Investing in the Future

Have you started saving for the future? It’s easier said than done, but getting your finances in order can reframe the way you think about your short-term and long-term goals.

Whether you’re facing medical expenses associated with your or your loved one’s cystic fibrosis (CF) or are struggling to keep up with other costs of living, putting money aside for anything that isn’t an immediate need may feel unachievable. There’s not always a workaround for these tough financial decisions, but there are some resources and methods you can use to make saving feel more manageable.

What’s your saving strategy?

Do you know your current spending habits?

Figuring out your monthly household income and exactly where that money goes each month is a great way to start building a budget. Dealing with expenses as they come may feel overwhelming, so having a clear idea of recurring costs can provide a greater sense of stability. Think about how much you typically spend on needs like housing, utilities, and groceries as well as any life-enriching expenditures like subscriptions for entertainment services or a gym membership.

Figuring out your monthly household income and exactly where that money goes each month is a great way to start building a budget. Dealing with expenses as they come may feel overwhelming, so having a clear idea of recurring costs can provide a greater sense
of stability. Think about how much you typically spend on needs like housing, utilities, and groceries as well as any life-enriching expenditures like subscriptions for entertainment services or a gym membership.

Are you working toward a financial goal?

Defining your financial goals can also help provide clarity and motivation around how you use your money. Whether you’re working toward a big goal like saving for your loved one's college education or paying off medical debt, or you have smaller, more achievable goals like buying a guitar or planning a family trip, consider the pros and cons of different financial decisions and see where you can spend or save in a way that’s aligned with your goals and needs. Ask someone on your or your loved one’s care team if they can do a decisional balances exercise with you to help guide this process. Learn more about decisional balances with social worker Amanda in the Uncommon Lungs podcast.

Have you identified financial assistance options?

There are resources available to help cover costs associated with your or your loved one’s CF. The more you’re able to get covered through insurance, grants, and assistance programs, the more you’ll be able to set aside for the future.

Do you know where you’ll set money aside?

How you choose to invest your hard-earned dollars is a big decision. For those who have a family member with a chronic illness like CF, having access to savings may be important in case of emergency. While you may not get as big of a return through a savings account, the flexibility to pull funds when needed is a major consideration. Depending on your short-term and long-term needs, you can apply different strategies to make your savings go a little further. A few options might include:

High-Yield Savings Account: If you need access to your savings in the short term, this option may provide a higher return than a typical savings account, but is still accessible via a quick transfer
Certificate of Deposit (CD): This safe investment option is locked in for a set amount of time. While CDs tend to have a higher return than savings accounts, they are not necessarily accessible in a pinch
Low-Cost Index Funds or Exchange-Traded Funds (ETFs): These investment options allow you to invest in large parts of the stock market (for example, the S&P 500) without having to buy individual stocks. They have low annual maintenance fees and can be bought and sold through a brokerage account or a robo-advisor. Alternatively, mutual funds are similar but are more customized and higher in cost
401(k) or Individual Retirement Account (IRA): This type of investment comes with tax advantages, but it is locked in until you’re ready for retirement. If you’re not sure whether you’re ready to make such a long-term investment, know that there may be exceptions to pull your money out without penalty if you become disabled
Paying Off High-Interest Debts: If you’re in debt, there could be options to pay that debt back as an investment. Paying off high-interest debts (like credit card debt or college loans) may carry a higher yield than your savings account as you’re effectively earning back the interest you would pay in the future
Alternative Investments: There are plenty of other forms of investments like real estate, individual stocks, and government bonds. Your knowledge of the market, how much you have available to invest, and how soon you’ll need the money will help dictate which forms of investment are the most appropriate for you

If you’re completely unsure where to start, consulting with your care team or an online advisor may help you decide the best investment option for you. And if you’re not in a position to invest right now, know that that is OK too.

Care partner perspective

Facing finances with Magen

When her twins were diagnosed with CF, caregiver Magen quickly learned the financial commitment of managing this disease. While her journey has not been easy, she is grateful for her support system and hopeful for the future. Hear her full story in the Facing Finances episode of the Uncommon Lungs podcast.

Remember, everyone’s experience with CF is different. Make sure to talk to your care team about your specific financial needs and work with them to identify opportunities for assistance.

As a mom of 2 kids with CF, have you found there have been major financial challenges you’ve had to face and how did you overcome them?

The boys were diagnosed at 15 days old, and when we were in the care center, they kind of talked to us about who’s going to be caring for the boys. And obviously you want it to be you. You want to walk this journey with them. So I stopped working as a teacher and that really put pressure on my husband. You know, he was our sole income then.

And there were times (and there still are times) that we’ve had to ask our family and tell our family that this is what we need, and so they’ve been so great about that.

Every little thing that they do—it just adds up. So things like that have been really helpful.

How have you managed to balance expenses for your family?

We have been very lucky to be guided to some resources. Our care center was able to teach us about a grant that I apply for every year and that has been so helpful because there’s like a vitamins and supplements part and a treatment part.

And we go through that grant every year. Probably by August it’s done. But having that as a resource has really helped alleviate those little copays that kind of add up.

What are your plans for saving for your children long-term?

Yeah, so I think that’s like always in the back of our mind. Honestly, I kind of take it as a good thing to be worrying about them in their future. And I see them in college. I see them thriving. So that just means that there’s hope there.

We want them to be prepared when they get older. They’re going to be the ones that are refilling these prescriptions, that are doing these kinds of things, and I never want them to feel like it is a burden. I never want them to stress about that.

So that means there are sacrifices here now. And that means we cut back. We might not be going on big trips right now. But I think that’s okay. I’m actually excited to be saving for their future.

Where did you find support through your financial journey?

My husband and I, we didn’t realize how much we were grieving. And part of that was just like, we wanted to kind of tuck it all away to ourselves because it was hard. And I think we’ve learned that reaching out, especially to family, but also just to other people in the CF community, is what has helped us so much. There are so many people to learn from [and] with such an isolating disease, to talk to somebody that understands can change your perspective in an instant.

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