As any caregiver knows, Parkinson’s disease is both chronic and progressive. It persists over a long period of time and the symptoms worsen. Often the disease has been present for many years before active care even is necessary. This fact alone can bring many challenges along the way. A loved one secretly may have adapted their life to this condition, hiding any symptoms.
When the time for care arises, a caregiver first has to take inventory of what is working and what isn’t. A caregiver may have believed their loved one was perfectly fine, and come to realize the truth is far from that. A caregiver for someone with Parkinson’s must be very organized, informed, patient and able to modify daily life to any situation that may arise.
In the latter stages, it’s important for a caregiver to take a step back and not become totally entrenched in the caregiving and uninvolved in their own life. Since Parkinson’s can persist for many years, by the time the latter stage arrives, a seasoned caregiver will be an “old pro.”
Managing Symptoms
There is no “across-the-board” standard for how Parkinson’s affects any given patient. Just as everyone is different, every person’s reaction will be unique. The most common symptoms are tremors, muscle stiffness and slow movement. These symptoms intensify as the disease progresses and alone can cause problems in daily living activities. A caregiver must be constantly evaluating what condition their loved one is in. Parkinson’s is unpredictable and a loved one may be resistant to take assistance for as long as they can hold out. This makes caregiving more complicated. However, it is their caregiver’s responsibility to help keep them, above all, safe in any environment. One important tip is to initially ask a loved one what they need, and not assume. During the latter stages, a caregiver should be familiar enough to anticipate and prepare for a loved one’s needs.
In the latter stage of the disease, movement itself becomes nearly impossible. A simple task as dressing could take a person with Parkinson’s disease literally all day to accomplish. Walking is very slow, if at all. A lack of balance causes frequent falls and automatic movements, like the swinging of arms when walking, disappear. A caregiver should try to not be frustrated, but instead, be patient, and respond with love and humor.
As the disease progresses, communication difficulties and heightened anxiety become more prevalent. In the early stages, a loved one is able to hide symptoms easily, but as the tremors and stiffness worsen, a joke about getting older may be a good cover-up for the fact that daily duties are becoming harder and harder to handle.
What can a caregiver do? Get help!
With a loved one in the advanced stages of Parkinson’s disease, it is nearly impossible to handle it alone. Whether in-home care or out-of-home, help is necessary. Whether in-home or a permanent move, options are available for caregivers to find some relief. There are many kinds of caregivers, from live-in spouses to long-distance children. No matter the caregiver, a support system is mandatory!
You, the Caregiver
The National Parkinson Foundation’s publication “Caring and Coping” divides caregivers into these categories:
- Stage One: The Expectant Caregiver
- Stage Two: The Freshman Caregiver
- Stage Three: The Entrenched Caregiver
- Stage Four: The Pragmatic Caregiver
The first two stages are filled with learning. Once a caregiver is entrenched, they are knowledgeable, prepared and “in the trenches.” A caregiver in Stage Three “gets it.” The final stage, the pragmatic caregiver, has been in the thick of it for more than five years and through it all. They know what works and what doesn’t. They see Parkinson’s disease as what is was and what it has become. They laugh at things other family members may find sensitive and painful. They have become practical, realistic and are also experiencing much personal growth.
In the latter stages of Parkinson’s, it may be hard for a caregiver to find happiness in the simple moments. The major joy-killers are the everyday tasks like bathing, dressing and toileting. It’s hard to remember who a loved one was as a person pre-advanced Parkinson’s. Sometimes taking a minute to tell jokes, share stories and enjoy a fun activity will bring back the feelings of father/son, mother/daughter or husband/wife, whatever the situation.
The National Parkinson’s Foundation tells caregivers to “hang onto your sense of self.” Regular activities and routines are also important to keep, as much as possible. Emotional and physical exhaustion will only lead to more exhaustion. Finally, a caregiver needs to see themselves beyond the car giving role. It’s essential to remember individual life goals, independent of the caregiving demands. A caregiver must take time to maintain social contacts and actually schedule respite time.
Paperwork
Paperwork can be overwhelming for the average person. For a caregiver of someone with Parkinson’s, it can be frustrating and time consuming. It’s easy to lose sight of the goal and just rush to complete the tasks. From applying for benefits to doctor’s visits and financial records, it’s a very big task to take on for any caregiver.
The National Parkinson Foundation suggests caregivers take a look at the situation as a whole, using a “big picture” approach. Seeing options as working together enables caregivers to make rational, educated decisions. This frame of mind is especially important when deciding legal, financial and medical decisions for a loved one. Take a step back, a deep breath and proceed with an open mind. The first part of the “big picture” is honesty. Don’t falsify any information on any documents. It will lead to more headaches and hassle later on by causing others to question your credibility. You want a loved one to receive the benefits he is entitled to by law.
The Foundation explains that the second part of this is consistency. When helping a loved one apply for different benefits and medical support, a caregiver must keep in mind that many programs will require the exact same documentation. The main question will be: What is a loved one’s health status at any given point? When preparing legal documents, this may be measured against different definitions, but it is important to be truthful and consistent. Use the big-picture approach to see how a loved one’s benefits will all fit together and what gaps may need to be filled.
Day-to-Day
The unknowns of the day-to-day caregiving are probably the most stressful for caregivers. Having systems in place of organization and support will make these situations seem less overwhelming.
Adapting the home environment is one of the major tasks any caregiver must take on. Whether at a senior residence or the person’s personal home, small changes can be made to avoid big disasters. Living areas, kitchens and bathrooms can be adapted to help the decreasing cognitive and physical abilities of a loved one with Parkinson’s. Make sure there are open pathways around the home and remove obstacles and unsteady rugs, decorations, etc. that may cause an accident. Put grab bars in bathrooms and even along hallways. Designate hot or cold on faucets with labels and colored tape. Leave items at chest or waist height so reaching won’t cause falls.
In addition to changing the environment, a caregiver must be able to help with adjustments on daily tasks such as dressing, teeth brushing, showering, etc. Confusion and unsteadiness make these seemingly standard tasks challenging. Help a loved one understand what is going on and proceed slowly, with care and compassion.
A very common symptom of Parkinson’s is “freezing.” Help a loved one move around easier by pretending they are walking over something, or rock very slowly back and forth to get moving again. Exercise, to any degree possible, is very important to a loved one’s health and well-being. Sitting around will only make their mind-set diminish, as well as the physical aspects.
Encourage activity, communication and involvement socially as much as possible. As the disease progresses, these things will become more and more challenging to do. It’s important a caregiver encourage it when a loved one still is able to be involved.
For caregiving in the latter stages of Parkinson’s disease, challenges will arise. A caregiver should plan ahead and anticipate problems. Have paperwork done and organized. Separate tasks into smaller, manageable parts to encourage independence. The trenches won’t seem so deep then!
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