Caretips from Caregivers
Care tips from Caregivers
We had the great opportunity to meet Lonnie Ali, talk about the role of the caregiver on September 11 and 12th in Bellevue. WA. She is an inspirational speaker filled with guidance and great messages learned by trial and error while a caregiver to one of the most famous people with Parkinson’s- Muhammad Ali. Muhammad, a man that exemplified physical perfection, mental toughness and wit, was diagnosed with Parkinson’s disease in 1984 at the young age of 42 ears. Lonnie was by his side then and now. This article is inspired by her message, my own experience and lessons learned from our own community caregiver, Carin Mack, MSW a social worker and tireless champion in our community.
Lonnie reminds us just how important caregiving is when she quoted former first lady Rosalind Carter – “there are only four kinds of people in the world- those that have been caregivers, those who currently are caregivers, those who will be caregivers and those will need caregivers”.
It starts at diagnosis.
Many emotions flood your mind when you hear the diagnosis, “you (or your loved one) have Parkinson’s disease.” Many of us go through stages of grief as described in a previous article, Embracing Change; experience anything from anger, disbelief and denial, confusion, and depression. Even if symptoms are mild, the feelings are not. Take a deep breath, let the information settle in then begin to take charge.
- Be an advocate. Organize and fight for your health. Don’t depend on others to advocate for you.
- Ask questions. “What is it, how is it going to progress, what will happen to me and what CAN we do about it?”
- In this together. Provide feedback to your doctor or healthcare provider. You might ask, “what kind of information do you need from us to help you help us”?
- Keep a notebook. Record medicines, dosage, effect or side effect. See Every Victory Counts at www.everyvictorycounts.org a care book designed for just this purpose. Alternatively, get a simple 3 ring binder to store your information, questions, medication lists.
- Go to Be Prepared and My Medical Chart, print these forms and use these tools for your benefit and organize your information.
It’s a marathon not a sprint.
Take it one step at a time focused on your goals now that you have settled into life with Parkinson’s and have armed yourself with a little more knowledge and preparation.
- Keep your eye on the finish line-optimal health. You are as good as your general health. Lonnie Ali says, “Parkinson’s is like a safari, symptoms jump out of the bush…and you wonder, what in the world is this?” You will experience many symptoms some from Parkinson’s and some that are not. Stay healthy, follow you primary care physician’s recommendations and pay attention to preventative health.
- Select a coach. Find a healthcare provider you can connect with as this is a long-term relationship. Your PD specialist
- Be wise and don’t leave common sense behind. There is a lot of information and claims of cures or dramatic results in this age of internet. Everything may not apply to you and all may not be true. If it sounds too good to be true, maybe it is.
- Stay connected. Don’t lose track of friends. If they retreat, talk about it. Bring that discussion about what it means to have Parkinson’s in your life to the table rather than skirt around the issue. Ask for their help and let them know how they can help. Find new ones. Go to support groups.
- Be prepared. Adapt your home for safety before it becomes a crisis. Don’t hide the exercise equipment in the basement but put it where it will be used. Know what is available to you, resources in your community, and important tasks for life planning.
- Know your rights. Rights as a patient, rights as a caregiver, legal decision making
- Plan how you will behave as a caregiver. Talk about what you can do together, how much encouragement is needed and when it crosses the line into nagging, what you expect of the person with Parkinson’s, when you should ‘chip in’ and what kind of activities you will do together.
- Do things together. A stellar example is dancing - good for Parkinson’s, balance, social engagement, relationships and emotional wellbeing.
Take Care of Yourself
Caregivers may bring additional responsibility to your life and add an additional degree of stress. Learn the signs of Caregiver Strain so you can identify these problems and respond before they are significant.
- Don’t go it alone. Stay connected. Find a caregiver support group and learn from others that are in your shoes.
- Organize, downsize and simplify. This might be a time to take inventory of that which complicates life, adds unnecessary work or more stress to life and get rid of it.
- Learn to say yes…and no. Yes to those things that are good for you and your loved one. Exercise, hobbies, social activities. No to those chores that are less valuable to you.
- Be realistic. There are 24 hours in a day not 48.
- Start a journal. This insightful exercise leads to personal growth and development.
- Be positive. Lonnie reminds us that we must leave yesterday behind us, today is a new day, and anything is possible.
- Find enjoyment. For you and your loved ones.
- Continue your outside interests, passion or hobbies.
- Find a moment for yourself. Meditate, pray, journal, enjoy a quiet cup of tea, read, write, take a walk in nature.
- Find respite. Work is not respite. Carin Mack warns about the increasing emotional strain that builds up when you do not have time to yourself.
- Be healthy. Rest, go to your own doctor’s appointments, exercise, eat well and do all the things you wish for your loved one.
- Live in the moment. No one knows what tomorrow will bring.
- Indulge yourself. Chocolate anyone, massage, movie matinee?
Author: Monique Giroux, MD