First Lady Rosalyn Carter once said, “There are four kinds of people in the world, those who have been caregivers, those who currently are caregivers, those who will be caregivers or those who will need caregivers.”
Whether you choose the term caregiver, or care partner it appears that Mrs. Carter is correct and we will either be one or need one at some point. Providing care for a loved one may be rewarding and fulfilling but it is also tiring, difficult and sometimes frustrating. November has been designated as National Family Caregivers Month please take time to remember and thank those paid and unpaid who provide care during this month.
It is also a great time to remind caregivers to take care of yourself. You deserve it and will be a much better care provider if you remember to take care of you! Please remember you are not super human—you are not faster than a speeding bullet, you can not jump tall buildings, and chances are you do not possess super strength or have a large S emblazoned on your chest. You probably are also not a saint and consequently are not perfect and will occasionally make a mistake or say or do something you will regret. Most caregivers/partners did not plan to become one. Most do not possess a degree in caregiving or even have professional training in caregiving so be realistic about your expertise and expectations.
The following are some hints for caregivers:
Be realistic—know your limits and be willing to admit what those are and when you have reached them.
Don’t be too hard on yourself. Everyone makes mistakes. Ask for forgiveness from your partner and yourself and move on. Forgive and forget!
Join a support group and learn from others with similar experiences.
Take care of yourself—get plenty of sleep and exercise and eat a good, healthy diet.
Make time to do things you enjoy every day.
Get away from your caregiving duties. You will be a much better caregiver and less likely to make mistakes if you take an occasional break.
Journal your daily experiences. Research suggest this is very therapeutic and may prevent caregiver burnout.
Trust your instincts. You may not be a professional but you probably know your partner better than anyone else.
Feed your spirit or soul. Don’t forget to pray or meditate daily.
Don’t forget to laugh - laughter really is the best medicine for you and the one you are caring for.
Relax often; take a long bath, listen to music, take a walk, whatever helps you.
Don’t forget to ask for help and be willing to receive it.
Keep children and other family members informed.
Watch for signs of depression and burnout.
Parkinson’s is truly an individual disease; yet like most chronic diseases it will have an affect on all of those around you.
Once an individual has been diagnosed with PD they may find it difficult to communicate their thoughts and feelings with their loved ones, friends and co-workers.
This is not unusual when someone has been diagnosed with a chronic disease but it may be especially difficult for a spouse or child to understand. Fear, shock, lack of knowledge or education may all have an effect on a person’s ability to communicate with their family and friends once a diagnosis of PD is made. Complications often found in Parkinson’s like anxiety and depression, slowed thinking and even difficulty speaking may further complicate matters.
As a caregiver it is vital that you keep the lines of communication open between you and your Parkinson’s partner and also between other members of the family. The following are some suggestions that may help you communicate better and keep your relationship strong as you journey through PD together.
Put yourself in your partner’s place! How would you feel if you were the one who was diagnosed with PD?
How would the changes that are occurring or that will occur affect you? It is probably good to revisit these questions often during your journey.
Be patient! Remember that one of the symptoms of PD that almost everyone experiences is bradykinesia (slowed movement) and that this effects not only motor skills but also cognitive thinking as well.
Be honest! Don’t be afraid to discuss your concerns and fears with your spouse. Too often everyone is busy protecting everyone else in the relationship and no communication takes place. This in itself can destroy relationships.
Be realistic! Regardless of your partner’s age at diagnosis we are all aging and aging with or without Parkinson’s causes changes. PD often complicates and maybe even makes changes worse and or more difficult but change will occur with or without PD. Chances are you too are changing! You probably are not as quick as you once were, or as nimble as you once were or even as strong as you once were. You may also be experiencing some forgetfulness or other cognitive issues. So be realistic in what you can or cannot do and what you expect your partner to do.
Listen! Communication must be a two way street if it is real communication. Take time to listen to what your spouse is really saying. Look for non-verbal cues to help you understand the intent of what is said. Listen to what others are saying as well. Sometimes we are too close and too focused to really see what is going on. Listening to friends, family members or others may help you realistically see how to handle a situation.
Make your relationship more than just about PD! Your partner is more than just Parkinson’s disease and you need to stay focused on the things that you enjoyed before the diagnosis of PD was made. Remember the things that you enjoyed before and try to find ways of reconnecting with those things.
Keep children informed! Children of any age should have a realistic understanding about PD. Trying to protect or shelter them from reality only leads to difficulties down the road.