While I understand the desire to be totally self-reliant and not dependent on other people, the reality is we are all a part of many systems in our modern life. Emergency preparedness for people with special medical needs and special dietary needs got me looking for more detailed information back in 2020 and despite my criticisms here and there of some online prepping advice, overall I have learned a great deal from the YouTube prepper community and the homesteading community. Although these are two separate communities, there are some overarching topics between the two and both communities push learning to be self-reliant and learning more skill sets.
Everyone’s got to have water, food, clothes, shelter, but if you or a loved one have special medical or dietary needs, emergency preparedness becomes a lot more complicated. Despite my desire to always try to be as self-reliant as possible, in 2020, I realized just how challenging life could be during an emergency situation with my husband unable to even get out of the bed hospice brought and needing assistance with everything. Many days he couldn’t even sit up in bed without help. I’m going to explain some challenges and some of the things I learned and some things I probably should have done differently.
First and foremost, many preppers talk about go bags or bug out bags, which is a bag that has emergency supplies for each member of the family in case you have to evacuate your home. There are many excellent videos and information online on things to consider packing. If you or a member of your family require special medical equipment or a member in your household has mobility problems, the basic bug out bag will not be adequate and neither will the get-home bag, preppers recommend you have in your car. Often people with special needs require a whole lot more equipment and necessities than can fit in a bag.
Before my husband was on hospice care, he had been dependent on a walker for several years and then a few years before hospice care, he had become almost completely wheelchair-bound. He could take a step or two with the walker to get him into the wheelchair some of the time, but at other times he needed assistance to get on his feet and move at all. So, even leaving the house required some prior planning. Going anywhere by myself also required prior planning, because he could not be left home alone due to dementia and mobility problems. I had to arrange grocery shopping or my doctor’s appointments so that my son could be here with my husband.
If you or someone in your home has special needs, it’s going to require thinking through some emergency preps beyond the basic bags and supplies. If the special needs involve home oxygen, medications that require refrigeration, and other special arrangements, this creates an even greater need to think through how you would handle an emergency evacuation from your home and leaving your vehicle, to set off on foot, might not even be a possibility.
Watching unfolding emergency situations closely in your area becomes imperative and you might need to contact officials in your area for advice or assistance, depending on the situation. You definitely can’t be a lone wolf type prepper if you’re dealing with special needs.
Hurricanes are a common weather emergency where I live and we dealt with one hurricane evacuation a few years before 2020. Once the weather reports put us in the cone of uncertainty, I started thinking about plans to evacuate and did not hem and haw. I coordinated with other family members and I needed my two sons to help me with my husband and the pets. We evacuated early and did not wait until the last minute.
My husband was put on home hospice care in late January 2020 and at first there were 3 nurse visits a week and 3 CNA visits a week to help with his care, but once the pandemic craziness started things changed quickly. The CNA visits stopped completely and the nurse visits went to one home visit a week and one phone visit. I felt overwhelmed with that level of caregiving required for someone completely bed-bound, but the hospice nurses were very willing to offer advice and suggestions, plus they had a 24-hour number and a nurse on call for emergencies, which I did have to call one weekend.
One day the power went off during an afternoon thunderstorm and it was off almost an hour. My initial thought was, “Oh shit, what am I going to do now,” but I took a deep breath and calmed down. My husband was on home oxygen, so I switched him to one of the portable tanks of oxygen and I began monitoring the power company’s outage app on my cell phone, to follow when power was expected to be restored. Another time, late on a Sunday night, the oxygen machine started beeping loudly and it died. I called the emergency service number on the machine and the man from the medical supply company arrived within an hour with another machine.
There was also an afternoon of bad storms, where we were under a tornado watch and I spent hours sitting by my husband’s bed pondering how on earth to get him to the main bathroom if a tornado hit, because that’s the safest space in our house. I kept looking at the window in the room and wondering what would be the best thing to do if a tornado touched down. I messaged one of my daughters, who lives in another state, to see if she had any ideas, because I was thinking perhaps if I put a blanket on the floor, I could slide him off the bed onto the floor and pull him to the bathroom using the blanket. My daughter suggested getting him on the floor and covering both of us up with a blanket and the mattress from the hospice bed. Thankfully, no tornado touched down.
The pandemic craziness brought shortages in stores, which I had never even thought about happening in America. Prior to this I did not pay close attention to how much medication we had on-hand, I just called in a refill when my medicine or my husband’s began to look low. I began paying close attention to both my medication and my husband’s medications and supplies. My doctor gives me a 90 day supply, so if you can get a 90-day supply it is important to try to keep as large of a supply of your prescription medications as possible. I also refilled my prescriptions as early as possible. I coordinated with the hospice nurses and they used FedEx to deliver my husband’s medications the next day.
With all the supplies that hospice ordered and our insurance covered, I also found these supplies online and ordered extra and paid for them myself – from chux, to wipes, to depends, etc. If you have over-the-counter medications or medical supplies you use regularly, it’s best to build up a supply now, if you haven’t already done that, as shortage situations are increasing again and the political and world situations are entering a very uncertain time.
Talk to your doctor about concerns. Talk to family members and friends about your concerns or special needs, whether it be medication, equipment, help with tasks around the house, and especially talk about and ask for advice before there’s an emergency. Make sure they know details about your situation and if you’re unsure about your planning or how to handle situations seek out help and information.
There’s even professional information on YouTube. I found a YouTube channel, Dementia Careblazers, an invaluable source of information on caring for my husband and dealing with many of the challenges, especially the year he was on hospice care. Many times when I was at my wit’s end dealing with some of my husband’s difficult dementia behaviors or bewildered with it, Dr. Natali’s videos helped me figure out how to cope with it and find strategies that helped. While this information wasn’t emergency preparedness information per se, it sure helped me understand the special needs involved with dementia.
While all the basics of emergency preparedness apply to people with special medical and dietary needs, it’s really imperative to put extra focus on the special supplies and assistance you will likely need in an emergency situation and think ahead as much as possible. With the world situation and a trucker’s protest set to begin in the US in a few days, this could lead to more shortages or disruptions in shipping and availability of supplies.
I strongly encourage anyone with special medical or dietary needs to sit down, take inventory of those supplies and make a list of items to stock up on.
Being diabetic, storing 50 lbs. of rice won’t work for me, because rice shoots my blood sugar sky-high. What I’ve been doing is working on losing weight, working to keep my blood sugar under control and while stocking up is a little more challenging, it’s not impossible. I have a lot of frozen vegetables and items I do eat stocked up. I also have canned goods and a couple years ago I started dehydrating a lot of vegetables. I hope to grow some fresh vegetables of my own this spring and summer, but if that doesn’t work out as planned, there are many local farmers nearby, farmers markets and also some farms in the area do “pick your own,” where you can go pick vegetables or fruit at their farm. I’ve picked blueberries here many times at a local farm.
Try to think about and figure out more options for your specific situation and I believe the most important one is sharing your concerns and talking them over with family and friends and don’t hesitate to seek out more information or advice, if you’re not sure what to do.
Ask lots of questions rather than sit and worry or let yourself feel overwhelmed. This is something that took me some time to get used to doing, because I like to think of myself as independent.