How We Make It Work

Caring for a family member with dementia is never easy, but amid the COVID-19 pandemic, life with a loved one in a long-term care facility has been particularly fraught for many. Victoria’s Brenda Brophy has always been close to her 101-year-old mother, Dot. The pain of not being able to see Dot for months during the long-term care lockdown became so unbearable that Brophy eventually made the very tough decision to pull her mom out of the facility she was living in and care for her at home. Here, Brophy offers a glimpse into their experience:

A Needed Change

“My mom has always been a very happy, positive, independent person. She was and still is an amazing woman. 

“Before the pandemic I was seeing her every day and helping to take care of her. When the pandemic started, the lockdown felt necessary, but after a few months it felt like we might not have a vaccine for a couple of years and something needed to change. The first time I saw my mother in person, months into the lockdown, she was down to 65 lb., her hair was greasy, her nails were dirty, and she just looked broken. She was a shell of who she was before. I applied to be allowed in as an essential visitor, which was allowed under the public health orders, but I was denied as it was deemed she was not ‘actively dying.’ I felt like if I didn’t get her home to live with my husband and I that she was going to die.” 

A Hurried Homecoming

[Left] Brenda Brophy & her mother, Dot [Right]

“We [informed] the facility and asked them to have my mom’s belongings packed and her medication ready and that we’d be picking her up that Wednesday. The whole thing is just a blur, but they didn’t give me her medication, and when I phoned and asked for it they hung up on me. After the pandemic hit, they were no longer treating families as partners.”

A Bumpy But Successful Transition

“Looking back, I realize that I didn’t know what I was going to do. I was using my own money to get private help and it was nowhere what I actually needed. I could only afford to pay out of pocket for about 20 hours a week. I was also taking leave without pay, which wasn’t sustainable. I still work full-time (from home), so juggling my work responsibilities with her care was a lot. I paid for a caregiver to be here until she napped several days a week. Then took on the rest of the care myself.

“Home care could not promise consistent workers, so the best I could get where they could provide consistent workers were three- to four-hour blocks of respite care in the afternoon a few times a week. It wasn’t much, but it at least allowed me to run errands and get groceries. If I had gone with funded home care, I would have had 12 more different caregivers coming and going and, as I quickly learned, they are only allowed to do certain things. For example, I asked that they take her hearing aids out prior to her nap. That was a hard no — too much of a liability. They couldn’t do medication, couldn’t do any colostomy care. So in the end, I had only one worker who came and sat reading while Mom napped a few times a week.  

“This is much less stressful for both of us. My mom is happy. She is safe. When the day comes when I physically lose my mom, I won’t have any regrets. We’ve remained best friends right to the end.”

– Brenda Brophy

“But then I found a really good doctor for her and he has a whole medical team to care for seniors in their homes. He told me I needed help, how important self-care was and to apply for Community Supports for Independent Living (CSIL) as it was a good program and if I could find workers it would be the best option. I’m now in my fourth full month of funding and have three retired healthcare workers that I knew from the first facility she had been in. They’re lovely. 

“My mom doesn’t need a lot complex care, she mostly needs companionship during the day and I can only do so much myself since I’m still working. She has great care and a wonderful doctor that comes to visit her in our house. I managed to get her off an inappropriate drug she was on and some debilitating gastrointestinal issues have gone away. Her life is much better now.”

Life Today With Dot

“My mom is a very funny person — she’s always cracking one-liners and is pretty hysterical. When I talk with her, she’s a little confused about why she’s here, and I’ll remind her that she moved in because of the virus. And she’ll make a face and say ‘Oh, that stupid virus!’ 

“I sit on the edge of the bed every night and I always remind her that I'm in the bedroom right next door. I explain everything, and have a script every single night just to keep consistency. And she smiles and says ‘Oh, that’s wonderful. I don’t have to be alone anymore.’ Her whole face relaxes. And I tell her ‘No, you don’t have to be alone.’ 

“This is much less stressful for both of us. My mom is happy. She is safe. When the day comes when I physically lose my mom, I won’t have any regrets. We’ve remained best friends right to the end.” 

Brophy’s Top Tips

Transferring a loved one with dementia from long-term care into a personal home isn’t easy. Brenda Brophy offers some tips for caregivers on making the transition:

1. Do your research. Find out which funding options are available to you for hiring care providers.

2. If possible, have a case manager set up in the health system in advance.

3. Figure out what equipment you’ll need. Contact Red Cross, as they do short-term equipment loans.

4. Talk to your local pharmacist regarding management of medication. 

5. Have the MOST (Medical Orders for Scope of Treatment) form and DNR completed and keep them on the refrigerator. 

6. Plan for palliative care along with your doctor. 

7. Adjust as you go. Remember that a strategy that worked today may not work tomorrow.

8. Find support. Talk with others on the same journey and never be afraid to share how you’re feeling.

9. Take care of yourself. Full-time caregiving is incredibly challenging, and self-care is essential.