Five Things Your Mom, Dad or Disabled Friend May Not Be Telling You
Everyone eventually has physical challenges as he or she ages. Many of my girlfriends and I started having arthritis or other painful hand issues as early as our late 50’s or early 60’s, and we sure did not consider ourselves old! I have had a mostly paralyzed leg from polio since I was three, so am aware of hidden difficulties, and also know that people with disabilities or physical challenges often don’t like to bring them up. Frequently people feel that admitting these issues is also conceding to aging, or that people don’t want to hear about physical problems. Well, no one likes to hear a lot of grousing, but it’s important to know if our relatives or friends need a little compassion or assistance.
1. Pain or weakness are not always obvious. People have different pain tolerances, and sometimes people will put up with pain and try to hide it until there is physical detriment which might not be reversible. Tendinitis (painful tendon) can be healed with rest and physical therapy, and tendinosis (permanent damage to a tendon) requires making adjustments to live with it. If your friend or relative is limping a little, that’s almost always due to pain or weakness. Please don’t say, “Oh don’t let it bother you, just keep walking.” Shorten the hike and kindly ask what the problem is. A trip to a doctor may be in order.
2. People in wheelchairs hate to be patted on the head, just as deaf people don’t like to be shouted at. These are condescending actions. Patting someone on the head when they are seated is treating them like a child or a pet. Additionally, it’s hard on one’s neck to talk to people at length when they are standing above you. So sit down in a chair where you’ll have direct eye contact and relate on a more equal basis; if it’s just a brief set of comments, squat next to the person.
3. Many disabled or challenged people hate to ask for help unless it’s a dire circumstance, such as a fall. I need assistance much of the time, and rather than ask for it constantly, I save up my requests for the most significant needs. Mom may find shopping more difficult, or not be able to lift things as “light” as ten pounds. I finally learned to ask for carry out help at the market, rather than keeping up the pretense that I didn’t need help. When someone casually asks, “Need a hand?” it’s easy to say “Yes.”
4. “I don’t want to be seen on a mobility scooter but I sure wish I didn’t have to walk this far.” When I realized I was starting to need a scooter, I was an accountant and went to three-day tax seminars, which were held at huge convention centers or hotels. It’s never been easy for me to walk the distances other people can, and these big venues became exhausting for me. But I had a biased mindset that people who used scooters were either obese and lazy, or giving up on themselves, and that walking was always good for me and others. I had a prejudice about disabilities, even though I had one! Walking is not always good for people if it causes pain or exhaustion. I tried renting scooters on vacations, and had a much better time! I eventually bought a folding one that comes apart which I can lift into my trunk. Mine is a TravelScoot, but there are others; some are heavier and good for rougher terrain but may require a helper, a van or a lift in order to transport them. I saw a guy with a nifty golf-cart-looking one recently; it was red, streamlined, had a windshield and roof, and would be good for the two-mile distance from my home to our nearest shopping center.
5. “This house (and/or garden) has gotten too difficult for me to maintain, but I love my home and don’t want to think about moving.” This can be a tough one. If you notice that your mom’s or friend’s place is looking a little dirtier, messier or shabbier than it did in the past, there are a few approaches I’d suggest. One is to offer to chip in when you visit, or offer a particular time when you could come by for an hour to help clean, sort, or whatever. If there’s money to pay for extra help, you might say, “I have a great cleaning lady / gardener / handyman I think you would love; I’ll leave the phone number for you,” or offer to make the call. (Word to the wise: My 82-year-old mom refused help from her church, though her eyesight was so bad that she couldn’t see the dirt. She was too proud to have a “stranger” come in.) If things have gone beyond needing just a little help, it’s time to address finding a new and easier home environment; this is especially true if memory becomes an issue. Bring up these kinds of conversations far in advance of when a move or change is needed. Sometimes parents don’t feel comfortable with their adult kids “nosing through the checkbook” or changing things in the home, so a good way to begin this is to offer to help in small ways so that the parent (or friend) feels safe with your participation. We all love our homes to be bastions of privacy and safety. Abrupt changes are especially unsettling the older we become.
Some things about aging are welcome: the freedom from a full time job, or having time to read or see friends more often. But physical difficulties will come to all of us, and they always feel they’ve come too soon. Your gentle non-invasive inquiries about someone’s needs will likely be welcomed and generate a closer relationship!
Francine Falk-Allen, Author of No Spring Chicken: Stories and Advice from a Wild Handicapper on Aging and Disability, and Not a Poster Child: Living Well with a Disability—A Memoir
https://FrancineFalk-Allen.com
www.Facebook.com/francinefalkallenauthor
Travelling with Your Wonky Knee or Other Testy Body Parts—Five Tips
It won’t be long before the pandemic will be far enough behind us that we can at least travel in the US. Fingers crossed! My husband and I are thinking we’ll look for places that have reached very high vaccination rates or low viral incidence within a local population; New Mexico and Hawaii are starting to look good. And speaking of research, when you can travel again, the first thing I recommend for the physically challenged traveler is:
1. Research the place you’d like to go. It may be that you have always wanted to visit a setting that has looked lovely in pictures, but further research may tell you that it’s a very hilly area, and that most of the accommodations are two-story bed and breakfasts. This is fine for someone in tip-top shape, but I have had a weak, partially paralyzed leg from polio since childhood, and I have learned that there are many places with elevators and flatter terrain that are easier—and more fun—for me to visit. I recommend using www.TripAdvisor.com (I’ve placed a lot of reviews there myself) and Lonely Planet’s free accessible travel guides, https://shop.lonelyplanet.com/products/accessible-travel-online-resources-2019 (no later version available). Rough Guides are also very good.
2. If you have walking difficulty and are flying, and do not have a scooter you’re going to be bringing along, arrange with the airline to have an attendant push you in a wheelchair to the gate, and another to meet you at the other end to take you to baggage claim. Do not be proud! If you think you will be embarrassed, that’s better than being exhausted or in pain by the time you get to your destination. Be sure to tip each attendant; generally around $3-$5 is appropriate. Most airlines will let you arrange for a wheelchair online; if not, call in advance or arrange this when you check your bags or check in in person at the airline counter. Allow extra time; attendants can take twenty minutes to arrive to pick you up. If a slow walker, always allow at least ninety minutes between connecting flights. And reserving a scooter with an equipment rental facility at your vacation spot might turn out to be the best decision you ever made; use it for longer distances, then stop and walk around a bit when you’d like.
3. When reserving your hotel, if you have walking difficulty or fatigue problems, ask for a room that is not at the end of a hallway. Tell them you have a disability, even if you do not think of yourself as disabled. It’s OK to think of a hip that needs replacing or a very arthritic ankle as a disability, and the Americans with Disabilities Act (ADA) requires hotels to accommodate those who ask. An ADA room will always be closest, but, they are set up for wheelchairs, and the room will be sparse of furniture, have very low clothing poles in the closet, and have a roll-in shower with no tub. So if that is not what you want, ask for a room that is NOT an ADA room but is as close as possible to the elevator. Confirm a day or two before arrival that the hotel has noted this. If you or Dad are in a wheelchair but will want to use the pool, make sure it is accessible; some hotel pools I’ve used are accessible and some are not.
4. Check out a few activities well in advance; if you need to get concert tickets and don’t want to climb stairs to your seats, arrange to get first floor seating ahead of time. Most museums now have wheelchairs available for your companion to push. (Easy, as long as there are not steep ramps such as at the San Francisco Academy of Sciences! Use their elevator instead.) If you’re on your own, a manual wheelchair may be too difficult because they require a lot of shoulder power. Be ready to let a few activities go, rather than over-tiring yourself. Companions of older or less strong travelers should be aware that jamming a day with one wonderful event after another may not turn out to be so wonderful. Leave time for spontaneity and just sitting in a scenic park with a cuppa.
5. If someone offers to take you on a vacation, even just a day trip, take him or her up on it. Again, I emphasize, do not be proud! Please don’t think or say “It will be too much trouble.” It may be a little trouble, but what great experience you’ve had was not worth a little effort? When you are at an exhilarating outdoor concert, or watching birds on a beach, it will have been well worth packing up and letting someone assist you.
Getting outside, even around the neighborhood to see trees in season, is known to refresh our bodies, minds and souls. If actual travel is not in the cards for you in the near future, there are lots of travel videos available, more now than ever since we’ve all been stuck at home for a year. Here are a few good (free) substitutes for actual travel, and I’m sure you will find lots more online. https://goldencarers.com/armchair-travel/; www.RickSteves.com/videos (Europe), and Google Arts and Culture, The Hidden Worlds of the National Parks (and more) https://artsandculture.google.com.
Francine Falk-Allen, author of No Spring Chicken: Stories and Advice from a Wild Handicapper on Aging and Disability, and Not a Poster Child: Living Well with a Disability—A Memoir
https://FrancineFalk-Allen.com
www.facebook.com/FrancineFalkAllenAuthor
Francine Falk-AllenTell us about your new book.
No Spring Chicken addresses what we all face eventually: aging and the physical difficulties that can ensue.
I’m a polio survivor who knows a thing or two about living with a disability, and offer my take on how to navigate the complications aging brings with equanimity (and a sense of humor). Part I is a jaunt through accessible travel pleasures and pitfalls; Part II addresses the adaptations caregivers can make for a mutually rewarding relationship with their loved ones, plus advice for physically challenged and aging persons themselves regarding exercise, diet, pain management, mobility, care tips and more; and Part III discusses the rewards of engaging with support groups sharing similar issues, with a little activism and advocacy for good measure.
I’m told it’s accessible and wryly funny, and is a fun and informative guide to living your best and longest life―whatever your physical challenges, and whatever your age.
What inspired you to write it?
Well, again, I have a lifetime of experience to share about how to take care of oneself with a physical challenge, handicap or disability, and enjoy life as much as possible at the same time. I thought it would be useful to those facing the later years of life, or even younger people with a disability, or family and friends who are perhaps stumped about how to face their loved one’s challenges.
What is the one aspect that you hope readers learn from it?
I hope they take away that there is almost always something we can do to improve at least one aspect of our condition, if not many, and to keep functioning as best we can in order to enjoy whatever opportunities present themselves to us.
As family members age, what should we keep in mind?
That they are the same people they have always been with the same needs and desires, and they want to keep participating in life to the extent possible. Also, generally, aging people could use a little or even a lot of assistance, but most of us hate to ask, and only ask when it’s a dire necessity. There are exceptions of course, but most people I know prefer to be as independent as possible. So chipping in more than you used to without an air of “You should have asked me for help” or “Mom, you aren’t keeping your house clean enough anymore” is likely to be appreciated.
What adaptations should we make for our loved ones?
Ask what is most needed rather than assuming we know. Remember that walking can become more difficult and think about what you can do to make this accommodation. For instance, renting a mobility scooter for family outings or vacations can allow Grandma or Mom to participate fully. A friend surprised me with this on a vacation in Hawaii and it made all the difference; I had a much better time since I could not walk the long distance to the beach or even to the pool in the complex, and it was helpful when we went shopping as well.
You have traveled many places as someone living with a disability. What are your favorite places to travel?
Ooh, there are so many great places. I love Maui, Hawaii; Edinburgh, Scotland; New Orleans, LA; Butchart Gardens on Victoria Island, BC, Canada; Kilkenny, Ireland; New York City, NY; and of course, Paris, France.
What do you look for when deciding on a vacation spot?
My husband and I both like places with beautiful scenery, and/or perhaps some culture such as concerts, or music clubs. We sometimes go to museums as well, but find that we can only do a couple of hours of a museum before we start to feel overwhelmed. We also are very interested in history and the culture of the people in the area we visit, and we like places with very good restaurants. (I start to feel ill if we eat too much fast food or simple carbs.) We sometimes plan a trip in order to see friends or family, also. For getting around, there have to be paved walkways for my scooter, or we take a lot of cabs or rent a car. I cannot go for long walks, but like to go places where I can scoot around, and then get off the scooter and walk a bit and see things up close, or sit in a park or on a beach and read. Sometimes I paint a watercolor, so I appreciate a really nice view.
With regard to lodging, my first priority is that the hotel is easy and either has an elevator or is one-story, since stairs are very difficult for me, and also has food service in case I’m too tired to go out. Next would be that if there is not a restaurant in the hotel, there is one next door! And I always try for a place with a warm accessible pool if possible. I always call ahead to make sure the staff does not put us down a long hallway, because then sometimes I may be able to go to the lobby or restaurant without needing to use my mobility scooter.
Share some of your favorite self-care tips.
I do a little yoga and core strengthening every single morning, and I do pool therapy a few days a week. Stretching and keeping up what strength you have is important in order to stay mobile. I also avoid eating large amounts of simple carbohydrates (basically, white foods!) but I do try to eat a large amount of vegetables! It’s important to keep weight down, or to at least not become obese, to avoid or keep in check joint pain, heart disease, diabetes and cancer. And of course all that helps just to assist yourself in feeling great so that you have a positive attitude. Also, I rest regularly, and sometimes take a little nap, and get at least six or seven hours sleep every night. I think meals or tea dates with friends, reading good books, watching inspiring movies and spending time outdoors are also great ways to reduce stress and increase a feeling of peace and well being.
Do you have any advice for someone who wants to be an activist?
Look for others who are already activists in the issues you care about. Someone has probably already got a group going and would love your participation and assistance and perhaps your knowledge and experience. If you can’t find that, you can start a group; I describe how to do that in my book. If you are housebound, you can research on a computer and stay informed with news on PBS and other reliable channels, and there are websites you can access which recommend what actions you can take, such as signing petitions or donating money, or making phone calls. Some groups will continue meeting on Zoom now that that is established. I am on an Americans with Disabilities Act accessibility committee in my town, which has met via Zoom during the pandemic, and I started a polio support group some years ago.
Anything else you would like to add?
I truly hope people will buy and enjoy No Spring Chicken, or ask for it at their local library, and suggest it to their friends and family. If they do, it’s helpful to the success of any book, especially for someone who is not a celebrity author, to leave a very good rating or review on Amazon, Goodreads, Barnes and Noble or Walmart’s book review pages. Do remember that anything less than four or five stars is considered poor, though, by the algorithms that run those sites.
Even if people don’t read either of my books (my first book was Not a Poster Child: Living Well with a Disability—A Memoir, about growing up with a disability and navigating the world as a women with a disability), I hope that everyone who has physical difficulty is finding ways to keep on enjoying life! That’s what I’m intending to do. Later this year, we’re hoping to visit someplace like Hawaii or New Mexico, where there is a high number of vaccinated people and a low incidence of the Covid-19 virus.
Happy trails to all!
