Category Archives: Advice

Posts that provide advice on products, services, approaches and more.

Advice, Training

Training is Essential

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Howard Glickman, senior contributor at Forbes Magazine, regularly writes about caregivers. His most recent article, Compassion isn’t enough for family caregivers. They need training too, resonated with me as I consistently ask, even demand, that healthcare providers equip me with insight and instructions beyond the basics. The benefits of caregiver training extend beyond caring for elders.

The article explores the necessity and dearth of training for family members (and friends) who provide increasingly complex care for elders. This care extends lifespans and keeps seniors out of hospitals and care facilities, “Yet, a new study published in JAMA Internal Medicine (paywall) finds that 93 percent  of family members caring for an older adult say they never have been taught how to do this difficult work.”

Would you hire this person?

Glickman rightly notes that a nurse or aide with insufficient skills would be fired immediately, but family members are expected to provide difficult technical care with no training at all. I’ve found that few healthcare providers (which includes doctors, nurses, physical and occupational therapists, etc) are equipped with the skills to teach a family caregiver the proper techniques to care for a wound, give a shower, transfer from a wheelchair to car and more. They resort to handing you a printed page of instructions — a wholly inadequate approach.

The article discusses programs available in some states that require training upon discharge from a facility or before caregivers can be paid with public insurance dollars. As the programs don’t specify a training curricula, it’s difficult to assess their comprehensiveness or success. A promising example of caregiver training is AARP’s “Home Alone Alliance℠” video series. The “How-To” videos and resource guides for family caregivers are on specific medical/nursing tasks – including preparing special diets, managing incontinence, wound care, mobility, and managing medications. The videos and resource guides, many of which are available in both English and Spanish, are free of charge. I’ve watched several of the guides which are educational though mostly at an introductory level.

No one solution fits all problems

Each caregiver encounters a unique set of problems and the most difficult and potentially dangerous problems can’t be solved by reading instructions or watching a generic video. For example, J can easily sit up from a prone position when she’s lying on a therapy platform or other relatively firm foundation. Put her in her bed and she’s struggles to overcome the soft mattress. To help with this problem and others, I’ve had physical and occupational therapists come to the house to both develop a reliable and safe procedure and teach J and me how to do it.

One alternative is to make my own videos when at therapy sessions or doctor appointments. This way I can both review the techniques at home and show them to any aides. Here is a recent example of J learning a new exercise at a physical therapy session:

It’s not just about protecting your family member

One last important item to remember is that proper training is critical to protecting yourself as the caregiver from physical and emotional injury. It’s easy to injure yourself when transferring someone or giving a shower, and it can be devastating when you discover that your actions contributed to a new problem. For example, I learned the hard way how to deal with incontinence-related hygiene problems after a urinary tract infection landed J back in the hospital.

The bottom line is be assertive about asking for specific, hands-on help and keep an eye out for alternative and improved solutions.

Advice

7 Tips for Traveling when Caring for Someone

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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.

Advice, Conditions

The Proverbial Last Straw

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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?

Advice, Recommendations

A Grab Bar That Goes Where You Need It

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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?

 

Advice, Rant?

Navigating Customer Service & Support

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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.

Advice, Background

Reducing the Stress of Hiring an Aide

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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.

 

Advice, Recommendations

Minding Your Meds

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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.

Advice, Recommendations

A Medical Diary is a Must!

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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.

Advice

Be Prepared to Become a Caregiver

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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.