Caring for a loved one with a life-limiting illness is a rewarding but challenging task. Many family caregivers have never been in such a position before. If caregiving is new to you, we’ve collected the following tips to help you get started in your role as a family caregiver.
If you’re making preparations to begin caring for a loved one, here is a list of some things you may want to have on hand to prevent running to the store at the last minute:
- Dressing supplies as instructed by the discharge planner at the hospital.
- Skin lotion for back rubs and to keep the skin from becoming dry and itchy.
- Prescription medications filled ahead of time (yours and your loved ones).
- Over-the-counter medication for mild pain and fever (acetaminophen, ibuprofen).
- Disposable gloves.
- Egg crate mattress pad, if bedridden.
- Juices (note that citrus may be hard on the stomach and may interact with certain medications).
- Gelatin cups, pudding cups, popsicles.
- Quick to prepare foods (or freeze meals ahead of time if you have plenty of notice).
- Bendable straws.
- Bed protection pads.
- Heel protectors, if bedridden.
- Extra pillows, especially if bedridden, for helping to position them on their side.
- An emergency plan in case of inclement weather or power outage. If a loved one is on oxygen or other electrical devices, DE residents should register for the Emergency Medical Equipment Notification Program with the power company.
- Electric shaver, if caring for a man.
- Small, soft toothbrush and toothpaste.
- Pre-moistened oral swabs and mouth rinse.
- Lip balm.
- Bath water tub, if unable to get to shower.
- Dry shampoo, if unable to wash hair.
- Shower stool and hand held sprayer, if able to get to shower.
- Washcloths, towels, non-drying soap.
- Heating pad for your own back.
Tips to help you keep your loved one comfortable
Here are a few basic steps you can take to make sure your loved one stays comfortable:
- Help them changes positions often (every 2-3 hours) if bedridden to prevent bedsores.
- Massage the skin over bony areas to increase circulation and prevent bedsores.
- Make sure there are no bumps or wrinkles underneath your loved one. The egg crate goes between the mattress and the sheets.
- Encourage your loved one to get out of bed and to a chair for meals if possible.
- Only use heating pad on your loved one when they are fully awake. Never place a heating pad between the patient and the bed, only on top of the injured area.
- Use body powder sparingly, if at all. Do not use body powder if your loved one has a urinary catheter.
- Keep skin clean and dry at all times.
- Oral care is important for health and comfort. Brush your loved one’s teeth and tongue twice a day with a small amount of toothpaste. If they are unable to assist, you may need to use pre-moistened swabs.
- Remove soiled clothing and bedding as soon as possible.
- A change in position in bed may help with anxiety, discomfort, and tension.
- Elevate the head of the bed or have your loved one sit up in bed, especially when drinking liquids.
- Encourage as much independence as possible. Offer choices so they are active in their care.
- Offer fluids, water, juices, and gelatin cups throughout the day. Make sure they get enough liquids to prevent dehydration. If you wait for them to ask due to thirst, they are probably already a little dehydrated. Limit caffeinated drinks (coffee, tea, dark soda) as they can cause dehydration.
Tips for taking care of yourself
As a caregiver, you courageously and lovingly face each day with tasks which can be overwhelming at times. Each day brings new challenges as you cope with changing levels of ability as the illness progresses. Research demonstrates that caregivers often have an increased risk for depression and illness, especially with inadequate support from family, friends and the community. You must take care of yourself to continue to help your loved one through their illness. The following are a few ways to take care of yourself:
- Caregiving is a job. Reward yourself with breaks throughout the day. Fresh air and a few quiet moments can recharge you.
- Keep a list on the refrigerator of things that need to be done. Add to it as you go through the day. When people offer to help, accept the offer and go to your list on the refrigerator. Select the most pressing tasks or let your helper choose from the list. This method will help you remember what needs to be done and is very useful to your friends. You may find that your friends go straight to the list when they come to help out.
- Take care of your back as all the turning and pulling may aggravate back pain. A heating pad may help.
- Nap when your loved one naps.
- Ask for help from neighbors, friends, and family.
- Watch for signs of depression and seek help when you need it.
- Trust your instincts. Most of the time they’ll lead you in the right direction.