Chapter 3
Easing Caregiver Concerns with Proactive Behavior
Whether the role of caregiver was thrust upon you during a crisis or slowly crept up on you, you may find yourself handling it by simply putting out fires as they happen. This approach can cause a great deal of stress, dissatisfaction, and unhappiness for all concerned. It’s important to understand that, while you don’t have control over everything that can happen, you do have the power over how you will react. When you are resourceful, educated as to your options, and aware of solutions to possible issues, you will feel more confident and in control. This can have a ripple effect, resulting in the person you are caring for feeling more secure and developing a stronger sense of trust in the care he or she is receiving.
Part of becoming a successful caregiver is being proactive, recognizing your strengths and weaknesses, and understanding how they affect your ability to provide care. It also involves insightful planning into the future needs of your loved ones, which will allow you to move forward knowing that, when the time comes, you will have the awareness to reach out for help if or when it’s needed.
Recognizing the Early Warning Signs
Trying to plan for every change and possible crisis is overwhelming. It is not uncommon to focus on whatever needs are demanding attention at a given moment. Still, aging and the decline that accompanies it are ongoing and ever changing, and you can’t predict every possible scenario. What is needed or works today may be totally different tomorrow. The best you can do is consider what those needs might look like over time and have a plan in place to address them, as well as heightening your awareness of your loved one’s capabilities, regularly assessing his or her needs, and continually updating your plans for responding to these changes if they occur.
A great way to take charge of the information you need to accumulate, monitor, and access is to buy a large binder or to create a file on your computer where, over time, you can track issues or concerns and see a pattern of decline. In this document, you can create a reference section with resources that would provide services like in-home care agencies, home and yard care providers, and senior transport companies. You can also record your thoughts or decisions with dates for action. This information is meant to be used as a guideline but to remain fluid and easily updated.
Developing your watchfulness, staying alert, and acting proactively will help ensure that your loved one can remain as independent as possible and possibly minimize your level of caregiving. One key to being able to accomplish this is to break down the overall picture into separate areas such as physical decline and mental decline.
Evaluating Physical Decline
Physical decline is often the easiest change to identify. You can see how difficult it is for your senior to open jars with hands swollen from arthritis or how challenging climbing stairs has become even with the aid of a cane. As you begin to notice these changes, it is the right time to take a look around the home and think about what potential problems your elder may soon experience as things progress. There are some key issues to consider when evaluating physical decline, keeping in mind that each senior is different and that your evaluation can include anything that catches your attention.
• Home and yard issues. It is important to regularly assess the safety of the home and how well your loved one is maintaining it. Initially, the solution may be as simple as hiring cleaning and yard services, but as needs increase, other issues such as accessibility, comfort, and safety will demand attention. If you are unsure about or uncomfortable with evaluating the home yourself, there are organizations that will visit, identify potential problems, offer solutions, and modify the home to address the senior’s life changes. Search for keywords on the Internet such as “certified aging in place specialists” or “home modifications for the elderly” to identify local businesses providing this service.
• Mobility issues. It’s likely that, over time, your senior will lose some mobility. They will begin to stumble, may need a cane, or even require a walker or a wheelchair. Here are some questions to give you an idea of what you should be considering.
✓ How safely can your loved one navigate the home alone?
✓ Will the home accommodate mobility equipment?
✓ Are there stairs? If so, should a chair lift be installed or a bath be built downstairs?
• Bathroom issues. Bathrooms can be one of the most dangerous rooms in the house for seniors. You might ask yourself certain questions.
✓ Is the bathroom safe, or is it a danger zone for potential accidents?
✓ It is better to install grab bars, raise the toilets, switch out the tub for a walk-in shower, or remove bath mats and install carpet than to wait for a fall?
• Personal care issues. Though there are far too many concerns to address them all, here are some questions you should be asking yourself when monitoring your senior.
✓ How long will your loved one be able to shop and cook without assistance? Should you hire an aide to help?
✓ Your senior is wearing the same clothes day after day. Is the top-load washer and dryer becoming difficult to use? Should you switch to front loaders or ask the housecleaners if they would be willing to do laundry in addition to cleaning?
✓ Your loved one has had several toileting accidents and has refused to use protective underwear. How will you handle these accidents when they become regular occurrences?
• Pet issues. You may joke that your senior loves the dog more than he or she loves you, but it may be true—the dog is an important part of your loved one’s overall happiness. Perhaps you have noticed that your older person is having a harder and harder time giving the dog the exercise it really needs and sometimes forgets to put out fresh water or that the dog is very young and will probably outlive your elder. Your loved one worries about what will happen to the dog in that circumstance. Here are some questions to consider.
✓ How long can your loved one care for Fido without help?
✓ Who will provide help when it is needed?
✓ What will you do with the dog after your senior is gone?
As you can see, the list of foreseeable issues with your loved one’s physical needs can be endless. Do the best you can to be alert to changes and to be prepared for the future. By researching and documenting any resources or modifications that will be helpful when that need arises, you will greatly reduce the worry and stress of wondering what you’ll do when it happens.
Evaluating Mental Decline
Recognizing mental decline can be much more vague and difficult. Perhaps your mother forgot to take her medications this morning. Did she forget because her memory is slipping or was she interrupted and just didn’t think afterward? It’s possible that it was normal forgetfulness, but if there is a consistent pattern or you see other signs of memory issues, it could point toward a more serious condition. Often with mental decline, it takes time to see these patterns.
Mild cognitive impairment (MCI) can cause changes that are noticeable to the individuals experiencing them or to other people but may not be severe enough to interfere with daily life. Those experiencing MCI may forget information once easily recalled, such as appointments or events, and may also find that their ability to make sound decisions or to follow a series of steps to complete a task are more difficult. Not all people with MCI will get worse, and sometimes they can even get better.
Having an evaluation by a medical professional is the first step toward eliminating more serious conditions, such as dementia, but there are signs you can watch for in order to monitor a worsening of symptoms. This involves asking a variety of questions.
• How often is he or she forgetting things?
• Is your loved one forgetting important appointments or events?
• Is your senior increasingly overwhelmed by making decisions, planning steps, or following instructions?
• Is he or she getting lost or confused in familiar surroundings?
• Is your older person losing his or her train of thought or finding it difficult to follow conversations?
• Is he or she becoming more impulsive or showing increasingly poor judgment?
• Is your loved one able to recognize danger and can he or she respond appropriately?
• Does your senior pose a danger to anyone else?
Identifying Stages of Dementia
The changes that occur with dementia are subtle and can happen over such a long period of time that families often have no idea what stage their loved one is at. They can also worry a great deal over whether it is dementia or normal age-related cognitive decline.
Aside from visiting a doctor regularly with your loved one to assess his or her mental decline, you may be able to identify the phase of dementia if you understand the symptoms of the different stages. You may discover during the assessment process that your loved one is more advanced than you realized.
It is important to distinguish between delirium and dementia. Delirium, often confused with dementia, is a state of cognitive impairment and confusion, disorientation, and memory loss that is usually the result of an illness. The delirious person may not be alert and can be drowsy, semicomatose, or comatose. Symptoms occur rapidly, rather than over a period of time. Delirium is usually caused by a medical condition such as urinary tract infection, heart failure, liver failure, or the use of drugs or alcohol. The condition requires medical attention and, once treated, may completely go away.
On the other hand, dementia is an irreversible state of cognitive impairment and short-term memory loss related to organic brain disease such as Alzheimer’s disease, Huntington’s disease or Lewy Body disease. Dementia may have a rapid onset with medical conditions such as a stroke, but it is a sustained state, unlike delirium.
If you suspect that your loved one has dementia, the following information will identify symptoms you can expect at different stages. It is not, however, meant to replace any diagnoses from your doctor and other experts.
Early dementia may be indicated by the following symptoms:
• recent memory loss, which begins to affect normal function
• confusion
• loss of spontaneity, spark, or zest for life; depression may also be present
• loss of initiative, an inability to start anything
• mood/personality changes, anxiousness about symptoms, keeping to oneself
• poor judgment, bad decision making
• taking longer with routine chores
• trouble handling money/paying bills
Moderate dementia may be suggested by the following:
• increasing memory loss and confusion, shorter attention span
• problems recognizing close friends/family
• repetitive statement/movements
• restlessness, especially in late afternoon or night (“sun downing”)
• occasional muscle twitches or jerking
• perceptual-motor problems
• problems organizing thoughts or thinking logically
• difficulty finding the right words; making up stories to fill in the blanks
• problems with reading, writing and numbers
• behavior that may be suspicious, irritable, nervous, overly emotional, childish, or inappropriate
• a loss of impulse control; won’t bathe, trouble dressing, wearing 2–3 layers of clothing
Severe dementia may be identified by the following symptoms:
• inability to recognize family or self
• weight loss, even with a proper diet
• little capacity for self-care
• failure to communicate verbally
• a tendency to put everything in his or her mouth or to touch everything
• powerlessness to control his or her bowel or bladder
• difficulty with seizures, swallowing, or skin breakdown like bed sores and infections
If you are noticing signs but remain unsure or frightened that it might be dementia, mental status testing, which evaluates memory, the ability to solve simple problems, and other thinking skills, can validate your concerns. It will help you understand whether your senior shows the following symptoms:
• Is he aware that he has symptoms?
• Is he oriented to date, time, place, and who he is?
• Can he remember a short list of words, follow instructions, and do simple calculations?
Contact your senior’s primary care physician or ask for a referral to an appropriate health care professional for the testing.
Seeing Your Loved One in Today’s Reality
It’s quite normal for caregivers to experience a level of denial and see their seniors as they were in younger, more healthy years than as they are today. This is more likely when the attachment is between family members, especially the relationship of parent and child. It can be difficult when someone you love begins to decline, and you find yourself in the position of having to make decisions or to implement change on your senior’s behalf. You may feel anxious over making the right choices and respecting your loved ones with wanting to maintain your relationship with them.
This is admirable, loving, and kind. However, there is a risk that you may be making decisions based on memories rather than what the individual’s capabilities are today. As a result, decisions can be inappropriate or can lack proper focus.
It’s critical to be able to assess your senior accurately, acknowledge his or her strengths and weaknesses today, and provide the care that is needed now. For instance, you don’t want to insist that Mom must have a companion who plays bridge when she hasn’t played bridge in 15 years.
Twelve Signs It’s Time for Assistance
If you have someone in your life who you believe is struggling and you are unsure if he or she may need care, the following questions will help determine if your concerns are founded or unwarranted. These questions are designed to encourage thought provoking discussions. If you answer yes to one or more, it is time to consider the possibility that your loved ones may need help.
1. Are they safe?
✓ In the case of an emergency, can they respond appropriately to help themselves or others in danger?
✓ Are you noticing that they are making decisions that might not be in their best interests, such as giving money to every charity that sends a request in the mail even though they are overdrawing their account?
✓ Are they putting themselves in situations that could be potentially harmful or life threatening?
✓ Are you questioning their understanding and reactions to certain discussions or situations?
2. Are they a fall risk or do they have an unsteady gait?
✓ Does your loved one have a history of falls?
✓ Are you anxious watching them move about?
3. Are they covering up bruising or scrapes from falls?
✓ Is it possible that they have fallen and are afraid to tell you because they have hurt themselves and can’t remember what they did?
4. Do they need help managing their medications?
✓ Are they able to order refills and pick them up or have prescriptions delivered?
✓ Are they struggling with taking the medications as directed?
5. Do they have an increasing need for help with bathing, dressing, or other personal activities of daily living?
✓ Are they struggling to shower on their own?
✓ Have they always cared about their looks, but have now stopped properly grooming themselves?
✓ Are they wearing several layers of incontinence pads? Are they aware of when they need to use the bathroom? Do they always make it in time?
6. Are they able to cook, clean, or shop without assistance?
✓ Are they losing or gaining weight?
✓ Do you see rotten or expired food in the house?
✓ Are they able to grocery shop?
✓ Is the house well maintained and clean?
✓ Do you smell odors or see filth?
✓ Is the house in need of repairs?
7. Are you noticing severe hygiene problems?
✓ Do they wear the same clothes over and over?
✓ Are their clothes dirty?
✓ Can you smell unpleasant odors?
8. Are they able to manage finances?
✓ Is your dad forgetting to make the utility payments on time?
✓ Did he forget to subtract the mortgage payment from the account and is now overdrawn?
✓ Has your mom given an excessive amount of money to a charity and can’t afford to pay for her medications this month?
9. Are their cognitive skills, such as the ability to reason or make sound judgments, impaired?
✓ Have you noticed that some or all of their decisions might not be in their best interests?
✓ Are they putting themselves in situations that could be potentially harmful or life threatening?
10. Is their short- or long-term memory impaired?
✓ Are they forgetting if they took their medication?
✓ Are you worried that they could drive their car or wander off and not know how to safely get back home?
✓ Are they under- or overeating because they can’t remember when they ate their last meal?
11. Are they frequently confused or afraid to be alone?
✓ Do they remember that family has been to see them recently?
✓ Are they having visual or auditory hallucinations that frighten them?
✓ Is their living space so large it overwhelms and confuses them?
12. Are they becoming isolated from social functions?
✓ Are they declining invitations to family outings, perhaps because it’s too hard to follow multiple conversations at the table? Or have they stopped playing cards with friends at the senior center because they can recognize faces but can’t remember names and are embarrassed?
✓ Do you feel they are getting enough socialization?
Consulting with Health Care Professionals
Symptoms—evidence that there is something wrong with the body or mind—can vary widely from physical issues (such as headaches, weight loss, or incontinence) to mental or emotional issues (such as angry outbursts, anxiety, or depression). Sometimes seniors find it difficult to discuss their personal issues with anyone, including their health care professionals. They may see the need to give out personal information as an invasion of privacy or may be too proud, embarrassed, or intimidated to have an open and honest discussion about whatever is troubling them. They may also be in denial as to what is happening.
As a caregiver, it is important to encourage your loved ones to become partners in their care. When they are hesitant to be cooperative or proactive, you will need to become their advocate. This means that you will need to have your elder give permission for the professional to discuss their needs, diagnosis, or treatments/solutions with you on their behalf.
The following will help you identify key information necessary for you to become a strong supporter and to communicate more effectively with any professionals participating in the health of your senior.
• Familiarize yourself with her insurance. This includes health, dental, long-term care, and life insurance.
• Learn as much as you can about her illnesses or other concerns. Discuss with your loved one what is bothering her. Talk to those providing care or spending time with her, and ask what they see or feel is important to address. Understand as much as possible about her condition, treatments, medications, or medical equipment before appointments, which will give you a head start in discussions with the medical professionals.
• Be prepared for appointments. Understand the purpose of the meeting. Is it a routine follow-up or a thorough cognitive evaluation? Do you need certain information with you at the time of the appointment such as a list of medications and previous surgeries? Don’t assume the professionals will have it in their file. When making the appointment, ask if there is any documentation you should bring.
• Understand your loved one’s major concerns and goals. Ask your loved one what she wants to discuss and what she hopes to accomplish. If the dentist has suggested that your 86-year-old mother undergo major dental work to change her bite and to have her teeth whitened, is there a need for her to spend that kind of money, and does she really want to go through that kind of pain and commitment?
• Prepare a list of issues and questions you would like to discuss. If there are multiple topics, write them down. It’s easy to forget everything that is on your mind if the conversation turns serious or if the amount of information is overwhelming.
• Speak up and ask questions if you don’t understand or if you have concerns. Don’t be embarrassed if you don’t comprehend something the doctor, nurse, or other professional tells you. Don’t hesitate to tell them if you don’t feel they understand what you are saying.
• Take notes. It can be hard to remember everything being presented to you, especially if you are unfamiliar with the information. Take plenty of notes to refer back to once the material or news has had time to settle in your mind.
• Ask for a private conversation with the health care professional before the joint conversation. If you feel your senior won’t be honest or will play down or avoid what is bothering him or her, then try to talk with the professional privately so you can relay your concerns and give the doctor a chance to quietly observe or ask more probing questions.
Complicated Issues for Family Caregivers
Most of this chapter is focused on the person you are providing care for, but there are some areas where focusing on your own future is advisable. By giving some thought to these challenges and what they may mean to you, your family, and your loved one, you may avoid some unwanted consequences down the road.
Long-Distance Caregiving
If you are one of more than five million people providing care for someone who lives more than an hour away, being proactive and planning for possible needs and concerns will serve you well.
In the past, aging parents were cared for by their children or other relatives, but the changes to our lifestyles and the fact that families are often scattered all over the country means that more elderly people are living far from their families. The foundation for successfully providing long distance care is to plan ahead and to be organized.
Here are some tips to help you meet your loved one’s needs, avoid crisis situations, and maintain sanity for your entire family.
• Discuss with your senior what his or her needs are and explain how accepting help will ease your concerns. Our elders often worry about being a burden, so letting them know how much this will help you can be the key to gaining their acceptance.
• Use the information from the previous sections of this chapter to create a baseline. When visiting, you can record and monitor any issues or decline you notice and create a record to look back on and identify important changes.
• When visiting, take time to meet important people in your loved one’s life, such as neighbors, doctors, pharmacist, and friends. Create a support system by asking for contact information and give them yours so that if there is an emergency, you can be reached and action can be taken. Then stay in touch!
• Make sure you know where all important documents are kept and make copies for yourself. Chances are you will need to provide this information more than once to organizations or professionals like banks, health care professionals, lawyers, and pharmacists.
• Organize other information. Keep a file with medical records, prescriptions, and important contacts—anything pertaining to your loved one’s overall health and well-being. This will be handy if you need to verify or provide this information quickly.
• Familiarize yourself with local services for the elderly in the area. Your loved ones may not need help now, but if or when they do, you will have resources to turn to at a moment’s notice.
• Develop specific routines and questions to gauge your senior’s capabilities. For instance, set up a specific day and time you talk on the phone. Create a list of questions you ask each time and see if there are any unusual responses indicating struggles or mental/physical decline.
• Recognize when you need professional help managing the situation. If you find yourself wondering if you are doing enough or feeling that it’s too much for you, hire help. Find a geriatrics case manager to monitor your senior and put the necessary resources in place. Having someone local that will report to you and act on your and your loved one’s behalf can relieve a great deal of pressure and give everyone peace of mind.
Difficulties of the Sandwich Generation
If you find yourself caring for your elderly parents, still raising children, and searching for enough time to nurture your relationship and manage the house, you are part of the “sandwich generation.” Trying to do it all can push you to the breaking point. When you realize that you’re not handling all these responsibilities very well, you may end up feeling incompetent, hopeless, or demoralized. Getting yourself and your family organized can help you relieve the stress of caregiving now and into the future. Here are some suggestions to start regaining control.
• Organization, logistics, and time management are a must. This will require a great deal of time commitment. You probably already feel as though you are being torn in too many different directions before adding on the care of your aging loved one. It is imperative that you organize your time in minutes, hours, days, and weeks. Keep a calendar where everyone can see what time is already committed and can record new events, chores, and even personal time set aside to relax and recharge.
• Self-care will become even more critical. You must remember to think about yourself once in a while and do things that will renew and strengthen your ability to manage it all. Schedule date nights with your spouse, take a yoga class once a week, get up before anyone else and walk your neighborhood—anything that gives you a chance to take a breath, relax, and reconnect with yourself.
• Think of your children first. While in the midst of eldercare, you may not realize how essential it is to think of your kids first. Dr. Barry Jacobs, PsyD, a family therapist who specializes in issues related to family caregiving and the director of Behavioral Sciences at the Crozer-Keystone Family Medicine Residency Program in Springfield, Pennsylvania, stresses, “A caregiver’s first responsibility is to her children, not to her parent.” The key to doing this is clear communication with your senior about priorities and with the kids as to how they feel about the caregiving situation and how they might help. With this level of communication, your children will learn lessons about family values, sacrifice, and empathy.
• If you have siblings, cousins, or other family members who can help, keep them updated and included in the care. Schedule regular meetings to discuss the current situation and how everyone can pitch in. These meetings can occur over the phone, but it would be more ideal if they happen in person. Meeting face to face allows the participants to see and feel real emotion and the need for help. It’s much harder to ignore that one family member who is doing the majority of work when that person is sitting in front of you with dark under eye circles and the phone is ringing off the hook from his or her kids checking in.
• Ask for help, and don’t feel guilty. You should never feel guilty asking for support whether it’s from family or professional caregivers. Asking for help before you are desperate will make this time of life more rewarding and pleasurable for everyone involved.
Is Your Own Retirement Suffering?
It’s a mistake to dive head on into the role of caregiver without giving any thought as to how that decision might affect your retirement. Some people will quit their jobs or reduce their hours, and others will spend their own money on providing resources for someone they love. It’s important that while trying to do what you might consider right and decent, you don’t jeopardize your own financial future and retirement.
Here are steps you can take to minimize any effect caregiving will have on your future.
• Reconsider any thoughts of quitting your job. The long-term financial consequences of losing your wages can be far greater than you anticipated. A 2011 MetLife study shows that the loss of total wages, Social Security, and pension accounts for a caregiver over 50 leaving a job early averaged $303,880.
• Consider taking family medical leave instead. If the caregiving situation is severe and you qualify, you will be able to take 12 weeks a year of unpaid leave and can return to your position and benefits afterward.
• Resist the urge to use your savings to pay for care. Don’t jeopardize your future by spending your life savings on a loved one’s care. Investigate any resources available to your elder, such as state Medicaid programs, the VA Aid and Disability Benefit, long-term care benefits—even selling or mortgaging your loved one’s property to pay for care.
• Adopt a detached financial approach to providing financial support. In order to protect yourself, your immediate family, and your own financial future, you may need to say “no” to your parents. Set realistic financial expectations and specify clear terms for providing help such as how much and for how long you will provide support.
If you feel guilty about not providing financial support to your loved one, consider this—you don’t want to put your own children in this same situation when you are older and need care. By protecting your retirement, you are protecting them as well.
While you are busy planning and preparing for your duties as a caregiver, remember to plan ahead for some serious quality down time for yourself. Arrange for a vacation or at least a very long weekend several times a year. Find someone to cover for you or make arrangements for your loved one to stay at a community that provides respite care and instruct them not to bother you unless it’s a life or death emergency. Then turn the phone off and only check it or your e-mail once or twice a day. Yes, caregiving is a job, but planning ahead and scheduling time to recharge will make you a better caregiver in the long run.