My size 6 feet may be a lot smaller than my husband’s shoes, but I’ve been like an appendage to him since the onset of his illness, and I can safely say that I’m wearing his shoes through this journey.
Besides the fact that I am an empath – HSP personality , with a deep awareness of other people’s pain and emotions, I’m also somewhat of an investigative FBI, – not technically, but my husband often refers to me as one. It’s in my DNA to get to the bottom of the cause of every situation.
I’ve made it my business through the decades, facing illness, my own and family members’, to learn about diseases, pharmaceuticals, symptoms and cures, by reading numerous medical journals, subscriptions to health magazines, and years of discussions with my brilliant Naturopath. I have rapports with many doctors from past and present. I’m not afraid to share the things I understand with them and ask questions, and when it comes to my husband, as his advocate, I chase down doctors, get them to collaborate with one another by sharing what each of them deducted with other doctors on the case. I take him to every test, scan, and have been his full time nurse in hospital.
My knowledge, and respect for the medical care staff reward me with privileges I sometimes take liberties with, thus allowing me to follow my husband directly into procedure and operating rooms, until it’s time for them to do their job. I give them background information they may have overlooked, remind them of his allergies and medications, and kindly request that I can have a word with them after the procedure before having to wait for results.
Why do I do these things? Of course I do them to make sure my husband is getting the best care, but in today’s medical world, sometimes things can go awry.
With our health system declining from too many cutbacks, far away from what it once was, there’s a shortage of doctors, nurses and time. As a micro-manager, I like to do my best to keep on top of everything and try to get information as best I can. Backlog of patients waiting for tests, delays in receiving results, getting to some resolution of illness, can all take much longer than the ‘g-olden days’.
I’m writing this article to spread awareness. Yes, I’m also sharing some personal updates about my husband, but I feel that’s only fair to all of you readers and friends here who’ve been so supportive of me through this journey. But I’m also sharing the things I do to keep the proverbial ‘ball’ rolling in his case. These are things that some of you may not be aware of with your current health care systems, and blessed to not have to encounter them.
I see things all the time in the hospital. I observe. I see patients alone in their rooms with no visitors – sometimes all day. I see vacant halls sometimes with no nurse in sight. I hear patient’s buzzers going off and moaning for what can seem like an eternity to them before someone responds. I know when patients have been sitting in a soiled bed or diaper for a length of time because the stench through the hallways is a good indicator.
I was quite aware that I was the only one walking up and down the corridors, waiting to catch a doctor, after asking nurses approximately when he’ll visit our floor. I learned when the best times were to make requests and where to find the nurses when I had a concern. I learned how to ‘shop’ as my sister so kindly taught me while she stayed at my side.
The point I’m trying to make here is that when a loved one is ill, and/or elderly, and doesn’t understand legal jargon, and has nobody to advocate for them, they become one of many patients waiting for their turn, waiting to get fixed, waiting to go home. They are at the mercy of ‘time’ and if they know no better, just do as they’re told because that’s what they’re instructed to do, and they have no choice but to put their faith in what they’re told without questions.
- We need to speak up and ask questions. We need to ask about medications and their conflictions with other meds.
- We need to offer information about underlying issues that doctors may not be aware of because the patient forgot to mention or was unable to.
- We need to know what to expect during the healing process.
- And most of all we need to be there for compassion, support and encouragement.
I couldn’t turn off my brain on countless nights my husband was in hospital after feeling guilty leaving him late at night, knowing I had only a few short hours to sleep before getting up early to be back there by 630am. I worried he may not be able to reach the cup of water I left as close to the bed as I could without hampering his path to be able to get up with his I.V. pole and try to get to the bathroom. I worried that he may be stuck in a blood-soaked diaper for too long before someone could help him change. I worry about everything.