Caring for someone with Parkinson Disease
Dear Caregiver,
When caring about someone with Parkinson disease, you might not think of yourself as a hero/ carer/ special person, because you consider what you do as part of life as a partner, son, daughter, friend or relative. This page is to help you with some tips and resources that can make your life as a caregiver easier.
It is natural that you want to do everything possible to assist your loved one who has Parkinson's disease. The challenge is that most of us who aren't natural caregivers need time to learn the best ways to help a spouse or partner deal with a Parkinson disease diagnosis.
7 Ways to Help Your Loved One
1. Be truthful to one another
Some caregiver-patient partners may fall into the trap of having one person become the "nurse" while the other is demoted to helpless patient. That is counterproductive and can be harmful if, for example, the caregiver assumes responsibilities that the person should have.
2. Inform yourself
Parkinson's disease is a neurological movement disorder. If you're a caregiver for someone who has Parkinson's disease, you're probably familiar with some of the disease's symptoms.
But do you know what causes its symptoms, how it progresses, and what treatments can help you manage it? Furthermore, Parkinson's disease does not manifest in the same way in everyone.
Learn everything you can about Parkinson's disease to be the best ally you can be for your loved one. Conduct research on reputable websites, such as the Parkinson's Foundation, or read books about the disease.
Accompany you to medical appointments and ask questions of the doctor. You'll have a better idea of what to expect and how to help if you're well informed.
3. Attend doctor's appointment
Even if your loved one can get himself or herself to appointments at first, accompany him or her to ask questions, take notes, and share your unique perspective on symptoms or other issues that your loved one may not bring up, such as sleeping problems or mood disorders. Make a list of questions to bring with you.
A calendar is recommended for keeping track of doctor and therapy appointments, tracking medications and keeping track of any side effects.
4. Stay on top of insurance
If you've always handled insurance coverage issues, that's great; if not, you might want to familiarise yourself with the terms of your health insurance. You'll need to know if and how much your plan covers prescriptions, therapy sessions, and other unexpected expenses.
5. Keep an eye out
Keep an eye out for changes in symptoms, abilities, and moods. You should also keep careful track of your loved one's changing abilities, especially after medication or therapy changes. A person with Parkinson's disease may be able to do many of the things he or she used to do, such as working, doing housework, going out with you or with friends, and engaging in normal activities. But that can change in subtle ways that the person may not always realize.
6. Be flexible
The symptoms of your loved one may change over time and even from day to day. Be patient and adaptable if, for example, you had plans to do something that have been derailed by a bad day. Give your loved one every opportunity to complete tasks independently before stepping in to assist out of frustration.
Consider the feasibility and timing of removing some tasks from your or your loved one's plate. Talk to each other as well to avoid misunderstandings and resentment over any changes you may propose.
7. Be sure medication are taken timely
This is critical: If your loved one forgets to take his or her medication, he or she may not be functioning optimally.
To avoid making mistakes or nagging your loved one, create a tool that you both agree on, such as a smartphone reminder or a hard-to-miss wall calendar. Being consistent with your medication can improve both of your lives and lifestyles.
7 Things to Make Your Life Easier as Caregiver
When your loved one is diagnosed with Parkinson’s, it can throw your life into a whole set of change. You’ve now become a caregiver — but that’s not a role anyone is instantly ready for.
Learning to care for someone with Parkinson’s takes time, and what you do as a caregiver will change as the disease progresses. While taking care of your loved one is a very high priority, it’s not your only priority. You have to care for yourself too.
Here are 7 ways to start as and stay a good caregiver without losing yourself in the process:
1. Adapt to diagnosis
Accepting the diagnosis and understanding that Parkinson's disease is progressive is an important first step. That means it evolves over time, and your role evolves alongside it.
2. Talk to an experienced caregiver
Connecting with a seasoned caregiver can be beneficial to you, your loved one, and close family members. This person, who you can find through your doctor's office or a support group (see Educate Yourself, below), has gone through similar experiences to the ones you're having.
Experienced caregivers can offer reassurance and tried-and-true strategies for everything from ensuring medications are taken to recommending classes that have been beneficial and suggesting products that make a patient's life easier. A trusted person who is a step or two ahead of you can also demonstrate by example that the condition is manageable and generally progresses slowly.
3. Educate yourself
Learn everything you can about the disease early on so you can be an advocate for your loved one's health care and make informed decisions together.
Joining a support group may not appear to be immediately necessary, especially if your loved one is in the early stages, but it is a good idea because people in a group may be at a later stage than you and can help you navigate changes and challenges.
4. Establish a network
You may believe that handling everything yourself, from doctor's appointments and medication scheduling to taking on more responsibilities at home, is no problem right now. However, things can change quickly.
That is why it is best to establish a support system early on — children, relatives, friends and neighbours, religious and community groups.
Be open about the fact that even if you're not reaching out today, you might be later.
5. Get adult children involved
Caregivers are often hesitant to ask too much of their grown children, not wanting to burden them, especially if they are raising their own families. However, this is detrimental to both you and your children.
Your children should be aware of the nuances of the disease and participate as much as possible in their parents' lives. Adult children can and should provide you, the caregiver, with occasional days off from caregiving.
Depending on the stage of the disease, this may entail taking the parent to the child's home for the day or going on outings such as visiting a museum or attending a sporting event. This provides you with a day to relax or run personal errands, and gives your loved one and his or her grown child time to bond.
6. Make time for fun
Continue to do everything you've always enjoyed as much as you can. Make time for your book club, swimming lessons, or lunch with a friend. Maintaining your identity as a person separate from your role as a caregiver is critical for your mental and physical health.
7. Don't neglect yourself
Many aspects of caring for a loved one are stressful, and if your stress level is rising, you should take a break and seek help for yourself. Maintain regular physical examinations and follow your doctor's advice if you require treatment for any ailments. And don't make the mistake of postponing important tests for the sake of your loved one.
Your mental health is included in this care. Talk to your doctor if you start feeling extremely frustrated; there are probably treatments that can help. Consider respite care or home help if you are unable to enlist the help of family and friends.
Do you need help in finding gift ideas for a loved one with Parkinson disease?
Watch this video for more gift ideas
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If your loved one with Parkinson disease suffer from a lot of tremors (hand shaking), it’s certainly a nightmare for them to close their clothes’ buttons. It’s maybe a good idea to offer them clothes with magnetic buttons that will make their life much easier. If you can’t buy them new clothes with magnetic buttons, you may think of replacing the normal buttons by the magnetic ones.
