Three Cheers for Rollators, Oxygen Concentrators, the Internet, and Friends
Twelve hours was all it took for my cat, Mittens, to discover how much she loved being rolled from room to room on my rollator, her new favorite perch. Apart from an entitled cat, the rollator carries papers and books, food and drink from kitchen to dining room, and offers a support and place to rest when I feel tired or dizzy. So although I can now walk the length of the house fairly confidently, a big improvement over three weeks ago, I shall continue to rely on the rollator for the foreseeable future.
The oxygen concentrator, seen in the background of the photograph, is a big black box that takes oxygen from the air and delivers it to me via a fifty foot tube ending in the two pronged cannula that takes it right into the nostrils. I wear this day and night. I am constantly coiling this up and then extending it this as I move about. It’s a little tedious but no one has been able to come up with a better solution than a long, loose, tube, bright green for visibility. At night the faint whoomp-whoomp of the concentrator doing its job is both soothing and reassuring.
If the power goes out (a constant worry in this bad winter), an alarm sounds and I can switch to one of the five oxygen tanks lined up by my stairs. Each is good for about 2 ½ hours at my oxygen delivery rate. Switching involves turning on the tank with the not entirely effective plastic key, adjusting the oxygen rate to my level, and switching cannulas. When the usage meter on the top of the tank goes into the red, it’s time to change the tank.
Luckily I was able to install a whole-house generator. Mega dollars but welcome security.
Those oxygen tanks are also necessary if I leave the house. This is quite the operation. First someone has to load a transit chair (like a wheel chair but with four small wheels designed to be pushed by a helper) and a spare oxygen tank into the back of the car. As important as helping me get around, the transit chair signals that I have a problem to everyone around me.
Then I transfer from the concentrator to a second oxygen tank, this one fitted into a rolling container. My helper then helps me and the tank down the three back steps and along the short path to the driveway. I get into the car. The helper heaves in the tank which I hold in place between my legs. I position the carrier handle over my shoulder (not facing my chest where it could do considerable damage in an accident).
This is repeated on arriving at and leaving the destination and on returning home. Need I say there’s a strong disincentive to leave home.
And yes, I do know that there are portable backpack oxygen tanks that allow more mobility. They may be in my future. Right now my oxygen flow and the high price means I am not using them. Sometime down the road . . .
The internet. My phone and computer keep me in touch with family and friends, with the in-home health people who visit almost every day, and with grocery and package deliveries.
Lots of deliveries right now. The ground floor has to be rearranged to house essentials that I formerly kept upstairs (clothes and medications) and to have everything at arm’s length. So boxes of shelves to be assembled, over bath transfer benches, shower adapters, tops to cover the gas stove (no flames around oxygen), replacement casters with brakes for my desk chair, and dish racks pile up on the porch.
Rollators, concentrators and of course the internet have become available in the last fifty years. The rollator was invented in 1978 by Aina Winfalk, a Swedish health worker who had suffered from polio. Thank you, thank you, Aina. Companies such Union Carbide and Bendix introduced oxygen concentrators earlier in the same decade. They really took off in the 1980s when Medicare began paying a flat rate for in-home oxygen and small companies delivering it sprang up.
I am so grateful for them. It’s the rollator, the concentrator, and the internet that allow me to continue living almost independently. I do have to rely on others for taking out the trash, bringing in heavy deliveries, changing the cat litter, and such tasks. And of course for transport.
A small grumble. I do wish a little industrial design had been used. Since I cannot leave the house, I find it more important than ever that it be as orderly and beautiful as possible. Useful lots of these things are, beautiful forget it.
Finally, there is my oximeter, a simple little box that fits over my index finger and within seconds measures the level of oxygen in my blood and my heart rate. I must use this twenty times a day or more. Oxygen not where it should be means resting. No pushing through, no finishing the job. Resting right then and there.
This, then, is the new reality I am adjusting to. I am writing all this down for my own purposes before it becomes the new normal. I realize that many among you are already dealing with serious health problems or caring for others who need help. My condition, particularly since it is pain free right now, is just one among many, many of which are much harder to deal with. I do not wish to exaggerate it, just record it.
Even so, it’s all rather a shock because just two months ago I returned from a quite splendid solo 2000 mile road trip to New Orleans described in a recent blog. Six weeks ago, as some of you already know, out of the blue I became short of breath, something that had never happened before. Thinking that rest would cure it, I simply went to bed. The breathlessness worsened. I was admitted to hospital where I spent ten days. Then I went on to a rehabilitation hospital for another ten. I have now been at home for twenty days.
What I have is Interstitial Lung Disease, a catch all category of conditions with many, many different causes. I may know more when I see the pulmonary team in mid-March. By then I will be off the necessary but wretched prednisone. My discharge papers make it look as if they suspect the radiation for breast cancer I received a year ago. If the cause can be determined that will guide managing the condition to best effect.
Two final points. I’m now in a light, airy house that I just love. I moved in just six months ago. Whew. It seemed mad at the time since I was still fatigued from the radiation. Thank goodness I did though because it is entirely livable on the ground floor. The bamboo floors (no carpet) let the breathing tube move easily. Separate study, living room, and dining areas mean I have different spaces to enjoy. The spacious porch has a swing, something I have always wanted. In good weather I will sit outside and watch the world go by in this very neighborly neighborhood.
Through all this, I realize more than ever how much my network of family and friends matter to me. Pop in visits from Lexington people are a joy. Texts and emails brighten the day. Free video calling is a miracle. Thank you all and thank you again..
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Provided my energy keeps up, I have a huge backlog of blog posts I’d like to get up. Here are some of them:
Coming to terms with utter strangers. American workers: the hospital view. Oh to be an aristocrat: the bonkers church. The Biafran War. Short Changing Dementia Caregivers. Down the Mississippi, Up the Natchez Trace. The Palladian English Farmhouse: Gentleman’s Residence, Factory, Dormitory, and More. The Scandal of Hospital Food–Again. Water, Salt, Landscape, Food. Cloth in the Kitchen. Grinding Cuisines vs Knife Cuisines
If you care to read these as I post them, great. If not, it should be easy to unsubscribe.
Thank you so much for hearing me out. And all the best to you!
Well, that was quite a lot of changes to take on all at once!
But I’m glad for you because you sound confident and are taking it all in stride!
I’m sure it’s easy to unsubscribe from your blog, but why would I want to miss out on some great reading!
Take care, Rachel!!!
Thanks Maria.
🧡🧡🧡
Wishing you all the best from Jalisco, Mexico. Life brings us changes, and it sounds like you are rising to the occasion. I’m baking cookies right now, and if I could, I would send you some. I always look forward to your posts. Thank you.
Those cookies sound good. And Perhaps now I am housebound I will be posting more often!
So sorry you’re going through all this, but I so admire your upbeat relating of what must have been a life-changing diagnosis. Your road trip sounded inspiring, but I hope you made memories that you can now draw on when you feel low. I do hope the situation improves at least a little once you’ve had your appointment in March, and they may know what caused your condition and know of a way to alleviate it. Yes, such invaluable medical aids have been developed in recent years, though – yes – they wouldn’t win any awards for stylishness! There’s a definite gap in the market! Wishing you better. Nikki
Thanks Nikki. So glad we met before all this happened. And I love your almost daily postings of photos of buildings in areas that I know so well. Something to look forward to.
Glad you’re getting the care you need — though sorry you need the care. My thoughts and prayers are with you. Cynthia
Thanks Cynthia. Looking forward to the next Midwest book.
Dear Rachel, I have thought about you quite often, wondering how you’ve been faring. Sounds like you’re making some tremendous adjustments. Very sorry this has happened to you. Keep on writing, as it’s always a pleasure to read your thoughts.
Thanks Cindy. I will keep on writing. I need things to think about other than rollators.
So glad these adaptations are helping you, Rachel, however inconvenient. They are familiar to me from Alice’s last illness (absit omen!) and from my present normal-pressure hydrocephalus. Your acceptance and hopefulness are admirable and inspiring. “All shall be well, and all shall be well, and all manner of things shall be well.” ❣️
Well, there are moments. Sorry to hear about your past and present experience with these adaptations.
Hello, Rachel! Elizabeth Andoh, here in Tokyo, sending the very strongest healing and energy-reviving vibes possible to you across cyberspace. I admire your strength and sensibility in managing this new stage of your life. The fact that others may have more difficult or severe conditions to contend with does not change your need to cope comfortably with your own situation. It sounds as though you’re managed to create a new routine that allows you to continue working — I eagerly await your future and ongoing blog posts.
How good to hear from you Elizabeth. Glad that you are still writing toom
Rachel, so sorry to hear about your health troubles. Sending best wishes, and looking forward to reading your future essays.
And I am still following you along, Jason. Always interesting.
Rachel,
I wish you the very best as you meet this challenge.
I quote and cite you often. I look forward to reading your thoughts and insights for many, many years to come.
Thanks Ephie. User your votes pop up and I am very grateful for them
Greetings Rachel, from your friends with The Culinary Historians of New York. So good to hear how well you are doing in the face of these health challenges. As the daughter of an active person with a rollator, and an oxygen concentrator, I applaud you!
Keep up the good writing. -Charity Robey
Thanks Charity. It’s somehow helpful to know of the numbers of others using these devices. You’re so isolated in your house that frustratingly you can’t learn from them.
Dear Rachel,
That’s a lot to take in for me; I can’t imagine how much it has meant for you. You sound good, and coping well, and I hope that there is good treatment available. Thanks for the information about the collator; my mother recently got one and it helped her enormously too. We had no idea what to call it.
You’re nearly right Jeremy! Rollator, concentrator–collator.
I’m sending you lots of love, Rachel. I shall email soon ❤️
Looking forward to it.
Rachel, I’m so sorry you have to undergo this demanding treatment but I hope it might work to sustain you and maybe make everything normal, whatever that is, once again. But your post is inspiring and your courage is a model for how to behave in adversity. Thank you for this!
Thanks Nancy. I’m coming to the conclusion that everyone somehow gains courage as they age.
I am distressed to hear of your undeserved health challenge – as if dealing with breast cancer wasn’t enough. It’s obvious that the physical challenges have not impaired your mental abilities, TG!
This is a little something to amuse you the while……
https://phys.org/news/2025-01-physicists-recipe-italian-pasta-dish.html?
Well next time I try this I will be sure to have cornstarch at the ready! Thanks for the diverting link.
Best wishes as you deal with your health challenges. I look forward to your posts and always enjoy what you have to say. Blake Hurst
Thank you Blake. I have so much admired your work.
I sent the link to this blog post to the Eatwordies, who would like you to know that they are thinking of you and wishing you the best. Seems like you have a legion of friends around the world. Your attitude is amazing.
That was such a great group. You still have all their addresses?
Rachel, I am so glad to read this and know what is happening. We must constantly be adapting to new normals, as life changes all the time. But this one is a big one. I remain such fan of your thinking, clear expression and your adventurousness to go to new places, whether Hawaii or Mexico or Kentucky, and your curiosity once there. You have arrived in a new place on so many levels. I look forward to these blog posts you have coming up. xoxo Laura
Thanks Laura. Curious what you are up to these days too.