Any diagnosis of a degenerative neurological disease is heart breaking, and
Parkinson’s is no exception. When your loved one is facing the long term facts of Parkinson’s, it falls to you as the primary care provider to make them as
comfortable as possible. However, it is necessary to remember that Parkinson’s patients can live fairly normal lives for years after diagnosis. Your first concern after the diagnosis should be finding ways to maximize the patient’s independence for as long as possible. Sit down with your loved one and their doctor to discuss treatments, projected decline and a long-term treatment plan.

Setting Up a Safe Home Environment

In the early stages of Parkinson’s, there is no need to take any drastic action, but as it progresses, patients will experience increasing physical weakness. They can develop tremors, loss of balance, difficulty speaking, and many other complications from the disease. In order to create a safe home environment, there may be changes required in the home. Not all homes can be safely transformed to accommodate someone with Parkinson’s. Evaluate their current living situation to ensure that the needed changes are possible within the space allowed.

Patients with Parkinson’s will need spacious rooms all on a single level.

• Remove as much clutter as possible to maximize space.
• Eventually, remove unnecessary furniture and other clutter that may become hazardous as your loved one will need to use a walker or wheelchair to get around the house.

• You will need to install hand rails throughout the home.
• Make handicap accessible modifications to the bathroom.
• Have ramps installed at each entryway.
• There are also changes that you can make to reduce frustration. It is a good idea to keep all of the necessary medical supplies in one convenient location, so that you can keep things under control and easily accessible.
• These changes should be completed before they become a necessity. As soon as your loved one is diagnosed with Parkinson’s, it is essential to begin drawing up plans to prepare their home situation to accommodate their changing needs. Do not forget to include environmental improvements, as well. Since your loved one will spend much of their time in one or two rooms, it is essential that they be comfortable.
• Decorate with warm colors and display meaningful items like pictures and other items that generate happy memories. House plants are another excellent way to make the space lively and give it a feeling of comfort and peace.

The best thing you can do for your loved one is become informed. Parkinson’s has many different symptoms and expresses differently in everyone.

Take the time to learn about all the potential effects of the disease, and what you can do to make life easier for the patient.

Some common examples include:

• Moving furniture to create easy handholds throughout the home can encourage them to do as much as they can for themselves for as long as they can.
• Cooking healthy, well-balanced meals that are easy for Parkinson’s patients to eat is essential. Parkinson’s patients may have difficulty cutting up food, chewing or swallowing. It is crucial to provide them with foods that are not tough or dry, so they can easily swallow and digest culinary offerings.
• Participating in Physical Therapy so that you can help them practice at home is a terrific way to keep them active. Some basic exercise techniques you can try include games of catch, or balloon volleyball. The action of throwing and catching the ball or batting the balloon around can help them maintain control of bodily functions for as long as possible.

• Learning about techniques for handling tremors and freezing. Freezing is when the muscles in the body freeze for a moment, often resulting in falls. One technique for breaking out of a freeze is to focus on a visual target and move toward that target. Help your loved one practice the theory, so that it becomes instinctive and the danger of a fall is reduced.

The more involved you are with the treatment process the more helpful you can be during your at home hours where you are the primary care provider.

How do you care for an elderly, disabled or sick parent, spouse or sibling and still have time for yourself as well?

Primary care providers can be so caught up with trying to take care of their loved one that they become depressed, withdrawn, stressed, and unhealthy. This will ultimately harm both you and your loved ones.

Make sure to take proper care of yourself. Get as much rest as possible, because if you are not rested, you will not be able to take proper care of your family member.

Make time to enjoy social activities and spend time with friends and family in a relaxed environment, so that you are refreshed.

Be prepared for the changes that can happen in your family dynamic. Your children may act out in response to the time you spend caring for your ailing relative.

However, it is necessary to make time for you, to reduce the burdens you experience as a primary care giver.

Tips and Support Information to Help You Find a Balance

Balancing the needs of the patient against your own and the rest of your family can be difficult, but do not get trapped in a mentality that says you must do everything yourself. There are a variety of programs out there to help you provide the needed care without driving yourself into the ground. Talk with the doctor in charge of the overall care plan and discuss needed levels of care.

When the patient can no longer reliably perform daily tasks, your responsibilities increase dramatically. Many people have the beleaguered family member move in, so they are better able to help. This can put additional strain on a family, but it is often the best solution for the ailing patient.

Below are some things you can implement to help reduce the stress on your family:

• Contract Homemaker/Companion services for your relative to provide companionship during the day and take them to social activities when you are not able to do so. A homemaker can perform tasks like laundry, fixing a mid-day meal and socializing with your loved one during the hours when you must be away from home.
• Schedule family time, and stick to it. There are many changes that come with providing round the clock care to a loved one. These changes are necessary, but they can put incredible strain on a family, particularly children. Make sure to take time out just for family time, so that no one feels ignored.
• Bring in a Home Health Aide to help with tasks like bathing, dressing and medication management. If you work full time, or even part time, outside of the home, providing full time care is not a possibility. Contract a Home Health Aide to reduce the burden and provide help with daily tasks when you are not available.
• Obtain Private Duty Nursing when needed. Eventually, it is likely that your loved one will require constant access to health care services. Private Duty Nursing enables you to keep the patient at home, while still offering the health care they need.

These services are offered to help you balance your needs, the needs of your family and the needs of the patient. They are particularly helpful when you must go to work each day. It may not be safe for the patient to stay at home without observation. These services give you the needed peace of mind to leave the home secure in the knowledge that your loved one is in capable hands. They also allow you to schedule much needed personal time for errands and relaxation.