CHRONICLE 15-16 ISSUE 14

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18 The Chronicle March 21 - 27, 2017 chronicle.durhamcollege.ca
Community chronicle.durhamcollege.ca March 21 - 27, 2017 The Chronicle 19 Caring for someone who has Alzheimer's in Durham Region Jenn Amaro The Chronicle Cheryl Mina recalls when she first noticed her mother’s disease. It started with nightly phone calls. Mina’s mother started repeating herself quite frequently. “She would tell me over and over again about her trip to the grocery store that afternoon,” says Mina. Initially, Mina convinced herself her mother was merely getting old, and there was no reason to concern herself over a little repetition. But the problem continued. Her mother was diagnosed with Alzheimer’s in 2011. At the time, she lived with her husband in Toronto, and she was well taken care of. She and her husband went grocery shopping together, attended church every Sunday, and kept to a fairly regular routine. Her disease progressed slowly, but she relied on her husband’s aid. In December of 2011, her husband was diagnosed with Pulmonary Fibrosis. Two months later he died – and everything changed. During his hospital stay, Mina’s sister, Karen Deschenes, moved in with her mother in Toronto. “I knew she had been diagnosed with Alzheimer’s but I didn’t think it affected her that much until I was her sole caregiver,” says Deschenes. Deschenes says her mother wouldn’t remember to take her medication unless it was handed to her directly. If they went out to the grocery store, a familiar routine, she wouldn’t be able to find her way home on her own. They knew as a family she could not live by herself. “I was so afraid of her thinking of going for a walk, and getting lost,” says Mina. “None of us lived close by.” It was time to make a decision. Mina’s lifestyle was the only one that could accommodate this change. With a spare bedroom and flexible work hours, the decision was made to bring her mother into her home and care for her herself. The last five years of living with someone with Alzheimer’s has put much strain on the family, but options are limited for these circumstances. According to Statistics Canada, almost 400,000 Canadians are living with Alzheimer’s. It is the most common neurodegenerative disorder, and the number of diagnoses go up every year. Families have to decide how to care for a loved one who is living with Alzheimer’s. The decline in mental function affects the way people with the disease do daily tasks. It affects their memory, their ability to focus, social behaviour and communication skills. When the disease progresses, and those living with Alzheimer’s can no longer care for themselves. There are three options with how to deal with it. There is formal assistance, where Mary Doiron, the mother of Cheryl Mina and Karen Deschenes, sits in her room at Cheryl's home. trained staff come to the patients’ home as regularly as needed to provide services, such as prepare meals, give medication and bathe the patients. There is informal assistance where a spouse, child, grandchild etc. becomes the caregiver. Finally, there is long-term facility care where patients live full-time in a care facility with 24-hour staff and programs. In Durham Region, there are 19 care facilities, with over 2,700 beds, and according to officials at each location, every facility has a waitlist. This waitlist and the progression of the disease make it difficult for families to plan. According to Dr. Judes Poirier, a molecular neurobiologist at the Douglas Mental Health University, long-term care facilities offer the best support for people with Alzheimer’s. They have properly trained staff to stimulate the patients’ brain and the patients are properly cared for and have 24- hour care. While long-term care facilities are the best option for the patients, they are not always available when needed. According to Rhonda Thompson, a Family Support Coordinator for the Alzheimer’s Society of Durham Region, anyone living with Alzheimer’s needs to have doctor’s referral to live in a facility, and if someone applied to one without a doctor’s requisition, full-time care is difficult. Thompson says without a crisis or requisition the wait can be upwards to eight years before securing a place in a long-term facility. She also says retirement homes are an option for early stages, but are not best-suited for Alzheimer’s or dementia. When the disease progresses to a more severe state, a long-term facility is much more appropriate. If there is a crisis in the family, Thompson says the person living with Alzheimer’s will make it to the top of the waitlist, however, the family will not have a choice where in the province their lovedone will be placed. They will be placed wherever there is space until a place opens locally. It is nearly impossible to determine when that will happen. Long-term care facilities accept their patients based on need, not when they applied. It comes down to a wait and see for how the disease progresses. Therefore, in-home care or family caregivers is a common step during the progression of Alzheimer’s. This is usually done between the diagnosis and when there is an available bed in long-term care, says Thompson. Mina says there are times when the need to be home is wearing on her. Because of her mother’s progression, she hasn’t spent a night out of her house in a couple years. Her mother would get too confused if she stayed at someone else’s home for a night. “She gets lost in her own home. She can’t always find the bathroom, she doesn’t know where her bedroom is at night,” says Mina. “I have to get her changed every day, make her breakfast, lunch and dinner, shower her, comb her hair. She developed habits in the house, her most recent activity is emptying her dresser drawers onto the floor. I come home every day to her entire wardrobe spread out, I put them back into her drawers, and ten minutes later she’s got them back out again – she’s a full-time job.” Some families are fortunate enough to have someone able to dedicate this amount of time to a family member. But not all. Some families choose formal assistance. Deschenes considered this option when they knew it was time for their mother to move somewhere. Deschenes thought she could continue her daily activities and have someone care for her mother during the day. However, when they looked into the cost of formal assistance, and the idea of someone being inside her home every day while she wasn’t there, the idea became uncomfortable. Deschenes appreciates all her sister has sacrificed to take care of their mother. Unfortunately, the sisters live hours apart, and Deschenes doesn’t get to see her mother as often as she would like. “I don’t drive, and only get to see my mom once every couple months. Each time I see her, I see the progression of her disease. It’s disheartening.” Mina, however, notices the overall decline of her mother’s mental state, but doesn’t see the drastic changes because she is with her all the time. The Alzheimer’s Society of Durham Region offers support programs for people in Mina’s situation. Thompson says programs run throughout the year, and benefit both the one living with Alzheimer’s and the caregivers. There are numerous educational services, as well as support groups where anyone can discuss what they are going through, and how they cope with a loved-one with Alzheimer’s. The programs discuss strategies on how to deal with new development and what is to be expected while caring for someone living with Azheimer’s. Photograph by Jenn Amaro Dr. Poirier says violence comes with the later stages of Alzheimer’s. This is one of Mina’s fears. “I’m okay with being a full-time caregiver right now, but eventually it will be out of my control. Long-term care facilities are a good option, but you just never know when there’s going to be an opening.” Their plan right now is to get their mother registered with a longterm care facility in Durham Region, and start the waiting game. This is the struggle of the waitlist. The progression of the disease is unpredictable, according to Dr. Poirier. Everyone progresses at their own rate. Mina says, according to her mother’s doctors, her mother has progressed quickly. Due to so much change in her life, her mind was not able to process it, and it sped the deterioration of her mental capability. Deschenes says every time she visits her mom, she tries to get as much out of the visit as she can. There are good visits when her mom knows what she is talking about and other visits when Deschenes says her mother is in a different world staring, off into space. “It’s hard to watch the deterioration, but I’m taking everything one step at a time,” she says. Deschenes and Mina have grown closer since the diagnoses. They both attend support groups, and online chats make them feel they’re not alone. The sisters rely on each other for support and know that between the two of them, they are doing all they can for their mother. Mina says, “You just never know when things are going to get worse, but for now, my mom is my mom, I love her and she tucked me in at night when I was child, and I’ll do it for her as long as she needs.”
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CHRONICLE 15-16 ISSUE 14

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