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The Hidden Costs of Caregiving

Reading time | 6 mins

The US press regularly reports that individuals or families who encounter unexpected significant health-related issues are at risk of bankrupting themselves. This is regardless of whether they have medical insurance or not. While the most obvious risk is the initial cost of major medical care and prescription drugs, I’ve found over the course of the last three years, that an equally serious and less conspicuous threat is from the build-up of smaller expenditures.

These are often required to provide ongoing support for the patient and are not typically covered by US health insurance. I liken this to a continuing leak in a financial dam versus an all-out breach. This is then exacerbated further by the nature of chronic conditions, be they illnesses or disabilities, which can exist over many years or decades.

Given the limitless insurance scenarios, I’m not going to explore insurance coverage of specific major medical procedures, drugs or individual health-related items. Instead, I would like to highlight the following, often less considered, categories of new or increased expenses that I have encountered:

Convenience

We often hear the common adage “time is money”. I’d go further and say that saving time actually costs money. Being a caregiver is more than a full-time job, so any opportunity to save time or effort is important. However, this comes at a cost.  

The good news is that the internet provides a plethora of time-saving conveniences, such as grocery shoppers, same day delivery, prepared meal delivery, and more.

The bad news is that many of these options come at a significantly higher cost. In fact, I think an entire article can be dedicated to the value and/or success of these services. (Watch this space.) Beyond the internet, using more convenient providers such as a nearby specialty grocer or laundry services may also come with increased cost.

Understanding and managing these costs on a monthly basis is vital, as $10 here or $15 there can easily add up to hundreds of dollars a month in unanticipated costs.

Utilities

Prior to my wife’s stroke, we were both working parents. Unusually, we both had corporate roles that allowed us to work from home. As such, we had already encountered some increases in household utility costs associated with working at home – mostly increased electricity and heating and cooling usage.

After the stroke, our electricity and heating and cooling costs increased by roughly 20%. This was mostly driven by increased laundry usage, as well as trying to keep my wife comfortable and entertained (there’s a lot of binge-watching going on).

When dealing with a chronic condition, you can expect to become intimately aware with the geographic-specific cost of living. One example of a new post-stroke cost, is having to pay a contractor to clear my driveway after a snowfall. I used to do this myself but nowadays I just don’t have the time or energy, and I certainly don’t want to risk hurting myself. Depending on the weather, a service like this can cost nothing or several hundred dollars a month.

Consumables and disposables

Depending on the condition you’re dealing with, you can expect to need a variety of items to help you provide care throughout the day. The internet provides a mechanism for finding the best prices, quality, and delivery options, although you can easily spend too much time trying to find the right items.

I personally try to focus on established items that satisfy our requirements and are available from reliable sources. Nothing is more frustrating than becoming reliant on a product only to find that it’s no longer available a few months down the line. In our case, disposable items we use daily include adult diapers, surgical gloves, bed pads, wipes, flexible straws, and trash bags.

Consumables include apple sauce (for crushed medications), hand sanitizer, skin moisturizers and protectants, laxatives, liquid thickeners, and more. This all adds up to several hundred dollars per month in non-reimbursed expenses.

Nutrition and supplements

Given the nature of my wife’s brain injury, I’m always looking for ways to keep her well-nourished with healthy foods. Occasionally she also gets supplements as recommended by her doctors. Thankfully we have good access to fresh produce, fresh and minimally processed proteins, and many farm-to-table restaurant options.

However, again, healthy options come at a price. I estimate that our monthly grocery and restaurant bills have increased about 25% for the family post-stroke. We do have a growing 12-year-old daughter, but I also don’t try to do organic and natural everything. I’m always looking for value and focusing on quality where it is most important.

The subject of supplements is worthy of an article of its own. Depending on who you ask you will get a different answer about their efficacy and value. Personally, I’m skeptical of supplements unless their value can be medically validated, but many people do swear by them. We did a short stint on a variety of Chinese herbs while my wife was getting acupuncture treatments. While she felt they were helpful, I didn’t see any physical evidence, so we discontinued using them after several months.

We recently started my wife on a fish oil and a magnesium supplement based on a bio-energy scan that indicated a possible deficiency. I’ll give it a few months, evaluate the results and decide whether to continue. The high cost of quality supplements requires you to carefully evaluate and manage their usage.

Durable medical equipment

Depending on the situation, there are a limitless number of pieces of equipment caregivers may need that are not covered by insurance. In our case there are walkers, transport wheelchairs, shower seats, grab bars, bed rails, stair lifts… and the list goes on. One big problem is that information about the usability and reliability of these items is difficult to find and I find that many products don’t last.

I do extensive research if I’m buying something expensive and look for vendors who support their products, but even that doesn’t guarantee a successful purchase. For example, a lightweight transport wheelchair is only about $100 to $200, but you can find yourself having to buy a new one every year, as the wheels and brakes wear out and are not easily replaced.

Accessibility adaptations

One of our largest expenses has been modifications to our 1950’s-home to make it more accessible. We’ve had to widen doorways, add ramps, remove floor coverings, change bathroom fixtures and add grab bars, and there is still much more to do.

I’ve approached this cautiously as I don’t want to create a house that would need to be gutted if we need to sell it. On the other hand, I want to make it easy for my wife to regain some self-sufficiency, so these modifications are important.

Supplemental care

By far, the scariest expense we encounter is the cost of supplemental support and care. First, there are sessions for therapeutic massage therapy, home physical therapy, psychotherapy, alternative procedures such as acupuncture, and more. Then, there is the cost of aides and nursing care. I’m still struggling to navigate this world and to find an affordable strategy for the long term, particularly as I grow older and need more help assisting my wife, and possibly myself.

The takeaway

In conclusion, the best advice I can offer is to do an overall evaluation of your finances and find places to save money where possible. Importantly, don’t be afraid to ask your family and friends for help if you are faced with extraordinary expenses. People generally want to help and today it’s easy for them to support you, either with the purchase of an item, or a through a donation either directly or through a website like GoFundMe.

NPS-US-NP-00570 FEBRUARY 2020