Take a complicated subject you know more about than most people, and explain it to a friend who knows nothing about it at all.
I don’t know much more than anyone else in the world, but I may know a little more about Parkinson’s Disease and from working in the hospice world and caring for end of life patients, I feel like I may be more aware of what happens to ill patients.
Parkinson’s Disease is an illness that affects the brain. It comes completely geared to appear in five stages. The first stages through fourth, are sometimes easiest to deal with. The patient may be able to still work, and lead a productive life, with some noticeable tremors, and some gait issues.
As each phase comes to life, the ability to stand straight becomes harder as the body stiffens. The brain does not let body parts know what to do next, the legs stiffen and the feet can be found to shuffle along,and so falls can become a part of every day life. Eating may become difficult due to the tremors, which can be in the hands, legs, head, or sometimes the complete body will tremor.
This in turn takes its toll on the body and makes walking harder. There are medications that PD patients can take. They can not cure PD, but they can slow it down, but sometimes the medications themselves, can make it worse in the end result.
In the fifth stage of PD, walking becomes to the point of having to have help to walk, such as a caregiver, walkers, and sometime wheelchairs. Dementia along with confusion, tears, depression can be a part of every day life.
The fifth stage can bring incontinence, constipation, lack of eating skills, tube feeding, bed ridden, and can also stop the recognition of family and friends. PD does not take the patients life. Usually a lung infection or bad cold is the culprit that ends the life in the end.
As a caregiver, it is very important to have a compassionate heart with ill patients. The patient is suffering, sometimes not realizing why this is happening to them, or the fear of death may become an obsession along with fear.
A caregiver’s life can be quite stressful while taking care of the patient, a caregiver can actually forget to look after their own selves. You can become worn down, tired, stressed out, cry easily. It is very important that the caregiver takes good care of themselves, and takes the breaks that are offered. You are not there just for the patient, or for the money you earn, you are there also for the family who is suffering right along with the patient.
To be a caregiver, it takes more than a body showing up to do a job. There has to be a desire from the heart to help this patient have the best quality of life he or she can have. Someone to hold their hand, talk softly to them, read to them, and sometimes to just sit with them. When you can have this along with the daily care of feeding, bathing, dressing, doctor’s appointments, bill paying, you are a caregiver that everyone wants to have when the time in their own home, someone is needed.
As for me, I am tired, and I carry a lot of stress, but I would rather take care of my own brother who has PD, then to let him suffer alone in a nursing home, for as long as I can do it. I am gathering great memories, and will have these to ponder back on when this part of our lives are over.
We all need to feel loved and needed. ill and elderly can revert back to children, and we can all remember how much we wanted to fit in, and be accepted and to never feel alone.
I have taken care of a lot of patients, geriatric, mentally challenged, disabled children and adults, and the dying patients, but in my own personal opinion, PD takes the cake. It is the worst illness I have ever come across. There is no ending date, such as a cancer patient. PD patients can live long lives with this illness. There also is not that much information about PD, making it harder to get professionals to understand what things are like at home.
I hope that one day when my brother’s time is near to go to see heaven, that he knows I did my best, and that I loved him very much.
- Non-Motor Symptoms in Patients with Parkinson’s Disease – Correlations with Inflammatory Cytokines in Serum (plosone.org)
- Sleep and Working Memory in Parkinson Disease. (zedie.wordpress.com)
- Merck’s Entry Into The Parkinson’s Disease Drug Race (seekingalpha.com)
- Recognizing Symptoms of Parkinson’s Disease in Elderly Patients (assistedlivingtoday.com)