctly. J has beautiful skin, and aside from an occasional wipe down and somewhat regular moisturizing with “Clinique Dramatically Different Moisturizing Lotion“, I try to do no harm. So, accepting that I had been put in my place, I now sit down to write about why being a male taking care of a woman is so hard. Note: This will be a lengthy ongoing discussion so right now I intend to highlight major areas and come back later with more details.

Women ARE from Venus!

If the person you care for is fully able to communicate their needs and desires, then you might want to skip the rest of the article. As a reminder; J’s speech and communication skills were directly impacted by her stroke so, while possible, she is often not able to tell me what she needs physically or emotionally. I have to rely on my knowledge of her behaviors, human nature, and what I learned raising a daughter– sadly, this many times isn’t enough.

Sure, there are obviously well understood physical and emotional differences between women and men, however, the devil is literally in the details, and unless you’ve grown up caring for a female body and psyche, you are not likely to identify or appreciate all the nuances. Let’s start a list of the trouble spots:

  1. Grooming — I apologize for the generalizations (throughout) but women require a level of grooming care that I’m just not comfortable with. Washing and caring for long hair, shaving underarms, legs, and other areas, moisturizing all over, and trimming and polishing nails are just part of the regular activities required to keep J looking and feeling her best. Now I’m not a grooming slouch but when faced with the actual tasks, I realized that this is tough stuff. Some things I ignore such as anything having to do with razors, some things I outsource to her girlfriends or salons like nails and hair, and the rest I just do my best and try not to embarrass her. I’ve gotten pretty good at creating ponytails. Oh, and I certainly need to mention the craziness of trying to brush and floss someone else’s teeth, and don’t forget the ear cleaning!
  2. Hygiene — Aside from normal grooming activities, women have a unique set of hygiene issues that men are poorly prepared to deal with — I call them the “3 P’s — Pee, Poop, and Periods.” This is the area where, excuse the pun, the rubber meets the road. Remember, J is bladder and bowel incontinent. Men are literally built differently and I, for one, have found it challenging even after 2+ years to know exactly how to deal with it all. The problem is a woman’s anatomy packs too many orifices too close together. Now I am very familiar with female anatomy being a normal straight male and having tended to an infant daughter, but adult feminine hygiene issues are a magnitude more complicated than I expected. There is so much to share about my experiences that I’m determined to explore it all in another post, so I’ll just leave you with two important pieces of advice. First, no matter the mess, wipe front to back! Second, urinary tract infections (UTIs) which are far more common in women than in men thanks to the proximity problem mentioned earlier can make a brain injury patient (or senior) appear to be crazy — yes, they can go from coherent to being on another planet in the blink of an eye. The first dose of antibiotic, once you figure it out, will reset it all to normal.
  3. Dressing — J has a lot of clothes. I am overwhelmed by the volume, the complexity, and the layering of her wardrobe. Thankfully she preferred a simple color pallet so there aren’t many combinations that would be awful. Of course, then there is what goes under the clothes. When I was in high school, I spent a summer working in my friend’s dad’s lingerie business warehouse unpacking bras being shipped in from Haiti. This made me incredibly knowledgable about bras and highly popular with girlfriends and their moms since I could purchase the bras for $10 each. However, when faced with actually putting a bra on a woman on a regular basis, I become a clumsy fool with ten thumbs. The only good news is that I’ve become proficient at how women remove their bra without taking off their shirt. Poor J has such a sorrowful look on her face when I’m fumbling around trying to get her bra on and off. ‘Nuff said. As for the rest of the dressing, I tend to stick to a comfortable wardrobe consisting of short and long sleeve tees, sweat and athletic pants, and shorts and sneakers — a far cry from how J dressed for her past corporate role even when working at home. When dressing to go out, I often rely on one of her girlfriends or my sister to help pick an outfit, deal with jewelry — don’t get me started on pierced earrings — and any finishing touches.
  4. Dining/Drinking — J’s stroke affected her swallow so she has some problems with aspirating liquids. Thankfully, she has no problem with solid food and has a good healthy appetite. When my daughter was an infant, I thought that feeding her was a nightmare. I would inevitably end up covered in baby food, as would she, and uncertain whether enough of it had made it into her mouth. It was a mess. Feeding J makes that look like child’s play. J’s ataxia and motor control issues make it difficult for her to use utensils and she tires quickly after trying to feed herself, so I take over. The first piece of advice is that soup, rice, and spaghetti are not your friends! I’ve tried forks and sporks and spoons and foons(?) but nothing works perfectly and there are many variants to choose from. Luckily, our 85 lb hound dog happily sits with her head in J’s lap waiting patiently for whatever falls. Oh wait, I’ve gotten off track from the theme of what’s makes women different … in the case of dining and drinking it all has to do with mixture and volume. I know a lot about J but I never really kept track of how she likes to eat her food or how much she eats and since I eat a lot and tend to mix all my food together on the fork, I regularly feel like I overfeeding J and mixing stuff together that she would never mix — thankfully, she will correct me at times.
  5. Intimacy — This is the section that has caused me to avoid writing this post for so long, not because I’m embarrassed or modest, but because I honestly don’t know what to say. We haven’t figured out post-stroke intimacy yet — sure, there’s hugging and kissing and hand-holding but venturing beyond that is difficult. I know there’s a desire on both sides but it’s hard for J to communicate what she wants and when — this can be hard even in normal relationships. And then there’s my sense that caregiving and intimacy don’t mix well. I’ve seen a side of J’s daily existence that is hard to push aside. Don’t get the wrong impression, I love and desire J and think she is an amazingly attractive woman. It’s simply that our daily activities are exhausting mentally and physically and it’s not easy to get into the mood. It’s kind of like when you have the best sex on vacation when you’re away from the day to day crap. I’m determined to explore this subject more with J and in future posts.
  6. The Art of Caring – I was brought up in an era when a common belief was that women are natural caregivers and men lack empathetic and tenderness skills. I don’t accept that as I luckily had a father who absolutely tenderly cared for my mother who was plagued with a variety of ills. Make no mistake, there are good caregivers, maybe even natural ones, and there are certainly poor caregivers but the distinction is not determined by gender. People regularly say to me, “this must be so hard for you”, with a tone that makes me feel as if they are actually saying, “you’re a guy, how can you know how to do this?” I sometimes feel the need to defend myself explaining that before all this, I was a self-sufficient person — yes I even iron my own shirts. My advice to both men and women is to not let stereotypes color your view of caregivers. Each has their own strengths and weaknesses.

Well, I think that’s enough for now. I’m sure I forgot some things and I certainly didn’t get into the weeds on some of these subjects, but I’d love to hear your thoughts on these challenges.

Loneliness Affects Both Survivor & Caregiver

On this Memorial Day weekend when we remember and celebrate the contributions of the countless women and men who have died in service to this country, it’s also an important time to remember those who have survived, and the people who care for them.

A common refrain is that war changes people, and history has shown that when these people try to assimilate back into society after their service, they face isolation, disappointment, and depression, especially when dealing with a disability. A strong multidisciplinary network of medical professionals, social workers, community organizations, family and friends is required to help people through this journey. A network that sadly often breaks down and fails these individuals as evidenced by the increasing and alarming number of suicides among military service-people and veterans.

I don’t have much direct experience caring for current or ex-military, though I did help my dad, a Korean War veteran who passed away in June 2018, manage his later years and his interactions with the Veterans Administration. Dad was an amazingly outgoing and social person through most of his life until my mom died over a decade ago, his health started to fail and his financial situation became dire. He had much in common with others of his generation in his unwillingness to talk about his military experience or his childhood during the Depression and World War II. As he aged, he settled into a disturbingly isolated existence despite the efforts of myself and my sister to keep him active, but he appeared comfortable with this as if he had decided he had done enough during his life and felt it time to simply watch sports, sleep, and eat.

In one of my caregiver support groups, I often hear caregivers lamenting that their spouses or parents who are well into their 80’s or 90’s are doing the same — just lounging through the later (and last) years of their life, and I have mixed feelings about this. I, as I suspect many do, have this vision of being active and vibrant right up to the end — maybe this is what keeps me going, but this needn’t be the only reality. As long a person’s emotional and physical needs are met, who’s to say how they should live their life especially after giving so much for so many years.

But I digress … I see a similarity between what military survivors (and their caregivers) face, and what the survivors of any extraordinary medical event such as stroke and their caregivers face, and that is loneliness.

A traumatic brain injury or cancer or any life threatening event that has lasting implications creates barriers between the survivor and the rest of the world. These barriers might affect communication, physical activity, financial security or more, and may be actual or perceived. The isolation that results takes a person who might have been active, social and self-sufficient, and makes s/he dependent, depressed and lonely. It can literally take a village to break through this and keep the survivor vibrant and engaged. We often see stories on the news of survivors who overcame great odds and rose to great heights — these stories are inspiring and offer hope, but they are also rare, and out of the reach of many.

One of my favorite books, “A Wrinkle in Time” by Madeleine L’Engle tells the story of a family’s battle (along with the help of some cosmic friends) against IT, the Dark Thing that is overtaking the cosmos. IT sucks the joy and happiness out of everything it touches but can be, and is ultimately defeated.

“Suddenly there was a great burst of light through the Darkness. The light spread out and where it touched the Darkness the Darkness disappeared. The light spread until the patch of Dark Thing had vanished, and there was only a gentle shining, and through the shining came the stars, clear and pure.”

I propose that IT is in part, loneliness and isolation — the loss of the feeling of community and belonging with the people around you. This survivor’s black hole pulls others into in like a gravitational force — the first to succumb may be the caregiver(s) who find life increasingly disrupted. I knew when J first had her stroke there would be an amazing outpouring of compassion, concern, assistance, and love from our friends, family and community, and there was just that. I also knew that over time this would wane as people got caught up in their own lives and time marched on, and I tried to proactively discourage too much help early on as I expected it would more beneficial one or two years later when the battle was still going on. I was trying to avoid the fatigue that inevitably sets in after disasters be they national, communal or individual. Certainly there are those friends and family who have provided ongoing support and encourage through J’s saga, though this circle has shrunk significantly over the past two years as our new reality has settled in — to no one’s fault, as I’ve said repeatedly J’s battle is a marathon, and not everyone is equipped for the long haul.

So what can the average person do to help? I believe the answer is simple whether we’re talking about a veteran or some other type of survivor, and it doesn’t require money or much time or even a casserole. The answer is best expressed (surprisingly) by this 1980’s AT&T commercial refrain and song most memorably sung by Diana Ross:

Reach out and touch
Somebody’s hand
Make this world a better place
If you can

Take a little time out of your busy day
To give encouragement
To someone who’s lost the way
(Just try)
Or would I be talking to a stone
If I asked you
To share a problem that’s not your own
We can change things if we start giving
Why don’t you

Reach out and touch
Somebody’s hand
Make this world a better place
If you can
Reach out and touch
Somebody’s hand
Make this world a better place
If you can

If you see an old friend on the street
And he’s down
Remember his shoes could fit your feet
(Just try)
Try a little kindness you’ll see
It’s something that comes very naturally
We can change things if we start giving
Why don’t you

Reach out and touch
Why don’t you (Why don’t you)
Reach out and touch somebody’s hand
Reach out and touch
Somebody’s hand
Make this world a better place
If you can

Songwriters: Nickolas Ashford / Valerie Simpson
Reach Out and Touch (Somebody’s Hand) lyrics
© Sony/ATV Music Publishing LLC

Have a great Memorial Day weekend and take a moment to reach out to someone struggling against the Dark Thing!

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.

Every Little Bit Counts

I  am often searching for a cause. I’m driven in part by my desire to give back, sometimes by thinking I can make a difference, and occasionally simply to prove to myself that I still have value beyond what I do at home. Causes have taken many forms over the years including supporting and volunteering for charities, helping local small businesses,  being an adjunct professor (certainly not a financial imperative), and helping friends and family where I can. My latest cause falls into the category of Sisyphean tasks that I, reluctantly, take on to remind myself (and the world) that we can all be better and smarter. On my hit list are companies that produce a product, that I as a caregiver depend on, where there is a lot of waste.

For example, I serve J a lot of yogurt, specifically, Chobani non-fat Greek yogurt (with fruit on the bottom) mixed with some granola — her go-to breakfast. We can go through about 20 cups of yogurt a month and at $1.10 to $1.80/cup, the cost adds up. What I noticed after opening and serving hundreds of these cups over the past two years is that I can’t get all of the yogurt out of the container. There are two ridges, one near the bottom and one at the top that thwart any attempt to clean the inside out with a spoon. I’ve tried a small rubber spatula but it just shouldn’t take that much effort. I’ve measured what remains in the cup over the past fifty cups or so and it averages 10 grams or about 7% of the contents. At an average $1.40/cup, the waste equals about $0.10/cup.

Chobani Cup Measurement

This might not seem like much, but if you extrapolate it out for a full year. it adds up. An easier way to grasp the magnitude of the issue is to consider the impact to Chobani’s bottom line if they could reduce the amount of yogurt in each package by 7% and still charge the same amount per cup! Anyway, I’ve made my concern know to Chobani thru their Facebook page and they responded with “Thanks for the feedback – we’ll pass it along, and send you some coupons.” Note: They quickly sent $2 worth of coupons — hmmm.

Now you might be asking what does any of this have to do with being a caregiver. The answer of course is money, with a bit of my passion for efficiency thrown in. We’re living on J’s long term disability insurance, much reduced from our pre-stroke earnings, and while I don’t want to cut us off from things we love for the sake of savings a few cents, I would like to maximize the value we get from our purchases. When you analyze what is the true cost of many of the products we use, these “few cents” really add up.

Next on my list is Mott’s Applesauce — we go through a lot of applesauce each month since I have to crush J’s pills. I buy the 48 oz. container which suffers from the same problem as the Chobani cup — too many ridges make getting every last drop out impossible. My measurements show that nearly 10% of the contents is left in the container. Interestingly, with some containers, you can usually just stand it upside down to get reluctant contents out, like with ketchup bottles, but for some unknown reason, the Mott’s cap is not one piece, so the liquid leaks out. I consider looking for other solutions to this problem to be too much effort — after all, a simple packaging change would solve the problem. Companies need to think first about product usage and waste, and than consider marketing gimmicks and packaging efficiencies within that context. I’ve posted my concern on their Facebook page but haven’t yet received a response.

Some of the other products I have problems with include Tranquility Premium Overnight Disposable Absorbent Underwear, Bonne Maman Preserves, Mini Babybel Cheese — the list keeps growing. Each of these products have different deficiencies. The underwear’s problem is that, in J’s size, they come in packages of 18 — not a number that makes any sense to me. Sure, I can (and do) order them by the case which just means I get multiple packages and waste more plastic. The preserves jar suffers from the same problem as the yogurt and applesauce — too many ridges. And the Mini Babybels …. well, what can I say … I haven’t done the measurements yet but I wonder how much the pretty wax wrapper weighs compared to the 20 grams of cheese. I know these cheeses are cute but I’d like a larger portion option.

Waste is a huge problem for the world, especially so in our consumer-oriented society. Companies are becoming increasingly aware of product and packaging waste issues, but it’s often in the context of lowering manufacturing or shipping costs, and not about how to make their customers happier. If we all become more sensitive to these issues and let the manufactures know our concerns, maybe we can make a difference. Do you have any products that you find are wasteful?

“Why Can’t I Die?”

Amazingly, the short break I intended to take back in October to recharge for the new year turned into a five-month hiatus. Now I’m back, not so recharged, but determined to blog on, and anxious about embarking on this restart with the difficult topic of death, or, to be specific. the question of what do you do when your spouse, or the person you are caring for, express the desire to die.

First, let me remind you that I am neither a doctor. lawyer or psychologist, and that the opinions and suggestions expressed here are singularly my own. For this particular circumstance, I urge you to seek professional help — even call a suicide prevention hotline if you must, as expressions like this should always be taken seriously. That said, given my wife’s physical limitations, there’s little chance of her being able to act on her desire on her own, thus giving me time to ponder the topic.

J is not a person prone to depression. She used to wake up early every day with a smile on her face, energy in her step, and optimism about the day. That’s not to say she didn’t have bouts of depression, as we all do, but she was generally a positive person. Since the stroke, her demeanor has been mostly flat with only an occasional shortlived smile, laugh or outburst of anger. She hasn’t been able to describe how she normally feels beyond just saying, “I don’t know.”

The depression became evident around the first anniversary of her stroke when she appeared to “suddenly” recognize the severity of her disability. It became more severe a day or so after she enjoyed the company of family or friends or a special event. Her 50th birthday party bash, 13 months after the stroke, prompted the first time I heard, “Why can’t I die?”, a few days after the party. I was caught by surprise, and I know my response was inadequate and unpolished — simply, I explained to her that she was deeply loved by me, our daughter, her family, and friends, etc., and that she had made tremendous progress since the stroke, and the future was bright as long as she stayed motivated and worked hard at therapy, and blah, blah, blah. All of this was true and heartfelt, and may have reassured her a bit, but, by no means, did it put the subject to rest — excuse the pun.

Over the course of the following year, the topic came up several times again, often after her being reminded of her current limited state. As her progress slowed, which was expected, and she had a particularly bad month set off by a urinary tract infection, her despair became deeper, her energy waned, she lost weight, and she was losing hope. (Urinary tract infections are a nightmare, so much so that I will devote a post to them at a later date.) With the help of her psychologist, neurologist and physiatrist, we attacked the problem with a slight modification in her medications — not the anti-depressant she had been on since leaving the hospital — hoping to increase her energy level. That change coupled with a lot of talking got her through this dark period, but again, we all knew this would be a continuing problem for her, and for me.

J and I didn’t have any living wills or medical directives but we had talked about how we would want conditions to be treated if needed. When I learned of J’s stroke and spoke to the Emergency Room neurosurgeon, steps had already been taken to improve her chances of survival, before I had an opportunity to assess the situation. In hindsight, knowing what she has endured since the stroke, I tend to think that if I had understood the severity of the injury right after the event, I would have just let her go, but I’m not certain I could have followed through with it. There were a few instances, such as weaning her off the respirator, or when the shunt was implanted, that I might have been faced with that decision again, and in those instances, I think I would have found the strength to let her go if the alternative meant ongoing life support or other situations we had discussed previously, but she passed those trials, and no one knew for sure what the future would hold as far as the extent of her recovery. While the medical team and I were initially hopeful, I was reminded by them repeatedly that it would take 18 to 24 months to fully understand the extent of the damage and the potential for repair.

So here we sit 25 months later, and J asks me, “Why can’t I die?”. I suppose the factual answer is “because society doesn’t allow it” … despite all of her impediments, I think she knows that, so the question she may actually be asking is, “What do I have to live for?”, and that question is much easier to answer, in my opinion. As limited and frustrated as she is, she can still enjoy life, find new meaning and satisfaction, and participate in the rearing of our daughter, if she has the will to do it. I keep feeling that if she can only regain some of her independence, be it walking or eating or speaking, then she is truly on the path to recovery, and I’m determined to help her get there with continued therapy and encouragement, seeking out new technologies that she might benefit from, and helping her brain to relearn what it has lost.

Ironically, I’m the one who has battled severe depression throughout my life, and it follows me like a shadow now through all of this, but I fight it back minute by minute in order to keep J and our daughter safe and happy. The worst time for me is after everyone has gone to sleep and I sit down for some “me” time — I think the pressure of the day just overwhelms me and drives unhealthy behaviors like binge eating and not getting enough sleep. I’m cognizant of this and working to control with the help of therapists, family, and friends. Interestingly, when I start to lose hope, I think back to the 1980’s Sandra Boynton poster, “Don’t let the turkeys get you down!” I’m not sure if she originated this phrase that is supposedly based on Illegitimi non carborundum, mock-Latin aphorism possibly read as “Don’t let the bastards grind you down”. I simply picture the image and it makes me laugh, and laughter is truly the best medicine. I hope you laugh too!

DontLetTheTurkeys

A Grab Bar That Goes Where You Need It

I struggled for quite a while selecting and installing grab bars around the house to help J steady herself. I started off looking at bed rails — it took several tries before I found one that was sturdy, easy to install, and didn’t take up too much room. Many of the bed rails required elaborate installation or were difficult to remove. My choice was the Medline Bed Assist Rail. It’s a sturdy, inexpensive, easy to install and move, and it has a handy pocket. It’s not the safest solution so you have to be careful about exerting too much sideways force, and using it effectively does require some proper positioning when getting into and out of the bed. Overall, I’d give it a B+.

Then I decided to tackle the bathrooms, and that was a nightmare. There are so many choices and opportunities to place bars, most of them incorrectly. I had a couple of occupational therapists come to the house and give me guidance on placement with respect to transfers and standing safety. Then I used the bar models with suction cups to test those positions. Note: I don’t recommend the suction cup models — they are inherently unreliable and dangerous. They are useful for testing purposes if you’re careful about not relying on them totally. I finally installed two grab bars  — actually, I had my contractor do the installs — one in the master bath to assist with showers, and the other in the modified guest bath to assist with toileting.

One of the problems with grab bars, and I can think of many problems, is that they are often not where you want them to be unless you’re able to do an install like an accessible bathroom in a commercial establishment. My bathrooms aren’t that big, and while a single bar is helpful, I felt I wanted a bit more security.

Then I found the Stander Security Pole and S-curved Bar.  I’d prefer to not make major permanent alterations to the house in case I need to sell in the future, so I’m always looking for temporary but reliable solutions. The Stander product allows me to put a grab bar where I need it without permanent installation. In the pictures below, you can see it installed alongside a stall shower so that it provides security on the opposite side of the toilet from the wall-installed bar. Importantly, the s-curved bar can be rotated as needed. If you have a solid floor and ceiling the pole is very secure — I use it myself and put all my weight on it without a problem

Stander Bar 1The Stander product is affordable made even more so by not requiring any permanent installation. It wasn’t the easiest thing to assemble and place myself — I had to ask my daughter for assistance as it’s long and cumbersome to get through the doorway and in place. You may also need help holding it upright while you lock it in place, done with a supplied wrench that extends the pole. Overall, it wasn’t that much effort. I’d give it an A.

BR 3

I’ll talk more about safety and security solutions in future posts. Have you found any solutions you’d recommend?

 

7 Tips For Male Caregivers (or Not)

Caregiver.com published a post titled “7 Emotional and Physical Well-Being Tips for Male Caregivers” in June 2017. I wouldn’t usually comment on something over a year old unless it was timeless, and I’m certainly not criticizing the author, but I was struck by the extended negative comment this post received written by “Paul”.

Here are the 7 tips quoted from the post:

  1. Participate in a support group.
  2. Vary the caregiving responsibilities among family members or friends.
  3. Exercise on the average of three times per week and maintain a healthy diet.
  4. Establish time for meditation.
  5. Practice time management.
  6. Prepare all necessary documents, i.e.: insurance policies, deeds, loans and funeral arrangements.
  7. Stay involved in hobbies.

I am regularly advised, as I am sure you are,  by friends, family, and medical practitioners to be sure to take care of myself. This “advice”, sometimes very generic, and sometimes very specific (meditate, take these supplements, become vegan, run marathons, and so on) has become my “Sword of Damocles” hanging over my head, always reminding me that my life is at risk, and so are the lives of those I care for.

What has become an admonition is growing tiresome. I know all of the perils I face — I know them all too well. What I need are not “tips” … what I need are solutions! And for this reason, I felt Paul’s pain and frustration.

I’d also like to note, and this is a bit of a critique of the post, that the seven tips are in no way specific to men regardless of the post’s title. This tips, which are all valuable, apply equally as well to female caregivers, and that may be part of Paul’s and my reaction.

Now, if you are expecting me to offer the answer to it all right now, you will be disappointed. Afterall, that I why I started this blog so that we can discover the answers together. If I knew how, or maybe more accurately, if I were able to take care of myself, then I wouldn’t feel so stressed, exhausted, anxious, frustrated, sad, overwhelmed, and achy. I would wake up everyday with a positive attitude, well rested, full of energy and enthusiasm, and looking forward to the next problem so I can develop the next solution — well, at least that’s how I think it would go.

All of the 7 tips are on my ToDo list, and I’ll get right on them after I deal with all the other things I was expecting my part-time aide to do this morning, who unexpectedly didn’t show up. Every day is a new adventure. What’s on your ToDo list for maintaining your physical and emotional well-being?

Navigating Customer Service & Support

These days, customer support often seems like a dirty word. All of us consumers likely have an expectation of what constitutes good customer service, and, based on my experiences, many of are often disappointed.

What is good customer service, and why am I writing about it in a blog for caregivers? Good customer service is not the exclusive domain of any one type or size of company. I’ve dealt with large companies that are amazing and small companies what are awful, and the reverse. Having been in customer-facing roles most of my career, my definition of good customer service includes the following characteristics:

  • Monitored and responsive (and easily found) channels for reaching customer service representatives. I don’t care if it’s by phone, Twitter, Facebook, carrier pigeon, or shortwave radio. Companies need to make it easy to find their contact information, and they need to respond! (This is my biggest pet peeve!)
  • Customer service representatives who listen and empathize, not in a scripted, emotionless way, but in a sincere, “I feel your pain” kind of way.
  • Company customer service policies based on honesty and transparency. This means if the company is having a problem with quality or fulfillment or whatever, they should fess up and not try to make excuses.
  • Following through on commitments is a must. If the company promises to take care of a problem, or do something special, then they need to do it — no ifs, ands, or buts.
  • Representatives must be empowered to look for alternative solutions if required. They might have to recommend a different product, or even a different company, but in the end, they should be helpful and not obstructive.

What all these things have in common is that they demonstrate the company’s integrity, and integrity builds trust, and trust builds loyalty. I often read how loyality (either company or brand) is a thing of the past, but I don’t agree. I believe that while it is easier for consumers to switch, they would prefer to stay loyal if they are happy with the product, service or company.

So, back to “why am I writing about this in a caregiver’s blog?” The reason is that as a fulltime caregiver, and fulltime parent, experiencing good customer service is paramount to my efficiency and my sanity.

The Good, The Bad, and The “I’m going to scream!”

Here are a few heavily redacted examples to prove my point — I’ve changed the company names so no harm would come to the various customer service representatives.

When J first came home from short-term rehab, I bought a lightweight transport wheelchair from a well-known national medical equipment supplier. I loved the chair! After a few months, the brakes started to fail — I called customer service. After several attempts at explaining what the problem was, they routed me to Quality Assurance. As directed, I took photos and video and sent them to the QA rep who was nice but not so helpful. First they sent me replacement wheels, which turned out to be for a different model. Then, after I discovered that the problem was the brake assembly, they sent me an entire new chair and asked that I return the old one.

So I used the new chair, and after a few months, the problem reoccurred. Again, I had to go through the same process with customer service and then with QA. I explained why I thought they had a defect in their brake quality and specifically showed them what was wearing out. All I needed was that one little part. Then, after all of that, I heard nothing — for several weeks. No response to my emails, no response to voice mails. Then one day, a new chair showed up — a completely different transport chair that was certainly better build but much heavier.

This time, I called the QA manager listed on one of the last emails received, and he happened to pick up. I asked about the status of the complaint and about the new chair I received without notice. I asked if I needed to return the old chair which wasn’t that old. He said would look into it and get back to me. Now, four weeks later, I’ve heard nothing.

This example breaks many of the suggestions I offered above. There is no honestly or transparency, the reps and managers are not empowered, there is no honoring commitments, and in the end, I have no trust in the company or their products. And when you are transferring your wife from the chair to the car on a hill in the rain, you need to have trust in the chair!

As I mentioned earlier, the customer service problem that makes me crazy, is when companies don’t monitor and respond to their email, voicemail or social media inquiries. I used to get paid a lot to provide advice to businesses, but now I will offer some free advice:  If you don’t pay attention to your contact points, then don’t advise people to use them! In fact, don’t make them available at all. This holds true even for customer calls that you leave on hold. When I’ve called a company two or three times, I get the same “We apologize for the delay but we are experience a spike in customer calls” message, all it does is lead me to believe that either you have serious problems or you just aren’t staffing your call center adequately.

I have many more stories — I take pride in the customer service problems I’ve tackled on behalf of myself or my clients — but let’s stay positive and proactive.

What To Do When You Aren’t Satisfied

First, and most importantly, stay calm. Yes, there it is, I said it. I don’t always do it but I am a strong advocate of it. Stay calm! It’s likely that the person you’re screaming at has no control, no stake, and no authority. Treat bad customer service like a crime mystery and be patient and methodical about solving the problem.

Second, document everything and take names. It’s important that you keep track of what was said, what commitments were made, who you were talking to and when. This is useful as you escalate your case to the higher powers at the company, but especially useful if you end up suing or using an outside service like WNBC-TV New York’s “Better Get Baquero“.

Third, escalate, escalate, escalate! If you’re not getting satisfaction, ask for the manager. If the manager is not helpful, ask for the manager’s manager. Worst case, ask for the address of the CEO’s office so you can write a letter or call. I’ve written many letters throughout the years — some praising, most complaining — and for the most part, letters to the CEO do get a response. You might not get satisfaction, but you will get a response.

Finally, and maybe most importantly; companies — especially public companies — are especially sensitive to complaints voiced on social media. Post your problem, if you’re willing to be public about it, on Facebook or Twitter and be sure to tag the offending company. Be reasonable and thoughtful, and you might be surprised how quickly you get a response. TIP: this works great for getting the attention of your state elected officials.

I’m sure this topic will show up again in future posts, so I’d love to hear your stories and your solutions.

Reducing the Stress of Hiring an Aide

I just hired a new aide to help J. She’s coming twice a week for 4 hours in the morning. She’s (K) is independent (not through an agency), a CNA (Certified Nursing Assistant), drives, and comes very well recommended through a local personal contact. I’m hopeful this turns out to be a good experience for J and for me — this time.

Home Care Aides

I’ve been through multiple attempts at hiring an aide in the year since J came home. My opinion is that mostly they have been more troublesome than helpful — not because the individuals were a problem, but due to the complexities of caring for J and that every aide has a different approach to care. When J first came home, she was on home care which meant that her therapists came to the house, and insurance paid for an aide to come twice a week for an hour. I’m actually not certain what insurance would have paid for since I could never get agreement among the home care agency, the aide and the insurance company. So, we settled on an hour twice a week — in reality, she would only stay 30 minutes during which time she attempted to get J out of bed (with assistance from me) and showered (with more assistance from me) and then she was gone.

I didn’t know any better, and having her here did let me focus a bit on my daughter but, in reality, she just created more stress for me, and J wasn’t that happy either. We went on like this for several months and then I tried to hire an aide to provide longer periods of assistance outside of insurance.

Moonlighting Aids

First, I tried hiring one of the aides from the short-term rehabilitation facility that J had been in before coming home.  I want to be clear that we were not happy with anything about this facility, aside from the speech therapist, and I only considered hiring one of the aides because she seemed competent, J appeared to like her, and her rate was reasonable. We agreed to try one session, and it was mostly a disaster. While she was competent in the rehab setting, she was totally uncomfortable in a home setting. Nothing worked for her — the bathroom was too small,  we didn’t have the right supplies, she wanted to come earlier in the morning than we could deal with and on and on. So, that was the end of that.

Agency Private Placement Aides

Next, I tried using the home care agency’s private placement. This was the most expensive and least flexible of the arrangements costing 10 to 25% more than an independent contractor and requiring a minimum of 4 hours. Initially, I liked the idea of using the agency so when the person was unavailable, in theory, they would be able to send someone else. I also expected better management and training of the individual to deal with the home environment. Neither of these assumptions turned out to be true.

The first person the agency sent was hesitant to enter the house because we have a large dog  who is intimidating due to her loud bark and enthusiasm, but totally harmless. The agency knew of the dog. The aide finally entered and seemed to be comfortable with the dog, but right before the next visit I got a call from the agency that she wouldn’t be back. The next person who came appealed to me, but she and J did not get along. Then, I think we got a reputation for being “difficult” and the agency was unable to find someone who could meet our requirements.

Independent Agency Aides

My next attempt was to use a independent agency that came well recommended by our social worker. The agency, in actuality just a single woman who had a stable of aides she was able to schedule, found someone who could work our preferred schedule, and J and I both loved her. Even the dog was happy! Things were going great for a few weeks and then a miscommunication occurred == I had been looking for another aide to cover a one time need, and had contacted both the private placement agency and the independent agency. I found someone through the private placement agency and let the other person know that we were all set. She misunderstood thinking I meant we no longer needed anyone and reassigned our aide in a blink of an eye — lesson learned; be careful when communicating by text message.

Care.com

So, we were back to square one. The supply of aides through the agencies dried up so I decided to try Care.com, a website service that provides access to caregivers, both independent and through agencies. Care.com lets you enter in information about your requirements and then receive proposals from the caregivers on the site — essentially you are posting a job. You can enter your requirements and review blurbs of the responses for free but, in order to access and respond to the proposals, look at background checks and check references, you have to subscribe. I signed up for the one month subscription expecting that would be all I needed.  I was wrong.

Care.com Pricing
Care.com Premium Subscription Pricing

I’m not going to provide a complete review of Care.com at this time but I will say that I was totally unprepared for what happened next. The number of responses was far more that I expected, and I immediately felt overwhelmed and uncertain about what to do. I did correspond with some of the caregivers and attempted to schedule some interviews, but I wasn’t able to manage this process and deal with my regular daily activities. By this point, I had come to realize that the best person suited to care for J was me, and trying to bring someone else in was causing more stress than necessary. I put the whole aide plan on hold and just focused on providing care myself — oh, and I completely forgot to cancel the Care.com subscription and ended up paying for three months or more at the monthly rate.

Finally, a Solution — Facebook?

After the Care.com mess,  we went nearly a year without any paid help. I relied on occasional help from my sister who lives an hour away, J’s dad who visits from the West Coast, and a couple of capable local friends. It worked because I’m devoted full-time to J’s care having given up nearly all of my part-time paid and volunteer work, and I was getting a lot of support from my daughter’s friend’s parents who were shuttling her to various activities. This past summer, those support networks broke down due to vacations and travel and other commitments. With school having recently started, I felt I needed some regular part-time help again, so I posted a message in a community Facebook group asking for recommendations for an aide.

I got a bunch of responses from people who had aides they would recommend, and after talking to some of these people and evaluating how similar their situation was to mine, I called one woman, highly recommended, who seemed to be a good match — and that brings us back to the beginning of  this post and hiring K. We’re only three visits in and things are going well but time will tell.

In Conclusion

Hiring an aide is complicated! Finding suitable personalities, skills, schedules, and fees can be impossible. The process will vary depending on the age and location of the person who needs care — remember, J is young so I wanted someone with experience beyond elder care. If you’re going to look for an aide, I suggest starting with friends, Facebook or some community forum first, where you can ask for personal recommendations of aides they use. Personal recommendations are not a guarantee of success but they are a better starting place than simply trying to evaluate proposals or resumes. I have much more to say about using aides (as if I haven’t said enough already) but it will have to wait for a later post.

Tell me about you successes and failures using aides.

 

Amazon – Best Friend or Ultimate Evil?

I am very dependent on Amazon. I find myself increasingly ordering everything I need to run the household from them, and I feel guilty about it. I am an advocate for shopping locally. My town once had a thriving main street of small businesses but now it is nearly all large retail chain stores. Buying from Amazon is the worst act of killing off Main Street America!

But it’s convenient … and the selection is great … and items are typically in stock … and the price is right … and returns are easy … and with Amazon Prime, I get nearly everything in two days … and I can order things using one of my many Amazon Echo devices or my phone … and ARRRRRRRGHHH!

I get a little solace knowing that some of what I buy is actually from smaller companies that use Amazon for fulfillment but I still feel that pang of guilt when the Amazon boxes stack up at the doorway.

If I examine my buying habits, it becomes clear that the opportunities to buy local or more specifically, from small businesses are few and far between. I do get our prescription medications from a local non-chain pharmacy — though I have no idea how much money they make from that — but I rarely buy anything else from them unless it’s an emergency due to their high prices. I get groceries from a mix of local independent and large chain markets, though when Amazon Fresh was delivering to my area I was close to using them almost exclusively — when they bought Whole Foods which has a local store, they stopped deliveries. Items that I need for J’s care such as equipment, pull-ups, wipes, etc., I get exclusively from Amazon given the selection and pricing. If I need bulk paper goods such as paper towels and toilet paper or something else that I would buy large sizes of like laundry detergent, I might shop around for the best price and order from Amazon or Costco. The one exception tends to be clothing. I’m still buying more clothing online than I would expect but not so much from Amazon — more likely through a retailer’s own website such as the Gap, Skechers, PBTeen, etc. Oh, and then there’s alcohol; beer and spirits I buy from a variety of local retailers but lately my wine purchases have been made online.

So what is it that I’m feeling guilty about? Well, books for one, though there are no independent bookstores convenient to me. Music? Well, now that I’ve discovered Apple Music, I’m not even buying that much music, and again, there aren’t any music stores near here except Barnes & Noble. Gifts? For my daughter’s friend’s birthdays, I’ve started giving cash, and for most other gifts, I might order something online from a smaller retailer. Jewelry? Who has time to buy jewelry? What have I forgotten?

The point of this post is to say that desperate times call for desperate measures, and I consider my current situation as desperate. I need (we all need) to stop beating ourselves up about things like this and do what is best for our family, our pocketbook, and our sanity. I don’t mean to encourage you to abandon Main Street completely — if you have access to good local stores, by all means, patronize them — but if you live in a Main Street desert like I do, just do what you need to do.

Oh, I forgot my one big contribution to the local economy — I spend way too much money with local non-chain restaurants. I take great comfort in that even though my doctor probably wishes I ate less.

How do you feel about buying online?

Minding Your Meds

I thought I’d follow up the post on Dysphasia with a discussion and recommendation regarding administering medications. I rank managing and administering medication as one of the top three most important caregiver functions along with health advocacy and protecting physical well being.

J’s medication routines have varied from crazy complex — 10 medications spread over 6 times with varying dosages — to remarkably simple — 5 meds administered at 3 times. Regardless, I find it difficult to keep track of what needs to be given to her, when it needs to be, and that I actually did it. Maybe it’s my advancing age, but I knew I needed help with her meds since it’s hard enough for me to be good about my own meds. Soon after J came home, I found an online solution that is simple but highly useful — MyMedSchedule.com.

MyMedSchedule is a FREE simple way to keep track of what medications need to be administered and when. You can use the site through a website or through an app. You enter the medications, the dosage and the times to be taken into a list. The site helps you with providing full drug names and dosages or you can enter your own information if different. These can be prescription meds, over the counter, supplements, or anything else. Once entered, there are a few different ways to use the data. The functions I’ve found most useful are:

  • Printing the medication list to take to the doctor — You know, every time you go to a doctor, you have to update their med list. Bringing a current printout or if you forget to, showing them the list from your phone, makes life much easier. Plus I keep a list in J’s travel bag which is with her whenever we go out. The nurses and doctors love this report!

MyMedSchedule List
A sample of MyMedSchedule Medication List

  • Printing the medication checklist to keep track of daily activities — I keep a clipboard next to J’s meds where I use the checklist to track what I’ve given her and when. I also note anything else important that has happened to her on that day. This helps me overcome my own forgetfulness, and most importantly, immediately updates anyone else who is coming to care for her. Another useful aspect is being able to analyze the history I’m recording to see what is happening with J over time. This may be more important in the case of stroke survivors or the like, but being able to see if a med change, or an illness, or anything else might be at the root of a behavior change can be illuminating.

MyMedSchedule Checklist
A Sample of a MyMedSchedule Checklist

  • Allowing the site to send you reminders and notifications — I don’t use this consistently but it has come in handy. The site will send you a text message or email reminder so you don’t have to worry about missing your schedule.

There are other capabilities within MyMedSchedule such as being able to track lab results, but I’ve found these three things to be most useful to me. MyMedSchedule purports to protect your privacy so you don’t have to worry about your name and med information being used for advertising or research, though they do say they will use anonymized data at times.

Given that this site is free, I can’t really complain about functionality it lacks. The site has been reliable and bug-free, but there are a few things I’d like to see changed. First is that the site does not provide any drug interaction information, which they remind you of every time you use it. I’d like to see some attempt to warn of potential interactions as I’ve become increasingly concerned that the doctors and pharmacists don’t adequately monitor this.

I’d also like to have the ability to enter the prescribing doctor information and have the site automatically inform the pharmacy of the need for refills. It does offer a refill reminder which I haven’t started using.

MyMedSchedule is a great help — now if there was some way to make taking the medications easier, but that’s for another post.

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.

A Medical Diary is a Must!

The moment I first met with the medical team, I realized two things:  First, this situation would not be something that resolves overnight or anytime soon. Second, I needed a way to keep a record of medical contacts, events,  progress, resources, visitors, and much more.

I consider myself generally well organized but over the years I have tried and failed with nearly every ToDo list and diary system created, whether paper or computer-based. My background is in technology, so I pride myself on using a technology solution whenever possible, but sadly, most products don’t meet my expectations (which are unusually high).

I had been successfully using Trello, a project/organization manager, as a tool to help with teaching undergraduate college classes. While using it for a medical diary is not an obvious usage, it satisfied my immediate requirements:

  1. Trello is cloud-based, which means that I could access the information I stored in it easily from any of my devices — laptop, phone, tablet.
  2. Trello is free, and you get enough functionality that is it actually useful.
  3. Trello is team-oriented. Team functionality turned out to be very useful as it enabled me to allow family members to see and update the information. At times, I would even give medical providers access so that they could evaluate or update something.

So what is Trello, and how did I use it?

Trello uses a metaphor of a giant board, like a bulletin board or whiteboard, upon which you keep lists of lists that look like cards. You don’t have to put a lot of thought into an organization structure — you can make it up as you go along as it’s relatively easy to move things around.

Trello sample board
Sample Trello board from the website tour

In my case, I started using Trello to keep track of medical contacts and a diary of what transpired every day. The hospital where J spent her first few weeks was a teaching hospital and aside from the regular nursing shift changes, the residents rotated every week, and a variety of other specialists wandered in randomly. There was no way I could keep track of it all in my head, especially since I was grappling with what had happened. I might have been able to write it all in a paper log but since information came to me in a random fashion, it was hard to know exactly how to structure it on paper. With Trello, I could just take the next bit of information, create a card for it, and place it within an existing list or create a new list. If I didn’t like how things were evolving, I could change it all easily. The only time I ended up doing a laborious change was when I decided to retitle all of the cards in the diary to have the date so I could sort them. Following is a screenshot of what my board looked like — to protect privacy, I’ve grayed out anything personal.

Trello Medical Diary
My Medical Diary Capturing Everything Going On

Trello is very easy to use though it does take a little practice to understand how best to use it. I keep finding new uses. Trello also works well on any device or directly from the website. Eighteen months after J’s stroke, I’m still referring to the information stored in Trello and at times, adding new information.

You can store documents directly in Trello or you could couple it with another package such as Dropbox to store physical documents. One possible and important use for all this would be to track the activities of the medical team in case an error occurs — keeping a contemporaneous log would likely help in a malpractice lawsuit.

So, it’s important to use some type of tool to help you stay afloat in the sea of information that is our medical system, and Trello can be a good starting point. Try the tour for starters. I’d love to hear about other things that have worked for you.

Be Prepared to Become a Caregiver

You never know when something is going to happen. In my case, J’s stroke came out of nowhere — no warning, no risk factors, no history. I was one of the many people who internally acknowledge that there’s always a risk of something bad happening but, sadly, never did anything to prepare for it. Though married 10 years (and this being both our second marriages), we didn’t have a will, power of attorney, estate plan, or anything like that. We’re both intelligent, well-educated individuals so it is fair to ask how that could be and the answer is simply; Life. You get busy, you get distracted, you say you will do it all tomorrow, and yet time rolls on.

So when something happens, aside from dealing with the immediacy of the situation, you need to think about the longer range implications especially in life-threatening instances. In our case, since this was our second marriage, not everything we have such as bank accounts or property was in both our names. We each had our own cell phones and computers, where we stored personal information, yet didn’t readily share our passwords with each other. I had a sense of what J’s wishes might be in case of a severe injury but she didn’t have a living will or anything that designated me to be her health advocate.

What I learned very quickly is that, even if you are legally married, the laws/rules for how organizations will treat you or share information with you on behalf of your spouse vary from state to state. In our case, thankfully the medical providers were satisfied with my status as husband and consulted me on all health-related issues. My first obstacle was access to J’s mobile phone; her work and personal email, contacts, and bank accounts. I didn’t even know how to reach her boss to let her know what happened. Thankfully, J had kept her passwords on post-it notes on her desk so I was able to gain access to critical accounts, but I couldn’t get into her iPhone. She hadn’t even set up the touch id.

Amazingly, J’s employer (she was the sole breadwinner at the time) was the second and most difficult obstacle as the Human Resources and Payroll departments refused to discuss her insurance, benefit and payroll information with me without proof of power of attorney.  My only way around this, after consulting an attorney, was to establish a conservatorship. I’ll discuss this in depth in a future post.

The conservatorship was also the key to accessing other accounts that were critical to keeping the family running — we needed to pay bills, mortgages, etc. All of this took time and setting this up in the midst of this life crisis over the course of the first few weeks took a huge toll on my emotional and physical well being.

My advice is “Be Prepared!

  1. At a minimum, have a power of attorney (POA) in place for each other so that you can deal with medical and financial transactions without worry.  A POA is easy and inexpensive to do but can give you tremendous peace of mind. Note: A POA doesn’t solve all your problems — The Social Security Administration, for example, doesn’t recognize a POA in some cases — so it’s best to consult an attorney and see what else should be done.
  2. If you maintain separate financial accounts or access to important websites, share your passwords with each other. I do not recommend writing them all on Post-It notes or counting on your browser saving them. I’m currently evaluating password managers such as Dashlane and LastPass that will safely save your passwords and provide a mechanism to share them with family as needed. I’ll provide a write up of what I found soon.
    Importantly, share your mobile phone password with your partner. Mobile phones are an important and integral part of everyone’s day to day activities that access to it in the first few hours is vital to be able to reach family, friends, and employers. I wasn’t able to gain access to J’s phone for nearly 4 months.
  3. Talk about each other’s wishes in case of an accident. Best case is to do a living will and appoint a health advocate, but at least have a discussion so you have some guidelines. As I said, I had some idea of what J’s wishes would be in the event of a devastating injury and I was constantly measuring her progress and the various decision points and milestones in her recovery against what she would have wanted. Thankfully I didn’t have to make a tough decision, but for example, had the doctors not been able to take her off the respirator, I would have known what I had to do.
  4. Don’t become complacent. Keep your records, files, passwords, etc., current and accessible. It’s easy to forget just how much work it takes to run a household and when you are suddenly the sole provider, each minute you spend trying to track things down is one less minute to spend with your ailing partner. For example, my daughter’s school lunch account managed through an online service went unpaid for several months simply because I didn’t even know it existed. I got an email from the principal stating we were way overdue, and that was one more embarrassment I didn’t need.

I will write more about preparedness as it is an ongoing issue for us — we still don’t have an estate plan or will or password manager. All I can say is thank goodness we both have technology backgrounds and are comfortable handling our affairs through online services. Ultimately, that made my life much easier as I was able to use J’s existing accounts, which likely isn’t completely legal in all cases until I was able to secure my own direct access. If this was 1998 and everything was done in person or on paper, I’m not sure what I would have done.

The Timeline Part I – The Stroke

While this blog is not specific to caregivers of stroke survivors, I think it’s important for you to understand what happened to my wife, what transpired during the first few minutes, hours and months, and where she is now in her recovery. This timeline will help me explain what I’ve gone through over the past 18 months.  One of the major difficulties of dealing with a stroke survivor is that every stroke is different. This is not like treating most other debilitating disorders as every person will be impacted differently, and that means as a caregiver, you not only have to be flexible at the beginning but you must stay flexible as time marches on.

Note: I’m trying to put as much as I can in simple terms but this subject can quickly get very complicated. I’ve provided links that will offer explanations and examples.

Here is a very simplified timeline:

  • Feb 11, 2017, Early afternoon — J’s stroke occurred while she was waiting for our daughter’s karate class to end. She was sitting on a bench, likely reading email on her phone when she collapsed and had a seizure.  Thankfully, the staff reacted quickly and called an ambulance. She was taken unconscious to a nearby hospital, examined, and given a CT scan. The scan showed a severe stroke had occurred in the thalamic region of her brain slightly to the left of center. This type of stoke was determined to be hemorrhagic, not caused by an aneurysm or clot — in other words, a blood vessel just started leaking. These types of strokes only account for 20% of all strokes but they have a very high fatality rate. There is a lot to be learned about this type of stroke and strokes in general, but I’ll save that for another post or two.
  • Same day, mid-afternoon — The neurologist on call quickly determined what had happened which is vitally important in this type of situation. Quick treatment is critical to reducing the initial impact of the event. For example, if J had been home when the stroke occurred and not immediately transferred to a hospital because no one knew this had happened, she likely would not have survived. The neurologist quickly arranged for transport to a regional medical facility that has a world renown neurology department. I first saw J right before she was transferred roughly two hours after the event.
  • Same day, late-afternoon — Once moved to the new facility, J was immediately admitted into the NICU – Neuro Intensive Care Unit. This team examined her, administered some medications to stop the seizures, performed additional CT scans to determine if there was still bleeding activity and how wide an area was affected and developed a preliminary plan for treatment. Importantly, with J’s stroke, the bleeding itself once stopped was no longer a concern. The issue becomes the hydrocephaly that ensues because, in her case, the blood interfered with the normal flow of intracerebral spinal fluid.  The neurosurgery team implanted the first of two external ventricular drains (EVD) that would relieve the pressure inside her skull. J was on a respirator to protect her airway, heavily sedated but showing some awareness.
  • Feb 18 — The first MRI was performed — the results would come later. I started to experience the firehose of information about what was going on coupled with a deluge of questions about J’s medical history and her wishes. First important lesson learned — caregiving starts immediately and preparation is critical. Needless to say, we were not as prepared as we should be — more to come on that in another post. Meanwhile, J was stable and seemingly past the most critical moments, though her future was far from certain.
  • Feb 19 — A cerebral angiogram was normal. This indicated that there didn’t appear to be any vascular malformations — an important thing to determine as it could indicate the prospects of a second stroke. Using different methods (angiography, MRI, CT scans) is important since each reveals a varied view and, in J’s case, a lot of the structures were obscured by the residual blood still filling the cavities in her brain and skull. J continued to show some awareness but was very restless so she needed to be sedated.
  • Feb 20 — An attempt to place a second EVD was unsatisfactory so arrangements were made to do it again in an operating room using neuronavigation which would allow for precise placement. The procedure was completed successfully, and talk began about attempting to take J off the ventilator.

The immediate crisis was over, and J’s chances of survival were getting better every day, however, we had little understanding at this point of the impact of this on her ability to function. The hardest part of the initial timeline was yet to come.

Introduction – The Long & Winding Road

Generic CT Scan
Just a generic CT Scan

Today marks 18 months since my wife’s hemorrhagic stroke in February 2017. She was 49 years old at the time and in perfect health. No warning signs, no symptoms, no family history of stroke, no risk factors.

We had been married only 11 years (both on our second marriage) and had a then 9-year-old daughter. My wife, known throughout this blog as “J” was with our daughter when the stroke occurred.

I’ll provide background on the stroke specifics in a later post but suffice it to say this was a severe event, and and the survival rate for this type of stroke is less than 50%. Nonetheless, J survived and now here we are a year and a half later.

So why start a blog now? Well, first of all, I finally feel like I have some time to spend writing. I want this to be a valuable resource to caregivers, especially male caregivers, I take these blog posts seriously, and that takes time.

Second, I have gained a lot of knowledge since the stroke and now I’m ready to share it. I’ve learned about the medical condition, insurance, dealing with medical providers, therapy, products, technology, and more. I don’t profess to be an expert but I hope to let you benefit from my journey — I intend to provide the resource I wish I had.

Finally, you should know that I’m writing this blog using a pseudonym and intend to keep confidential the names of my wife and daughter to protect our privacy. I will post real reviews, analysis, and links for the products, services, and organizations that I have found useful during this journey. And, while I am targetting this blog towards male caregivers given my unique perspective as a male, I hope that all who find themselves in this role will benefit from the blog.

I welcome your interactions so don’t hesitate to write to me. At some point, I may include a community forum within the site.

–ML

 

About Recommendations — Read First

I intend to regularly provide recommendations of both products and services as I discover things that are useful to a caregiver or the patient. Occasionally, I will also write about a product or service or company that has a particular problem. Remember, all of these posts are the opinion of the stated author and your mileage may vary. We can only evaluate things based on our day to day experiences — we are not trying to do exhaustive evaluations. However, since I spent many years as an industry analyst evaluating products, services, and companies, I will try to make the reviews useful, factual, and accurate.

Furthermore,  we will not accept money or gifts to publish reviews, and the items we review will either be purchased by us or if borrowed from the manufacturer, subsequently returned, donated or recycled. This way you can count on our integrity with respect to reviews.  If in the future, we start to accept advertising on this blog, the advertisers will be selected by Google Adsense or something similar and will not have any impact on the content on this site.

Any questions should be submitted via our contact page.

 

When Your Partner Becomes Your Patient