In November 2015, “Partners in Parkinson’s” (partnersinparkinsons.org – a partnership between the Michael J. Fox Foundation and a pharmaceutical company) hosted a webinar with Lonnie Ali, the wife of Muhammad Ali. Another panelist was social worker Diane Breslow, LCSW. As always, the moderator was Dave Iverson. Topics included: assisting a loved one with Parkinson’s disease, the importance of communication, some resources for education and support of the caregiver, and advice for taking care of oneself as a caregiver.
To watch the one-hour webinar recording, visit this Michael J. Fox Foundation’s Partners in Parkinson’s page and complete a short registration (name, email address, zip code, etc.). (Note that you can enter “fake” info.) Start here:
Building a Care Partnership: Supporting a Loved One with Parkinson’s Disease
www.michaeljfox.org/understanding-parkinsons/pip-webinar-registration.php?id=8&e=1063815&s=1&k=9ACCC710DB339AA0CAA15F89F8189D56
Brain Support Network volunteer Denise Dagan watched the webinar recently. She had these takeaways:
1. Being a care partner means integrating the diagnosis together into your lives, adapting your routine, supporting your loved one as the disease progresses.
2. You are the cornerstone of this journey, but you must find a movement disorder specialist whom you trust and communicate well with because it is a long journey – together.
3. You need to find a balance between letting Parkinson’s disease hijack your life, and not learning anything about changes that will be required of you as the disease progresses.
4. Not having difficult conversations puts more strain on a caregiver, than getting it in the open, even if there is a disagreement over the issue. At least the subject is not swept under the rug as a completely stressful unknown.
5. Build a team of allied professionals, including physical, occupational, and speech therapists. There are several ways to find good ones, including your movement disorder specialist, support group recommendations, and trusted websites like Partners in Parkinson’s.
6. Anecdotally, and statistically, caregivers of long-term illnesses die before the person they’re helping. So, be kind to yourself. Cut yourself some slack. If something doesn’t work well try something else tomorrow.
Denise’s extensive notes (including the good Q&A) are below. She says that the title — “Building a Care Partnership: Supporting a Loved One with Parkinson’s Disease — is perfect because your partnership should not be just between yourself and the person with Parkinson’s, but include your entire healthcare team, as well.
Robin
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Denise’s Notes from
“Building a Care Partnership: Supporting a Loved One with Parkinson’s Disease”
Partners in Parkinson’s Webinar
November 4, 2015
Panelists: Lonnie Alie, wife of Muhammad Ali, and Diane Breslow, LCSW
Moderator: Dave Iverson
What does caregiving for Parkinson’s mean?
Integrating the diagnosis together into your lives, adapting your routine, supporting your loved one as the disease progresses.
Caregiving can be challenging, but there are steps you can take to help adjust to your new role while maintaining a healthy and supportive relationship.
Best, first advice from Lonnie is to find a movement disorder specialist you trust and with whom you can communicate because it is going to be a long journey together.
You need to find a balance between letting PD hijack your life and not learning anything about changes that will be required of you as the disease progresses. You need to be patient, persistent, flexible, and develop a bit of a thick skin to bounce back from disappointment.
What about your self perception as wife -vs- caregiver?
Lonnie initially didn’t think the relationship was different. She was his wife and would do anything for her husband. As the disease progressed, she was more of a care partner, eventually becoming a care giver as he could do so little for himself. Even then, she prefers to think of herself as a wife and care partner, even if she is doing nearly everything for him.
What strategies can help your care partnership?
1. Educate yourself.
a. Learn about PD and treatments available. Be assertive to get the info and help you need.
b. Research clinical studies looking for volunteers.
2. Stay organized – as PD progresses, it gets more complicated.
a. Start a calendar with appointments, symptoms and side-effects. Document everything!
b. Keep a list of all doctors’ phone #s and med dosages and times. Don’t forget your own health info!
3. Know your rights.
a. Familiarize yourself with your insurance coverage and know where all documents are kept.
b. Look into disability coverage and family leave at work.
Open communication is your greatest tool. Like with any relationship, that between a patient and caregiver relies on open and honest communication. You are still the same two people as before PD, so communicate and enjoy yourselves the same as before, whether you are parent/child, spouses, or whatever.
* Don’t consider your own concerns to be less important than the person with PD’s concerns.
* Focus on quality of life. Do what you enjoy as long as possible, especially together.
* Plan activities together that bring you beyond the patient/caregiver relationship.
If you feel comfortable doing so, visit a counselor or therapist together or separately to discuss the many changes you are facing.
What about discussing the hard stuff, like not driving, anymore?
Lonnie says it’s not just the driving, but loss of independence. With Muhammad, the conversation came up when it was time to renew his license. She insisted she had the time to be chauffeur and preferred to do things together, anyway.
She tries to give him a voice in difficult decisions, like not renewing his license.
* Dave suggested NOT having difficult conversations puts more strain on a caregiver, than getting it in the open would, even if there is a disagreement over the issue. At least it’s not swept under the rug as a completely stressful unknown.
Build a Team for Support:
* A movement disorders specialist with additional training in Parkinson’s disease can help navigate the challenges of diagnosis, treatment and progression of the disease.
* Allied care professionals, like a social worker, physical therapist (PT), occupational therapist (OT), and speech therapist, can help design a holistic care plan.
* Other friends and family members can help care for your loved one, giving you time for yourself and an opportunity to be involved in your lives.
* A caregiver support group or online communities can offer a friendly ear and more helpful suggestions. Caregivers need to have their own support group meetings or gatherings because they need to vent, share, learn tips and resources, and receive support from others.
Dave asked how to find allied care professionals?
Find out if there’s a social worker at your clinic. If not, your movement disorder specialist has referral lists for PT, OT, and speech therapy that can get you started networking w/professionals.
The Michael J. Fox Foundation, National Parkinson Foundation, and other reputable websites, support group recommendations, and the Family Caregiver Alliance are other good sources.
Dave added the partnersinparkinsons.org website has a “Useful Tools” section, which has a movement disorder specialist finder tool, one-on-one support from a PD advocate, future and archived webinars, and more.
Caring for yourself is part of caring for others: You are the cornerstone of this journey.
* Seek help either from other loved ones or from professionals.
* Schedule time for yourself and your own social activities.
* Exercise and eat right for more energy and less stress.
* Keep your own medical appointments.
* Talk openly about what you are experiencing.
* Create the life that is best for you and your loved one.
Anecdotally, and statistically, caregivers of those with long-term illnesses die before the person they’re helping.
Be kind to yourself. Cut yourself some slack. If something doesn’t work well try something else tomorrow.
Q&A
Q: How do you cope w/frustrations and uncaring reactions that can creep in at the end of a long day?
A: Start each day with a positive attitude. Learn to roll with the punches. Do the best you can, and don’t beat up on yourself at the end of the day. Remain positive.
Non-responsiveness depends on stage of PD. It can be difficult for a person to be expressive because of PD facial masking. In addition, they have frustrations themselves. So much has been taken from them. You have to know in your heart that they appreciate you.
Q: Sometimes my spouse has a temper.
A: It’s hard to do, but remind yourself that most of the time their behavior is not personal. It is the frustration of living with PD, mood changes, irritability, depression, anger, etc. is actually disease-related, not just, why me?! It can be difficult if the person with PD had depression before being diagnosed with PD, especially if it was not well treated then. Mood fluctuations and depression can be treated, so ask your doctor.
Q: Where to turn for dementia and cognitive issues resources?
Distinguish between cognitive issues and dementia. They are not the same. Cognitive issues can be slowed thinking, problem solving, learning, but not the same as dementia. Many fear that a PD diagnosis means dementia is part of it, but not necessarily. The longer someone has PD, the more likely there will be cognitive issues and/or dementia. You need a movement disorder specialist who knows how to assess each, what referrals to make, and resources to help.
Q: Discuss the role of children as care providers for people with PD, and how to be supportive?
Lonnie says it’s very important, especially if they live nearby. Visiting can be important respite for primary caregiver/spouse. As often as possible, they should take the person with PD to doctor appointments. Kids should see this as quality time with their parents, a chance to check on circumstances the parents live with, and nuances of the disease. If they live farther, parents need to make the effort to explain the nuances of PD when kids do visit.
Q: What to do when your partner could benefit from therapy but refuses?
If a caregiver goes to support group and comes home to talk about it, it could slowly break the ice on getting connected to the Parkinson’s community, or getting help based on the caregiver group’s recommendations and referrals.
Try an exercise class for people with PD to increase personal interaction with others who have PD. Even a regular class (not exercise, and just with other seniors) – any social interaction. Research shows social interaction combats depression and has other health benefits.
Exercise/fitness is good for both care partners because it maintains mobility and prevents injury while caregiving, so do it together, even get tri-cycles for both of you.
Q: Any tips for sleeping next to a person with Parkinson’s?
Lonnie says for years before they understood people with Parkinson’s often have sleep issues (especially REM sleep behavior disorder), she lived with that. But, she stayed in the bed because she didn’t want to project rejection or emotional distance. She learned some tricks, like go to sleep first. Sleep is important to both care partner’s overall health, well being, and emotional health – not to mention Parkinson’s symptoms.
Q: How do you introduce outside help for someone who doesn’t want it due to independence?
Start with bringing in a family member or friend. While they’re visiting, ask about stepping out to run an errand, etc. Sometimes, people procrastinate because they don’t know what’s the best time of day to do this. Just pick a time and try it. Start small, just 1-2 hours to begin with. With small successes, increase the time or number of days. Eventually, move to a hired person, more hours, more days, as needed.
Q: How not to get angry with other caregivers who aren’t providing the level of care expected?
Lonnie says: This is very common. Nobody will do it as good as you with all the years of your personal relationship, even your own children. Be patient, and expect to train people, regardless of their level of experience. Let them learn. If there’s negligence, find someone else. You may go through a lot to find the right team.
Last comments:
Ms. Breslow: You may find an unexpected closeness and appreciation of the person who has Parkinson’s. Often seeing their strength in the face of these new challenges shows you a side of them you would not have seen, otherwise. You may find a marvelous expansion of your circle of friends when you meet others dealing with PD.
Lonnie: Because of Parkinson’s disease she learned new skills, medical knowledge, more about herself and had more personal growth. She has an even greater appreciation of Muhammad, seeing a side of him she would never have seen without a long-term illness.