Category Archives: Recommendations

Posts in the Recommendations category will focus on products, services, books, etc., that I feel comfortable recommending to my readers.

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!

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?

 

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.

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.

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.