We want all people living with ALS to be able to live their lives to the fullest, which includes getting the care and support they need to be comfortable and face death with dignity. Hospice and palliative care can help you do exactly that. Learn more.
For people living with ALS, reduced physical mobility and the ability to communicate often cause “Smart” homes – in which household items become connected and are controllable with the use of technology – can greatly improve accessibility and be life-changing for people living with the disease.
Being a family caregiver, while a fulfilling role, can consume a great deal of physical, mental and emotional energy. That’s why respite care is so important. It gives caregivers like you an opportunity to create a plan of care for themselves – something that’s often overlooked. Learn more.
Home infusion is a safe and effective option available to hospital patients involving the administration of intravenous medications in a patient’s home or other alternate treatment setting. Infusions performed at home have been found to be safe, clinically effective, and improve patient quality of life while being less costly as compared to infusion care provided in a hospital setting. This also leads to fewer disruptions in patients’ personal schedules and responsibilities.
Adapting your living environment to meet your changing needs will become a necessity as the ALS progresses. Environmental modifications can help you to stay safe and retain your independence for as long as possible. They can also lower your caregiver’s risk for injury, by making tasks such as assisting with transferring and repositioning less physically taxing.
When you’re providing around-the-clock care for a person with ALS, stress and burnout are to be expected. When added to the stress of everyday life, work, and family, caregiving can be overwhelming. Luckily, there are a number of strategies and techniques that you can use to help manage your stress and communicate your needs. Not to mention, we can help connect you with a supportive community of ALS caregivers and patients that can be a helpful sounding board and help you solve problems.
At some point during your journey with ALS, in-home help will most likely become a necessity. Many families choose to use a home health agency or a non-‐medical home care (companion) agency to match them up with suitable employees and coordinate the delivery of services. Other families opt to hire help independently, using personal referrals or an employment (registry) agency. The difference between an employment agency and the other types of agencies is that an employment agency simply matches clients with qualified providers - it does not handle any of the responsibilities of an employer, such as coordinating and overseeing the delivery of services, managing payroll and taxes, or providing ongoing training for employees.
Dr. Andrew Geronimo is a talented young investigator using brain computer interface (BCI) technology to improve the lives of people living with ALS by enhancing their ability to communicate. He and his mentor Dr. Zachary Simmons, also at Penn State Hershey Medical Center, have received a grant from The ALS Association to develop new opportunities for BCI technology.
When you hire in-home help, either through an agency or on your own, you automatically become an employer and a supervisor. These may be roles you are comfortable with, but for many people, managing the relationship with in-home service providers is unfamiliar territory. The people who assist you are integral members of your health care team, so you want to do everything you can to ensure that they are able to do their jobs effectively. You already took the first step to achieving a good long-‐term working relationship when you took care to hire the agency or person you felt was right for the job.