Robert "Bob" H. grew up in Middleton. He left for college in Mississippi, then came back. He served in the Army, then came back. He spent time in Chicago, then came back. It’s pretty clear that being home is very important to Bob, but there’s something that threatened Bob’s desire to be at home – an Amyotrophic Lateral Sclerosis (ALS) diagnosis.
ALS, or Lou Gehrig’s Disease, is a progressive neurodegenerative disease that affects motor neurons in the brain and spinal cord and the ability for the brain to initiate and control muscle movement. Bob’s ALS is called "Sporadic ALS", which disguised itself as carpal tunnel at first; he was likely living with the disease for a couple years before a positive diagnosis was made.
Bob’s caregiver Margaret reached out to Home Health United in 2012, utilizing HHU’s informational visit. Bob and Margaret learned about how home health services could help Bob, care options, and other programs to make his home safer.
Janet Bollig, a HHU Senior Business Development Specialist and Medical Social Worker, completed Bob’s informational visit. "After meeting with them, we got a SAFE (Safety Assessments for the Elderly) at Home visit set up. In June, we got home health involved. Eventually Bob was transferred to palliative care, and ultimately hospice. He also uses our medical equipment, and an aide comes to give Margaret some respite."
Bob knows it’s because of all the support of his friends, caregivers and Home Health United that he’s able to stay at home, which is so important to him. "I’m truly blessed. They got everything situated so I could stay here."
To an outsider, "blessed" is not a word they would associate with a terminal ALS diagnosis. But Bollig describes how Bob has a "unique outlook": "how do you take a bad situation and find something good in it? Bob has done that. It’s why I got into social work. But you’ve got to have the support."
Bob adds, "You have to make a decision to be miserable, or accept it and get past it. Janet laid it out so clearly for us from the beginning. I’ve accepted it. Today, I went out with my friend Abe and had a burger for lunch. We take rides down to campus to check on my rental properties. With my lift chair and wheelchair, I can get around without falling.
"In March, I’m even making my annual trip to Florida for Spring Training baseball. I may even have a cold beer and tailgate a little. Margaret is going with me this year. Margaret has extended my life by so many years already. I love her dearly, she’s phenomenal."
Margaret is Bob’s primary caregiver, but when Bob was transferred to hospice, an HHU aide started providing Margaret respite. "It’s going to help immensely, she’s going to be my absolute savior. She warms up his breakfast, makes coffee, helps with the bathroom and shower.
"And she’s a really nice person to boot," adds Bob.
Even in the face of a degenerative terminal illness, Bob remains positive, an inspiration to everyone around him. "He could be a counselor if someone was struggling. He’s terminal, and no one has a better attitude than he does," said Margaret.
"You (Home Health United staff) are absolutely wonderful – high quality, excellent care, considerate, compassionate. I’m the focal point, the interest is always on me. The main goal is to stay here at home. I will stay here. I’m truly blessed."