Taking Care of YOU, the caregiver is VERY IMPORTANT so that you can continue caring for the person with Parkinson’s.
People with Parkinson’s please be receptive to this.
To take care of you dear caregivers:
Learn as much as you can about Parkinson’s and about how to be a caregiver. The more you know, the less anxiety you’ll feel about your role and the more effective you’ll be.
Seek out other caregivers, which you can do through support groups, including telephone or on-line support groups. It helps to know you’re not alone. It’s comforting to give and receive support from others who understand what you’re going through.
Always trust your instincts. Remember, you know the person with Parkinson’s best. Don’t ignore what doctors and specialists tell you, but “listen to your gut,” too.
Encourage independence. Being the caregiver does not mean you have to do everything for your loved one. Be open to technologies and strategies that allow the person with Parkinson’s to be as independent as possible.
Know your own limits. It is important to be realistic about how much time and energy you can give. Set clear limits, and communicate those limits to the person with Parkinson’s, the doctors, other family members, and other people involved.
Caregiving requires stamina and endurance. Caregivers drive the care and must make sure they themselves do not “run out” of gas.
Anxiety and fear – How will you handle the additional responsibilities of caregiving and what will happen to the person with Parkinson’s if something happens to you? What will happen in the future as the Parkinson’s progresses?
Anger and bitterness or resentment – Even though you know it’s irrational, you may feel anger or resentment toward the person you’re caring for. You might even be angry at the world in general, or resentful of other friends or family members who don’t have your responsibilities.
Guilt – Maybe you feel guilty for not doing more or for not being a “better” caregiver. You may question your patience and/or acceptance of the situation. Learn how you can do this with more equanimity.
Grief, Sorrow, Heartache – There are so many losses that can come with caregiving, the healthy future you envisioned with the person with Parkinson’s; the goals and dreams you’ve had to set aside, the loss of your personal time, and the use/loss of money to cover the costs of caring for your loved one. If the person you’re caring for is terminally ill, you’re dealing with that grief and loss too.
There are seven stages of grief including shock and denial, pain and guilt, anger and bargaining, “depression”, reflection and loneliness; the upward turn, reconstruction and working through, and finally acceptance and hope. Grief is a natural feeling that is often caused by loss of a loved one; loss through illness or loss through death or both.
Understanding the way you feel may not lessen the impact on you. Talking about them, in order to deal with your feelings, is important. Don’t keep your emotions bottled up! Find at least one person you can trust to confide in.
Where can you turn for caregiver support?
- First you might try family members or friends who will listen without judgment;
- Approach your church, temple, or other place of worship;
- Local Caregiver support groups or Caregiver Groups online;
- Hire a therapist, social worker, or counselor;
- Subscribe to caregiver organizations or periodicals;
- Join Parkinson’s Organizations and support groups.
- Recognize caregiving is an added stress in your life.
- Realize it is OKAY to ask for help from family or a friend.
- Accept help when offered.
- Take a day off when you can.
- Do something fun for yourself.
- Share your feelings with someone.
- Remove yourself from the situation when possible.
- Cry— do not be afraid to express your feelings.
- Take care of your own health care needs.
- Remember, you are not in this alone.