Caregiver Honor Roll: Erin Sheedy

The Caregiver Honor Roll pays homage to family caregivers, like Erin Sheedy.

Caregiving situation

Erin cares for her father, Joseph "Biff" Sheedy (age 68), and her mother, Nancy Sheedy (age 70), in her Upton, Massachusetts home. Biff was diagnosed with vascular dementia in early 2009. Erin had been helping her mother care for him since 2000 because of his prior heart trouble, diabetes, and legal blindness. For the past three years Nancy has no longer been able to participate in Biff's care, due to the combination of his dementia behaviors and her worsening COPD.

Through a life plan the family made before Biff's dementia diagnosis, Erin receives pay from his Medicare and long-term care insurance to take care of him. Like many others, Erin left her job (in retail management) to be a family caregiver, but she considers her role an honor. Biff's parents and siblings also suffered from dementia, and Erin learned a lot about this type of caregiving when her grandmother lived with the family.

Two months ago, she made a decision to stop taking him to daycare. While he's always been a social bug, she says he started speaking in nonsense sentences, and she didn't think it was appropriate for him to be there anymore. Instead, she gets respite through companion hours by an in-home caregiver, visits that are also covered by Biff's insurance.

Biggest caregiving challenges

Erin is challenged most when her father experiences sundown syndrome, causing confusion and disorientation. He also rummages and wanders through the house. "I worked through the 'I want to get out of here' and 'I want to go home' stages," Erin says. "At one point, it was all day I was hearing those things. Now I try and keep him busy with activities to stay ahead of the wandering."

Last year Erin began taking her dad on walks. At first, he could only walk about thirty yards and back again. By the end of summer, though, she had him walking up to half a mile every day. Unfortunately, Nancy couldn't join them due to the severity of her COPD. This would sometimes prompt Biff to ask, "How come that lady doesn't come with us? She should come with us."

More recently, Biff started falling and now needs a wheelchair, which is difficult to maneuver in the family home. "I can't carry him," Erin says. "So I'm thinking about taking the front screen door and bathroom door off, so I can get the wheelchair into those rooms."

Biff also can't get out of bed to eat, because he doesn't have enough muscles in his back to hold his head up. "We usually eat meals together in his room," Erin says.

Emotional journey

Erin is saddened by what dementia has done to her dad -- stealing his memories, changing his behavior, reducing his physical abilities. In a comment on, she talked about how he recently spoke her name, something he hadn't done in more than a year. "It hurts to see my dad like this," she says, "but I know it's not his fault -- it's the disease."

She says Biff knows he has a wife and children, but he doesn't understand or remember that he's been married for 41 years. He and Nancy met and fell in love at Cushing General Hospital in Framingham, where they both worked. After they were married, Biff started his own business selling t-shirts and memorabilia, and many people in the area got to know him well. "I love it when someone around town stops me and tells me stories about my dad," Erin says. community

Erin discovered four months ago and has been an active participant in her Stage Group. She turns to to get tips and connect with other caregivers. "It's a really neat site, and I wish there were Steps & Stages for all of the diseases," she says. Erin enjoys reading the stories from others like her and says that "within a few hours of posting a question or comment, someone will have something to say that helps me."

Tips for other caregivers

Erin offers these suggestions for caregivers:

  • Listen to the meaning behind the words."His language is changing, and it can be annoying hearing the same thing over and over and over," Erin says, "but there is some meaning behind it." For example, when Erin's dad says he has to go to Gerry's house (a friend's house where he used to stay often when he was young), what he really means is that he wants to go to bed.

  • Keep your loved one busy with activities -- the simpler the better."If he (or she) is active, let him be, as long as he's safe! If he can't do the cooking anymore, but tries, buy instant pudding," Erin says. Other activities Erin suggests: folding laundry or face cloths, playing with building blocks or a box of pictures (asking the loved one to sort photos by gender or color), using a "busy box" with compartments to open and close ("It gives Dad a feeling of accomplishment," she says), sorting puzzle pieces, or squeezing packing bubbles.

  • Don't get mad because your loved one did something wrong."He doesn't know better," she says. "Show him what to do instead, and maybe you'll make a reconnection in the brain for next time."

Most of all, she says, enjoy the time you still have together.

Favorite song, book, or movie shared with loved one

Biff loves anything by Frank Sinatra. Through hospice, a music therapist visits Biff and strums Sinatra songs on his guitar. Biff likes to sing along. "It's the most beautiful thing I've seen," Erin says.

A fond memory of her dad that Erin cherishes is his use of a phrase from the movie Goodfellas. Before his illnesses, he used to say to his dog, Benjamin, or to friends, "You're a good fella. You're one of us!"

We hope you'll share your supportive comments with Erin below, or send her a virtual hug or prayer via her profile.


almost 5 years, said...

Thank You all for the comment and insperational messages. Miss my Dad so much!

over 5 years, said...

God Bless You Erin!!!

almost 7 years, said...

My Father Passed Away 10-20-11

over 7 years, said...

Thank You Everyone! Happy Father's Day!

over 7 years, said...

I too had similar experiences with my dad. He passed away 2yrs ago next month. He had such a wonderful love of life. He taught ballroom dancing with my mother for over 20 years. All done with hearing loss and double hearing aids. I was always close to my dad. I miss him terribly. I am now the main caretaker for my mother. She is also a dementia patient. Just recently one of her doctors confirmed it to me. It can be very stressful I know. I am also disabled and an only child. So I do the best I can for her as I promised dad I would. You are right, Enjoy them while they are here. Thanks again for sharing your story.

over 7 years, said...

Erin, you and your family are true inspirations for all caregivers today. I admire the way you have handled the financial aspect, too. It's good that you take care of yourself by hiring in-home care workers to give you respite. My brother and I tag-team our mom's care, along with privately hired care worker. Mom has ALZ and Parkinsons, with heart, depression, and thyroid issues. Music is an essential component as well as reading to her. Wishing you continued blessings!

over 7 years, said...

Erin made a suggestion about listening to the meaning behind the words. I am really trying this. I am getting better @ figuring out what my mother-in-law wants but sometimes it is still hard. She does repeat alot still.

over 7 years, said...

One year ago today, my life changed. My mother fell and had a Tramanic Brain Injury and currently is in the last stage of demenia. Its saddens me to watch her slowly die. She went though all of the same syndromes that you Dad has gone though or are going though. She has been home with us since leaving the convalesant on July 31st. Yes, life has not been easy for my sister and I, but I will take care of mother for as long as she is with us.She is so lovable and makes us laugh saying things that we don't understand. My prayers are with you and your family. Stay strong.

over 7 years, said...

Erin, It sounds like you have a handle on things. Things are tough but we are tougher. You have done a good job of helping your Dad and Mom and I know they appreciate it. I have used all the things you have except I have not taken down a door. Jeryl was in the wheel chair for 6 weeks at home but now is walking again. I use the wheelchair when we go shopping. But got a light weight one that only weighs 15 pounds. I keep it in the car. Keep up the good work and God Bless you. Hugs.