"My mother had five bouts of cancer starting when she was 70." That statement alone is enough to shake up even the most hardened individual. That is the beginning of Bob Silver's caregiver story.
Bob is very open about the circumstances of his mother's life and eventual passing. "My father was able to take care of my mother until they hit their mid-80s, then it became much more difficult for him to cope, so I started to try to convince them to move into assisted living," Bob explains. But Bob's parents, Sylvia and Louis, wanted to stay in their home, which is where they felt most comfortable.
That is the case with the majority of people who, as they age and start to develop health issues, find themselves pulled in different directions. They want to remain independent and live in their own homes, but often their children feel the need to encourage them to move to a place where they will have some supervision. "In retrospect it was because I didn't have the right information, and it was all about me, not them. I lived 600 miles away, had a busy career on Wall Street, a life with my family and wasn't able to visit my parents very often. I was just thinking about what would make my life easier and I was trying to avoid feeling guilty."
Navigating the push and pull with parents
Bob continued to try to push his parents into moving into assisted living after his mother suffered another bout of colon cancer and was hospitalized. "She was going to come home and I didn't know what to do. When I told them I thought they really needed to go to assisted living, we had a very angry discussion. They absolutely refused."
Backing off a bit, Bob found Home Instead – a company that provides nonmedical home healthcare – and convinced his parents that if they insisted on living at home they needed in-home care. "That was a huge hurdle too. They were worried about the intrusion of having a stranger in the house. They agreed to one shift."
Once Bob acquiesced, he realized that his parents actually were better off at home versus assisted living. "I learned that assisted living doesn't provide the kind of care I was thinking of – it was really just an apartment. This way they would not be disrupted into leaving their home." Sylvia and Louis had already moved to a single-story home to avoid having to climb stairs. "It was on their synagogue property, so it was the perfect situation – it was a ranch and they had 400 congregants watching over them."
For the next seven to eight years, Bob's parents lived in the ranch house, at first with one shift of in-home care, and then adding a second shift. Sylvia died shortly before her 90th birthday. Louis then added a homecare aid to stay with him at night, "mostly for companionship," Bob explains. "She came into his room at 10 p.m. and they would chat for an hour, then she prepared his breakfast before she left in the morning." In June 2008, Louis fell and broke his hip. Bob added round the clock, 24-7 caregiving for his father. On October 8, 2008, Louis passed away with Bob and his caregivier of 5 years, Dorita Free, by his side.
Sharing poignant stories
Any child who has lived through a parent's death knows how important it is to share stories and memories, before and after. "My mother ran a senior citizen's education program every Tuesday until three weeks before she died. And, having cancer for almost 20 years, she must have been in pain a lot of the time but she never complained."
Bob, his sister and his father spent the week together before Sylvia's death, along with hospice caregivers, who walked them through the process of what to expect each step of the way. "One night we thought 'this is it' when my mom started stress breathing which had been described by the hospice caregiver. My sister had prepared a wonderful home-cooked meal, but when we were about to sit down, the gasping and coughing started. We sat with her crying for an hour, thinking that this may be the end, but then she just fell asleep comfortably. So we started to laugh and sat down to eat."
Preparing for death and beyond
"It's important for people to understand that they really should prepare for dying," Bob says. "It was extremely helpful to us that we sat down six days before and prepared everything – we went to the funeral home, met with the rabbi and wrote our eulogies. It was so helpful to sit up at night and write, edit and reflect together."
Another part of the process Bob found invaluable was visits from friends and families paying condolence calls. "It was really wonderful to receive a visit, phone call or note from friends and family – especially people we hadn't been in contact with for a long time. One colleague of mine called months later before Thanksgiving to let me know she knew the holiday would be difficult and she was thinking about me."
Parentgiving: helping people find their way
After struggling with all the issues of caregiving and dealing with the end of his mother's life, Bob felt compelled to cofound Parentgiving.com. "There are so many issues that people are not aware of or not willing to face. Our hope is that Parentgiving will provide the support that people need to help themselves help their parents."