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Helping someone with Parkinson’s disease

If you have an emotional connection to someone with Parkinson’s disease and you help them on an unpaid basis, you are a caregiver. This additional role in your relationship is rewarding, but it can also be exhausting and affect your health. You and your loved one must plan for this new relationship.

Spending your time and energy to help your loved one on a regular basis may seem natural given your emotional bond. However, it is a new role that you agreed to take on. It will redefine certain aspects of your emotional relationship, but it must not compromise your identity or your health. You have to make certain choices to take care of yourself while taking care of them.

Whether the spouse, son, sister, friend, parent or acquaintance of someone with Parkinson’s disease, you are a caregiver if you voluntarily help them on an unpaid basis.

Your support can come in multiple forms: emotional, functional (ex. managing grocery shopping and meals, medication, appointments with healthcare professionals), or directly related to care. Your support is complementary to that offered by the healthcare system and community organizations. Take advantage of the help you can get from the professionals and members of this system rather than trying to take over their roles.

Your support cannot be measured in minutes, proximity or effort, but by the help you provide this person with whom you have a meaningful connection.

“There are only four kinds of people in the world: those who have been caregivers, those who are caregivers, those who will be caregivers and those who will need caregivers.” – Rosalynn Carter, former First Lady of the United States

You are unique as a caregiver, and the way you perform your role will change as the disease progresses. Your loved one can remain involved in marital and family life as well as in the community. Taking their abilities and limitations into account helps you continually adjust roles and search for solutions to maintain your quality of life and theirs.

Your support is voluntary, meaning you can reduce or put an end to the time and energy you give to this person if you want to without  changing your emotional relationship. This can be a delicate subject, which is why it is best to talk about it with your loved one as soon as possible.

Several organizations provide assistance specifically for caregivers.

Most of the time, Parkinson’s disease progresses slowly and the help your loved one needs increases with time.

Inform yourself

Learn everything you can about Parkinson’s disease symptoms and progression. The more you know, the better you can determine what is best for your loved one, how to work with them and establish boundaries.

Understanding the disease gives you a head start to adapt to changes and foresee developments. You will be able to follow the stages and progression of the disease with more confidence.

Discuss openly with your loved one

Together, you can develop strategies to implement them according to the stages of the disease. This will help you maintain the health and quality of life of you and your loved one. Having a game plan can help you maintain your energy to enjoy the good moments with your loved one.

Remember that even though you are there to help them, your loved one wants to maintain their independence and find ways to meet certain needs on their own.

Keep a positive attitude

Symptoms of Parkinson’s disease are unpredictable and different for everyone. The physical and mental state of your loved one can change greatly from one day to another depending on medication effectiveness. Some activities, events or travel plans will likely be cancelled or postponed, but your attitude can have a significant impact on how you feel. Focus on what the person with the disease is capable of doing rather than what they cannot do.

Enjoy life and create good memories. The ones you were used to may be less frequent, but you have the opportunity to create new and different enjoyable moments.

Use your experience 

You have strengths and successfully dealt with other life challenges in the past. You also have gained experience with the disease that you can look back on during changes or difficult times. Use these strengths and experiences to enrich your journey with Parkinson’s and make it easier.

You gradually become a caregiver and, without realizing it, stress and fatigue can increase and lead to exhaustion.

Balance

Maintain a balance between the time you dedicate to your loved one and yourself.

Your involvement in this new caregiving role and your potential reluctance to ask for help puts you at considerable risk.

Try to alternate between activity and rest periods and only do the essentials. This will help your daily organization be flexible and adapted to your strengths and needs. Rethinking the way you do things will help you take advantage of the energy you save and reinvest it in activities that make you happy.

New perspectives

Some situations may seem daunting or overwhelming and our perception can affect our ability to act and think constructively. You can always readjust your level of commitment to caregiving while making sure your loved one is well taken care of.

Healthy life habits 

Take care of your health to effectively fulfill your caregiving role. Eat a balanced diet, exercise, relax and do not neglect your own medical check-ups.

During all your meals and snacks, drink enough water and eat various nutritious and energizing foods. This will provide you with the energy you need for your daily activities and leisure time. By dividing your meals throughout the day, you will have the chance to eat more fruit, vegetables and grains to improve your health and bowel movements.

Your loved one can have difficulty swallowing but keep in mind that meals are also good opportunities for social interaction. Enjoy them, whether with your loved one, family or friends.

Physical and mental exercises can also help maintain your health and independence throughout the years. Exercising regularly can improve your mood and help you step away from your home and daily caregiving duties. Participating in activities outside of your home can help you meet people who, like you, are looking to stay fit and have fun. The more physically and mentally active you are, the more freedom you will have to move and do as you please.

Simple pleasures

 There are many ways of relieving stress and fatigue. For example, you can easily integrate breathing and mindfulness exercises into your daily routine. You can regain your energy during these moments, which can make a big difference and help you stay balanced. Set time aside for rest and activities that help you unwind. 

Do not feel guilty about taking moments for yourself. They are a long-term investment for your health and that of your loved one.

Do not socially isolate yourself 

Social isolation is one of the factors that contributes the most to the progression of the disease of your loved one and the deterioration of your mental health. Strengthening your relationships and forming new friendships can help you take a step back from your role and better set your boundaries. Have at least one person who you trust and can talk to.

Continue regularly seeing your friends, either at home or elsewhere. Socializing is necessary even if your state, or that of your loved one, causes you to isolate yourself.

You may also benefit from the support of other caregivers. You are not alone and you can learn from their experiences. There are likely support groups specifically for caregivers in your area.

Support is a central and protective element that helps overcome daily challenges. Start identifying the people around you and the healthcare system or community resources that can help you.

Ideally, you should start building your support system as soon as you learn about the diagnosis. You may not need help immediately but finding resources will be easier now than the day you become overwhelmed.

If you feel like you can no longer cope with the exhaustion, take a break and let others take care of your loved one. Not everything will be done according to your requirements and methods, but you must learn to let go of certain things so that your health does not suffer.

Asking for help may seem difficult at first but remember that it is neither a sign of weakness nor abandonment of your loved one.

Parkinson Québec’s toll-free, bilingual and confidential information and referral line  (1 800 720-1307) is open Monday to Friday, from 8:30 am to 4:30 pm.

L’Appui also offers an information service for caregivers, 7 days a week, from 8:00 am to 8:00 pm. You can reach them by phone at 1 855 852-7784 or by email at info-aidant@lappui.org. A resource directory for caregivers is also available on their website.

Ask those around you for help

You may feel like no one can help you or give you a break, and that those around you are not involved enough. This is often because they do not know your actual needs and are not aware of the burden that comes with all the care and assistance you provide to your loved one. Those around you cannot guess your needs, so tell them. You may be surprised by their availability and generosity.

Involve family and friends by discussing care options if you are not available or in the case of an emergency.

Create a list of professionals and caregivers in your support system

Having a complete picture of the people and resources around you can promote your sense of security. If you need help, you will know where to turn.

Be proactive and identify the important people you can turn to for help based on your needs. These people are an essential part of a good care team. You can build your team using the eco-map.  

Open a file at the CLSC

You can contact professionals through your local CLSC. Open a file for your loved one as early as possible and ask to meet with a social worker. They will evaluate the needs of you and your loved one and recommend services based on your situation. There are many services available and they can vary from one area to the next. Use these services and do not wait until you need them to take the necessary steps since wait times can be long.

Parkinson’s imposes role changes and new levels of dependency in couples. These adaptations are one of the biggest challenges faced by many couples. Preserving each person’s health and autonomy, maintaining satisfying relationships and gradually adjusting roles are key to facilitating the changes associated with Parkinson’s disease.

Accepting that Parkinson’s will change your life as a couple can be difficult. You will experience both the role of care giver and receiver as the disease progresses and different health issues appear. Learn to communicate openly about your needs and emotions with your loved one to develop strategies that address daily challenges of the disease together. This will also help you protect your health and relationship.

Communicating and being in a relationship also means having intimacy and a fulfilling sex life . Sharing these moments increases your sense of closeness and pleasure. Talking about it with your partner can help you adjust to inevitable changes associated to aging and Parkinson’s disease.

You can maintain a healthy relationship with your partner.

  • Communicate openly
  • Give yourself time to adjust and build on each other’s strengths
  • Continue doing activities that you enjoy together or adapt them whenever possible
  • Accept that the other is not going through the same things as you
  • Each take time for yourselves
  • Contact a professional for help whenever necessary

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