WHEN WORLDS COLLIDE: TERMINAL ILLNESS AND PREPAREDNESS

Introduction - As my husband approached retirement age, we started making plans to travel the country. We purchased a small 26-ft. Class A motorhome that could serve as our travel vehicle, as well as an inconspicuous BOV if the need arose. Little did we know that our plans were about to hit a life-altering roadblock.

In 2017, my husband started developing what was diagnosed as carpal tunnel syndrome. He was having difficulty grasping the small electrical components he'd worked with all his life. Surgery was unsuccessful, as was the ulnar release surgery that was recommended next. Off to the neurologists (#1, #2, #3) he went for an EMG on his right arm. Based on that, there was a preliminary diagnosis of MMN (multifocal motor neuropathy), which was subsequently dismissed due to the result of blood tests for a specific protein group. Finally, in 2022, neurologist #4 did a complete upper and lower EMG and diagnosed my husband with ALS (Amyotrophic lateral sclerosis, commonly known as Lou Gehrig's Disease). Prognosis: progressive loss of muscle function ending in death in 2-5 years; not exactly how we had expected retirement to be.

Fast forward to early 2023 - My husband is able to walk short distances, very slowly with a rollator, and has become very weak. Excursions outside our home are rare and often result in him being exhausted. His hands are clawed, and he is barely able to sign his name on a good day. On bad days, I sign for him. The motorhome has become his man cave and will likely never leave its covered carport home. It has become very difficult for him to even pull himself up the three steps to the man cave. I prepare his breakfast, lunch, and dinner plus drinks throughout the day, as he's no longer able to. I take out the trash, backflush the pool, start up the generator every month and his truck (he no longer drives) every week.

Fast forward to December 2023 - My husband had a feeding tube placed on November 30th, and in the problematic process lost his ability to walk short distances or assist with transfers. Now my grocery list consists of whatever I want to eat, since he is 100% on liquid formula. Buying more long-term storage food is also on hold, since the supply I had to last both of us for months is now mine alone. We traded in our truck and got a brand new wheelchair van, which has only left the driveway twice and got scratched once by furniture either being moved out or moved in. It does, however, have a ton of storage room inside in case we need to evacuate for any reason, and is a Toyota hybrid so the mileage is decent at around 36-38 mpg. We bought an adjustable bed, and the house was measured today for a ceiling lift system. Currently I use an electric lift (MoLift) to move my husband from the bed to the bathroom to the living room. He has a very nice power wheelchair that is very uncomfortable (his weight loss left him without padding so I'm working on acquiring different cushions to see if I can get him to spend more time in the chair). All of this indicates that nothing but a wildfire, tornado, or a direct meteor strike is going to find us leaving to evacuate or "bug out". We have everything we need here to make a long-term stand, including a very productive garden.

On the plus side, my husband is a veteran (US Navy Vietnam) and the VA has taken good care of him. ALS qualifies him as 100% totally and permanently disabled, meaning we no longer have to pay property taxes, or his vehicle registration, and he gets a monthly disability check from the VA, which covers any wants and needs that the VA doesn't provide. He was also eligible for housing grants through the VA (SAH and HISA), and a vehicle grant to obtain a wheelchair van. We are currently under construction, with an addition being built to provide a handicap-accessible bathroom, which resulted in me having to move my vegetable garden to another part of the yard.

Fast forward early 2024 - My husband contracted aspiration pneumonia and was intubated at our local hospital. After 10 days, he was transferred to the VA hospital and underwent a tracheostomy. Now permanently on a Trilogy ventilator, the few mobility options we had are almost gone, since travel necessitates installing an inverter that can accommodate plugs for the wheelchair, the portable oxygen concentrator, and the suction machine. The wheelchair has an inverter for the Trilogy. It's a feasible but preparation-intensive means of moving my husband from the house for doctor appointments and joy riding, or to use the pool, which requires hose extensions. Due to the life support equipment my husband needs, we decided to install a 24kw Generac to make sure we would have power for everything. The motorhome, now inaccessible to my husband, is being prepped for sale. Construction was completed and ceiling lifts installed in the living room and master bath. My husband now sleeps on a hospital bed in the living room (in front of the 65" TV), and the living room has become a medical center with all the supplies he needs. Placing the hospital bed in the living room meant moving half of our sectional to storage, along with the coffee table and a lot of other things that would have been in the way. Once the motorhome is sold, a large storage building will take its place in the backyard, and our belongings can come back from the storage unit. On the plus side, my husband has regained 20 of the 75 lbs. he lost, and is now able to eat some foods via mouth, although he's on 24/7 continual pump feed.

What does this have to do with preparedness? Everything! In the event of a natural or man-made disaster, there is nowhere practicable for us to go. My husband can't hike out, can't drive out, and finds vehicle trips very uncomfortable. Our plan to bug out has, out of necessity, been replaced with a plan to shelter in place. Fortunately, I was born into a family of survivalists/preppers, so I've spent the majority of my adult life preparing. We have enough food to last for a year or two, plus I grow vegetables year round in above-ground containers and grow bags (native soil is contaminated with parasitic nematodes) to eat, can, dehydrate, and freeze. Our freezer is packed with fruit, vegetables, and meat. We have freeze-dried food in #10 cans, plus store-shelf canned goods. Everything is inventoried and marked with an expiration date. At the moment, it's all stored (along with the medical supply inventory) in my walk-in closet that's lined with floor-to-ceiling shelving on 2 sides and extra shelving on the third wall. Defensive equipment is all in place and regularly maintained (by me). We have an irrigation well that provides potable water, and a 19,000-gallon salt water pool that could provide bathing and flushing water. A lone 55-gallon drum sits in the garden in case I need extra water for the plants. Extra OTC and prescription meds are always on hand, as well minor and major injury first aid supplies, from bandages to tourniquets to air splints. We are registered with the county disaster planning group in case an evacuation would be necessary, as it would require special accommodations.

Anticipating the need to do more canning, I purchased a digital electric pressure canner (Presto®). As long as the power stays on, this is the easiest way to pressure or water bath can that I've experienced in my many decades of canning. It's almost-but-not-quite set it and forget it, and I have yet to experience a failed seal. I still have my huge Presto dial gauge canner and my old water bath canner for just-in-case. I initially canned 12 quarts of red sauce, and have ingredients on hand to do another dozen. I've canned chicken breast and thighs, beef strips and cubes, carrots, sweet potatoes, tomatoes, ham and black soybean soup, Italian cabbage, beef broth, and chicken broth just to name a few. Whenever I find chicken thighs on sale, I buy extra to can. I'm going to dry can potatoes as soon as I get another flat of canning jars. I've gone through a few flats already this year.

What does this have to do with you? At any time, you or a family member can experience a medical emergency or debilitating condition that will change your preparedness plans. Major surgery, a chronic heart condition, kidney disease, a broken leg, a terminal illness, or simply getting older...the end result is that you will not be able to count on bugging out. How prepared are you to survive on your own, with no outside resources? Can you count solely on a bugout plan, or do you need to be prepared for both bugging out and sheltering in place? Are your spouse and/or children prepared to take over all of the former tasks performed when the disabled person was healthy? Do you have medications and supplies in sufficient quantities to sustain a disabled household member? Are these two ideas of preparedness a collision of worlds, or are they compatible and symbiotic?

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