Should We Stay Or Should We Go Now?

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by Annie Dixon |

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I am old enough to remember when punk rock first aired on the alternative radio station in Washington, D.C. In fact, I am so old, all stations were local then, and we listened to them on actual radios, not phones.

Fast-forward 40 years: Johnny Rotten’s wife has dementia, and my husband has aHUS. The former Sex Pistols singer is currently struggling to balance a book tour with his caregiving responsibilities while we are debating if the time has come to downsize.

‘If I go there will be trouble, and if I stay it will be double.’ – The Clash, 1981

At this point in our lives, we have the usual concerns for aging in place, from falling down the stairs to keeping up with the maintenance. But living with a rare disease brings additional concerns regarding access to specialists, a hospital, and a pharmacy.

We live at the edge of a small town. It is exactly 12 minutes travel time over the back road to the highly rated regional hospital by the interstate. Parking is ample and free, as it is at the nearby offices of the hematologist and the nephrologist. The drug store is on the road back into town, and the pharmacist has offered to deliver on his way home if we ever need him to. So, it is an easy decision to stay in this area, where my husband’s medical needs are so conveniently met.

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Our house is not so practical. We moved here 20 years ago, which is the longest either of us has lived in any residence or town. Our home is lovely and large, private and comfortable. It has fireplaces and porches, a natural spring, and a gorgeous view. It also has stairs to climb, rooms to clean, acreage to tend, and taxes to pay. So, we have always thought we would, at some point, move to a smaller, single-story dwelling on less land.

‘Lying there almost dead on a drip in that bed.’ – The Pogues, 1987

At the onset of my husband’s aHUS, returning home after three weeks in the critical care ward felt both triumphant and uncertain. We were relieved to regain our privacy and recuperate in familiar surroundings. But we worried whether the stairs and the mortgage payments would be manageable. Five years later, our concerns have shifted to whether our age or the economy might suddenly deny us access to the second story master bedroom or to the equity tied up in these old bricks.

Last week, we spotted a listing for a mid-century ranch on a large lot, just beyond the ring road and overlooking a farm. I contacted the agent, who offered to show it to us the next day. We stayed optimistic as we turned up the shared driveway and rode past the first house — until we saw three houses under construction on the adjoining lots, between the porch and the advertised views. There was no reason to tour inside the house.

We apologized for wasting the realtor’s time. But it was a valuable insight for us. Suddenly, this seemingly sensible move made no sense. The heck with prudence; we will opt for solitude and beauty as long as we can. It’s not that we are any more confident about our future now, but we have a track record of powering through tough times in this home. We lived here quietly and contentedly when our life was at its most precarious.

‘Nothing to do, nowhere to go, oh, I wanna be sedated.’ – The Ramones, 1978

Moving is stressful on the young and healthy, and it would be agonizing at our age and in our condition. Why would we do it before we have to? And for what would likely be an interim situation? There will be plenty of time and places to go if we hang on long enough to need assisted living. In the meantime, maintaining our home and lifestyle is a rebellious act that gives us purpose — and keeps us off the anxiety meds.

A lot can change in 40 years: health, energy, perspective, and the interpretation of lyrics. I never thought I would be quoting punk rockers about home and growing old. But who knew Johnny Rotten would be a sweet and faithful caregiver to his wife of over 40 years?

Next thing you know, my husband and I might move into our first-floor guest room and spend our days listening to the radio. I hear Chrissie Hynde licensed a Pretenders song for bumper music on a political talk show. And the oldies stations on satellite play the music we grew up with. If Patti Smith comes on, we may start dancing barefoot.


Note: aHUS News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of aHUS News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to aHUS.


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