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.
I know some of you may not be interested in reading long posts, nor be interested in all of the details of my husband’s illness. But for those of you who would like to follow the mystery of this journey and learn how I made my own deductions, kept on the doctors with insisting they do certain tests, and how I keep the ball rolling, you can click HERE to read more.
But for all of you, I’m making a list below of some of the methods I’ve learned to keep on top of my husband’s own medical situation, which you can take as pointers which may help you if you’re ever faced with an unfortunate illness yourself or with a loved one.
Nurses are not authorized to give anything – food or medications – to a patient without the doctor’s permission.
A good example here is: When my husband was given blood transfusions, after every bag of blood, he had to have blood work done to see what number his hemoglobin was at to determine if more blood was needed. If more was needed, a whole day went by before the doctor would visit and authorize another bag. After round one of this method, I asked the nurse if she could page the doctor and have him order the blood be taken after a bag was finished, and authorize the next bag if the number wasn’t high enough, instead of waiting all day. The nurses are very accommodating when they see you are there all the time helping out, and making their job easier.
Shopping in the hospital is a hunt to gather supplies the patient requires. If you learn this art, it will save you waiting to ask a nurse, and then for her/him to finally have time to get these items for you.
For example: Pillows are hard to come by in hospitals; not every bed gets one. Go for a stroll down the corridors, look for an empty room, and grab one off a bed. Then don’t forget to change the pillow case with a fresh one from a cart in the hallway.
Staples you may need can be found on various carts in the corridors. You will find wipes, masks, clean hospital gowns, towels and linens, on these carts.
Help yourself to what’s needed for the patient, without having to bother a nurse. You may have to ask for diapers, as I did, but with every nurse change, I asked for a few more and stockpiled them for when needed so I wouldn’t have to frantically look for a nurse every time we needed one.
Also, those blue paper booties come in handy for the patient. My husband’s feet were (and still are) very swollen, his slippers were tight and hard to get on and off, so he was happy to keep the booties on his feet for his mad dashes to the bathroom.
Learn where the pantry is located. There you will find things like paper cups, an ice machine, little containers of juice and jello, and gingerale. These items are there for the patients.
Pay attention to the doctor’s usual schedule for making appearances. This is important when you are awaiting test results. The doctors usually make their rounds early in the morning. If you miss their visit, you’ll have to wait till the end of their day before they come back. This is why I was there at 630am some days when I was waiting for the previous day’s test results. The doctor usually showed up around 7am, so it was imperative I was there. If you have any other concerns and are not expecting the doctor, you can ask the nurse to send him a message.
Learn the standard tricks of the I.V. pole. Many times you will hear it beeping. The beep is annoying and of course, a nurse can be awhile until she can fix it. It’s an alert that possibly the I.V. line is strangled and not dripping, or that the fluid, or blood bag is empty and may need replacing. The machine will usually read out the problem. You can untangle the line, or alert the nurse that the bag has finished and clear the alert by pressing the restart button yourself.
Are you aware that you are entitled to a copy of all tests, and reports from doctor office visits and from hospitals? I make it a point to get a copy of every report when I leave a doctor’s office and the hospitals will give you copies when a patient is released. You can then make copies of all documentation to have handy for further doctor visits to hand him in case he hasn’t received them to update him. And I’d advise that you open a file with all these records for future need.
I do the same with requisitions from doctors.
For example: When I took my husband to the lab to have more blood work done the other day, I noticed that the specialist doctor we visited prior, who ordered it, hadn’t checked off the box to ‘CC’ my husband’s regular doctor. That would mean when we go back to him in a few days, he wouldn’t have the results, which he’d have to call in for, which would leave me still not knowing what they found until a next visit. So when we got to the lab, I requested that the results also be copied to our doctor. We signed a form to authorize the information to be shared, and then I could rest assured when we went to the appointment, the doctor would have the report.
Process of Illimination
I noticed after the return home from the second hospital visit, when my husband took his pills, within 10 minutes he got very dizzy. This happened for 2 days in a row and I was concerned and didn’t want to wait the few more days until his check up appointment. I had to figure out which of the ‘new’ pills was causing it. So the next day, I told him to leave out the new stomach pill for a few hours and see how he felt, he was still dizzy.
The next day I told him not to take the diuretic for a few hours, and again, he was dizzy. I knew the culprit and it wasn’t the new meds. I went over everything in my head, and remembered in the hospital his blood pressure went to normal instead of high because of his low hemoglobin. They didn’t give him his pressure pills in hospital.
I had an inkling that he came home and began taking his pressure pills, these were bringing his pressure to low, hence, the dizziness. The next day, I stopped his pressure pills, and he didn’t get dizzy. Later that day I took him to his regular doctor for a check up and discussed my findings. He commended me on noticing and finding the problem and advised me to keep him off them until at least next check up when he’d check the blood work to make sure the hemoglobin was going up.
Now this is a commonly overlooked situation when too many doctors are prescribing. One doesn’t always keep up with what’s currently going on, and people can end up taking too much medication.
These are just a few handy tips I can offer from my own experience, which can help make it easier for both the caregiver and the patient should the situation arise. I hope you should never have to experience illness, but it helps to know the ropes.
I’d like to thank you all again for reading, and leaving me such wonderful and encouraging comments. My husband’s journey still presents quite a few mysteries, which a team of doctors and myself are working diligently to solve.
I’m attaching HERE a detailed journey of when this all began, symptoms, tests, status report, and results so far, for those who’d like to read. Sometimes an answer is not so simple. And often, when the immune system is compromised, it can set off a chain of events from underlying issues – this is especially common with senior patients.
It’s up to us as caregivers to stay on top of issues, and to be proactive in keeping the doctors updated, and requesting that information is shared with all other concerning doctors to help move the process along. Don’t be afraid to use your voice. We learn by asking questions.