Caregiving Challenges, Chronic Disease Diagnosis

Helpful Highlights

• Understanding your loved one's diagnosis and prognosis is the best way to help you determine how to help them and when.

• Develop a relationship with your loved one's medical provider(s).

• By carefully reviewing the treatment plan step-by-step with your loved one, it will help you both stay on track.

• Don't rely on the Internet for information, talk with a healthcare professional.

Diagnosis - The process of identifying a disease, condition, or injury from its signs and symptoms, and once identified, giving it a name.

Prognosis - The likely or predicted course of a disease or ailment, as well as the treatment and results.

If your loved one is diagnosed with a chronic illness, such as diabetes, lung disease, or heart disease, there is a lot you can do to help them manage their health and wellness, and maintain independence.  Diagnosis is an opportune time to become more aware and to get more involved.  Your involvement and support may reduce flare-ups, decrease risks and complications, and delay the advancement of the disease.  As a result, you can help your loved one keep a positive attitude and maintain their independence longer.

First, it is important to assure your loved one they are not now a burden to you (or even themselves!) because of their chronic condition, and it's emphasized that you want to help them stay independent as long as possible. Your loved one must know that you are there for them and that you want to do the best you can to help them remain independent.

The best first step to helping your loved one is to learn about the diagnosed disease and its progression (prognosis). Knowing the cause of the disease, as well as what can make it worse and what can make it better, will be extremely helpful when it comes to managing disease symptoms. Likewise, understanding how the disease progresses, what it continues to do to the body, and the signs that it is getting worse or your loved one is experiencing a flare-up (clinically called an exacerbation), will help you know what to anticipate and expect so you can better manage any situations before they become crises.

Educating yourself on diagnosis and prognosis

So, how do you approach becoming knowledgeable about your loved one's condition? First, go with your loved one to their provider appointments. This is how you, yourself, start to learn. Additionally, the diagnosis and all associated information may overwhelm your loved one and they may not remember everything that was said - especially instructions. Not only is your support invaluable to your loved one, but it is also invaluable to their provider.

• Get to know your loved one’s providers and let them get to know you - who you are and the many roles you may play in the life of their patient. 

• Pay attention to what is said and ask lots of questions. In educating yourself, you can educate your loved one, in turn.

• Be prepared with questions for the provider(s).  The provider will appreciate your quest for knowledge (they LIKE to teach you!), your involvement, and your desire to keep their patient as healthy as possible.

  • In our Guides section, we have several sets of disease-specific questions to ask the provider. You can search by the name of the disease.

• Make sure you and your loved one are involved in the treatment plan prescribed by the provider. Compliance with the treatment plan increases when you both are involved in its creation, and compliance delays the progression of the disease, as well as reduces the risks and complications associated with it.

Break it down for your loved one

Once home, discuss each step of the treatment plan with your loved one. Discuss each step separately so it does not overwhelm or confuse them. Confirm their understanding of each step by having them repeat it back to you or give you examples.

The diagnosis. Your loved one may not understand what the health care provider said, or they may not realize the ramifications of this disease.

• Ask them what they understand from their provider about their chronic illness.

• Help them fill in the blanks for what they do not remember, didn't hear, or have incorrect.

• Write down further questions or concerns to discuss with their provider and get recommendations.

The prognosis. Beyond their diagnosis, your loved one may not understand the course of their illness and what they can do to intervene in its progression.

• If there are stages of your loved one's illness, they must understand the differences in those stages, which stage they're in, and the associated symptoms and complications they can expect with that stage.

• Ask them what they can do to control symptoms and delay worsening of the disease.

• Help them fill in the blanks for what they do not remember, didn't hear, or have incorrect.

The treatment plan. The plan could include several interventions and goals, such as a diet change, additional medications, smoking cessation, a rehabilitation or exercise program, and others.

• Ask what parts of the plan they are concerned about, if any, and listen to their concerns so that you may respond to them or take them to the provider for a response.

• Ask what they think they can do to meet their treatment plan goals (try to get specific, like how they will alter their shopping list and meal prep, what they will do when they want to smoke, ways they will ensure that they take their medications on time, etc.).

• This review will help you both determine the help your loved one needs and when they need it. Ask them how you want them to help you and process ideas. Consider:

Medications 

• You may need to purchase a pill planner for them.  

• They may be able to fill out the planner independently. Let them fill it with you until they are confident, or they may ask you to do it for them.

• Check at least monthly for refill needs or a new prescription.

• Ensure they are taking their medications as prescribed.  Sometimes they do not understand how to take the medication, cannot administer the medication because of arthritis, or skip doses because it's expensive.

Lifestyle changes

• Stop smoking – this is a very difficult addiction to overcome, and smoking can be a source of security for many.  Ask the healthcare provider for assistance and create a plan together.

• Dietary change(s) – eating less sugar and carbohydrates (diabetes), or more vegetables (vitamin deficiencies), and especially reducing sodium (cardiovascular disease) can be unsavory and daunting.  Assist with a grocery list, good food selections, and smart alternatives or substitutions when eating out. You may need to help them find and fix new and easy recipes.

• Activity and exercise – offer to take walks with them, do video-guided seated exercises, purchase a stationary pedaler, and introduce them to the SilverSneakers program (covered by Medicare and Medicare Advantage). 

Monitoring products

• Scale – make sure they have a reliable scale that is safe for them to use and that they can read accurately. Guide them to weigh at the same time every day; in the morning, after toileting, either nude or always in the same clothing.

• Blood pressure cuff – there are many products to choose from. Some are applied to the upper arm, some are applied to the wrist.  Select one that is easy for your loved one to use and read by themselves. Connect with a healthcare professional (including a pharmacist) for a demonstration on proper use. Take blood pressure only once or twice per day and at different times throughout the day.

• Pulse oximeter - if your loved one has been diagnosed with lung disease, monitoring their oxygen level may become important, especially as the disease progresses. These are small, digital devices that clip onto a finger and provide oxygen level and heart rate.

The Internet can help... And hinder

The Internet is a powerful tool and can deliver loads of information in an instant. When it comes to using the Internet to learn about your loved one's condition, it can certainly help you but it can most certainly also hurt you. Foremost because the overwhelming amount of information can be confusing, and in many cases, seemingly contradictory - especially if accidentally taken out of context. Likewise, a lot of information on the Internet can be outdated.

This is why you should START by talking to your loved one's provider. Gain knowledge so you aren't randomly searching terms. You can even ask the provider for specific words and phrases you should search for, get recommendations for sites the provider trusts, as well as how to sort out bad information and what to further discuss with a healthcare professional.

No content in this app, regardless of date, should ever be used as a substitute for direct medical advice from your doctor or other qualified clinician.