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:
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.
Exterior adaptations
Ideally, an entrance without steps is preferable. If this is not the case, more extensive renovation work should be considered, for example:
Interior adaptations
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:
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:
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:
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.
