Dear Beloved and Overworked Caregivers,
Caregiving is hard. Really hard. It’s difficult to see your loved one in pain. It’s difficult to care for someone who wants to be independent and yet may be in chronic pain and becoming more dependent. While the patient is scared, processing, grieving, trying to have control over a situation that is often beyond controlled, you, the caregiver, are pouring emotional energy into consoling, while fearing the worst yourself.
While in some cases you have to take up the slack and do all the jobs your loved one did, you also have the added work of caring for an often grumpy patient while you both are often sleep deprived. No one is at their best. It’s hard to be patient as a “patient,” but people often forget that it takes an inordinate amount of patience to care for a patient. Expectation management for the caregiver is a daily exercise in patience, especially as your loved one may have a non-linear recovery with multiple steps forward followed by a backwards slide. To quote Tom Petty, “the waiting is the hardest part.”
There is so much anxiety in anticipating a major surgery for both the patient and caregiver. Many times you, the caregiver, ask yourself “Am I strong enough to care for a needy loved one? Can I cope with seeing them in pain? Can I help them through a long recovery and stay sane, myself? How can I make this very hard time easier on both of us?”
Having been both a patient and caregiver through very long recoveries, I’ve learned, through trial and error, some logistical and coping strategies for patients and caregivers that can help make surgery and recovery easier. Here are a few ideas:
- Help organize the closet so that only soft, comfortable, loose clothes are easy to reach.
- Make it easy to get in and out of closet and around the house easily with crutches. Remove flimsy rugs and obstacles that could cause tripping.
- Help prepare the bed. Heavy blankets can be hard for someone to move under if they have pain and may even cause hip, leg, or heel pain. A light down blanket helps. A towel or blanket roll under the ankle can help “prop” the leg under the sheets/blankets can help lift the foot and prevent heel pain since lying in one position can cause soreness.
- Sleeping is hard, especially early after surgery when mobility may be limited. Sleeping hours may also be altered after surgery. An eye mask, soft earplugs, and a small blanket to put around the neck may help with drafts, light, and noise.
- For showering: A shower chair in the shower and one outside can make transfers and care easier. Towels should be kept within reach. A shower caddie with all the showering items can be hung in the shower or placed within easy reach. A long-handled back scrubber can feel amazing! Installing a detachable shower head can be very helpful for improving independence with showering – especially when it’s hard to stand.
- Gel ice packs. Amazing.
- Heating pad or packs. Also amazing.
- A little TV table and trays can be helpful for eating in bed in the early days after surgery. Especially if it is hard to go up and downstairs to the kitchen after surgery. Help encourage some movement around the house after surgery too to help prevent blood clots.
- Purchase a small backpack and/or fanny pack to allow some independence with moving small items around the house even when using crutches.
- Help get clothes laid out for physical therapy. Long shorts and loose-fitting layers making dressing and exercises easier to do. A swimsuit that is easy to get into is helpful for pool/aquatic therapy.
- Provide some “easy” company while enjoying some television shows or movies on the couch. Ad-free Netflix and Hulu are great!
- Provide headphones to allow your loved on to watch shows, listen to podcasts, or read books if we can’t fall asleep at night. Bluetooth headphones are particularly great and avoid getting tangled up in cords while sleeping.
- Food: Good nutrition is essential for healing. Encourage eating even if your friend or loved one doesn’t have a great appetite – nutrition is important after surgery and even just small snacks and meals can help with energy and healing. While individuals may have specific dietary or nutritional needs, generally lots of protein, bran and vitamin C and D is good for bone healing. Some foods that are high in these categories include bran muffins, bran cereal, morning protein smoothies, eggs, and yogurt. Dehydration is common after surgery so it can be helpful to keep water bottles around and full and provide reminders to drink frequently.
- Constipation: Lentil and bean soups are great sources of fiber and can help with constipation. Dairy may increase constipation, so this may be good to avoid until bowel movements are regular. Most surgeons also recommend stool softeners after surgery. If constipation is a regular struggle after surgery, reach out to the surgical team for additional recommendations.
- As the caregiver, you may be helping with pain medications. Many patients benefit from pain medication at regular intervals in the early days after surgery and can have increased pain if doses are late or missed. It can be hard to catch up on pain relief if this happens. Know which medications have been prescribed after surgery and help organize which medications can be taken and when. It may be helpful to organize doses using a pill box and phone apps such as “Medisafe” and “Round” can help with tracking the time of doses. Setting phone or clock alarms can be helpful, especially at night.
- Get the “evening routine started early.” Set up water, pain medication, and crackers where they are easy to reach at night. Provide assistance with toileting and dressing as needed and help with positioning in bed for comfort. Leave adaptive equipment nearby can, such as a grabber and strap to help with moving the leg.
- Write down any adverse reactions (ex. nausea, itching, rashes, etc) that seem to be occurring from medications, and contact the medical team if these are limiting the ability to get comfortable.
- It can be psychologically tough for a person when they are unable to care for their children, their family, and themselves. You can help by getting them out of the house for short outings or fresh or inviting friends over if you are all feeling up for company. Having a reason to get dressed daily can make a person feel more “human” when they are recovering from surgery.
- Set up food delivery for a few weeks. This can include ready made meals or food delivery from a grocery story. Spend some time taking inventory of what food is in the house and making lists of essential items and easy-to-prepare foods before surgery is helpful. http://Mealtrain.org can be helpful if you have friends who want to help with meal preparation during the early weeks after surgery.
- Before surgery, check all toiletries in the house and make sure to stock up on essentials such as toilet paper, paper towels, tissues, toothpaste, body wash, shampoo, conditioner, and lotion.
- Help line-up family, friends, or babysitters to care for kids during doctor and therapy appointments. When possible, not having kids at these appointments may allow you all to focus more on your conversation with surgeons and therapists.
- To a spouse or close family member, your loved one will miss you while you’ll be pulled in all directions. But make some time every day to just sit, and have tea, or read, or look over your kids’ stuff together. For an individual recovering from surgery, it’s so hard to go from being at the center of your family’s world to watching them swirl around you without your involvement. It’s nice to be included every now and again.
- Sunlight is good for healing! It may be nice to get a wheelchair for the early period after surgery (even just one off of Craigslist) so you can all get outside. Being indoors and having limited mobility and endurance can result in major cabin fever!
- Psychological healing is as important, if not MORE so, than physical healing. It is sometimes a caregiver’s inclination to try to help by saying it’s not as bad as it feels, or stop feeling sorry for yourself. But we can’t go around these experiences. We can only go through them. And there’s no rushing healing, it’s hard to ease fears, and, without exercise as a patient, it can be hard to cope. This may be especially challenging as some of us experience withdrawal symptoms as we wean off pain medications and may also be experiencing more pain at the same time as we become more physically active. We may feel like a huge burden and a useless waste of space. It can be nice to hear that we are not, and we are worthy of being cared for, and it’s ok to rest, because we will be able to help when we are ready.
- Download online meditation apps to help with nerves before surgery and sleeping after surgery. “Calm” and “Headspace” are some good ones, but there are plenty of others!
- Check your railings and take time to secure them before surgery if they are wobbly.
- Hope for a quick and easy recovery, but be prepared for longer recovery times and complications. Just in case.
- Monitor for signs of complications, including fevers; redness, swelling, increased warmth, increased pain, or discharge around the incision; uncontrolled pain; calf pain, swelling, redness, or warmth; and anything else the medical team instructs you to look for. If any of these occur, call the surgeon’s office. It’s always better to be safe than sorry and it’s best to any concerns sooner than later.
- Check the visitor policy at the hospital. Some hospitals will allow overnight visitors. Patients often say that it is nice to have a caregiver overnight who can keep them company and help advocate for any of their needs.
- Help make sure there is always a phone in reach. This is especially important if no one else is around and there is an urgent need or emergency. It can be annoying to move phone chargers from room to room, so having a few extra phone chargers with long cords in key places such as next to the bed and in the living room can be helpful.
- Know phone passcodes or important contact numbers in case you need to help make phone calls.
- Many patients find music to be healing and can even assist with pain management. A Spotify playlist can be made so that favorite tunes can be played continuously. Relaxing piano mixes such as Chopin nocturnes and Beethoven piano solos are some of my favorites!
- The perceived risk going into surgery is often greater than the actual risk, but both the patient and caregiver carry the burden of worry. When it comes time to having “Worst Case Scenario Discussions” and “Getting All your Ducks in a Row,” often one person feels superstitious about discussing possible negative outcomes while the other feels more control over the situation if they know end of life decisions have already been made. Having a Living Will, checking on Life Insurance, understanding how to access financial and housing resources and passwords, discussing organ donation and burial preferences, discussing in what scenarios you’d like to be taken off life support and discussing what to tell the kids can be tools to help both the caregiver and patient feel more prepared. Or Not.
- But sometimes, in all this preparing, the only way to comfort each other is to reach out and say “I think you need a hug.”
Finally, as a caregiver, don’t forget to take care of YOURSELF. In survival mode, caregivers may have a fight or flight response, distancing themselves from their loved one. They may find themselves picking fights with the patient, fear manifesting as anger. Or they may become detached and annoyed with any efforts their loved one make to connect. In extreme cases of trauma, the caregiver may experience an out of body type of experience where they watch a situation unfold from afar, completely detaching from the emotionally traumatic experience with their loved one. These are natural self preservation responses that, in the face of potential loss, a caregiver employs to get through the situation. Guilt often results and the caregiver may need counseling to work through their feelings of detachment. Don’t be afraid to seek help if you need it.
Thank you for all that you do!
Contributed by: Erin Newton
Disclaimer: All of the information on this site is peer reviewed, as well as reviewed by our current medical advisor. The information on the Miles4Hips website is meant for informational purposes only. While our goals are to promote understanding and knowledge of hip dysplasia and to empower patients and their families in healthcare decision making, we cannot guarantee accuracy or appropriateness of the information for your specific condition or circumstances. The information on this site is not meant to take the place of the professional judgment of your medical providers. Individuals should always seek the advice of your physician/surgeon, physical therapists, and other qualified health care provider with any questions you may have regarding a medical condition or treatment. Individuals should never disregard the advice of your medical providers or delay in seeking it because of something you have read on this website.