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If you’re a caregiver or know one, you know there are no normal days and every day can bring a new challenge. When you have a loved one under Hospice care, you never know what challenges will greet you with each day and how you’ll need to adapt. Having a supply of common and uncommon tools at your disposal for home hospice care makes a world of difference in how prepared and confident you feel. Read on for my go-to list of supplies I’ve discovered I needed along the way.
My mildly disabled older brother moved in with us four years ago. He has a movement disorder and advanced stage COPD. He was fairly independent until two months ago when his doctors diagnosed end-stage COPD and he was entered into a home hospice care program. We don’t have a terminal prognosis yet. There are still a lot of good days along with the bad but he needs continuous care.
Prior to my brother’s illness, in 2012, a sister received a terminal three-month prognosis of lung cancer. My brother, another sister, and I flew to Wisconsin to care for her. This is my second round of caregiving and I’ve learned a lot along the way.
Hospice and end of life caregiving
The first few weeks of caregiving are rough. This is the initial adjustment period to the emotional and physical stresses for the whole family. I felt helpless and panicky and ill-prepared. We knew it was coming, but we didn’t anticipate it would be so soon.
What I discovered is that any time something new happens and I needed supplies or ingenuity there would be initial panic and then a scramble for a solution. Because of this, as each new issue comes up, I’ve added supplies to my caregiving supply box.
Hospice care and visiting nurse programs are truly God’s gift, but they can’t be with you 24/7 under most circumstances so imagination, tools, and the internet have been my go tos.
Check with your doctor or nurse to add or subtract items for your special set of circumstances.
Keep like objects together in a clear plastic lidded boxes. Keep a supply list.
Box 1 – Medical Supplies
Moleskin, that ever useful soft substance that keeps sneakers and high heels comfortable, is a caregiver’s best friend.
Anything that rubs or chafes is an eligible surface.
I’ve found it especially useful for oxygen masks both on the elastic that goes over the ears and on the mask itself. My brother isn’t able to use the nasal cannula so he has an open mask. The mask chafes the bridge of his nose so a patch of moleskin has been the ticket. Moleskin wrapped three times around the elastic on oxygen masks has staying power and is so soft that it won’t irritate.
Hydrocolloid bandages are amazing for blisters of any kinds because they have a silicone pad instead of cloth or plastic. This cushions the blister or broken skin and encourages it to heal in a nurturing way. Have a variety of sizes on hand before you need them. Apply the larger ones at the first sight of redness that may turn into a bed sore. The small ones are amazing for blisters caused by oxygen cannula or masks rubbing on the face or ears. Keep a good selection of these and other bandages (band-aids) on hand. I’ve found that waterproof works the best.
I make sure I have an antibiotic cream along with a cortisone cream. A bottle of New Skin has also helped in certain situations. I also keep a roll on of Aspercreme with Lidocaine for aches and pains.
Over-the-counter pain patches are great. My brother sits up in a chair for extended periods and sometimes the chair bothers his back or hip. A SalonPas or BenGay patch helps a lot with small continuous muscle aches.
Foley Catheter patches are designed to adhere well and rubbing alcohol helps loosen the medical grade glue.
Cotton balls, swabs, and pads
Scissors, tweezers, and forceps
Nail scissors and a pair of kitchen shears are both in my caregiver’s kit. Nail scissors are handy if band-aids need a little tweaking or for cutting moleskin into odd shapes. The kitchen shears (or regular scissors) have been constantly helpful for opening medical supplies from the hospice providers. Forceps also fulfill the function of tweezers, but they have the added feature of being able to lock around the thing you’re holding onto or picking up.
Box 2 – Practical Necessities
Yes! Duct tape! Duct tape is a lifesaver! It comes in multiple colors now so anything you use it on is a little cheerier.
This is not an item to use on your patient, but for things that tend to break or go wrong.
We had a catheter extension tube that allows us to hang the urine bag on the walker. The connector wasn’t stellar and my brother stepped on it a few time resulting in a pee shower (and not on him … ). After surgical tape failed to keep the hose together, a roll of narrow duct tape did the trick until we could get a replacement.
My brother actually wanted me to run to the hardware store for hose clamps, but I voted that one down due to the location of the tubing.
Keep a roll of both narrow and wide in your supply basket. If it’s not supposed to move and it does: duct tape it!
Okay, I know this is an odd item, but pliers have saved me from having numerous meltdowns. I have both needle nose and slip joint pliers; Philips and slot head screwdrivers. I’ve needed them to get medication bottles open, to open clasps on brand new Foley catheter guides, and to break into the oxygen compressor to check the air filter. Handy also to retrieve pills when you’ve dropped them into a tight place.
Keep a can of this where you can locate it easily. Making sure it has the nozzle on it that allows you to have pinpoint accuracy when applying.
Useful for walker wheels, moving parts on rented hospital beds, commode wheels, and wheelchairs.
If it doesn’t move and it’s supposed to (or it squeaks): oil it!
A Small Flashlight
Um, yeah. You’ll need this at some point or another. Make sure it’s something you can hold in your teeth if needed and put some duct tape or moleskin on it to protect your teeth. It makes giving suppositories a lot easier. It’s also handy for finding lost pills and trimming ear hair.
Box 3 – Cleaning and Hygiene Items
Antibacterial cleaning wipes for human surfaces. Chlorox or Lysol wipes for non-human surfaces. Cottonelle or other wet bath tissue is not only great for “bum” management but they’re also gentle enough to cleanse elsewhere on the body if needed. Baby wipes work well for this also.
Hand Sanitizer and antibacterial soap
Good hygiene practice for you and helps keep down exposure to outside germs for your loved one.
Latex or non-latex. Also good hygiene practice for everyone involved. Also great to keep on hand for assisting nurses or nurses assistants.
A Good Start For Home Hospice Care
This is by no means a comprehensive list of items you’ll need. Every situation is different and the tools that are required will be varied. This list is a start though and soon you’ll have your own supply list specific to your needs.
Please take care of your most important resource … yourself. It’s key that you take time out to do things that nurture yourself so you don’t burn out. Get away from the house at least once a week, meditate, journal, walk in nature, stay in contact with other friends and family, and take care of you!!
You can find the Caregiver’s Supply Checklist in my Zen Resource Library Organize your caregiving supplies today!