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The Hidden Costs of Caregiving

Reading time | 6 mins

Where ever you live in the world, caring for a loved one can often prove significantly costly. This may depend greatly on your location, your country’s healthcare system, as well as your individual circumstances.

While some of the most obvious risks are larger costs such as 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. For that reason, I would like to highlight the following, often less considered, categories of new or increased expenses that I have encountered.

Editor’s note: If you live in the United Kingdom or Europe, you may be entitled to some financial benefits and allowances to help you care for a loved one. However, this is typically means tested and depends on your individual circumstances.

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 food 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 supermarkets or laundry services may also come with increased cost.

Understanding and managing these costs on a monthly basis is vital, as a small amount here or there can easily add up to lots 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 pounds 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 incontinence pads, surgical gloves, bed pads, wipes, flexible straws, and bin bags.

Consumables include apple sauce (for crushed medications), hand sanitiser, skin moisturisers and protectants, laxatives, liquid thickeners, and more. This can add up to a lot of money 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 food shop 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 sceptical 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 your situation, there are a limitless number of pieces of equipment caregivers may need.

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 might not cost much initially, 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 1950s-home to make it more accessible. We’ve had to widen doorways, 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.

Editor’s note: If you live in the United Kingdom, the NHS entitles you to some free home adaptations and equipment – provided they cost less than £1,000 each.

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 crowdfunding website.

UK/MED/20/0053 February 2020