Chapter 9
Special Considerations for Care
The responsibilities of providing care can seem complicated and never ending. They can be particularly challenging if your loved one has special requirements, such as home dialysis equipment or a room monitor to enable listening and increased security in another room or area of the house. These extraordinary circumstances can involve caring for a loved one of any age and demand that you accept outcomes you had hoped to avoid or do things you had never expected to have to do. Such situations can break even the most dedicated and determined of caregivers.
Because there is a great deal of emotion and commitment involved in your relationship with your loved one, the thought of not following through or performing above and beyond what is reasonably required may seem unacceptable. At first, you may not even realize how much you’ve taken on. But at some point, there’s a good chance that you will need to receive specialized training, bring in professional assistance, or accept that you are not capable of managing the situation and must relinquish your role as primary caregiver. This can leave you feeling inadequate or that you have failed, but you cannot be expected to intuitively know how to handle your loved one’s care.
The first step is in acknowledging that you are managing care for someone who falls into an unusual or high-needs category. By doing so, you will be giving yourself permission to admit that you may not be the right caregiver, don’t want to be the caregiver, or need additional help in providing elevated levels of care.
This chapter will help you to understand the debilitating conditions your loved one may be facing and to determine your capability to be able to care for him or her.
The Special Care Needs of a Younger Person
In situations where your young loved one will need long-term care—such as being born with a condition like cerebral palsy or having been in an accident and suffering from a traumatic brain injury—most parents believe that their child will receive the best and most attentive support at home. If you are in such a situation, you may have the impression that you must provide all the care yourself and that, if you don’t, you are abandoning your child. However, there are instances where it can be best to turn a child’s care over to others. For instance, perhaps your child has reached a point in life where it would be beneficial to move to an environment that will encourage him or her to grow as an individual.
If your loved one is a senior, the need for assistance usually stems from the normal cognitive or physical decline of aging, and the focus is on providing care during the final days, months, or years. But if your loved one is young and suffers from severe physical or mental incapacities, it’s probable that care will be required for decades.
While you still have the same options for providing care that exist with an older person, consider the following questions.
• Are you fully capable of providing for your young loved one’s health care needs?
☐ Are you able to perform objectively as a caregiver?
☐ Do you need specialized training to meet her needs?
☐ Are you able to dedicate yourself to her care, or will you be torn between working and caregiving for many years to come?
☐ Will you grow too old to provide care?
☐ Do you have your own health concerns?
• Will your loved one receive appropriate social stimulation for her age?
☐ If she is confined to the home, will she be able to interact with others of the same age group?
☐ What steps can you take to ensure she reaches development milestones for good emotional and mental health? For instance, you may need to enroll her in young adult day care or a school for those with special care needs.
• If this is a permanent condition, could she benefit from moving to a young adult assisted living community?
☐ Is there a possibility that she could finish school or learn a vocation while living in a supervised environment?
☐ Would your young loved one gain from being around others her age that are also living with challenges?
☐ Will moving to a community allow her to grow as an individual?
• Have you taken necessary steps to provide for her care if or when something happens to you?
☐ Do you have the necessary legal documents, like an estate plan, indicating your wishes and how you’d like your loved one to be cared for if you were incapacitated or deceased?
☐ Have you introduced your young one to the outside world so that it wouldn’t be traumatic if you were no longer her caregiver? For instance, does she go to a young adult care community while you take a respite? Or does she regularly visit and stay with other family members who might take over caregiving duties?
What must also be considered is how to go about finding resources that specialize in young adults with care needs. Here are some suggestions that may offer a great deal of help to you as you make decisions for your young loved one.
• Ask professionals such as doctors, social workers, or support groups if they know of organizations or communities that specialize in younger clients or residents. By reaching out, broadening your contacts with those who manage the care of younger people, and developing a sphere of expert resources, your options of finding the appropriate support will be better.
• If you need to move your young loved one to a care community, do not rule out traditional assisted living facilities. Although you may not be able to find a specialized community that focuses on young adults, traditional facilities may still be an option. Explore whether they are willing to accept a resident under the ages 55–65. Ask the community director about the resident population and whether there are any younger residents. Inquire as to what programs the community can offer younger residents and what type of stimulation and socialization opportunities they would receive.
Traumatic Brain Injury
Traumatic brain injury (TBI) occurs when an external force—usually the result of a violent blow or a jolt to the head or body from a car accident, sports injury, or act of violence—causes brain dysfunction. TBI can cause mild to severe symptoms that may last a relatively brief period of time or can be permanent and cause serious disability. These injuries can lead to a variety of prolonged or permanently altered levels of consciousness.
• Vegetative state. This usually results from widespread damage to the brain. The individual is unaware of his or her surroundings, but may open his or her eyes, make sounds, move about, or respond to stimuli.
• Minimally conscious state. There may be some evidence of self-awareness or an awareness of the individual’s environment.
• Locked-in syndrome. There is an awareness of his or her surroundings, but the individual is awake yet unable to speak or move.
• Coma. The individual is unconscious, unaware of anything, and unable to respond to any stimuli.
• Brain death. If taken off of life support, the individual will die.
The level and type of care your loved one may require after suffering a traumatic brain injury will depend on the level of consciousness as well as his or her physical/mental needs. Some of the more serious symptoms include the following:
• seizures, often called posttraumatic epilepsy
• fluid buildup, infections, blood vessel damage, and nerve damage to the brain
• intellectual problems such as lack of judgment, poor reasoning capabilities, or difficulty concentrating
• communication challenges like difficulty with speech or writing, inability to organize thoughts or ideas, and problems expressing emotion
• behavioral and emotional changes including difficulty with self-control, trouble in social situations, and lack of empathy for others
• sensory issues such as impaired eye–hand coordination, blind spots, double vision, and trouble with balance or dizziness
• increased risk of brain diseases such as Alzheimer’s and Parkinson’s resulting from the degeneration of brain cells
As a caregiver for a loved one with TBI, you may be faced with providing long-term care for someone who suffers serious physical, mental, and emotional problems. Seek counsel from experts to determine if you are the right person to provide care for that individual or what other options you should consider to manage your loved one’s needs.
Alzheimer’s Disease and Other Related Dementias
When memory issues develop into dementia, your loved one will need more specialized care as the condition worsens over time. Eventually, your senior’s needs may exceed what you can provide at home or what an assisted living community is willing to manage in its facility.
Scenarios that may indicate that your loved one needs specialized care and cannot remain in his or her current living situation include the following:
• disorientation
• an inability to understand or remember who or where he or she is
• failure to recognize family
• tendency to wander, and therefore at risk of becoming lost
• inability to recognize danger
• the indication of behavioral or emotional problems
• an inability to perform the majority of ADL without assistance
• a risk for trips, falls, or accidents
• being in a care situation that no longer meets your loved one’s needs
• the need for full-time supervision
If you find yourself unable to handle the care for a loved one in the later stages of dementia, there are expert memory care communities dedicated to those with these problems. Some existing communities have also recognized the growing need and are committing areas for this specific type of resident. These facilities have staff trained in dementia care and can meet specific challenges such as redirecting behaviors, providing reassurance, and calming agitated residents.
Parkinson’s Disease and Similar Conditions
When dealing with a long-term progressive illness such as Parkinson’s disease, muscular dystrophy (MLS), or Lou Gehrig’s disease (ALS), families must consider how it will progress over time and what modifications will need to be made to the person’s care as a result. This is where researching options and planning ahead can make a difference to how well you and your loved one handle care options and adjust to the changes as they occur.
Often, these conditions remain stable for years, and the progression allows enough time to tackle each new requirement as it appears. People with Parkinson’s disease can live as long as those without it, but over time they will have an ever-increasing need for assistance. On the other hand, people with a condition such as ALS are expected to live only three to five years after diagnosis. The condition progresses more rapidly than others and may require more frequent changes to the care plan.
It is important to learn as much as possible about your loved one’s condition and then address the management of the symptoms over his expected life span. The following steps can help you identify how you might prepare for his present and future care needs.
• Seek a professional diagnosis. Understand what you and your loved one are dealing with. Don’t assume that it’s stress, that he is overly tired, or that he has some other condition that would cause similar symptoms when it could possibly be a stroke, a head injury, or Parkinson’s disease. If his physical or mental ailments are long lasting and not improving, it is likely that there is something more serious going on.
• Learn about the progression of the condition. Ask yourself whether you are facing increasing care needs for your loved one over the next two years or the next twenty years. Consider issues such as whether you will simply need to provide basic assistance with activities of daily living or if it is likely to become more serious over time and you will be required to hire health care professionals to provide skilled medical care as your loved one’s body ceases to function properly. Develop a working timeline of what you can expect for planning purposes.
• Create a plan that determines what and when resources should be put in place to ensure that the needs of everyone involved are being met. Conduct research on resources, care options, and financial planning. Keep in mind that the plan needs to be flexible enough to change for any unexpected events.
• Have an open and honest discussion with your loved one as to what the future looks like and what he can realistically expect. Use the information you’ve gained by familiarizing yourself with his condition, and describe what types of care you anticipate needing to put in place as his needs progress. Explain whether you feel capable of meeting those demands yourself or if you will want to seek assistance from others.
Feeding Tubes, Tracheotomy Tubes, and Other Medical Devices
As your loved one’s body begins to shut down, there will be a need for a variety of medical devices to assist with functions your senior is no longer able to perform. Family members can receive training and, if willing, perform duties to monitor, clean, replace parts, or handle other equipment necessities.
Gear that family caregivers might need to manage include the following items.
• Durable medical equipment. This equipment might include hospital beds, lifts, wheelchairs, scooters, and toilet or bath chairs.
• Oxygen tanks. Tanks, tubing, and cannula (the device that is placed into the nostrils to deliver a mixture of air and oxygen) are easily cared for and common in aiding the elderly or those with problems breathing.
• Ostomy pouches. These pouches, used to collect body waste, require regular changing, after which the surgically created opening in the body must be cleansed.
• Catheters. This is a flexible tube inserted through a narrow opening into a body cavity for the removal of fluids.
• Feeding tubes. There are several different types of feeding tubes, and, depending on which type required, you may be able to care for it yourself or it may require a skilled professional.
Equipment that family caregivers may consider too difficult to handle or that require skilled professionals to operate include the following items.
• Mechanical ventilator. This is a tube inserted into the windpipe to assist an individual with breathing.
• Tracheotomy tube. This is a ventilator (breathing) tube placed through a surgically made hole in the front of the person’s neck and down into the windpipe to help with breathing.
• Suctioning equipment. This is a device used to remove liquids, such as mucus or serum, and gases from the body cavity and airways.
Not every caregiver wants to perform these tasks or handle this sort of medical equipment. When considering who will provide care for your loved one, you will need to discuss specifics with the potential caregiver and ensure that the person is trained and willing to manage these types of equipment. If considering an assisted living community, be aware that not all communities will allow or manage certain pieces of medical equipment.
Dialysis
If your loved one has kidney disease and requires dialysis, he or she will either need assistance with home dialysis equipment or be able to visit a dialysis clinic for treatment. Both can be time consuming and difficult.
Home dialysis allows your loved one to receive treatment in the comfort of his or her own home and offers more flexibility of scheduling. Anyone involved in the treatment must commit to effective time management. The following considerations can help you determine if home dialysis will be an option you and your loved one wish to pursue.
• Home dialysis allows the patient to decide when and where it’s most convenient. For example, he or she could dialyze in the living room while watching television with family members or at night while sleeping.
• The equipment must be clean and easily accessible.
• Home dialysis may require specific plumbing and/or electrical modifications to the home.
• There may be additional costs to the household budget, such as higher water and utility bills.
• Both the caregiver and patient must receive intensive training, which can take from two to five weeks to complete.
• The caregiver must have adequate manual dexterity and vision to perform dialysis-related tasks and operate the equipment.
• You must also realize that, as the caregiver, your schedule will need to be adjusted to match your loved one’s home dialysis requirements.
If you feel uncomfortable committing to the option of home dialysis or have trouble finding a home health agency willing to assist, there is the option of receiving treatment at a dialysis center. This includes the following benefits.
• Your loved one will be surrounded by health care professionals trained to watch over patients who are receiving treatment.
• You will be able to leave your loved one at the clinic and go back to work, run errands, or take some time for yourself.
• It eliminates the need for training, equipment, and supplies in the home and the stress of providing dialysis care.
Regardless of whether your loved one is receiving dialysis at home or in a clinic, as the caregiver, you will need to ensure that your senior adheres to a prescribed treatment that includes following specific dialysis timing, diet, and medications.
Bed-Bound Patients
Bed-bound patients require around the clock attention that often involves medical practices or treatments. Some of the major duties that you will need to understand and be willing to perform before accepting responsibility for your bed-bound senior include the following:
• Your loved one’s position must be changed every two hours to relieve pressure on the back, buttocks, and hips to avoid bedsores.
• You must perform daily or twice daily skin checks to detect skin breakdown that will result in bedsores. It is especially important to wash the genital area because bacteria tend to collect there.
• You need to brush and floss your loved one’s teeth or assist him or her with the process.
• You may need to assist with eating and drinking liquids. You may be required to feed or hydrate your loved one if he or she cannot do it alone. If your senior has a feeding tube, you will need to manage any intake of nutrition and hydration through the tube.
• You must monitor and assist with breathing such as changing positions, clearing lungs and airways, or utilizing oxygen therapy equipment.
• You will need to assess his or her pain through visual or verbal clues and manage it with advice and instructions from your loved one’s medical or hospice team, including the use of medications or proper positioning.
• You may need to handle the elimination of body waste. This can involve adult diapers, ostomy pouches, or catheters.
Behavioral Issues
With many physical or mental conditions, there can be a drastic change in personality and behaviors. This is especially true with traumatic brain injuries and dementia. This can all be very stressful for the caregiver and family members. Depending on the part of the brain that is damaged and the severity, your loved one may experience personality changes, memory and judgment deficits, lack of impulse control, and poor concentration.
Here are common behavioral issues and actions that may help you to manage them.
• Rage, anger and yelling. Try to identify the cause and rectify the matter. For example, if your loved one is showing distress over chronic pain or anger about being incontinent, try not to take it personally.
• Swearing, offensive language, and inappropriate comments. Divert your loved one’s attention to another subject or talk about the good old days and engage his long-term memory skills. If diversion and reengagement doesn’t work, you may have to simply walk away and come back later.
• Hostile, irritable, or uncooperative attitude. Attempt to keep your loved one calm, secure, and comfortable by adhering to as normal a routine as possible. Watch for triggers that you can identify and avoid in the future, and do not show frustration or use words or body language that will encourage his behavior. Again, you may have to walk way and approach him again later.
• Paranoia and hallucinations. Be as reassuring as possible, because you are not going to be able to convince your loved one he is having a delusion.
• Physical, emotional, or sexual abuse. Try talking with your loved one about how his behavior makes you or other caregivers feel. If this does not work, enlist the aid of a counselor, the authorities, or possibly remove your loved one from his place of residence to a setting equipped to handle behavioral problems. Abuse in any form should never be accepted.
• Obsessive–compulsive behavior. Contact a mental health professional. Therapy and/or medication may prove helpful.
• Refusing to shower or manage hygiene. Do your best to keep your loved one clean. At the same time, consider whether your loved one may be embarrassed or too modest to have a family member clean him. If he has dementia, he may be frightened of the water. While poor eyesight, reduced sense of smell, or memory loss can be among the reasons for this problem, it can also be a method of control. A professional caregiver may need to be hired to manage his hygiene, or you may need to accept that he may no longer meet your definition of cleanliness.
One of the most difficult issues surrounding caregiving is managing those with behavioral issues, whether the person is living independently, with family, or in an assisted living community. It is possible that those providing care will ultimately find themselves unwilling or incapable of handling your loved one’s demeanor. Forgive yourself if you or those you originally turned to for support find it is too much and can’t follow through on well-intended promises. No matter what the desires are regarding caring for your loved one, remember that everyone has limits. There may come a time when your loved one will require some form of professional assistance or need to be relocated to a behavioral health facility to manage your senior’s medications and care.
While it is honorable that you may want to provide care for a loved one with special care considerations, there are instances where it might be in everyone’s best interests to make other arrangements. If you exhibit or experience any of the following reactions or feelings, find someone you trust to discuss the situation with, like your loved one’s medical team or a counselor, and investigate the possibility of turning your senior’s care over to another party:
• resentment, anger, or fear toward your loved one
• worry or stress that you cannot perform the tasks required
• extreme dislike or distress toward necessary caregiving duties
• obsessive worries that interrupt sleep and normal day-to-day activities
• loneliness
• helplessness
• suicidal thoughts