Written By: Rudi Lamy, MLS, MAS, Consultant to the Peter Lamy Center on Drug Therapy and Aging
An Unexpected Turn of Events
March 19, 2018 (4:00 a.m. EST): I am awake and screaming — SCREAMING — in unbearable pain. I was diagnosed with Crohn’s Disease almost 40 years ago, and although I have been lucky so far, it appears that my luck has now run out.
I am transported by ambulance to the nearest hospital, where it is discovered that I have a stricture (or narrowing) of the terminal ilium. Seven months of medical therapies, including steroids and antibiotics, had not helped. Now, a complete blockage has formed. My prognosis: emergency surgery (i.e., a bowel resection, or anastomosis).
And, just to put a cherry pit on top, I learn that the 5 millimeter (mm) stone in the bottom of my left kidney has grown to 9-10mm and, at that very same time, the same kidney was attempting to pass a separate 2.5-3mm stone.
Later, when the surgeon opened me up, he discovered another interesting addition to my colonic adventure: an abscess. What’s that old saying about raining and pouring? To make my surgical situation more interesting, the procedure could not be done laparoscopically!
I am an inpatient at the hospital from March 19-30. While I have medications to help with nausea, pain, sleep, and anxiety, none of them help me get discharged any faster. Instead, it all serves to greatly interfere with my responsibility as caregiver.
I am now a caregiver who cannot care for my loved one physically, mentally, or emotionally. I must now cede that responsibility to others, and do so without prior planning.
Too Many Cooks in the Kitchen
As an inpatient, there is no way for me to get home to care for my wife. Because I can no longer be in charge, I turn to our family, friends, and home care workers to ensure she receives the care she needs. However, because I’ve never established any written standards for my loved one to live by — no set times for meals, medications, sleep, etc. – it quickly becomes an issue of “too many cooks in the kitchen,” each trying to do what he/she believes is best for my loved one.
Although I extend my most heartfelt thanks to everyone who helped take care of my wife while I was away, I would be remiss not to acknowledge that, due to my sudden illness, there is now a complete lack of stability at home. And, if there is anything a patient with dementia needs, it’s stability. She counts on me to be the rock that her life is anchored to, and I am not there. There are many faces — some familiar, some not — and a great deal of commotion, but the one person she needs — me — is simply not there.
Instead of her familiar and stable environment, the caregiving is done by a committee, and the committee has neither a chairman nor secretary. There are no clear instructions, written or otherwise, for the “emergency” team of caregivers. This, in great part, because my head is neither clear nor there. And, without concentrated attention to the everyday detail of caregiving, the inevitable happens: she becomes subject to serious delusions and has to spend a night in the nearest emergency room.
Hindsight is 20/20
Having gone through this experience, I have one piece of advice to other caregivers who might be reading: get your plans in order and get them in order NOW! If you do not, I can guarantee that you will be subject to an emotional pain equal to or greater than the pain that caused me to be away from home at the very instant that I was needed most.
To help you get started developing a back-up care plan for your loved one, I recommend taking the following steps:
- I.C.E: Make sure your “In Case of Emergency” list is up-to-date. Keep a copy in your wallet AND ensure that one is also easily available at home.
- Who’s in Charge: Make sure everyone knows who is making decisions for you and your loved one when you are unable to. You need to appoint one person to be in charge while you are away, indisposed, or deceased.
- Your Home Care Agency: Start a relationship with a good home care agency. And, be sure they have clear and written instructions to help them care for your loved one.
- Keep in Touch: Try to stay in touch with the people caring for your loved one as best you can. Something might go wrong, and they will need you.
- Don’t Forget Your Attorney: You may need to reference a power-of-attorney or an advance directive.
Expect the Unexpected
Once you have recovered from your experience, do not be surprised if life decides to throw you another curveball. While having my sutures removed, I had the following conversation with my doctor:
Doc: “By the way, did you know you have a hernia?”
Me: “Sure, it’s a hiatal hernia. I’ve had it for decades; it doesn’t bother me.”
Doc: “No, you have a hernia in the groin.”
So, now I need to have another surgery. JACKPOT!
Isn’t life grand? Do as the Scouts say, and always be prepared.
Thanks for reading.