When her mother was diagnosed with vascular dementia, Linda Ledbury was no longer just a daughter, but a caregiver.
It also brought with it many emotions, especially guilt.
“I had guilt that my mom is in a secure care facility — which we called a nursing home when I grew up, and was a place you put someone to die.
“And I had guilt that I can’t take her out of the facility for ice cream or a meal. With each visit, I noticed increased anxiety and after I leave, I feel like a ton of bricks are sitting on my shoulders and I am truly exhausted.”
Ledbury said the exhaustion is caused by many things, including talking to her mother at length about events and people from years ago, and the diplomatic responses required for questions that can’t be answered.
“It’s listening to her tell me that she has a visit from my uncles or grandparents — who are long gone — or that my father came to visit, also long gone,” she said. “It’s carrying my phone with me constantly and ensuring that either my sister or me be in town at all times in case that dreaded phone call comes.”
Ledbury said there are a number of things that would be helpful to her as a caregiver: not having to be on a wait list for support groups, having all groups that deal with dementia and Alzheimer’s cooperate and join forces for one common goal, and having a central place to access all information on local resources for facilities, groups and information.
Alison Miller started realizing something was wrong when her mother, Maddy Smith, began to lose interest in the crossword puzzles she loved.
“I would notice The Globe and Mail still rolled up and sitting on the dining room table and she has difficulty focusing on her books, although she always carried one in her purse just in case she had time to read,” said Miller. “Watching television became a challenge as she was having trouble changing channels and getting to her beloved movies and favourite shows.
“The disease was starting to kick in and I had to start planning for the future.”
For Miller, that planning included spending more time with her mother and assessing everything about her current life.
“Together with my sisters we wanted to understand what is waiting for us and how we could accommodate Mom’s needs in the best way possible.”
Working full time, Miller found it challenging to find the time to take her mom out. She was becoming much more dependent on her daughters for outings and could easily spend days without leaving her apartment.
For Miller and her mother, the arts programs offered by Dr. Dalia Gottlieb-Tanaka’s Society for the Arts in Dementia Care offered a perfect solution for the two to spend time together in a supportive and friendly environment.
“It means a lot to me and my mother and it is comforting to know that Dalia knows how dementia can manifest itself and what to expect,” said Miller. “She also knows how important it is to caregivers to immerse ourselves in art projects as well, so to lift our spirits we go continue with our challenging and difficult new tasks.”
Miller said she knows there is no cure for her mother’s dementia and it is not an easy journey for the family.
“Dementia is a temporary condition which comes in stages and we need to cherish the lucid moments that are there,” she said. “I feel it is our responsibility to help her go through this final stage of life by maintaining her dignity and showing her our support.”
For caregivers like Miller and Ledbury, yoga, therapeutic music and delicious food are just a few of the ways they will be nourished at a workshop and retreat for caregivers this fall.
I Am a Caregiver — I Need Help Too is designed for caregivers who need a break from their demanding responsibilities and an opportunity to learn ways to cope with difficult situations.
Sponsored by the Society for the Arts in Dementia Care, the retreat takes place Sept. 8 to 10 at Okanagan Lake Resort in West Kelowna.
A subsidy of $200 will be offered to the first 20 registrants to cover part of the entry fee into the three-day workshop/retreat, and two nights’ accommodation at the resort.
Gottlieb-Tanaka is chair of the society and she is currently seeking expressions of interest from family caregivers.
“Qualifications are that you are caring for a family member diagnosed with dementia who lives at home or in a care facility,” she said. “Preference will be given to family caregivers but formal — paid — caregivers can also apply.”
The workshop program, designed and presented by professional therapists, includes practical topics such as useful coping strategies, lectures and group discussions. Successful applicants may enjoy meals and socialize with other caregivers, sharing their experience of caring for someone with dementia.
“The retreat includes therapeutic music and art, yoga, and gentle physical activities that can refresh and replenish flagging energy,” said Gottlieb-Tanaka.
Deadline for your expression of interest is June 1 and should be submitted to: The Society for the Arts in Dementia Care, #205 – 3609 30th Ave., Vernon, B.C., V1T 2E6 or e-mail: firstname.lastname@example.org. Successful applicants will be notified by June 15.
In your expression of interest, include the following: your name and contact details (phone and e-mail); your relationship to the person living with dementia; name of the person you care for and how long you have been doing it; explain the reasons why this workshop/retreat will benefit you; a letter of support from a medical practitioner and/or a director of care would be beneficial
For privacy, all expressions of interest will be reviewed in strict confidence by a committee composed of the society’s directors. Successful applicants can choose whether to release their name for limited promotional purposes.