Special report issued but no relief in sight for rural family

Katie, Annie and Noel.

Katie, Annie and Noel.

With the release of the report on Ontario’s Community Care Access Centres by the Auditor General, people across Ontario are now learning of the lack of consistency in service management and delivery across the province.

Auditor General Bonnie Lysyk said in a statement,  “the current home and community-care service delivery model contributes to different experiences for patients, depending on where patients reside. For example, the 14 CCACs and their 160 third-party service providers don’t use standard care protocols, meaning that patients with the same condition may receive different treatments, depending on where in the province they live.”

This comes as no surprise to Noel and Katie Lobe, two Bancroft, Ontario residents who are struggling to provide care for Katie’s mother through the final stages of dementia. Care is barely being provided by the CCAC in their home and the following is a letter they are sending to Health Ministries both federally and provincially to draw attention to the challenges they face.

Noel and Katie’s story is not unique. This letter is published with their permission.

Honourable Rona Ambrose
Minister of Health
Government of Canada

Dementia is a word that frightens people, as it is a disease that robs a person of everything that makes us who we are as individual human beings. My husband and I have been caring for my mother in our home for many years, attempting to reduce the cost to the healthcare system by keeping her out of a nursing home.

My mother, Annie, worked as a registered nurse, nursing supervisor and Director of Nursing in a nursing home in two provinces, as well as the United States, over her 42 year career. She was well respected and held the need of the patient as her cornerstone through her varied career. She nursed both of her parents until their deaths at home. Her wish to remain in our home until her death has always been clear and supported by myself and my husband.

My husband and I both work full time professionally in our community. My mother has been a client of the Community Care Access Centre (CCAC) for over 6 years. Personal Support Workers were initially provided through VON in our home, with increasing hours as my mother’s health deteriorated and her needs increased. Three years ago my mother went for a walk, became disoriented and was found 5 kilometres away walking out of the bush. We live surrounded by an 800 acre woodlot in North Hastings and this frightening experience marked the ever changing reality of Dementia; that she now required 24 hour supervision.

The CCAC deemed her palliative which prompted a change in her case worker to the palliative worker, a specialist for those requiring the highest level of care in home to prevent placement in a nursing home in my mother’s case. We were offered 90 hours a month of PSW service. We have only accessed 80 hours of service each month over the last 3 years for several reasons. The PSWs are not trained to care for someone with Dementia so as my mother’s needs have increased, the staff capable of managing her behaviours in our region is now down to two. In rural health care, the staffing situation is so dire, we did not ethically believe we could place the burden of her care on the two already over-worked PSWs, given they work every second weekend.

As the Dementia was progressing we realized the best way to meet the increasingly challenging needs of my mother and maintain her in our home was to hire a full-time live-in caregiver primarily to care for her at night so my husband and I could maintain our employment. We advertised across Canada for the position but with no appropriate applicants, we were forced to access the Temporary Foreign Worker Program which took 1 1/2 years. The caregiver from the Philippines was screened through a Canadian company and began employment in September 2014. In August, 2014, VON refused to continue to provide PSW services to Annie with little notice as the PSW could not manage her increasing acting out behaviours nor were they trained in Dementia care. My husband and I attempted to offer information on managing these behaviours, however, VON chose to cease providing service instead.

The only other company available through the CCAC, Care Partners, stepped up to provide PSW services when VON ceased. Unfortunately, this change had to occur at the same time the live-in caregiver began her employment. So many changes in care for my mother created many difficulties which we had no choice but to manage. Unfortunately, the foreign caregiver only worked long enough to obtain the hours required to access Employment Insurance. She quit unexpectedly with short notice in July, 2015 requesting her Record of Employment to access the Canadian system for financial support until 2018 when her work permit expires and she is required to leave the country. When I contacted Citizenship and Immigration Canada about this shocking situation, I was told she is legally able to maintain her residency in Canada supported financially by our welfare system until the expiration of her work permit, whether she works or not as she is not required to work under this program. This emergency required us to hire a team of local women, whom we pay, in order for my husband and I to continue our employment.

In August, 2015, Community Care North Hastings ceased providing volunteer drivers to transport my mother to the Adult Day Program due to her fearfulness and difficulties associated with not recognizing all of the different drivers. In September, 2015, the Adult Day Program that my mother attends demanded only my husband, myself and my brother-in-law do all transportation to and from the program which would significantly impact our employment.

On September 3, 2015, CCAC reassessed my mother, filling out the paperwork to declare her incompetent given she is end-stage Dementia, requiring 20 out of 24 hours a day care. In actuality, she requires 24 hour care and has for several years, being incontinent, unable to prepare meals, requiring assistance with feeding and dressing herself, constant supervision due to vision, hearing and mobility issues, unable to distinguish day and night time and slowly losing her ability to recognize family members.

Financially, the burden continues to be great. We pay for her care privately as well as the government programs we access and the cost of transportation for programming. It is costing us more to maintain her at home than placement in a nursing home. We have had to purchase adult diapers, a bed exit alarm, a video monitor, door locks, handicap shower, handicap toilet seat, as well as build an addition onto our home to accommodate overnight caregivers.

Now in end-stage Dementia, my mother requires care and supervision for 24 hours, 7 days a week which equals 168 hours per week. The CCAC is supplying 12% of her care; 20 hours per week. The CCAC has recently informed us that we will be receiving 6% of her care when they reduce our services by 50% to 10 hours per week, giving us one week notice to make this drastic change.

We pay for my mother to attend the Adult Day Program which provides almost 11% of her care at 18 hours per week. We pay for my mother to receive the VON CARE program which provides 5% of her care at 8 hours per week. We are accessing all available government supports for my mother in our rural community which amounts to 28% of her needs.

The remaining 72% remains my responsibility.

I have had to access the unpaid government program for caregivers to protect me from job loss in order to provide care, which is up 8 weeks of unpaid leave per year. All of my vacation time at work over the past 5 years has been dedicated to providing care for my mother.

The redundant meetings and never ending paperwork associated with accessing services from CCAC, VON Adult Day Program, VON Smile, VON CARE Program, Care Partners and Veteran’s Affairs is also time consuming and on-going. The lengthy assessments required to access service from each program are clearly duplicated and are required either every 6 months or once per year.

The quality of care in a nursing home is a well known concern. As a nurse for almost 50 years, my mother knew well the system of care within a nursing home and our desire to prevent her placement in a nursing home is driven by her first-hand struggles during her career with a system which continues to deteriorate. The allotment of 12 minutes to provide personal care twice a week for a person with Dementia in a nursing home is not sufficient. Not being able to change a diaper for a person in a nursing home because it is “not wet enough” is disgraceful.

Given the burden of care required, although on paper a reduction from 12% to 6% may appear insignificant, it is well known that a person suffering with Dementia responds to consistency, nurturing and routine. The routine and consistency we are able to presently provide with the specific PSW support we have had in place through CCAC will be significantly impacted by such a change.

As the cuts to our support circle continue, either myself or my husband are acutely aware one of us may have to quit our professions in order to follow through with our goal to keep our mother in our home. We are being stretched emotionally, physically, financially and socially. Our employment is being negatively impacted by our roles as caregivers for my mother. We are fortunate to be young enough that we are not overwhelmed by the system, as we are acutely aware of many situations where a spouse is struggling on a daily basis to maintain their husband or wife at home without the ability to advocate for their needs, intimidated by such a cumbersome system.

Last week, for example, I made 23 telephone calls or email exchanges during five work days related to the systems of care for my mother. These contacts occurred during the 72% of time in which I am to perform care taking of my mother, my full time occupation, as well as responsibilities as a wife, daughter, sister, aunt, friend and neighbour.

We are trying, in accordance with her wishes, not to institutionalize my mother to maintain her quality of life. She is still able to enjoy time in the water, puzzles, walking, interacting with family and friends on a diminishing level, music, involvement in home activities and attending community events with constant support and supervision. None of these would happen should she be placed in a nursing home as the deterioration in her level of functioning would be dramatic. In a nursing home setting, we are aware that increased amounts of medication would be given to manage her behaviours. In our home setting, we are able to manage these behaviours using different approaches such as the Montessori Method for Dementia.

Keeping my mother at home reduces many costs for the government. Should my husband or I be forced to cease our employment to provide for her care, we will not be paying taxes during this period of time. Unfortunately the home health care system as administered through the CCAC does not appear to be designed to meet the needs of the Dementia patient attempting to remain at home which is being successfully done in many other countries, particularly in Europe. How appropriate is it that in Canada, a reduction of 50% of care can occur to our most vulnerable elderly? Would it be acceptable if this was happening to your mother or father? A system that cuts caregiving by 50% to only provide 6% of time to maintain a person with end stage Dementia at home is a system that is not meeting the ever increasing needs of my mother.

I am disappointed that a national care strategy for those facing the reality of Dementia has not been discussed during this election campaign. I am requesting the government of Canada meet the needs of caregivers struggling to maintain their loved ones with Dementia at home by guaranteeing secured funding to meet these needs and equalizing accessibility to services in rural areas to bring them to the standards available in urban areas. What is this government doing to protect our most vulnerable elders who have contributed their entire lives to this system, one which now appears to be failing them?

I remain concerned,
Katie Hollister-Lobe

Editor’s note: On September 28th, MPP Todd Smith raised Annie’s case in the Ontario Legislature during question Period. Dr. Hoskins, the Minister responsible, sadly responds with politics.

You can watch the exchange here at 40:39.