With over 10 million people affected by Parkinson’s Disease worldwide, there are tons of resources for how to care for patients living with the illness.
Parkinson’s Disease is a serious, complex ailment that brings about more complications as it progresses. It is a debilitating disease that affects around 127,000 people in UK alone. It can lead to mobility issues, rigidity, and resting tremors.
However, its effects are not just felt by the patient. It causes collateral impact by the people surrounding the diagnosed person. The disease is also felt by friends and family of the sick person.
If you have a family member who has been affected by this illness, you may choose to care for him or her at home. This, of course, coupled with the doctor’s directives may better benefit your family member.
By providing care and support for a person living with Parkinson’s Disease, you will be allowing your loved one to still live a life that he or she is familiar with. It can be very rewarding, but it also presents a lot of challenges as the illness progresses.
Your loved one’s symptoms may change, from needing only emotional support to needing physical assistance. Your responsibilities as a carer will demand more overtime, and you need to be adequately prepared for future responsibilities.
Here are a few things you should keep in mind before undertaking the role as your loved one’s carer:
- You should understand the disease thoroughly
A mistake that a lot of family members make is underestimating the disease. You may mistake this as someone just needing company and minimal assistance, but the role demands more than that.
Parkinson’s disease is a debilitating, progressive illness in which your loved one will need your constant care.
Before committing yourself to it, be sure that you know what to expect. Read up on the disease, coordinate with the doctors for appropriate measures to be taken, and evaluate if you’re ready for the job.
It can get overwhelming, so it’s best if you know the cards you’re dealt.
2. Caring for someone with Parkinson’s Disease is a physical job
Since the illness affects your loved one’s motor skills, they will need you to help them move around.
If Parkinson’s Disease has progressed to the point where your loved one will need assistance, mobility equipment are available. This can help them move around and go from point A to point B.
3. You need to communicate well with your loved one
Maintaining a good relationship with a family member suffering from the disease is vital. The illness can cause mental deterioration in its final stage, which can eventually lead to speech problems.
Cognition and speaking problems are common, and they may tend to be incoherent at times.
Be sure to speak slowly and clearly. If all else fails, be on the lookout for context clues. You can figure out what they mean through their expression and body language.
It is important that you don’t let your family member feel like a nuisance, or that he or she is abandoned.
4. Be ready to make some changes in your house
It is advisable that you reevaluate your living situation. Since the disease can cause someone to have difficulty with walking and to encounter balance problems, you should clear the floor.
This is to avoid any untoward accidents caused by slipping or falling. Keep the area clean from any hazards that may put your loved one at risk.
You should also make sure that the place they stay in has minimal background noise. This disease affects mental processes as well, and someone suffering from it will most likely have difficulty processing a lot of information.
Noise and sounds may be too overwhelming for them, causing them to be “frozen”. To avoid triggering this, keep the noise down.
5. Even though you’re there to help, let them have their own independence
It’s important to not be too overbearing with your role. Your loved one needs a semblance of independence and the sense that they can still make their own decisions.
This can come in the form of choosing their own clothes, meals, and even what they want to do for the day.
You shouldn’t chain them down to a system, and let them still have their own freedom.
6. Encourage their social life
A person suffering from Parkinson’s Disease’s life shouldn’t be tied down to their caretaker.
You should encourage them to take part in social activities, with support groups being the most helpful. By them mingling with people who are going through the same thing, they may be able to find a connection.
Support groups usually have activities for them, and they help you as the carer with advice. Here, you’ll be able to learn more about how to take care of your loved one better.
7. Serve as a source of encouragement
Since you’ll probably spend the most time with the person, it’s recommended that you share a positive outlook with them.
Simple things like being positive and patient while they do mundane tasks like eating or dressing can greatly affect their confidence.
Withhold the desire to jump in and help them with every single task just because you can do it faster. Instead, encourage them to exercise their independence.
8. Look after yourself, too!
It goes without saying that in order to care for someone, you should take care of yourself too.
Keep your mental and physical well-being in check. This responsibility is taxing in every aspect, and you don’t want to suffer from burnout.
It’s best if you take regular breaks and time-outs from the duty, as it can be very difficult to sustain. There are a lot of things that can cause stress on the job, and it’s recommended that you address these early on.
It’s difficult to care for a loved one with Parkinson’s Disease, but it is a labour of love. As a family member, this job is a non-paying one that is done from the heart.
Yes, it can get tiring and, some days, you may want to quit. However, you should remember that this is family and that they’ll be eternally grateful for your help.
It will take a lot of trial and error before you find the right rhythm, but it will all be worth it.