By: Ariel Fixler
So you think YAY!! your friend/family member/significant other is coming home!! Slow down! Why? Your excitement is understandable; this is an important step! But, with every step comes new challenges. Be prepared because this transition is not easy and your help and understanding is more important than ever. Returning home and road to recovery or remission are NOT synonymous.
The transition home will be hard, harder than either of you expect. Sure, the patient may have some independence return because they are not at the beck and call and constant interruptions of the hospital system. Recovering at home, however, is a slow, long haul.
When I came home, I couldn’t move. Every movement was painstaking, an emotional and physical battlefield. My mom would think I passed out in the bathroom, because it took me a very long time to go to the bathroom and dress myself after bathing. I literally sat on my bath mat crying, trying to get up the strength to put on my clothes or wipe myself and wash my hands. Such easy tasks that we take for granted were my most painful daily activities.
I remember a day I had to be taken to the ER and I was waiting for that window to “GO”. I was a mess that day, emotionally and physically. I was vomiting incessantly, dizzy and a miserable human being to be around. Well that “GO Window” never really came. Instead I yelled at my mom because every time I was ready to go the hospital, my mom would have to go the bathroom again and get her items together AGAIN. I had those small moments/windows of being “OK” and it wasn’t her fault she had a bladder the size of corn kernel (peeing at 20 minute intervals) or that she didn’t understand the urgency of those small windows. I was furious with her because she couldn’t get it together in my “OK GO TIME Window”, you know because that is super fair and rational (insert sarcasm, here).
So be prepared! Your friend/family member/significant other who was a once a chipper independent person can be a real downer with new dependence in her or his own home. The patient needs access and support to make life more manageable and emotional and physical resources to recover.
So what can you do to make their home feel comfortable and less of an obstacle course or a patient’s worst nightmare? Here are some general areas followed by specific suggestions.
- Help organize the home for easier navigation and access.
- Help manage supplies of food, medical items, and house hold and personal items.
1. Make everything accessible. If you have a coffee table or night table lay everything out on it. Get them a night-light or small desk lamp; it will help trust me. (Remember to get bulbs for refills)
Items to keep nearby in an organized way can include prescription meds, a charger, hand sanitizer, lotion, Chap Stick, facemasks, folded hospital gowns, needles and needle depositories, your laptop, iPad, or all of your TV controls, or an outlet strip or extension cord for the electronics (see #11 on this).
2. Don’t put anything that is needed in a place that is hard to access. Stay away from placing anything under the bed, high shelves or sticky drawers or places behind other furniture, lamps, etc.
3. Make sure they have tons of water and fluid. The best are brands with electrolytes like Smart Water and Penta water. At one point when I couldn’t move, my friends got me a mini fridge from amazon.com to keep by my side. I used it for fluids so I didn’t have to hop to the kitchen.
4. Make their home a friendly and loving environment. One of the most appreciated efforts from my friends was when they did just that. It was such a thoughtful loving gesture and showed me how well they knew me. Have framed pictures all over, create a slide show of pictures on a digital frame or on their laptop background. They put positive mantra photos up and old school movie posters to make me smile. It reminded me of my childhood bedroom. Even if they are in pain and are having a crappy day, they can look at these items and feel the bliss of comfort and support. They feel less alone with these creature comforts.
5. Stock their fridge and cabinets with items they may want or need. Try to stay away from anything that can’t be frozen later on or that easily spoils. I would focus on crackers, dry cereal, spelt pretzels and healthy snacks, canned or frozen soups, sorbet, dairy free frozen desserts, frozen fruits and veggies, almond, soy or rice milk (that have longer “shelf life” in and out of the fridge).
Focus on items that are good for small hunger spikes as a patient’s appetite is small to non-existent, but they still need to eat. Think frozen breads, Kind bars (most patients liked those bars but they are too sweet and sticky for me). Small protein bars, protein mixes (add and just stir). Ensure and Aloha powdered raw juice mixes, chia bars, raw and unsalted nuts.
Stock up on saltines and organic ginger drinks or ginger ale/ginger chews for their nausea.
6. Get them plastic ware. So they don’t have to do dishes. Plastic cups, cutlery, plates, bowls, trash-bags and napkins.
7. Get them wet naps for easy cleaning for when they get dirty, their hands get sticky and for when they are too weak to shower. Keep these on nightstand or coffee table. Also dry shampoo helps for hygiene.
8. Stock up on extra socks and underwear for them. They are very useful for accidents and warmth.
9. Make their home smell good. I loved renuzit peach, raspberry, Hawaiian breeze and apple cinnamon scents, either plug-in or stand-alone. They are a miracle worker items for odors. Patients either lose or have a heightened sense of smell after treatment. For example, I lost most of my vision, dexterity and taste buds. Conversely, my sense of smell was like a girl after a nose job.
10. Prepare their home with the medical essentials. Whether they have a nurse, a roommate, a wife/husband/boyfriend, it is best to prepare. Upon returning home, their mobility and dexterity is highly compromised. Get them a wheelchair, walker and a cane. With the simple aluminum walkers, place tennis balls or plastic skids underneath for easy movement (skids are better on carpeting, inexpensive and available on-line) or consider a walker with wheels and seat (remember the basket). Remove area rugs that can cause trip and falls, not just for those using canes and walkers because mobility and balance are compromised.
If they have a hospital bed, get them extra pillows and bedding for accidents. Get a mattress pad for the mattress (for comfort and accidents) and get disposable or washable pads (chux) to place above AND under the mattress pad to avoid accidents to the mattress, frequent changes of bed linens and the extra laundry.
11. Equip their home with the technology essentials. Extension chords that are long that don’t require uncomfortable reaching (TAPE the chords down with duct tape so they don’t trip). Extra batteries for their devices, extra chargers, maybe a mophie or portable juice pack for their phone to avoid constant recharging and so the phone or devices batteries are ready in case of an unexpected trip to the ER. Wipes (antibacterial) to clean these devices (hand-held devices hold more germs than a trash can!).
12. Waste management (said in my best Tony Soprano voice). Don’t let medical waste or boxes pile up, help arrange for a pick up.
Hire a cleaning lady to come and pre pay her and get cleaning supplies. Make sure supplies are hypoallergenic and or organic. If the trash chute is down the hall or outdoors arrange for someone to help with that on a regular basis (preferably 3x/week).
Are they friendly with their neighbors, porters or super? Staffs are always game to help. Just remember them during the end of year tip season or other thoughtful, thank you gestures throughout the year.
Arrange for someone to do the laundry or schedule an exact time and date for a pick up service every 2-3 weeks (with their or your credit Card to allow for pre-payment so they don’t need cash). BUT, make sure patients have cash and checks handy for any emergencies.
13. Arrange for transport to their appointments. Offer rides, arrange it with access-a-ride or an ambulette service. Set up an account with any service and pre-load their app with an auto login on the patient’s phone. Arrange a car with local providers (Carmel is nationwide) or help them get an uber or another car service in your local “hood”. You can find other providers through local senior service and VNS organizations. Volunteer or drivers with reasonable rates may be found through local religious communities.
14. See if you can pre-pay for their meds and have them delivered at a set time. See if their insurance allows for automatic renewal and renew it for them. Write down (in a safe place) all of the prescription names and numbers of each script (to renew the script). You can enter this into an excel spread sheet so it can be quickly and easily updated, stored and printed. Make sure you know how many refills are left and what items require a co-pay.
15. Make sure they have enough supplements, vitamins or over the counter meds they need for at least a month. You might place an Amazon order for them. Ask what things they may need for any allergic reactions or if their immune system if “acting up” that day.
Allergic Needs: Aveeno anti-itch products, Benadryl non-drowsy cream and pills or Zyrtec/Claritin.
Hygiene: Organic Shampoos, Lotions and Body Washes.
For their immunity needs: Coldcalm, Occicilium, Probiotics, Tylenol Cold and Flu, Dayquil, Zicam, Antacid, Ear infection drops, Nasal Spray, good spelling antibacterial hand soap, Emergen C or Vitamin C chews, Aspirin or Migraine medicine if they are allowed.
Bowel Needs: Fiber products for slow bowel movements, Digestive enzymes and Philips Colon magnesium pills. Vegan Calm Nighttime Powder, Gas-X and Lactaid pills and nauzene chewable for nausea.
Sleeping Needs: Melatonin, Sleepy time Tea and Essential Oils.
Urinary Needs: Cystex Cranberry and Raw Cranberry Juice, Pyridium for UTI’s. Oxytrol patches for urinary incontinence.
Medicine Needs: Pill sorter, pill crusher, breath mints, Visine for dry eyes.
16. Pure air is needed. A humidifier is key.
17. Sleeping may be a problem. What can help? A sleep or sound machine or noise canceling earphones or ear plugs. Also (see above) Melatonin, Sleepy time Tea and Essential Oils.
18. Get their mail for them weekly. So they don’t miss get well cards, invites, bills or insurance claims and renewals. Place the cards and magazines and mail all
in one place designated for mail. In line with that suggestion, set up a bill paying system for their utilities, meds, groceries, bills or work needs.
19. Make sure people have key access, whether it to be friends or family you trust. Why? So they can walk in freely without waking or bothering you. Also, if they have doorman, porter or live in super let them know about the illness, so they can be more attuned to their needs. Hey, it’s a benefit for them during the holiday tipping season.
20. If you see/hear neighbors being loud, drunk or slamming doors, be an advocate!! Let them know what is going on with their neighbor. So the patient doesn’t have to leave annoying notes or contact building management (a painful process). I had neighbors next door who argued and slammed doors all the time. I heard their fights all the time, despite my nurse and mom asking them to keep it down. I had another neighbor who spoke on the phone in the hallway and was a late night partier. My upstairs neighbor wore high heels and stomped around all the time. So my home life was as noisy as the hospital.
21. Set up food accounts for them with a credit card pre-stored. I would go with seamless.com or an account at their favorite grocery/health food store. When I was sick my friends set up an account with organicavenue.com who delivered juices, smoothies and plant-based foots every week. When I was going through chemotherapy, my friends had planned bagels delivered from Ess-A-Bagel. I would eat the bagels slowly like a mouse for hours on end. It took me 2 hours to get through a mini bagel. It was the only food I didn’t throw up because they were so carbohydrate dense like. See what your local neighborhood has in that arena and help nourish the mind, body and soul.
Postmates.com WunWun.com Task Rabbit are all services (and apps) that can run errands for you as well.
http://www.getcleanly.com/ (NY based laundry on demand service)
http://www.soupure.com/ (LA and nationwide shipping coming soon)
22. Snacks in bowls for visitors. I would stray away from getting the patient candy or sweets. It was sweet when people brought me “sweets”, but it is not REAL food. I usually gave the cupcakes to my doormen or to my dad or my dad’s nurses. However, people get anxious when visiting and if you have a bowl of candy it makes them feel like everything is going to be ok, odd but true. Think non-sticky items, like Werther’s originals, sugar-free jolly ranchers, maybe even lollipops (like dum dums).