Often, becoming a caregiver is not something you anticipate. Sometimes it happens without warning after an accident or unexpected illness. Other times, declining health makes it necessary to step in and lend a hand. No matter what the situation, caregiving for a parent or loved one is a big responsibility. And the role can be even more challenging if you live far away.
If you live an hour or more away from the person you are caring for, you are a long-distance caregiver. According to the National Council on Aging, approximately 5-7 million caregivers in the U.S. (around 15% of all caregivers) are long-distance caregivers. And while you may not be able to deliver hands-on, day-to-day care, there is still a way to be involved in fulfilling the needs of your loved one.
Defining the role
Meet with other family members to determine what role each of you can fill. Everyone is busy these days, but by working together, you can establish a plan that utilizes the strengths and availability of each family member.
- Assess the need. The first step in developing a caregiver plan is determining exactly what needs to be done and what your loved one requires.
- Appoint a primary caregiver. A primary caregiver is the one who is responsible for making sure your loved one receives the appropriate day-to-day care. This may be a family member or a hired caregiver, but they should be familiar with the abilities and needs of your loved one and make sure they receive the required care.
- Share the responsibilities. The job of caregiving doesn't have to fall to a single person. If possible, consider taking turns. Even if you can't manage a lengthy stay, are you available for one or two weekends a month? Are you able to pay for a cleaning service or meal plan? Look for ways to contribute even when you can't be there in person.
- Check in frequently. A quick phone call can provide information on how your loved one is doing that day and bring to light any needs that may not have been previously identified.
- Arrange for in-home caregivers. If there is no family member who can fulfill the role, a home health aide can help with personal care such as bathing, dressing, and meal preparation - some will even provide transportation to medical visits and other appointments. If skilled medical care is needed, a licensed nurse or therapist may be required.
- Coordinate finances and paperwork. Even if you live far away, you can assist with money management, insurance claims, bill paying, and other financial duties. Offer to organize records and paperwork.
- Address legal needs. Talk to your family member about establishing a power of attorney (POA) and health care proxy. A POA allows an appointed individual to make necessary legal and financial decisions on your loved one's behalf should it be needed. A health care proxy is authorized to act on a person's behalf concerning medical decisions should the person become incapacitated either temporarily or permanently.
- Enlist the help of other networks. Even if there are no family members nearby, could a neighbor, friend or fellow church member check in routinely?
- Reassess needs at visits. Use routine visits to assess how things are working and if needs have changed. Are there household maintenance issues that need attention? Does your loved one now require more care than before? Keep in mind, you may need to adjust as you go along.
- Prepare for emergencies. Keep all necessary information handy such as home security codes, doctors' names and numbers, and information on how to reach neighbors or other points of contact. Arrange to have an extra set of keys available in case access to the house is quickly needed.
- Consider hiring a geriatric care manager. Typically, a licensed nurse or social worker, these professionals specialize in the care of elderly adults. They can assist in finding and coordinating care and services. But be aware, the cost of care managers is not covered by Medicare.
Tap into technology
Technological advancements in recent years make it possible for long-distance caregivers to stay in touch with loved ones and offer better support from far away. Some technologies that can help with caregiving responsibilities include:
- Video calling. Teleconferencing on apps such as Zoom, Skype or FaceTime allows you to have face-to-face conversations when you can't be there in person. Not only does this allow you to evaluate your loved one's wellbeing, it also helps them feel more connected.
- Remote monitoring devices. Services like Connected Caregiver make it possible for family members to check on parents and family members. Much like the devices doctors use to remotely monitor a patient's condition, the Bluetooth-enabled monitors send updates to caregivers and create a digital record of vital signs, medications and health updates.
- Smart medication systems. Devices such as PillDrill, The Prompter Connected Pillbox and Pria provide a way to help track medications and ensure the patient is taking them as prescribed. The device sends a reminder when medications are due, records when the dose is taken and sends a notification to caregivers if a dose was missed.
- Personal emergency response systems. Medical alert systems that notify family and emergency response teams that a patient may need immediate assistance after a fall or medical crisis can literally be a lifesaver. A variety of systems are available, including Lifeline, Medical Alert and Bay Alarm Medical. Most require a monthly plan and some offer flexible pricing to meet your specific needs.
- Camera monitoring. Home monitoring camera systems can help you keep eyes on elderly parents even when you can't be there. Although it may take some time to get used to being on camera, many older adults feel safer knowing they are not alone. There are a wide range of prices and features, so it is important to shop around. Wi-Fi connected devices allow you to check-in in real time and some send alerts in case of emergency. Some popular options include the Eufy indoor security camera, Ring, Lorex and Vivint.
If you are a long-distance caregiver, remember there are many ways to be involved. Stay informed and up to date. Learn all you can about your loved one's health and medical care. When you visit, it's great to pitch in and help with errands and other duties, but don't forget to spend quality time with your loved one, too. Sometimes the best thing you can share is your time.
What is dysphagia?
Like aphasia, it can be caused by neurological conditions such as brain injuries and stroke, but it also can stem from muscle disorders, certain cancers and blockages/strictures in the throat.
Depending on the cause, dysphagia can be temporary or long-term.
Conditions commonly associated with dysphagia include:
- Parkinson’s disease and multiple sclerosis
- Neck and throat cancers
- Late-stage Alzheimer’s disease and other dementias
- Cervical neck surgeries
Stages of dysphagia
There are three phases of swallowing that are impacted with dysphagia:
- Oral: This is the process of chewing food and mixing it with saliva to form a bolus in order for it to be moved from the front of the mouth to the back of the mouth. A person with dysphagia in this phase could have trouble breaking down the food enough to properly move it to the back of the mouth to trigger the swallowing reflex. This stage is also where tongue weakness or decreased sensation may impact the ability to clear food from the sides of the mouth causing it to pocket in the cheeks.
- Pharyngeal: This is where the swallowing reflex begins, and pharyngeal muscles push food down the throat to the esophagus. The epiglottis (a cartilage) inverts to protect the airway and sends the bolus towards the esophagus. This is when the upper esophageal sphincter opens to allow food to travel into the esophagus. A person with dysphagia in this phase might feel like the food is “entering the wrong pipe,” Delashaw said, because the muscles in the pharynx and/or larynx are not operating properly to prevent food or liquids from entering the airway.
- Esophageal: This is when the bolus is taken from the upper esophageal sphincter that has opened, allowing it to enter the esophagus. Peristalsis (muscle contractions) carries the bolus from the upper esophagus towards the stomach. In this phase, a person with dysphagia may feel like food is stuck in their throat or chest.
Symptoms of dysphagia
Dysphagia symptoms could include:
- Coughing or choking during or shortly after eating or drinking
- Heartburn or indigestion
- Feeling that food is stuck in the throat or chest
- Painful swallowing
- Regurgitation
- Food sitting in the mouth or being pocketed in the cheeks
- Unexplained weight loss
- Reduced desire to eat
Diagnosing dysphagia
Dysphagia is diagnosed by a healthcare provider. Speech-language pathologists diagnose dysphagia with a comprehensive oral exam and swallowing examination, which should include swallowing tests such as a FEES or MBS exam.
- FEES: FEES stands for fiberoptic endoscopic evaluation of swallowing. This is an exam where a speech-language pathologist inserts a small thin scope with a camera through the nose and allows visualization of the throat, larynx and vocal cords to assess swallow function as you eat and drink certain foods.
- MBS: During a modified barium swallow study, a speech-language pathologist will give you food and liquids covered in a small amount of barium. As you swallow, X-rays are performed to view your swallow in real-time.
Treatment of dysphagia
After a dysphagia diagnosis, a speech-language pathologist can help determine what consistency of food and liquids is safest to eliminate risk of choking or aspiration. They can also provide therapy and exercises to help strengthen the muscles used during the different stages of swallowing.
Treatment should always involve a discussion with the individual to determine their wishes regarding oral intake and development of dysphagia treatment.
“If difficulty is noted in the oral phase, we can design an exercise program to target movement for the muscles used when breaking down the food,” Delashaw said. “Say you had a stroke that impacted lip muscles, and you can’t hold food in your mouth. We’re going to work on increasing the control and strength of the lip muscles, so you do not lose liquids or foods out of the mouth.”
In addition to exercises, Delashaw said neuromuscular electrical stimulation could also be used to increase muscle awareness in the different stages of dysphagia.
In the esophageal stage, your speech-language pathologist could suggest obtaining a referral from your primary care doctor to a gastroenterologist for further evaluation.
Recovery from dysphagia
Depending on the diagnosis and related conditions, dysphagia could improve over time. If swallowing difficulty is related to a neurological condition, inpatient rehabilitation could help develop adaptive techniques and diet plans to meet your needs and quality of life standards.
The multidisciplinary approach in this setting also allows for other symptoms related to your condition to be addressed through intensive therapy. In addition to working with a speech-language pathologist, your therapy team would also include a physical therapist and occupational therapist to address mobility and strength as well as activities of daily living and quality of life.