7 Helpful Tips To Help You Care For The Person You Know Or Love
1. Take One Day at a Time
Being a caregiver is or can be a 24 hour, 7 days a week, 365 days a year job. Because of this, one of the biggest challenges you will face is
being very tired. Your life can also be very challenging and frustrating because the time you have to yourself is limited.
In addition to this, because the progression of Parkinson's disease is so unpredictable it makes planning for the future very hard. Taking
things one day at a time makes it easier to live each day to the fullest. It reduces the stress levels of the person with PD as they don't have
to worry about whether or not they will be able to do this or that in the future.
2. Patience Goes a Long Way
One of the most important things a caregiver needs when dealing with someone with Parkinson's is patience.
Being patient is sometimes easier said than done, but a caregiver needs to be aware that his or her stress levels can and do affect a person
with PD in a negative way.
Making negative comments of any type as well as giving an angry look can be picked up a person with PD and make their symptoms worse.
One way to increase your patience as a caregiver is to remind yourself that it is the disease, and not the person that is frustrating you.
3. Respite Care is a MUST
A respite worker is someone who can come into your home and help a person with PD with activities of daily living, etc. This gives the
caregiver a break from having to do this everyday which can lead to burnout.
Depending on how much care the person with PD needs on a daily basis, the caregiver may chose to take one or more days "off" a week from care
giving and have a respite worker come in. Dave (my mom's husband and caregiver) finds that taking one day off a week works well for him.
As a caregiver it's important that you not feel guilty about wanting to have time off and have a respite worker come in. It is not selfish for
you to want this time off. Rather, it is absolutely NECESSARY that you do take it, both for your sake and the person you are taking care of.
"People feel that I'm running away", Dave says, but you're not. You're just stepping back off the playing field for a little bit and giving
yourself a break. It can also be a good break for the person with PD.
Remember that burnout can come easily and without the caregiver being able to function means the person with PD won't be functioning
4. Educate Yourself
When Dave first met my mom, he had no idea what Parkinson's was and what it meant for her to have it. He says it's very important to know what
you're dealing with so you know what to do and what to expect.
Dave is a firm believer in education. He says that educating himself about PD has been one of the most important things he has done as a
5. Try a Caregiver Group
Caregiver groups are important but you need to be careful that you find one that is upbeat and positive. "Some care groups can be nothing more
than a bunch of people whining and complaining and this can make you feel more depressed", Dave says.
It is also important that you make sure the group has a caring and compassionate facilitator who can make sure that the group stays on
Finally, when you are at the caregiver group, be careful to never speak out negatively about the person you are caring for, and keep your
complaints related to the disease.
6. A Person with PD Can Make Life Easier for the Caregiver
Even though most of the "jobs" are for the caregiver, there are some things that the person receiving the care can do to make things
First of all, it is important that the person with PD be very supportive of the caregiver taking time off to be alone.
Second, whenever possible the person with PD should try to do things on their own without the caregiver's assistance.
Third, it is important for the care receiver to realize that the caregiver has a frustrating and challenging job and they should not take it
personally if and when the caregiver is feeling frustrated or upset.
Finally, though it may sound a little contradictory, it is important to make life easier for the caregiver so he or she can then make life
easier for the person with PD.
7. Parkinson's Does Not Have to Come Between You and Your Loved One
If you are a caregiver you probably have a close relationship with the person you are caring for. Whether it’s your spouse, your mother or
father, friend or other relative, it's very important for you both to realize that the problems you are facing are not from the person, but the
Parkinson's is a disease that could come between the two of you, and you have to be careful not to let it. You have to find things that you
can still do together or find new things that you both can enjoy.
Whether it's watching TV or whatever, you have to find ways of doing things together that are fun and not a struggle for the person with PD
and that don't require patience on the part of the caregiver.
"It can be very easy to lose the relationship you have with one another and just become the caregiver and care receiver. You lose the sense of
being a man and a woman, of being husband and wife, of lovers, of companions and friends", Dave says.
"You need to make a very concerted effort to do the types of things to maintain that sense of relationship above and beyond being a caregiver
and care receiver".