Wednesday, April 22, 2009

Book interview

My friend, and co-worker, Karen Boyer, regularly publishes a column: Caregiver's Voice, in the local papers. She asked if we could collaborate on an article, and I was happy to do so. Karen is co-ordinator and leader of caregiver support groups for those with Parkinsons, MS, strokes, and other chronic diseases, and Muskoka Network Against Elder Abuse, and The Friends, supporting those with long-term health care needs. She is a dear person, with much humanity and certificates in geriatrics. Her regular columns bring a wealth of knowledge and experience to senior advocates in Muskoka.

Jennifer, tell me why you were inspired to write this book?

I gave up a great job and career in Ottawa, having lived and worked there for twenty-five years, to move to Muskoka and provide care for my failing parents. They were both fighting cancer. I felt helpless, as I juggled the responsibilities of motherhood and caring for ailing parents. I know I am not alone in this situation. Many caregivers are adult daughters who sacrifice their careers, and juggle their lives meeting the needs of aging parents. I did a great deal of research and wanted to share the lessons learned.

When did you realize that your father was as ill as your mother?

My father’s brain tumour was diagnosed in 2003 after a grand-mal seizure. He, too, had surgery and was sent home. He had mobility issues, his arthritis compounded the effects of the brain tumour. When I visited my parents in March break, I realized that they were both going downhill. I know Dad exhibited signs of delirium. Mind you, I didn’t know what dementia was, and at the time I did not realize the significance or the difference between dementia and delirium.

What is the most important lesson you learned while caring for your parents?

My mother was adamant about going to appointments alone, and this was a huge mistake on my part. She did not hear well, she was ill fighting cancer, and did not comprehend some of the terminology. Mom was unable to advocate for herself: asking questions about treatment plans, treatment side effects, the impact of treatment on her quality of life, as well as survival rates from the treatments. At the time, I was as unfamiliar with the health care system as she was, and neither of us knew our rights to having this kind of information. While I kept a medical diary of her symptoms and treatments, I should have been adamant about attending appointments with her and assisting her in getting all of the information, and taking notes. She was afraid to ask questions and all she knew was what she had heard from friends, the media and what the oncologists chose to tell her.

What work have you been doing in the field of senior health care as a result of your knowledge and experiences?

I sat on the Aging At Home Project through the LHIN and the Ministry of Health's LTC plan to help seniors stay in their homes. Their goal was to improve the LTC situation, relieve the hosptials.
I worked as a Cardiovascular Health Awareness Program coordinator, as well as a Peer Health Educator (CHAP.ca) through The Friends, in Muskoka. I spoke to caregiver support groups, as well as at Adult Day Away Programs, to provide information on blood pressure and other health issues.
I earned my Foundations in Palliative Care certificate in April, 2009, and I am a registered volunteer with Hospice Muskoka.
I continue to assist my friend, Michele, who is in LTC. She is paraplegic and in pain 24/7. I have accompanied her to the hospital and a dental appointment. She must use an ambulance for all transportation needs.

The final section of your book contains important conclusions about senior health care. What is your most important idea?

Firstly, that since we regulate those who work with children we really ought to regulate all those who work with seniors, as well. There is much we know about geriatrics, a much more complex stage of life than pediatrics. In profit and non-profit care we allow personal support workers (PSW) to provide intimate care to loved ones. To work in Day Care you need an ECE degree, yet PSWs may or may not have a certificate from a college. This must be changed.

Many of the PSWs I met are wonderful people, who have life and work experiences that help them perform their duties well. I simply would not tolerate someone incompetent working with us. Unfortunately, it only takes a few bad apples to give the entire group a bad name. I have some dear friends who similarly want to raise the bar of professionalism. The people at PSW Canada have begun a campaign in this regard.

Their goals are to have high quality health care providers. We do not have control who is working where. There is no tracking system and while employers can let go those who are unsuited to working with seniors, or whose personalities do not suit this intimate care, the bad apples go from workplace to workplace. They are the fodder of the media attention in which seniors are physically abused and/or neglected.

With increasing complex care needs, and the lack of nurses in what were formerly know as nursing homes, now called long-term care, caregivers need much more knowledge, experience and training to meet these needs. In some cases, seniors are neglecting themselves, in other cases families are reluctant to make complaints for fear of retribution. This must change.

References:
Barclay, L. (2006). Shortage of Geriatricians May Hinder Healthcare for Elderly, Retrieved online from http://www.medscape.com/viewarticle/544464
Check on Senior Care Urged: Both opposition parties say nursing-home neglect will be a big issue for aging electorate in Oct. 10 vote.. (Toronto Star, 2007)
Ombudsman renews call for oversight of hospitals and long-term ...(pdf report, 2008)
Ombudsman Finds Ministry Bound By Its Own Red Tape (Sept., 2005)
Rachlis, M. (2006). Seniors’ health: We can’t afford the future if we don’t repeat the past. Retrieved August 29, 2008, from www.coaottawa.ca/health_forum/DrRachlis.ppt.

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