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It’s normal to have complicated, and sometimes painful, feelings if someone you are close to is living with a chronic disease. If your parent, grandparent, spouse or sibling is grappling with a disease such as Parkinson’s, ALS, cancer, or another life-altering ailment, you may be experiencing confusion and frustration.
Understand that these feelings are common and are a reflection of the love and care you hold for your family member. If you are seeking resources to learn more about effective disease management that is not only practical and beneficial but can provide gratification and quality of life for your loved one, you’ve come to the right place.
Here are some resources to help understand disease management within in-home care as well as ideas to help choose the right path for your family.
Even the idea of chronic disease can be overwhelming. In addition to coping with the symptoms of their specific disease, your loved one may also be adjusting to new physical and mental limitations. They may be experiencing financial uncertainty and, most critically, a disruption of the routine they know and love.
An effective way to manage disease in in-home care is to give your loved one as much autonomy as possible. For many, the greatest concern with health help is ensuring your loved ones aren’t feeling like they’ve lost independence or autonomy. Many people feel empowered by having control over their health routines. If possible, allow your loved one to structure their own calendar—many patients prefer to set their own reminders for their treatments which may include medication, appointments and plans.
Another way to accentuate life at home is to organize nutritious and delicious meals, ensure safe and reliable transportation and redesign the home and its furniture—if necessary—to promote safety and ease of use. Finding an in-home companion or caregiver to help make these plans a reality may be a wonderful step for your family, especially if you find a compassionate expert to help relieve some of the stressors for both the patient and their family.
Holistic care considers the patient’s whole life beyond their diagnoses. A big part of holistic care is the person’s sense of happiness and well-being. One way to give room for joy beyond just clinical disease management is to encourage your loved one to have an outlet. Maybe they want to start a dream journal or pick up a hobby such as painting. Adapting to life with a chronic disease can be disorienting, so be patient with whatever helps them feel grounded and secure.
Another part of holistic disease management is considering your loved one’s social output. Are they getting to see others as frequently as they like? If managing social calendars has become more difficult, consider signing them up for a regular outing such as a book club or a gardening club. Getting them out of the home will contribute to both their exercise needs and community needs. Humans are social creatures, so while group outings may seem secondary to managing the actual disease, they should really be prioritized.
If your loved one is currently in a post-surgery state or is unable to be as active as they’d like, in-home care that supports comfort, relaxation and restful stimulation would be ideal. If the patient is struggling physically with a disease such as Parkinson’s, hobbies such as art, puzzles and reading can help them feel fresh and active. The key is to balance their health needs, social needs and individual needs.
Since everyone’s personality is different, conjuring up a perfect in-home care plan may take some trial and error. At Fedelta, we prioritize integrated care solutions, which means that we work with the individual and their families to provide the support they need. There is no check-the-boxes solution to great holistic health. Every client is different, and we believe these differences should be accommodated and celebrated.