Caregiving is something Brenda has been doing full-time since 2000, and, because of this, she is really able to relate to the adult caregivers she talks to on the phone every day.
“Caregiving is very hard, but I’ve found that one line really helps the adult caregivers: 'it’s not easy raising a parent,'” said Brenda laughing.
This lighthearted humor is a part of her family, and she’s incorporated this into her caregiving duties. In 2001, when Brenda was just 36, her mother was diagnosed with sarcoidosis of the lungs, and eventually became wheelchair bound and required constant oxygen. Her father’s vision started failing and he was legally blind by 2001. Between 2001 and 2004, Brenda primarily looked after her mother because her mother continued to help with her father’s care, despite her worsening condition.
“They really complimented each other and that’s why their marriage was so successful. They were best friends. As they aged, their joke was that my mother was my father’s eyes, and my father was my mother’s legs, so together they would be a complete person,” said Brenda smiling.
Unfortunately, Brenda’s mother’s condition worsened in 2004 and she became very ill. Before she passed away, Brenda promised to watch after her mother’s husband and best friend.
“I said ‘you can go and be at peace, I will always take care of dad. I want you to know that,’” explained Brenda. “I feel like it is an honor to do, as much as it can sometimes be frustrating.”
That is a promise that Brenda has fulfilled two-fold, and in 2004 she became the full-time caregiver for her father. Prior to her mother’s passing, she had moved in with her parents to provide better care for them. They lived in a home in Connecticut, and then together in a ranch house in Florida. After Brenda’s mother passed away, it was very painful for her father to live in the house he had shared with his wife. Brenda decided that they should move back to New England. They moved to Massachusetts in December 2006.
“Now we’re in a condo, and in a condo, you don’t have a lot of personal space,” said Brenda laughing. “It’s difficult at times. For example, if you don’t want to listen to the music my dad is listening to you don’t really have a choice. I’ve listened to a lot of Eva Cassidy.”
With her father’s diagnosis, it can be difficult for him to leave the house. He gave up driving about six months after he realized his vision was failing. Brenda has a difficult time encouraging him to leave the house because he has a natural tendency to be somewhat reclusive.
“He isolates himself at home, so, in a lot of ways, I’m his only social outlet in addition to being his full-time caretaker. I don’t get upset, but sometimes it gets to you.”
Instead of finding activities at the local senior center, he opts to spend most of his time with their miniature schnauzer, Maddie. She is 12-years-old, and also lost her vision this past year. The pair spends their day together, and they’ve worked out quite a schedule. The two go outside walking, and her father will take his seated walker and watch Maddie as she walks around. The two then make their way down the road to the gas station to buy scratch tickets, and then to Dunkin Donuts for lunch. In addition to their outside activities, they spend some of their day watching Home Shopping Network and researching their family tree with a computer that has been adapted to compensate for his reduced vision.
“I never realized that, until my mom passed away, my mom kept my father really in control and grounded. Without her, if left to his own devices, he will really do some silly, silly things,” joked Brenda.
However, Brenda has worked incredibly hard to help her father maintain a sense of independence.
“That’s one of the things I always think about. How can I provide him with some independence? I always give him options for dinner, for example. I like him to have some control. It’s very hard to feel like you’re losing your independence, especially for men.”
From ensuring that the carpeting in their condo was flush with the walls and level with the hardwood floors so that her father wouldn’t trip, to hunting down a specialized stove to allow her father to cook, Brenda has actively pushed to provide her father with this independence. Brenda is now preparing to remodel their bathroom to make the shower more accessible.
“Well, the most rewarding thing about caregiving is knowing that my dad is happy where he is, and knowing that the quality of life that I’m able to give him is appreciated,” explained Brenda.
It’s this perspective and appreciation that has helped Brenda while working with other adult caregivers.
“My experience with my dad has really helped me. When the caregivers are stressed out, I know it helps just to have someone listening to them and telling them that we are there for them. I always say how lucky their parents are to have them as an advocate, and how wonderful it is that they take the time to be involved in their parent’s care,” explained Brenda. “It’s not easy for them. But, it can help if you put it into perspective – how much your parents did for you, and how much you can give back.”
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