The news that a spouse, parent, sibling, or child has been diagnosed with chronic illness stirs up a range of feelings, from guilt to grief. And then, before you’ve processed those feelings, you have to start addressing the practicalities of the situation. Who’s going to care for your chronically ill family member and how will your household adjust to this new reality, both emotionally and financially?
It’s a troubling time, and there are no easy answers. One way to start moving forward is to acknowledge your feelings as well as the questions you have about life going forward. You can gain some clarity by learning as much as possible about your family member’s condition and how you can prepare for his or her care. You might also consider joining a support group sooner rather than later — fellow group members can provide emotional support and share how they’re handling the same challenges you face.
What is a chronic illness?
According to the Centers for Disease Control (CDC), a chronic illness is a condition lasting 12 months or more that requires medical oversight and, often, lifestyle changes. There are no known cures for chronic conditions, only treatment plans that can keep the patient comfortable. Some chronic diseases are progressive and worsen quickly, while others can be managed for long periods of time.
Types of chronic illnesses
The most common chronic illnesses are heart disease, cancer, chronic lung disease, stroke, Alzheimer’s Disease, diabetes, and chronic kidney disease. Heart disease, cancer, and diabetes are actually the leading causes of death and disability in the U.S. But there are also many other conditions that fall into the category of chronic disease, including viral diseases like HIV/AIDS, autoimmune diseases such rheumatoid arthritis and lupus, central nervous system conditions like multiple sclerosis (MS), and genetic conditions like cystic fibrosis.
The condition will dictate care needs
Whatever condition your loved one has, it’s important to have an open line of communication with your family member’s medical team. You’ll want to understand your loved one’s needs and limitations today, as well as how the condition will progress over time. That helps you prepare for what lies ahead. For example, a spouse who’s been diagnosed with MS may be fairly self-sufficient at the time of diagnosis. But at some future date, that spouse may need help bathing, getting dressed, and transitioning from the bed to the wheelchair.
Now is the time to start brainstorming solutions for those future challenges. Are there changes you can make around the house to help, such as moving the two of you to a downstairs bedroom or eliminating furniture to create wider pathways through rooms? Do you need to install handrails in the bathroom or reconfigure the shower for easier entry? Also consider whether you will need to learn any new skills to prepare for your role as caregiver, such as basic first aid or CPR.
Other diagnoses may demand smaller, but more immediate changes. A heart condition, for example, requires healthier eating habits. In that case, you could learn about nutrition and how to cook with healthy foods. Ideally, you’d adopt those healthy lifestyle changes along with your loved one, to show that the two of you are tackling this new challenge together.
Managing the emotional challenges of chronic illness
As you prepare to provide for the physical needs of your chronically ill family member, you’ll also have to manage the emotional challenges of the situation. The patient — be it your husband, wife, parent, brother, or child — may have a hard time processing the reality of the diagnosis. Anger, disappointment, and sadness are normal reactions, but they can progress into lingering despair and even depression.
For that reason, it’s critical to communicate often and pay attention to your loved one’s mood. Regularly encourage your family member to share his or her feelings, and then listen without judgment. This can be especially challenging if the chronically ill patient is a parent. Your mom or dad simply may not be comfortable leaning on you for emotional support. In that case, express your willingness to listen but also offer other solutions to help your parent work through those complicated emotions. You could find an appropriate support group or arrange for a close friend to visit regularly, for example.
Remember to acknowledge and process your own feelings as well. Even though the chronic diagnosis was not yours, you still may experience similar feelings of loss. Some strategies that can help are:
- Accept that your life has changed. Try not to hold onto the way things were. You have a new reality ahead and it doesn’t help you or your loved one to live in the past. This is especially important if you are living with a chronically ill spouse, who might already be feeling guilty about how the chronic condition will affect your life together.
- Take time for yourself. Caregiving is a demanding job, whether you are doing it full-time or only on evenings and weekends. You need to set aside time to focus on you to decompress and fend off feelings of overwhelm. Carve time out of your schedule to read a book, exercise, get a manicure, or participate in your support group. You’ll be a better caregiver for it.
- Make time for other family members. It’s easy to let other family relationships suffer when you’re focused on one person who’s chronically ill. Remember to touch base regularly with your other family members. They are your built-in support network.
- Ask for help when you need it. If you need a break from caregiving, take one. If you need help working through your feelings, find a therapist or reach out to a trusted friend. Don’t overlook your needs even as you’re caring for someone else’s.
Managing the financial challenges of chronic illness
Unfortunately, the financial repercussions of dealing with chronic illness will add another layer of stress. Those repercussions can range from lost wages — yours or the patient’s — to tens of thousands spent on in-home care and, possibly, nursing home care if the condition worsens. Full-time, in-home care averages about $4,300 monthly and nursing home care, about $7,500 monthly. Adult day care is a more affordable option at $1,625 monthly, but it’s challenging to find in the era of COVID-19.
Those pricey chronic care services are not covered by Medicare or traditional health insurance plans. Many who are coping with chronic illness in the family pay for these care services out of pocket — by draining savings accounts and retirement plans or leveraging home equity. But there are better options. Here are three strategies to consider.
1. Viatical settlement
A viatical settlement is the sale of life insurance to a third-party when the insured is terminally ill or chronically ill and cannot perform two or more activities of daily living (ADLs). These activities include walking, eating, bathing, and using the bathroom. Viatical settlements are a lucrative alternative to surrendering life insurance back to the carrier, because the cash proceeds will be higher. Also, the proceeds from a viatical settlement are usually not taxable.
If your loved one has life insurance coverage and you’re concerned about the costs of care, reach out to Harbor Life Settlements to find out if the policy is salable and what it’s worth. There is no obligation or fee for an evaluation.
2. Get paid by Medicaid or the VA
Medicaid and the VA have programs that provide funding for family caregivers. Medicaid’s Consumer Directed Personal Assistance Program (CDPAP), for example, allows the patient to hire any caregiver, including a family member who’s already doing the job. Your loved one must have Medicaid already and a doctor must certify that he or she requires home care. Medicaid will authorize a certain number of hours based on the patient’s condition and, once you are approved as the caregiver, would pay you directly for providing the care.
If your family member has VA benefits, look into the Veteran Directed Care Program, formerly known as VD-HCBS. Similar to the Medicaid program, qualified veterans who require help with ADLs are given a budget to hire their own caregiver, which could be a family member.
3. Get financial help from family members
Family support with chronic disease can be emotional, but it can also be financial. If you have to give up your job to become the patient’s primary caregiver, it’s reasonable to ask family members to help financially. If you are caring for a chronically ill parent, have a frank conversation with your siblings about how this role affects you financially. Admittedly, this is a trickier conversation to have when you are living with a chronically ill spouse — but it doesn’t hurt to ask your spouse’s family for help.
Prepare for these conversations by researching hourly compensation for caregivers in your area and documenting the level of care your family member needs. You could even go so far as to draft a personal care agreement, which is the contract between you and your family members that outlines your responsibilities and your compensation.
Living with chronic illness
A chronic illness diagnosis in your household can prompt sweeping changes to your daily routine and your plans for the future. You can find your way in this new reality, however. Press on by learning all you can about your loved one’s condition, taking care of yourself, and enlisting the help of others when you need it.