It is said that the value of your friends is known, when you are in some trouble. Similarly the value of your family members is known, when you have some disease. In most of the serious diseases, it’s not just the patient who suffers, but the family members also suffer a lot. This blog is targeted at the problems faced the family members of the patients suffering from diseases like Parkinson’s disease.
The people who take care of a PD patient is called a “Caregiver”. If you are a caregiver to anyone, we would like to start this article with a big salute to you.
Parkinson’s is a progressive disorder of the nervous system that affects body movements of the affected person. The main reason behind the Parkinson’s is the decrease in the dopamine level inside our brain. This lower level of dopamine causes abnormal activity in the brain.
First documented in 1817 by physician James Parkinson, (On whom, this disease is named), Parkinson’s is the second most common neurodegenerative disease after Alzheimer’s disease. As per an estimate, India has 1 Million people suffering from Parkinson’s, while worldwide this figure is about 10 million.
‘Caregiving’ is defined as everything we do to assist a friend or relative due to that person’s illness or disability, as well as what we do for our own health.
As mentioned above, Parkinson’s is a progressive disorder, meaning it changes over time. With passage of time, the condition may become from bad to worse. The patient undergoes lot of change. Physically, there may not be any visible change, but the patient suffers a lot, both mentally and emotionally.
So, as a caretaker, it may become more and more difficult to define your role. As you go along, your involvement and your responsibilities undergo lot of change. It may start with helping a loved one with daily activities to managing medications and/or making financial decisions. In such a condition, the caregiver is left struggling with how to deal with this new role in life: taking care of someone else while taking care of themselves.
While taking care of a PD patient, a caretaker may have to change their diaper, clean up another spill, or wash another naked body, or help in toilet also. And you are doing all this, when the patient may not see himself or herself as someone in need of care. And he/she may not value it. But remember, care is not limited to physical tasks. Care can be emotional and spiritual as well as physical. So, if you are someone, who is a caregiver, we thank you for your commitment and sacrifice. And we would like to tell you that we appreciate you more than we might be able to say or show.
Common Myths about Deep Brain Stimulation:
While deep brain stimulation is a viable option and solution for those patients who face excessive movement and tremors in their body as an unwanted side effect of Parkinson’s; and is known for its success. The “pacemaker for the brain” as it is often referred as, is an implanted medical device to deliver accurate and controlled electrical stimulus to the targeted areas of the brain, this helps and corrects the abnormal pulses in the brain. However, there are quite a few misconceptions around the treatment, and they are:
There is no solid cure out there but what it does help is to improve quality of life. According to a research, it improves the quality of life by 26% and improves motor movements by 53%. Parkinson’s patients who undergo DBS, experience a drastic reduction in medication, and their motor function improves consistently. They have more fluid movements; reduce rigidity, helps with improving slowness and freezing (Akinesia).
DBS is new and experimental, how can it be trusted fully?
Deep brain stimulation as a treatment has been approved by the medical association FDA in the United States for over ten years, since 1997, and there are more than 1,75,000 DBS patients worldwide. The American Neurological Academy, recommends deep brain stimulation for a 60-90% progress in limb related tremors, and DBS for PD has been proven to provide better control over motor related symptoms versus medications alone. Thereby leading to a reduction in the number of medications taken and subsequently enhancing the quality of life.
Despite the pros of Deep Brain Stimulation, it is a treatment after all; one has to decide wisely. The chances of infection range between 3-5% over the course of the patient’s life, stroke risks are less than 1%. This procedure has been confirmed to be safe and efficient in the treatment of Parkinson’s disease, dystonia and essential tremor. There is minimal postoperative pain and most patients spend only one night in the hospital.
Caregiving for People Living with Parkinson’s
Tips to be a good caregiver
After speaking to people, who have been a caregiver to their loved ones in the past, we suggest you to do the following:
1. Get Prepared:
Preparing for caregiving starts with education. You have already made a start by reading this blog. In the early stage of Parkinson’s, a patient usually requires more emotional support and less hands-on care. It is a good time for family members/caregivers to educate themselves about the disease.
There is lot of material available, both online and offline. Whenever possible, accompany the patient to their medical appointments and discuss with doctor about their needs, your home environment, and your own health, emotional state, and other commitments.
The caregiver has to determine how much they can and can’t do themselves and what type of outside support is needed. It is also important to assess current and future financial issues and employment for both.
2. Take care of yourself
This may be one of the most difficult thing, but before taking care of the patient, it is very important for a caretaker to take care of themselves, both mentally and physically. As a caretaker, it’s important to not only keep a track of patient’s medication, but your as well.
Also, as a caregiver, it is important to keep your job whenever possible as it provides not only financial help and possibly insurance coverage, but also a sense of self-esteem. Whenever possible get your sleep, take breaks, make and keep social activities, and try to keep your sense of humour.
3. Get help (don’t try to do it all yourself)
Please don’t make this mistake. Don’t’ try and do everything on your own. Whenever and wherever required, ask for help. This way, a caregiver can lessen their sense of isolation, and it gain more confidence in their caregiving ability. Having help increases your ability to think creatively and helps you get those needed breaks.
Support groups are available, who can help you meet people, who are going through what you are going though. Use them to exchange information and learn coping strategies. And then there are off course your friends, neighbours, senior centers, adult day health centre etc., who will be more than glad to help you. You can always hire people for helping in taking care of home, and helping in cooking, bathing, dressing, and meal preparation.
4. Work to maintain a good relationship with your loved one
With the passage of time, as the patients symptoms become more and more troublesome, maintaining good relationship and communication with the person with Parkinson’s can become more challenging. As the disease progresses, the person with Parkinson’s may go from being an independent head of the household to a totally dependent person requiring a significant level of care. However, research shows that despite high levels of strain, caregivers with good quality relationships have reduced depression and better physical health. Remember, as a caregiver your service to your loved one is beyond measure in terms of love, depth of care, and concern.
5. Encourage the person with PD for whom you care, to stay active
Last but not the least, remember the pain that the patient is going through with all this thing happening. Studies show that 10% to 70% of those living with PD will develop some degree of dementia. This loss affects memory, thinking, language, judgment, and behavior. The person may start having hallucinations. All this can force the person to go into depression. Hence, it is very important for a caregiver to encourage the person to stay active. Motivate the patient to do regular exercise, spend time with all family members, crack jokes and laugh. After all, laughter is the best medicine.
Things Caregivers Need
Diseases like Parkinson’s are known to change the relation between the patient and the caretaker. As a caregiver or care partner, you may be the spouse, sibling, child, or other loved one, but you need to keep doing something so that the bond between you and the patient stays strong.
Given below are 7 little things you can do as a caregiver that will make your role easier:
1. Breathe deeply: Every day, do one thing that puts a smile on your face. Listen to music of your choice. Go out in the garden and take a deep breath. And when you get frustrated, scream loud. It really helps.
2. Don’t lose hope: Today, things may be very tough for you. But remember, after every night, there is a new day. Tomorrow may be something different. Something wonderful. Just don’t lose hope.
3. Sense of humour: Use it, and if you don’t have it, develop it. Otherwise you will get frustrated. Find something funny in every day. You need to laugh.
4. Get yourself into a support group: You may not think you need it, but you do. Especially as the time passes. It could be online or off-line. You would need someone to vent your frustration. It will help you feel better.
5. Meet your friends regularly: Don’t alienate them by thinking you can do this by yourself. Accept their invitations to help. Accept an hour off, washing the dishes, picking up some groceries, dropping the kids off at practice, or cooking your family a meal. If they offer help without you asking, it means they understand your situation.
6. Try to think ahead. Your loved one’s mental faculties may not be so great anymore. A daily schedule may be useful, with a reminder for doctor’s appointments, visitors, special occasions, etc.
7. Don’t beat yourself up. There will be good days and bad days. You may have more bad days now due to your new, unwanted role. And because this admittedly is an unwanted role, you feel like your life has been swallowed up along with the one you’re caring for.
Since Parkinson’s is more common in people 60 years old and older. Hence, caring for a loved one in this age may be very challenging, especially as the disease progresses. At times, the patient may get cranky, misbehave with you or even hit you.
We agree, PD is unexpected and it may have toppled your world. We also agree you didn’t choose the role of caregiver. But, who says you can’t be good at it. Take stock of your natural strengths and see how they can be used in caregiving.
We assure you that, caregiver is a role and an identity that you grow into, and it does not have to erase your self-identify. You can still continue to experience the love, friendship, contribution to society, ideas, and sense of wholeness that you need to grow as your own person, while you and your loved one face Parkinson’s together.