Planning for a Loss of Autonomy
In the advanced stages of Parkinson’s disease, managing symptoms with medication progressively becomes less effective and the help of a loved one may no longer be enough. Some people may experience a loss of autonomy.
Not all people with Parkinson’s disease will face a loss of autonomy. It is impossible to know if this will affect you and when it will happen.
The impact of symptoms and the tasks your loved ones have to perform will increase over time. You must therefore discuss your wishes with your loved ones while you have all your physical, intellectual and financial capacities.
Planning accordingly will help you prolong your autonomy at home, ease your caregiver’s role and ensure that your wishes are respected.
A loss of autonomy is the inability to perform certain daily activities such as bathing, eating, getting dressed, etc.
Existing Parkinson’s disease treatments alleviate symptoms without slowing the progression of the disease. Worsening symptoms or the appearance of new symptoms in the advanced stages of the disease can lead to a loss of autonomy. These symptoms include:
In the most advanced stage of the disease, walking becomes impossible. The person suffers a complete loss of autonomy and must use a wheelchair or remain bedridden. Cognitive abilities can also be significantly affected.
These complications could make you unable to take care of yourself or your belongings (incapacity). You must prepare for this moment to make the best decisions for yourself and your loved ones.
If you face a loss of autonomy, there are multiple services to support you and your loved ones during the different steps.
Services Québec created an online information guide called “Loss of Independence” to simplify these steps. You will find information on the services and programs offered to people with a loss of autonomy. These services include:
- Pensions and benefits
- Health and housing assistance programs
- Home help and family support services
- Protection plans
- Housing options
- Transportation support
- Work rehabilitation and transition programs
- Applicable tax rates
Talking about the complications of your disease and a loss of autonomy can be difficult for you and your loved ones, but planning for this moment will help you cope with it more peacefully.
You can maintain a good quality of life with Parkinson’s disease. Continue to focus on what makes you feel good, follow your doctor’s recommendations, do physical activities , keep in touch with your loved ones and make sure you eat a healthy and balanced diet.
You can make your home more accessible and better adapted to your future health condition to extend your autonomy at home. Using daily living aids and adapting certain aspects of your home will help you maintain a better quality of life for longer and a positive outlook on your situation.
Here is a non-exhaustive list of adaptations that could help you. You may also be able to get help from an occupational therapist who will help you with home adaptations.
There are also different financial aid programs to help you carry out this work.
- Be sure to clear the path leading to the house from any obstacles
- Make sure your stairs and balcony are well lit
- Securely attach a handrail along the walkway and on each side of the stairs and make sure it goes down a little lower than the end of the stairs (ideally 30.5 cm (12 in))
- Cover the steps and balcony with a secure and even non-slip finish (self-adhesive strips or paint containing sand, but never rubber sheets) and make sure they are well cleared in winter (snow, ice, etc.)
- Adjust the steps so that they are all the same height and depth
Ideally, an entrance without steps is preferable. If this is not the case, more extensive renovation work should be considered, for example:
- Install an access ramp with a slope no greater than 5% or a lifting platform
- Provide a minimum 1.5 m (60 in) diameter area in front of the entrance door and the beginning of the ramp to allow a wheelchair to swivel
- Widen the entrance door to allow wheelchair access
- All doors and corridors should be at least 90 cm (36 in) wide to allow wheelchair access
Many changes can be made at home to make daily life more pleasant and safe. They can be made both with respect to the layout of your home and to your daily routine.
To find out how to improve your daily life in the kitchen, bedroom and living room, download Parkinson Québec’s interior layout guide.
You can stay home if your physical and social environments are adapted to your needs.
Among other things, you have to take into account your level of autonomy during your daily activities, whether or not you live alone, the presence of caregivers to help you, physical and mental limitations that can affect your safety and your ability to live at home.
Many home or activity adaptations can facilitate life at home. Financial aid can also help you during this period.
A health care professional from your local CLSC can perform a thorough assessment of your needs and recommend the appropriate steps.
The complexity of care and tasks required increases in the later stages of Parkinson’s disease. Accommodation can then become a beneficial option for the person living with the disease and their caregiver.
You and your loved one must prepare for this option before the loss of autonomy becomes too serious. However, making this decision is not easy.
Here are some questions that can help you decide:
- Is it a good idea to delay accommodation?
- Should we wait for an event that will put us both in a stressful situation?
- Am I able to meet all current and future needs?
- Can I still devote as much time and energy to my loved one without jeopardizing my own health?
- Does the care needed require skills that I do not have?
Consult with health care professionals and your social worker. They can help you in your reflection process.
There are several types of residential accommodations. You will have to choose the one that best meets your needs, level of autonomy, type of care and hours required and your income. Your local CLSC can provide you with information on the type of accommodation available in your area.
Other matters concerning your life will also have to be discussed with your loved ones:
- Make sure that your will is up to date
- Discuss how your finances will be managed with your loved ones
- Prepare the necessary authorizations. Different sample mandates are available on the Ministère de la justice du Québec website
- Check with your employer to find out if you have disability insurance and the details of your coverage. If necessary, consider looking into private disability insurance. If you already have one, check the details of your coverage
- Let your family know what quality of life means to you
- Check if you are eligible for early retirement if necessary
- Decide on your mode of transportation for when you will no longer be able to drive
- Plan your funeral
Express your wishes for future care while you are still capable in anticipation of being unable consent to care. There are many ways to do this:
- Express your “Advance Medical Directives” using the available form on the Régie de l’assurance maladie du Québec website or or by a notarial deed that includes the terms of the form. Advance medical directives indicate whether you accept or refuse certain treatments, including cardiopulmonary resuscitation, ventilatory support, and forced or artificial feeding and hydration.
- Verbally express your wishes for care to your loved ones
- Write down your care wishes on a dated and signed piece of paper
- Make a video recording of your wishes
- Express your wishes to your doctor for inclusion of a care form that will be placed in your medical record
- Write a living will. This is a document in which you express your wishes for care in case of incapacity
- This will allow you to choose one or more people who can make decisions on your behalf if you become incapable. You can download the protection mandate form on the Quebec Public Curator website.
Medical aid in dying consists of physicians administering medication or substances to a person at the end of their life, at the request of the patient, to relieve their suffering through death.
The Act sets very restrictive conditions that a person must meet to receive medical aid in dying, regardless of where they receive care.
To record their advance medical directives, the person must, in a free and informed manner, formulate the request to consent or not to consent to certain end-of-life care themselves using the form provided by the minister.
The application can also be made in case you become incapable, for example if you develop dementia, which is not uncommon in the later stages of Parkinson’s disease.
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