Caring For A Chronically Ill Parent At Home


Mamma became seriously ill, seemingly overnight, one September Saturday, 2009. She seemed lethargic for a full day. Then again, she had been on some serious pain medication for many years, for the chronic pain of severe osteoporosis, with its debilitating bone deformations (she had severe kyphosis of the back). And she only weighed about 90 lbs., on a good day. I kept checking on her, feeling something was terribly amiss. She finally roused at about 10 p.m., got up, and agreed to go to the hospital. By 3 a.m., in the ER, she was back to her normal self, laughing and joking with my then-7 year old daughter. Indeed, she felt so good that she and my daughter were gently teasing me about my propensity to worry about them, to over-protect. My DD (Darling Daughter) and I left then, after the doctor on duty said that she seemed all right but that the hospital would keep her overnight for observation. At 6 a.m. the picture changed drastically: my mom was in multi-systems failure, on a ventilator, in intensive care. The doctors did not hold out much hope.

But, miraculously, she recovered after a tracheostomy and three weeks in ICU; she was sent to a local rehab hospital (Youville Hospital, Cambridge, MA, now Spaulding Rehab: www.spauldingrehab.org) where she recuperated in record time: in less than a month she had been de-cannulated and sent back home. We had a glorious Thanksgiving with my brothers, their wives, children, my cousin and her family, and good family friends; we were all truly grateful that the worst seemed to have passed. We had a normal Christmas, with Mamma coming to our house to sleep over on Christmas Eve and Christmas Day. We played DD’s “Game of Life,” a Santa gift, until 10 o’clock that night (DD won, in spite of not having gone to college, Mamma came in second place, and I lost…what else was new?!). Everything changed again, never to be the same, by mid-January 2010. She was not only cannulated again, she would never be able to live without a trach. She required the help of a ventilator by night and constant oxygen by day, just to be able to get up, wash up, have breakfast and perhaps a chat or two with family. In the hospital, she had also acquired a severe colonization of MRSA – a resistant staph infection – where? Where else but in her lungs, her weakest point. But both she and I felt she had some more time left on Earth, on this plane. So, we set about returning her to her own apartment; she had lost so much physically, ceded so much control of her life to her disease that she really needed to be in the environment she had created and controlled for so long. 

Bringing her home was not easy. We had chosen the specific rehab hospital – Spaulding in Cambridge (formerly Youville) – precisely because they were the only ones who didn’t think we were crazy to want to bring her home, with vent and other respiratory equipment. In fact, they set everything up through a home respiratory company (New England Home Therapies, which I highly recommend! http://www.nehtinc.com/) and Mamma’s insurance. My brothers and I became amateur respiratory therapists, checking the vent equipment nightly, “plugging” Mamma in every night, suctioning her regularly, and amateur RNs, performing wound care, trach care, checking Mamma’s vitals, counting and giving her meds. We received valuable help and training from her doctors, the vent company, the nursing agency that gave me (and my daughter) respite during the week by sending vent-certified overnight nurses who grew to love Mamma as much as we did, who became family, the visiting nurses who supplied physical and occupational therapy, the senior care agency who found us a transport chair and even a pulse oxymeter for home use, from friends and family.

There were times when I felt like pressed monkey meat in the middle of a sandwich, bouncing between Mamma’s needs and DD’s needs, with no real time for my own. But it was worth it.

Mamma lived at home for another nine months, infection free. It was a reduced life, and her illness took center stage, but she was mentally fully present. Those “extra” nine months were a gift.

This post is to give all those other Maddies (or not Maddies) out there heart and courage: if your ageing parent becomes ill and wants to stay home, fight for that right. Make all the phone calls you need, tell your sob story in intricate detail to absolutely anyone and everyone who will listen, and you will find the resources you need…they are out there.

That is what I did…and it did take a month of phone calls (almost eight hours a day of calling one agency, then another, being placed on hold, telling the entire story, over and over again). It also took looking at some negative case managers straight in the eye and telling them my “pie-in-the-sky” wish list for the services Mamma needed, and enduring their incredulous stares and comments of “You’ll never get any of that.” I did receive most of my “pie-in-the-sky” requests.

Persistence and faith pays! And, remember, if you don’t ask for it, you really will never get it! If you do ask, well, the worst anyone can say is, “We can’t do that.”

Peaceful parenting!

The Original Maddie!

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