Written by Connie Carpenter Phinney
Our November meetup featured our long-time Care Partner Meetup panelist Gail Gitin, who offered her wisdom and advice on everything from travel to self-confidence and patience. Pat Donahoo joined us as a panelist, and Polly Dawkins moderated.
As usual, we started with a breathing exercise. As a former elite endurance athlete, I have long known the power of the breath, and I encourage you to take “breath breaks” to help regulate your emotions. Box breathing is something that the Navy Seals use—so why not us?
It’s a simple technique of inhaling for four counts, holding it for four and then letting it out slowly for four counts and again holding it at the bottom of your breath. Do this several times in succession or even for several minutes to regain a sense of calm when you feel anxious and overly stressed. It is simple and it helps!
If you haven’t already signed up to attend our sessions live, you can do so today.
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MEETUP NOTES
Getting social
Gail started our conversation this month by addressing the upcoming holidays and how they might inspire a wish to return to the time when you and your person with Parkinson’s were healthier. Because we live in the present, it’s important to have strategies to manage the holidays, especially if they include travel.
Even if you are staying at home and inviting friends or family over, you should plan carefully. Gail recommended buying dinners or platters that are prepared. Most grocery stores offer prepared meals, but there are also independent catering services. Alternatively, consider having a potluck where everyone brings a favorite dish to share. Outsourcing the food preparation can make a big difference in lightening your load.
It could be advisable to assign another family member or close friend to watch over your person while you socialize and certainly it always helps to provide your guests with a primer about what to expect in terms of your person’s symptoms or advancements if they haven’t seen him/her for a while.
Whether you are traveling or staying in, Pat advised being clear about the desired timeframe in advance (for example, two hours maximum) or setting a timer to help stay on track. Your person will fatigue more quickly in a chaotic environment, but you may also need the stimulation provided by friends and family.
Travel Tips
Gail offered practical tips for multiple aspects of traveling while caring for your person with Parkinson’s.
For example, she said that when you are at a restaurant, you can ask the waiter to have the food cut into bite-size portions before bringing it out to the table. This avoids the embarrassment of having to assist at the table and allows you to have more time to enjoy your own meal.
Gail has produced an extensive list of tips for travel, and during the meetup conversation, she highlighted a few of them. Top of mind was the utility of trackers like the Apple Airtag or Tile to keep track of not only your luggage/purse/backpack but also your person in the event they wander off and you are separated.
Another strategy to minimize the risk of being separated is to enable tracking on their phone. You can do this via the contacts list on your iPhone or using google maps, but don’t forget to enable notifications on your phone and theirs. Gail also urged you to ensure your person has a card with them at all times and which includes the address where you are staying and your phone number, just in case.
Gail also reminded us that not only do you get more anxious ahead of a trip or an event, but so does your person. This may manifest in unexpected and highly exaggerated symptoms. She advised that you go step by step with them and describe every detail in advance of your trip. You will have to repeat yourself: but keep updating your person so they understand what is coming up so they can better process it.
We talked about air travel and recent upgrades in systems like at TSA where they have a program called TSA Cares where you can phone ahead and get extra help. There are also a growing number of airports that participate in the Hidden Sunflower program. This program provides a way to subtly inform airport staff that your person may need some extra time.
Seats and Other Important Details
Booking the right seats onboard can also help. Pat prefers the bulkhead for easy access. Some of our listeners say they prefer booking aisle seats across the aisle from each other for easy access. I use seatguru.com often when booking flights to check for the specific plane when I’m in the planning phase.
Gail reminded us to double check all bookings, especially for lodging. Whenever possible, chat with the hotel in person to confirm the room location and bedding that you need. Always take care to ensure an elevator will get you to your floor, and always consult with the owner when booking a rental home regarding steps and even bed heights. Accessibility is key and will help you reduce the likelihood of a fall and increase your enjoyment and capacity to relax.
Pat reminded us to always bring a nightlight or two. Gail said she used to have portable urinal flasks sent ahead to her destination in the event her husband could not get up to use the restroom. On this same subject, it is important to bring several sets of clothes with you during travel to cover spills and accidents. One of our listeners said she had made some bibs for her person that matched his shirts (!).
It is critical to remember, though, that dehydration is not advisable even if your person is trying to avoid frequent visits to the bathroom. Dehydration leads to more cognitive issues, which will further impair your person. Plan frequent visits to the restroom and allow extra time for everything!
Questions from the Audience
The difficulties of travel inspired a listener to ask Gail about patience, and with her usual humor, Gail replied, “You are asking the wrong person.”
Gail then added that when her kids were little, she had to put a rubber band around her wrist and flick it when the behavior of her kids was troubling her. The flicking of the band reminded her to calm down, be patient and it helped her to resist getting upset.
This called to Gail’s mind the need to remember it’s the disease, not the person that is annoying you and causing you to lose your patience. She advised that care partners should try not to beat themselves up too much. If you do not have the patience you wish you had, remember this is often caused by how much strain you are under.
Gail said if a stranger looked out at our day as care partners, they might think we were angels. We just forget that about ourselves. There’s no doubt we feel a lot of stress and we feel guilty about not being able to do more. But we are doing the best we can.
“We were recently out with friends, and I heard my person with Parkinson’s talking and giving inaccurate information. My person has mild cognitive impairment. What is my responsibility?
This is a hard one and depends on whether the information is harmful or simply fanciful. If the story your person is telling is hurtful to another, it might be important to correct it straight away. Otherwise, a phone call after the fact or pulling the person who heard the story aside, might be more tactful and protective of your person.
This is not unusual behavior for a person with dementia and can be frustrating or annoying for you as the care partner. In the future, you might consider giving your friends and family a little notice that this might happen and perhaps to take care in believing what your person says.
The broader question is to assess your own bandwidth as a care partner. How much is this bothering you? Can you let it go, or do you feel embarrassed? It’s a tightrope we all walk and there are no clear answers. Pat said he likes to relax and let things roll as regards his wife, but he also acknowledged she is not as advanced, and they are very open about her condition with their friends and family.
Gail noted that it is different in the doctor’s office. She said, “I tell people just email the doctor, the doctor’s office before you go and let them know that the story is not going to be the real story.”
“How do you deal with resentment?”
Gail acknowledges none of us would want to change places with our person, so we have to realize that being the one on the caring side has a price. That said, Gail also observed that being a care partner over a long time made her better. She didn’t know it when she was in the thick of things, but she knows it now.
And it is hard sometimes to see your able-bodied friends managing so much easier than you are. That can be frustrating, and I admit to having a hard time with that and to wondering what my life would be like without my partner’s diagnosis and how that changed everything for us.
Most of you reading this are partners of someone with Parkinson’s, but not all. If you are an adult child of someone with Parkinson’s, you also feel this burden that perhaps your friends do not if their parents are healthy. It’s not about fairness, but it does tilt the balance.
Nobody deserves this but we are managing by showing up and doing our best. It’s National Family Caregiver Month. Maybe it helps to feel acknowledged, but mostly this month points to the fact that we number in the millions and most of us labor alone. We are all trying to manage better. That’s the goal: to do better. We can’t cure ourselves of the disease. It’s there. And we are here.
Pat does this with such beauty for his wife who’s had a challenging couple of years, which means Pat’s had a challenging couple of years. And yet he doesn’t give up.
There’s a fine line between giving in and giving up. We’re here because we aren’t giving up.
Finally, something easy for you to try: a physical practice to help with negative emotions like anger and resentment. I learned this from physical therapists. They shake their wrists as if flinging water off their hands after each client.
It has some scientific value, but my own personal experience tells me it simply helps me to move forward and releases stress that compounds in my body. Qigong practitioners have a variation on this known as the Tree Shaking exercise. Try it!
ADDITIONAL RESOURCES
Gail’s Full List of Travel Tips
A Listener-Recommended Lightweight Walker
Physical Challenges: Top Tour Companies for Travelers With Physical Challenges – AARP
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WANT MORE PRACTICAL ARTICLES LIKE THIS?
You can learn much more about living well with Parkinson’s today through our Every Victory Counts® suite of resources. Each manual is packed with up-to-date information about everything Parkinson’s. Click the link below to order your manual(s).
Thank you to our 2024 Gold Partner, AbbVie, and our Silver Partner, Mitsubishi Tanabe Pharma America, for their ongoing support of these must-have manuals. Additionally, we’d like to thank Barbara and Dale Ankenman, Abby and Ken Dawkins, Bonnie Gibbons, Irwin Narter, Lorraine and J Wilson, and Gail Gitin in loving memory of Gene Gitin for their generous donations that allow us to make these resources available and accessible to all.
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The post Notes from the Care Partner Meetup: November 2024 appeared first on Davis Phinney Foundation.
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