March 24, 2022
In my first blog, Waking as an Amputee, I discuss my experience with becoming an above the knee amputee. In this blog I will discuss some of my experiences coming home from the hospital, how my husband and family prepared the home, and items we needed or learned that could be helpful.
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Going home can be intimidating, scary, or exciting depending on how much time you've been away and how much help you have. Some may be eager to get home regardless and ready to take on new challenges. I was in the hospital and rehabs for more than two months with people taking care of me 24 hours a day, so going home would be a huge change.
I was lucky (and grateful) to have a support system waiting for me at home. My husband had already begun to prepare the home with items he was told would be needed or useful, and my mom would be there to help with preparing meals, cleaning, and shopping.
What does the hospital (or rehab) supply?
I left acute rehab with a standard wheelchair and bedside commode. You may not leave with the same items, but be aware that insurance may not cover two assistive items such as a wheelchair and a walker. I also left with all the medical supplies used in caring for me. Depending on how long it will take for a home health nurse visit or your next doctor's visit, these supplies will be necessary for wound care. Likewise, you will leave with a prescription for necessary medications.
Some of the items provided by physical and occupational therapy are a reacher, exercise band, gait belt, hand exerciser, and handouts with pictures and instructions of the exercises they suggest you do daily.
Headed home
A lot of what you will learn from therapy is about taking care of yourself once you are home. You may work on standing at the sink to brush your teeth, wash your hands or comb your hair. You can be taught how to maneuver in the kitchen, wash your clothes, and shower or bathe using a shower chair. My location even had a replica of a car to practice getting in and out using a car assist handle.
The car assist handle is something I consider a must have (can be used by an amputee, the elderly, or just someone with difficulty getting in a vehicle), but we learned the hard way, I needed something more. The vehicle we used when leaving rehab has running boards that we did not consider, and this prevents the walker from going far enough back to reach the seat. After physically picking me up to place me in the car, my husband kept thinking it would be great if there was something I could sit on like a transfer board to get into the car. Lucky for us, this item exist and was found on Amazon as a Slide n Ride.
Welcome home
Through research and questions, my husband also prepared the home for my arrival. One of the first things he considered was my accessibility to every area and floor of the home. With this in mind, he had stairlifts installed. Safety grab bars were placed in the bathrooms, rugs moved, and areas cleared of clutter for ease of movement in a wheelchair or walker. Two walkers were purchased (one for each floor), a shower chair, and a new shower head with a long hose.
Besides the wheelchair provided, you will also need a walker or crutches to get around. We also learned the standard wheelchair is a little heavy and cannot be lifted by everyone. After research, the one we decided on for easier travel is the Feather Chair (which I was blessed to be gifted). This wheelchair can be customized and has removable pieces, and most of all, is about half the weight of the standard chair. Initially we learned about travel wheelchairs from my occupational therapist. These are not as light as the Feather Chair, and can only be pushed by another person, but they are a much more affordable option.
Some of the other adjustments made, that may or may not be necessary for your situation, is the bed was lowered for ease of getting in and out of (and eventually replaced with an adjustable bed), the door to the water closet in my bathroom was removed to provide room for the walker or wheelchair, the shower door was removed and replaced with a shower curtain that could be cut to fit with the shower chair, a bar height kitchen table replaced with a standard height table to accommodate my wheelchair and reduce risk of falling from bar height chairs, the laundry room was rearranged so I can do laundry or grab cleaning supplies from my wheelchair or walker, and furniture moved for ease of getting around.
TLC
My amputation was not my only surgery and issue. Coming home I was still weak (couldn't open a bottle of water for many months), struggling with nausea, my incision was open, and my right foot still needed care. Some of the items that might be necessary or useful if the amputee is limited or sick are bedpan, urinal, bed pads, wipes, gloves, and hand sanitizer.
I used one of the wash basins I left rehab with for my daily wash ups, and others were placed where I would rest for nausea. Gloves, 4x4 gauze pads, saline spray, pads, wraps, tape, and alcohol wipes (used as adhesive remover) were used for wound care. A home healthcare provider will likely be responsible for providing these supplies, but depending on how quickly they can see you and order supplies, you may have to purchase some things.
Comfort and convenience
I am most comfortable in a dress (Shein has some great options) or gown and I don't get out of bed without non slip socks. I purchased new light weight shoes to prepare for getting a prosthetic, but if you're in need of one shoe, Nike (800-344-6453) has a one shoe program.
If I need to carry multiple items, I use a cross body purse, and if I need to carry only my cellphone, I use an armband. One of the most convenient items I use on my wheelchair, is a cup and phone holder. It can attach to any item with a bar and is great for use at home or on the go. A skinny or handle insulated tumbler is a good addition that will keep your drinks hot or cold, spill proof, and protected.
A reading pillow provides comfort and stability for sitting up in bed, and pairs well with a tray table or tv tray. To keep things (like the laptop I'm using) conveniently nearby, I use a bedside caddy. I also use a desk organizer on my nightstand to hold medications and other items that have likely always needed organization. The organization part is still a work in progress (LOL).
But wait...there's more
When we moved in our current home, every bedroom had remote control lighting. Even on our lazy days we did not use the remote, but this became one of the first conveniences I used. Trying to balance myself and turn on or off a light was impossible when I first came home and getting around in the dark could have been like playing a game of Wipe Out.
If you have lamps or lights that plug in, you can purchase remote control outlets and save the trouble of replacing an entire light fixture. Some of the other gadgets we liked that I now see as useful to an above the knee amputee is the Nest Thermostat for allowing adjusting of the temperature through an app, Kwikset keyless entry door lock that allows for remote opening through an app, myQ garage control that can be controlled using an app, Ring video doorbell to see who's there through an app, Shark robot vacuum, cordless electric scrubber, Apple Watch (SE or newer) that report a fall and make emergency contacts if necessary, wireless headphones, and ADA compliant appliances.
To summarize
This blog offers an opinion of items I, or other amputees, have found to be suggested, needed, useful, comfortable, convenient, or handy. Some amputees may believe many of these items aren't needed because you will have a prosthesis soon, and some even frown on utilizing programs like the Nike one shoe program. I am one year in and do not have a prosthesis yet, but there are some who have a prosthesis within two months.
The journey varies for everyone, and keep in mind not everyone will get a prosthesis. Sometimes this is by choice and other times this is because the option is not available. The amputee could have great insurance and still be denied (just as I was twice), or they may not have any insurance.
I learn so much everyday about an experience, feeling, item, or question from other amputees. Much of the information has been helpful and is the reason the amputee groups exist on social media. What better way to learn than from another above the knee amputee?
There are many questions everyday from someone in the group that may be as simple as how do I bathe and what type of shoes do I wear, to very complicated questions like what is this pain, how soon will I get a prosthesis, and how soon will I walk. The responses vary based on individual experiences, and many of the discussions have helped me to understand some of the concerns, issues, and complaints that continue for many years into this lifestyle. Many of the items listed can be useful beyond the beginning of care or getting a prosthesis.
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Disclaimer: The contents of the Going Home After Being Cut Above the Knee blog, such as text, graphics, images, and other material contained on the cutabovetheknee.com website are for informational purposes only. The Content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on the cutabovetheknee.com Site.
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