Christina Hahn, RN, MSN, is a Supervisor of Care Managers for SeniorBridge in Connecticut. Her experience includes care for people with degenerative neurological conditions. We had a brief conversation with her recently to find out more about how medically directed home care can help people facing ALS, also known as Lou Gehrig’s Disease.
What’s the most important aspect of ALS home care for a caregiver to understand?
You have to be adaptable. The care you’re providing today will change because the nature of the condition is that it gets worse. So the care has to be flexible to fit the patient and family needs now, and in the future.
Can you give an example of how care has to adapt?
Sure. In early stages of ALS there may be more mobility, but we need to be ready to use a patient lift and a hospital bed when conditions change. Doors that swing open and shut can present problems, so we need to be ready to have them removed or install pocket doors that can be opened easily.
What are the medical issues you need to anticipate for clients with ALS?
The advance of the disease differs by the individual person, but the treatment is always based on symptoms. For example, constipation and skin integrity are common issues. Ambulation is critical and nutrition gets more important as the disease progresses. The effects of ALS are different but there’s always one goal: Quality of life.
How do you maintain communication with the patient?
We regularly sit down and talk through everything with them, because their mind is all there. It’s fully functioning and the one thing they can control is what they say. So we let them talk, and we listen. We have one patient who’s had ALS for 10 years with a tracheostomy and a ventilator, and the relationship has always been based on good, open, consistent communication.
Ten years seems like a long time for a person to survive with ALS.
This individual still does the family taxes. He’s still telling jokes. When there was a wedding in the family we made plans so he could be there because the psychosocial dimension of care is essential. We’ve set up an Eyelink Board that enables communication with eye movement. So life goes on. And I should also mention that he has an amazing wife.
As medical care changes for a person with ALS, how do you coordinate with the clinical team?
We maintain an open dialogue. The primary care and specialty doctors still review all changes in orders and plans and medication. Our care managers are in the home weekly, coordinating with shift nurses, CNAs, or HHAs. Healthcare skills are essential, but so are communication skills.
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