Resources Physician Rehabilitation centers CLSC Info-santé Day care center Respite service Workshops for natural caregivers Friendly home visitors Meals-on-wheels program Housekeeping services Transportation
Network resources offer both you and your caregiver many advantages. Each individual, whether patient or caregiver, requires different services.
Just as ALS presents differently from person to person, caregivers react differently to the stress they experience in performing their roles. This underscores the importance of ensuring that services are adapted to the individual needs, if they are to be useful and effective.
The services described below are delivered by the CLSCs, certain institutions in the health-care network (such as rehabilitation centers), and community organizations.
ALS is a neurological disease. Your family physician will refer you to a specialist: a neurologist. He or she will regularly assess your condition, prescribe appropriate medication, and answer your questions. Neurologists practice in hospitals, rehabilitation centers, or private offices.
Rehabilitation centers offer people living with ALS a personalized, interdisciplinary approach complementing what is provided by the various network partners. The goal is to help the individual and close relations to adapt to the successive changes in their personal, family, and social lives.
The team is multidisciplinary, including professionals such as special educators, physicians, nurses, physiotherapists, occupational therapists, speech-language pathologists, social workers, nutritionists, and psychologists.
These centers offer specialized and personalized services for adjustment and functional/psychosocial rehabilitation. Many centers have programs specifically for people living with ALS.
Rehabilitation centers also assess the need for mobility aids, such as canes, walkers, manual wheelchairs, and electric wheelchairs.
Services related to communication aids, such as computers and electronic keyboards, are also provided to people who have difficulty speaking.
Although CLSCs offer services for people living with ALS, these services may vary from one to the next. You can call yourself or have a network caseworker call the CLSC in your area for you.
Someone will then be designated to come to your home to assess your needs with you and guide you to the appropriate resources. The CLSC will inform you about the various services available to you.
The home-support team is multidisciplinary and comprised of professionals (such as physicians, nurses, physiotherapists, occupational therapists, social workers, nutritionists, and inhalation therapists). These practitioners deliver their services in the home for people with mobility impairments.
- Physician
Only certain CLSCs offer home medical follow-up delivered by a general practitioner. - Nurse
The nurse works in partnership with the physician by monitoring the person's general health (vital signs, informing about taking medication, controlling blood pressure).
He or she also takes blood and urine samples as well as providing wound care and dressings, if needed.
When the patient is in a more advanced phase, the nurse is involved in care for colostomy, gastrostomy, tracheotomy, and enteral feeding.
Teaching care techniques to the patient and close relations is also important. In fact, the nurse delegates certain tasks to family members, depending on their abilities. - Physiotherapist
The physiotherapist assesses physical capacities such as muscular strength, gait, balance, and transfers (getting out of a chair or bed).
An exercise program adapted to the progression of the disease is taught to stimulate muscular activity. Family members can take part.
The therapist may propose the use of mobility aids such as a cane or walker, if needed.
Many people living with ALS complain occasionally about pain related to the disease but of varying origin (e.g. tendonitis, capsulitis, and osteoarthritis). The physiotherapist aims at reducing the pain. - Occupational Therapist
The occupational therapist assesses activities of daily living, such as dressing, washing, eating, bathroom usage, cooking, and housekeeping.
He or she proposes new ways of doing things, equipment, and compensatory technical aids to help maintain independence (clothing, adapted utensils, etc.).
The therapist also teaches family members how to safely move the patient if mobility is impaired. He or she also assesses the home's physical environment and proposes certain modifications.
They can range from simple adjustments, such as installing grab bars in the bathrooms or a bathing bench to facilitate hygiene, to major modifications such as a platform lift, elevator, or complete transformation of a bathroom. A funding and grant program is available (home adaptation program).
The CLSC occupational therapist is mandated to carry out the steps in requesting three- and four-wheel power chairs. - Social Worker
The social worker provides support to the person living with ALS and close relations.
He or she helps resolve relational problems. Family dynamics change as the disease progresses, which means that family members must adjust to their new roles.
As time goes on, the person living with ALS will gradually lose independence and have to face dealing with physical and functional loss. The social worker can help with this.
He or she also fills out placement applications. - Nutritionist
The nutritionist offers dietary advice.
Dysphagia (difficulty swallowing) is a frequent problem among people living with ALS. The nutritionist can provide advice about foods that are easier to swallow and products for thickening liquids.
In more advanced cases of dysphagia, he or she can teach enteral feeding techniques and provide in-home follow-up. - Respiratory Therapist
The respiratory therapist assesses and promotes maintenance of respiratory function.
In the Montréal area, home follow-up is normally ensured by Maisonneuve-Rosemont Hospital, whereas the CLSCs do elsewhere in Quebec. - Visiting Homemaker and Social-Services Assistant
The visiting homemaker and social-services assistant is responsible for personal hygiene while promoting independence.
He or she performs the following tasks depending on the needs assessment : housekeeping, meal preparation, laundry, and help with dressing, hygiene, and eating.
He or she also watches people whose safety could be compromised if they were left alone. This allows the caregiver to run errands or take part in an activity with peace of mind. - Equipment Loans
Equipment loans vary from one CLSC to the next.
Info-santé is a call-in advice service provided by a staff of nurses 24 hours a day.
The nurse who takes your call will answer your questions, provide advice, and point you in the right direction.
In the Montreal region, you can call Info-Santé directly at: 514-521-2100 Everywhere else, you must call your local CLSC to get the service.
Day care centers are generally located in placement centers, rehabilitation centers, hospitals, mental-health clinics, and private centers. They provide a number of physical, recreational, and social services and activities.
These programs are given during the day and are normally offered once or twice a week. Many centers also provide lunch as well as transportation to and from home.
Referral by a network practitioner is required.
This service allows caregivers to have a little free time away from their daily responsibilities. This is important because many caregivers experience stress that significantly affects their ability to provide quality care.
Respite programs allow caregivers to recharge their batteries to continue to assist the person living with ALS. Respite services are varied: CLSCs, private agencies, and sometimes volunteers offer services to watch over ALS patients in the home during the day on a weekly basis.
Temporary placement in a placement center is another alternative. A CLSC social worker will take the steps necessary to obtain the service. The length of stay can vary from one to four weeks at a stretch. Each person is eligible for two respite periods per year (maximum of eight weeks).
Temporary placement programs in placement centers are also very useful when the caregivers must be hospitalized or wish to take a vacation.
WORKSHOPS FOR NATURAL CAREGIVERS
The family of people living with ALS provide most of the home care. Their need for help increases as the disease progresses.
A number of institutions in the health-care network, including CLSCs, offer workshops for natural caregivers. These workshops—which provide information, advice, and support—aim at preventing caregiver exhaustion. The workshops enable caregivers to share their experiences with their peers in similar situations.
The meetings are weekly and spread over a number of weeks.
Volunteers from community organizations lend an attentive ear and support through home visits and telephone conversations. This service aims at relieving solitude and isolation.
MEALS-ON-WHEELS PROGRAM
(POPOTE-ROULANTE)
Meals-on-wheels deliver hot, balanced lunches directly to the home to people who are starting to have trouble running their errands and making meals. These low-cost meals are prepared and delivered by volunteers working with community organizations.
Quebec offers housekeeping services to people 65 or older and to individuals with impaired independence regardless of age.
These services are provided by the social economy enterprises accredited by the provincial government. The rates charged by these not-for-profit organizations vary according to the individual's income.
Light housekeeping is offered, such as dusting and cleaning bedrooms, kitchen, bathroom, and so on.
Volunteers offer transportation services in private cars or wheelchair-accessible vans, especially for medical and social reasons. The cost of such services is generally quite low.
Large cities can offer paratransit for the disabled who are unable to take mass transit.
