5/17/2023 | By Terri L. Jones

When you’re involved with helping a loved one in managing a chronic disease, especially as a caregiver, these six suggestions can guide you both down a challenging road. Part 5 in our series, “What to Expect As Your Parents Age.”

When your parent has been diagnosed with a chronic disease, it’s an emotional and stressful time, not only in terms of accepting that difficult news but also in determining how to manage the disease. Sometimes your parent will need care right away, while in other cases their disease may be progressive, or an acute situation may necessitate care without advance notice.

If you act as your parent’s caregiver, it helps to understand what to expect. “Finding a balance between work, home responsibilities and caring for a loved one is challenging,” explains Linda Jones, who, along with her husband, cared for her mother, who had heart disease, and her mother-in-law, who had stomach cancer. And, when the condition is terminal, “There’s also the emotional toll of watching someone you love fade away,” Jones adds. “But since their wish was to remain at home for as long as possible, we wouldn’t have had it any other way.”

6 tips for caregivers in managing a chronic disease

As a caregiver managing a chronic disease in a loved one, let these guidelines show you the way.

1. Understand the disease

The CDC defines chronic diseases as “conditions that last one year or more and require ongoing medical attention or limit activities of daily living or both.” Sixty percent of adults in the U.S. have at least one chronic disease, with that number growing to 80 percent for those over 65, according to the National Agency on Aging. Among the most common chronic diseases in older adults are high blood pressure and arthritis, with heart disease, cancer and diabetes the leading causes of death and disability in the U.S.

The first step in managing a chronic disease is for you and your parent to learn everything you can about the disease. Knowledge is power, and a comprehensive understanding of the disease, including its symptoms and limitations, helps increase the chances that your mom or dad will comply with treatments and more easily adjust to all the life changes that come their way. Plus, it gives you tools to help them cope.

The best source of information about your parent’s disease is, of course, their medical team. Be sure to have the right specialists on board, explains Beth Cole, a certified independent dementia consultant with Cole Caring Consulting. Cole’s own mother, who has dementia, was initially under the care of only her primary care physician, but she insisted that the family also seek the expertise of a neurologist.

Meet with these physicians to ask questions so that both you and your parent know what to expect. Keep an open line of communication with them. Also, maintaining a journal that follows your parent’s condition, along with the effects of certain foods, medications, sleep, etc., can be beneficial for doctors in managing their care as well as help you anticipate and potentially avert a crisis – or even a bad day for your parent.

2. Prepare the home

A typical home isn’t safe – or practical – for someone who uses a cane or walker, has vision problems or cognitive issues, or is dependent on an oxygen concentrator or other medical equipment.

daughter taking her mother's blood pressure at home. Image by  Andrii Medvediuk. For article on managing a chronic disease as the caregiver for a loved one.

When Destiny Smith’s mother, who had been diagnosed with vascular dementia two years before, moved in with Smith and her family, she was able to walk around the block alone, feed, shower, and dress herself, use the phone and TV, have complete conversations, etc. The only modification necessary was converting a downstairs room into a bedroom and a half bath into a full bath.

However, things changed quickly. In a brief period of time, Smith recalls, “My mom lost her ability to know us, use the phone, couldn’t understand hunger cues, and became fully hallucinogenic and so on.” At that point, Smith had to install locks on doors, the refrigerator and cupboards, baby gates, guard rails, and ramps as well as purchase a wheelchair and walker for her mom.

Depending on your parent’s condition, you may also need to make changes like turning a bathtub into a walk-in shower, adding grab bars, installing raised toilets, and removing furniture to create wider pathways through rooms. If your parent is bedridden, you may need to allocate a space for a hospital bed and bedside commode, etc.

3. Establish a support system

Caregivers tend to put everything they have into caring for their loved ones, while putting their own life and health on the back burner.

“It is a painful, lonely experience,” says Smith, “and usually comes at a time in life when the adult child caregiver has to finish raising her own children and deal with midlife health issues of their own.”

Ignoring your own needs while managing a chronic disease for a loved one could exacerbate existing health issues or lead to new ones and render you unable to care for your parent. Not only that, when your mom or dad passes away, you’ll not only have lost your loved one but potentially also friends and family members out of sheer neglect.

“The biggest thing that I always point out is making sure you have a very good support system,” advises Cole, who provides guidance for families of loved ones living with dementia, and “that it’s not you – and only you – caring for this person.”

Take well-meaning family members, friends, and neighbors up on offers to help and set up a schedule that allows you to get away on a regular basis. If people don’t offer, don’t be embarrassed to ask. Most people want to help, but they don’t know what you need, Cole explains.

If support from your circle of family and friends isn’t available, consider respite care, including residential care, adult daycare, and homecare, to allow you to recharge your batteries and also maintain your relationships with friends and other family members. You’ll be a much better caregiver for it! Support groups, where there are others who can relate to your stresses and successes, can also be beneficial for both you and your parent.

4. Prevent loneliness

grandson visiting with grandmother

A chronic disease diagnosis may cause your parent to experience a wide range of emotions, including anger, frustration, and sadness. Living with one of these life-altering illnesses can also lead to loneliness, which can in turn exacerbate your mom or dad’s condition. In fact, heart failure patients who experienced loneliness were 57 percent more likely to go to the ER, and their hospitalization rates increased by 68 percent.

You can try to help your parent fend off feelings of loneliness by getting them out as much as possible or taking advantage of adult daycare, senior center programs, inviting friends over to the house, or whatever level of socialization is appropriate and comfortable for them. Encourage your parent to be open about their feelings. If they’re not comfortable expressing to you how they feel, suggest that they talk to close friends or a support group. Also find ways to frequently reassure your parent that they are not a burden or imposition.

5. Compensate for loss of income

Caregiving can often be a fulltime job, making it difficult to hold down a paying position, too. While money is not the reason that most people care for a parent, you may be eligible for compensation from state or federally funded programs, including Medicaid and the Department of Veterans Affairs (VA), to offset some of your loss of income. You may also qualify for certain tax benefits.

However, Smith, who cared for her mother almost singlehandedly during the pandemic, warns that the application process for compensation can be time-consuming: “Paperwork can take up to six months to complete,” she explains. “Don’t expect to get paid during that time even if you lose your job to be the caregiver.”

6. Know your parent’s wishes

“Make sure to know what your parents want before any illness like this happens,” advises Smith. Talk to them about their wishes, including where they want to live, the quality of life they desire, and, if treatments are no longer working, how long they want to fight.

“Remember, although keeping your parent alive and well is important, that’s not all you can do. It’s equally important to ensure that they are living the best life they can, and more importantly, the life they want, given the circumstances,” according to Sarah Kaminski at Pain Resource.

At a certain stage in their illness, you may need to consider palliative care or hospice care for your parent. Both types of care help them live out their life in comfort and with greater quality of life.

While you’re probably willing to do whatever it takes to keep your parents at home while managing a chronic disease, you may need to consider a long-term care facility if you are unable to effectively care for your loved one at home anymore. Cole explains that there are no one-size-fits-all guidelines for making this decision, but some factors to consider are combativeness, repeated falls, or continuous incontinence. Also, declining mobility that makes it difficult for your parent to get in and out of bed or in and out of the shower alone may be the impetus to get fulltime assistance. Caregiving that is causing your own health and well-being to suffer may be another reason for your parent to make a move.

But don’t wait until a need is urgent. Moving your loved one to a long-term care facility isn’t as simple as making a phone call and reserving a room. There are eligibility requirements, waiting lists, and steps you must go through first. Do your homework.

“There were so many little things I learned on this journey that I was never taught, and there is no guidebook – although there should be,” says Smith.

What Smith has learned from her experience is to spend time with your parents while they are still able to enjoy life, and ask them the questions you would like answered while they can still do so. Her most important advice: “Love them and be kind to them and yourself.”

More in the series, “What to Expect As Your Parents Age”:

Writer Terri L. Jones shares more information on what to expect during the stages of aging and how to navigate this potentially challenging time.

Terri L. Jones

Terri L. Jones has been writing educational and informative topics for the senior industry for over 10 years, and is a frequent and longtime contributor to Seniors Guide.

Terri Jones