Читать книгу The Complete Caregiver's Organizer - Robin Porter - Страница 7
Оглавление“One person caring about another represents life’s greatest value.”
—Jim Rohn
When Did This Happen?
I remember the day my mom got old—or more precisely, the day I noticed that she was slowing down. We were out shopping for a gift and I was chatting away, looking at the window displays, when I suddenly noticed she was no longer walking next to me. When I stopped and turned around, I found my mom several yards behind me and struggling to catch up.
“Are you okay?” I asked with concern. Now, you have to understand that I’ve been conditioned to walk fast. My mom always moved at a brisk pace, and I spent most of my childhood trying to keep up with her!
“I’m fine,” she answered, her voice tinged with frustration. “What’s your hurry? You’re practically running.”
I apologized and slowed my stride, but as the day went on, I began to notice other things I hadn’t before: Her gait seemed slightly off balance and she used the back of the chair to help herself up and down. In fact, once my eyes were opened, I began to detect signs of aging in both my parents. It was as if they had gotten old overnight.
Of course, they had probably been slowing down for quite some time, but because I was with them so often, I hadn’t noticed the gradual changes. As they say, it’s sometimes hardest to see what’s closest to you. Or, perhaps, I just didn’t want to think of them as getting older. My parents had always been active and full of life, and even though they were both in their early 70s, they didn’t act “old.” My dad was always busy building something—from birdhouses to decks—tending his large vegetable garden, or repairing things around the house. It was just hard to imagine my parents as elderly.
But then reality hit hard. At 72, my dad had a near-fatal heart attack. After a long, difficult surgery, from which he never fully recovered, the doctors told us he was suffering from congestive heart failure. Over the next two years, his health declined rapidly. Although my mom was able to take care of most of his daily needs, I began doing their shopping, running errands, and helping around the house as much as I could. My son, who was only two years old at the time, served as spirit brightener. Even as my dad lost his appetite and became increasingly frail, his face would light up as soon as my son burst through the door looking for “Pa.”
Before long, I was assisting with meals and adding nutritional supplements, helping my mom understand the long list of medications my dad was taking, and making nearly daily visits, which was no easy task as they lived nearly an hour away. Amazingly, my dad never lost his wonderful spirit, and when his heart finally stopped he was in mid-sentence, telling a nurse about his grandson with a smile on his face. He was 74, and, in my opinion, far too young to be gone.
At the time, I thought losing my beloved dad and helping my mom through the aftermath was the most difficult thing imaginable, but I was wrong: The years ahead proved to be much harder. Like many spouses who have been married for decades, my mom’s health began to deteriorate after losing her partner in life. In addition to grief, which can surely take its toll, she revealed that she had been suffering from chronic back pain. She hadn’t said anything while my dad was sick, but it had progressively gotten worse. An MRI confirmed severe spinal stenosis, which, sadly, would only get worse with time. We tried physical therapy, spinal injections, and traction, but the only thing that provided relief was high doses of pain medication. From there, her health problems began to pile up like dominoes toppling over. And, once again, I found myself in the role of caregiver.
No Experience Necessary
Most people become caregivers without preparation or prior experience. They simply inherit the role out of necessity. Sometimes the job develops gradually, as a spouse or parent begins to need help with little things. As discussed in the introduction, statistically the majority of caregivers are middle-aged women caring for their mothers, but caregivers and care recipients run the gamut, from spouses and partners, to siblings and adult children, and even friends and neighbors. In fact, according to the Institute on Medicine, unpaid caregivers provide an estimated 90 percent of all long-term care, most of the recipients being family members. The type of care being provided varies widely, from temporary care following an accident, surgery, or illness; to long-term assistance that involves round-the-clock care. Whether you are preparing meals and running errands, or helping with the basic activities of daily living (ADLs), such as bathing, dressing, and feeding, caregiving is a demanding role that requires a long list of skills—and a good support system. The truth is, not everyone is cut out for the job.
Are You the Best Choice?
Sometimes people take on the role of caregiver “automatically,” without thinking about what it entails and their ability to perform the necessary tasks. Sometimes they have no choice in the matter—no one else is willing or available, or finances prohibit hiring professional help. In some cases, the care recipient is adamant about who they want as a caregiver and unwilling to consider other options. However, if you are in a position to decide whether you are the best choice to become someone’s caregiver, there are a number of things you should consider before taking on the role.
Questions
How much help does the care recipient need?
Many people will downplay the amount of care they need, so be sure to consult with a doctor to get a complete picture of his or her needs. You can also hire a Geriatric Care Manager, nurse, or social worker to perform a needs assessment and provide recommendations. When someone is being discharged from the hospital after an accident or illness, particularly a senior, it’s common for a social worker or occupational therapist to assess the person’s living arrangements and make suggestions for care and safety.
Have you discussed the situation with family members, including your spouse and children?
Do you have young children at home who will limit the amount of time you can devote to caregiving? Is your spouse onboard and willing to help out?
Have you asked the care recipient whom they would prefer to provide care?
Is he or she more comfortable having certain personal tasks, such as bathing and dressing, done by a professional?
Are other family members or friends available and willing to help with tasks?
Remember that even siblings living far away can help with finances or paperwork. They can also provide occasional respite for a primary caregiver.
Are you working outside the home? If so, are you willing or able to adjust your work schedule or give up work if necessary? How will this affect your financial situation?
Keep in mind most workers have statutory rights under the Family Medical Leave Act (FMLA), including the right to unpaid leave in emergencies. You may also be eligible for extended leave, depending on your employer. According to a report by AARP, entitled The Economic Value of Family Caregiving (2012), 69 percent of working caregivers reported having to rearrange their work schedule, decrease their hours, or take unpaid leave in order to perform caregiving responsibilities—another 6 percent quit work entirely.
If the care recipient will be living with you, is your home functional and safe, or can it be adapted?
There are many tools available, such as stair lifts, ramps, and safety bars, but the expense can add up quickly. Are you able to afford these adaptations?
How is your relationship with the person for whom you will be caring?
Caring for someone can bring you closer together—or it can exacerbate tensions and strain a relationship. Either way, it’s common for relationships to change during caregiving. Are you prepared for these changes? Do you feel you have the patience and emotional stamina to take on this role?
How is your own health? Are you physically able to effectively care for another person?
It’s one thing to provide care for someone when you are young and healthy, and quite another when you are older and suffering from your own health conditions
If your caregiving responsibilities become more demanding over time, do you have others to support you or the resources to hire help?
According to the Family Caregiver Alliance, “The close relationship between the caregiver and care recipient is a shared relationship with involved emotions, experiences, and memories, which can place a caregiver at a higher risk for psychological and physical illness.”
In an ideal world, those taking on the role of caregiver would have all the right answers to these questions. Of course, that rarely happens! Most caregivers find themselves struggling to balance family obligations and caregiving tasks, making difficult choices regarding work, and/or neglecting their personal health. Still, it’s important to honestly assess your situation and abilities, and consider all perspectives when taking on the role of caregiver, which includes the person for whom you would be caring. Surprisingly, many well-meaning relatives jump into caregiving mode without discussing the situation with the care recipient, which can often lead to resentment. When possible, be sure to ask the care recipient:
Where would you like to be cared for? Most people choose to stay home. This is not always possible, but if it is, his or her wishes should be accommodated. Studies show that people fare better when they are in a familiar environment.
If staying home is not possible due to safety or other practical considerations, what type of living arrangement would be preferred (e.g., moving in with you, assisted living, skilled nursing facilities)? (See chapter 4 for living options.) Never assume that someone would be more comfortable sharing a residence with you than considering other arrangements—always ask.
With what does the care recipient need help? And, whom would he or she prefer do those tasks?
Assessing the Level of Care
That last question can be tricky. If someone is recovering from a surgery or health event, such as a stroke, the level of care required is usually obvious. But sometimes the signs are more subtle. As mentioned, most people don’t realize how much care they actually need or are unwilling to admit how much help they require. It may stem from a fear of losing one’s independence, not wanting to impose on loved ones and “be a bother,” or simply finding it difficult to ask for help. It’s best to start with the straightforward approach and ask what he or she needs help with, but don’t rely on that answer alone. Far too often, we don’t realize how much assistance a person needs until there is an accident or health crisis. Don’t wait for your loved one to ask for help! If you suspect someone needs more assistance than he or she is indicating, you can look for some telltale signs and use them to broach the subject of more care.
Remember, the person who tries to hide an unsteady gait and refuses to use a cane or walker when needed is much more likely to fall and break a hip. By the same token, the person who is starting to forget things is a prime candidate for leaving a pan on the stove or becoming dangerously disoriented while out walking or driving. Being observant and stepping in can often prevent serious problems down the road.
Signs to Watch For
Not getting dressed—may indicate difficulty dressing due to dexterity issues, back problems, or depression.
Not bathing regularly (body odor)—may indicate difficulty getting in and out of the tub/shower, fear of falling, or depression.
Not eating well (weight loss)—may indicate loss of appetite, difficulty preparing meals, handling pots and pans and utensils, or depression.
Spoiled food in the refrigerator, groceries not being eaten, or large amounts of uneaten food in the trash—may indicate general loss of appetite or difficulty cooking.
A normally tidy house becoming messy, laundry piling up, dirty toilets/sinks, unwashed dishes, etc.—may indicate difficulty with household tasks or dexterity/mobility issues.
He or she seems depressed or despondent; loss of interest in normal activities.
Signs of memory loss—leaving things in odd places, getting lost or disoriented, forgetting to take medications.
Bruises, cuts, or burns—that may be a result of falls, banging into things, or having trouble lifting pans off the stove or putting things away.
Items left on countertops/dressers—which may indicate trouble bending or lifting.
Is It Really Role Reversal?
When an adult child begins to care for their aging parent, it’s often referred to as “role reversal,” but that’s not accurate. While it’s true that you begin doing things for your parents that they once did for you as a child, the dynamics are much different. I used to jest that it was much easier caring for my 8-year-old than my 80-year-old, because my son would listen to me (well, most of the time), while my mom rarely did. I may have joked about it, but there was really nothing funny about the situation. In fact, it could be exasperating! As a parent, you have authority over your children; you can tell them what to do and have the expectation of them following your directions or be punished. That is not how it works with your aging parents! Let’s face it, your parents will always be your parents and you will always be their child, which means there is a certain amount of respect and deference that comes with these roles. In simple terms, it makes it difficult to tell them what to do. You can strongly suggest, for instance, that your mother or father use a walker to avoid an accident, but you cannot force them to do so. You can reinforce the importance of following doctor’s orders or taking medications as prescribed, and even assist with the administration, but again, you cannot order them to comply. This makes caregiving especially frustrating, because you have all of the responsibility for someone’s well-being, but none of the authority.
Similarly, many spouses caring for a husband or wife find themselves in a precarious position. Adults are not children, and even when they are unable to care for themselves, they do not want to be treated as such (would you?). Trying to force someone to do something against their will, even if your intentions are noble, will create nothing but resentment and hard feelings. Unless someone is suffering from diminished mental capacity or declared mentally incompetent, a caregiver can only do so much.
After my mom’s second hip fracture, the social worker at the hospital told me in no uncertain terms that she should not be living alone. Her tone was accusatory—in her mind, I was obviously neglecting my mom. What the social worker did not know was that I had been trying to get my mom to move in with us or consider an assisted living facility for years. In fact, I had begged, pleaded, used guilt, and in my less proud moments, resorted to threats—all to no avail. She adamantly refused to give up her independence, even after several accidents and surgeries. Was I happy about her decision? No. Was I constantly worried about her safety? Yes. Was her stubbornness slowly driving me crazy? Absolutely! But, what could I do? So, I looked that social worker in her eyes and said “I agree completely; she should not be living alone. You try telling her that!”
The social worker spent over an hour talking to my mom about why she should change her living arrangements, and when she finally left, she looked like she wanted to tear her hair out. (Welcome to my world, I thought.) She actually stopped and apologized to me for her earlier tone. I understood her point of view—there are many seniors who are neglected by family, and I’m sure she sees many sad cases. However, short of having my mother declared incompetent and assuming guardianship, there was very little I could do to change her mind. In the meantime, I considered certain concessions as major victories: My mom had moved into a small condo a mile from our house; I had convinced her to use a walker, wear an emergency alert necklace, installed safety bars, and made other adaptations that she didn’t really like, but to which she finally agreed. I visited daily, checked in numerous times a day, and helped her with many ADLs. Still, I was worried about her living alone.
At one point, as I was sharing my concerns and frustrations with my mom’s doctor, he took my hands and told me “You are doing the best you can. That’s all anyone can ask.” When I inquired (half jokingly) if he thought my mom was mentally incompetent, he answered with a grin, “Not unless stubbornness is considered a mental disorder.”
The bottom line is caregivers walk a fine line between providing care and taking over completely. Having someone declared mentally incompetent and assuming guardianship is a drastic measure, and one that’s difficult to obtain legally (see chapter 2). It should only be used in circumstances when the care recipient is truly unable to make decisions on his/her own, such as those suffering from dementia or Alzheimer’s—not just stubbornness!
Assembling a Team
Now that you’ve become a caregiver, what does that mean? You are responsible for another person’s well-being, which is no small undertaking. In many cases, you will be a chauffeur, nurse, housekeeper, accountant, patient advocate, and companion—not to mention daughter, son, husband, wife, or parent. No doubt, you will also have your own family and work obligations. There are no easy solutions, but one thing is certain—You cannot do this alone!
If you are a caregiver for a short duration, it may be possible to dive in and assume all these roles, but when caregiving becomes a long-term job, no one can keep up that kind of pace without eventually suffering burnout, sacrificing one’s health, or neglecting one’s family. It’s been said that caregiving is a marathon, not a sprint. If you wear yourself out in the first mile, you’ll never make it to the end. That’s why it’s so important to learn from others, rely on professional advice, and seek support.
Think of yourself as the coach who is assembling the best team possible. Some recruits are obvious: you need the help of a trusted primary care physician and other medical specialists, such as an ophthalmologist, podiatrist, and a physical therapist. Also, don’t underestimate the importance of a physician’s assistant or nurse within the practice, as well as your local pharmacist, who can warn you of drug interactions and side effects. It’s wise to develop a good rapport with all members of the medical lineup. Other team members may include:
Siblings or Other Family Members—Begin with a family meeting where you designate tasks and agree on the type and amount of care needed. Create a list of specific tasks and a schedule, so everyone involved knows who is responsible for what and when. The care recipient should also have a copy of this schedule. Communicate clearly and often. You may want to hold regular family meetings to talk about important decisions, medical issues, and inevitable changes.
Neighbors—Those who live close by can look in on your loved one or alert you of potential problems.
Friends—People who offer to help may be willing to run errands, pick up prescriptions, drop off a meal once in a while, or stay with a loved one while you do something else.
Community Services—Many communities offer free transportation to seniors and disabled residents. If someone is well enough to go out on their own, but simply cannot drive, this service is a great way to get around. Local communities also offer senior centers, which give folks an opportunity to join book clubs, play card games, and participate in other social activities in a safe environment.
Adult Day Centers—These facilities offer care and companionship for seniors who need some assistance. For those who work outside the home, adult day centers can provide care during work hours. They may also be used to give caregivers time to handle personal business or have some time to themselves. There are typically two types of adult day care: social care and health care. As the name implies, social care centers offer social activities, meals, recreation, and some minimal health-related services, while healthcare centers provide more intensive health and therapeutic services. Depending on the facility, adult day centers may include counseling, education, exercise, meals, physical therapy, recreation, medication management, and even transportation to and from the center. While adult day care is not typically covered by insurance or Medicare, some financial assistance may be available through certain federal or state programs. You can also look for programs offered by nonprofit entities, such as churches, that may offer these services at a lower cost.
Residential Care—Some assisted living or skilled nursing facilities allow care recipients to stay for a short period of time so caregivers can take a vacation or recover from their own health issues.
Paid Help—Housekeepers, home aides, and visiting nurses can also play important roles on your caregiving team. (See chapter 3 for more on hiring home aides.)
Though many people may contribute to the care of a loved one, someone needs to be in charge! As coach, you are responsible for screening facilities, hiring help, coordinating schedules, and staying involved with all parties, as well as your caregiving tasks.
You can use a simple chart such as the one that follows to start to assign tasks to teammates. Be sure to communicate well and often with those who have agreed to help.
Resources for Seniors
When caring for an aging loved one, a good resource to consider is a Geriatric Care Manager (typically a social worker or nurse). These professionals help caregivers by serving as guides, recommending care options, providing information on potential financial benefits, and suggesting solutions to ongoing problems. To locate a Geriatric Care Manager in your area, visit www.caremanager.org.
The Eldercare Locator is provided as a public service of the Administration on Aging, U.S. Department of Health and Human Services and is a nationwide program that connects seniors and their caregivers with a variety of services. It identifies trustworthy local support services that allow seniors to stay in their homes with the help of caregivers. For more information, go to www.eldercare.gov.
Visit www.sprypub.com/Caregiver to download.
Even if someone is living in his or her own home and being cared for by the team approach, it’s a nice break for the care recipient to spend a weekend or perhaps a Sunday at a family member’s home. It gives the person being cared for a change of scenery, a chance to share meals with loved ones, and an opportunity to interact with others in a different environment. These weekly visits could also be part of the master schedule.
A good team has a strategy, they “huddle up” often and talk to one another, and they remain flexible to changes. By clearly outlining expectations and responsibilities, you can avoid misunderstandings and possible resentments, while providing the best care possible for a loved one.
Keep in Touch
If you are taking a team approach to caregiving, it’s very important to keep communications open. Even if you are unable to meet in person, a weekly conference call or email can convey important information. For instance, a quick weekly email might cover changes in health, what the doctor said at the latest appointment, new medications, things that need to be done around the house, and even potential problems (e.g., “I think dad is losing weight and needs to start drinking a nutritional supplement”). Don’t forget to ask for the opinion of other caregivers, instead of simply making decisions. And finally, injecting some humor into the situation is okay, and may even alleviate some stress!
Care for the Caregiver
Learning the Importance of Caring for Yourself—The Hard Way!
Okay, confession time. When I first took on the caregiver role, I did not heed the advice and warnings of others. When well-meaning friends told me to take care of myself, I would thank them, while inwardly rolling my eyes and thinking, “Yeah, right. Who has time for that?” First of all, my team was small—in the beginning, it was very small, consisting of just me. My husband was extremely supportive and helpful, but he was working full-time and taking up the slack at home. My young son became very adept at helping to get the walker in and out of the car, opening doors for Grandma, and assisting with chores around her condo, but he was just a little boy. My mom barely knew her new neighbors and had no close family members. And so I took on everything, believing I could do it all.
Things started out fine. My mom and I worked out a schedule. I hired a cleaning person, who eventually became a good friend to my mom. Early on, my mom’s personal needs were manageable—which is not to say they didn’t take up a lot of time. Sure, I was skipping my own health screenings, because who wants to spend more time in a doctor’s office when you’re already devoting hours each week at multiple appointments for someone else? And, yeah, I may have cut back on sleep so I could spend more time with my husband and son and get things done around my own house. It’s also possible that I was running unnecessary errands simply because I could not say “no.” But, overall, I felt I had things under control. Then I got a wake-up call.
One day, I woke up with severe back pain. The diagnosis was a herniated disc. When six weeks of physical therapy did not improve the situation, I agreed to surgery. I believe my exact words were, “I really don’t have time for this. You have to fix me!” The surgery was successful, but it required several weeks of recovery, during which I could not drive, and another six weeks of physical therapy. While I was out of commission, I had no choice but to rely on others, including paid home aides, to care for my mom. She was not pleased. I would receive calls from my mom complaining about how so-and-so didn’t get the right groceries (translation: she didn’t pick up little treats and things my mom forgot to put on the list like I did). She didn’t like the way the home aide did the laundry or the meals that were being prepared by a friend. Every conversation ended with her asking, “When will you be back?”
Mind you, my mom rarely asked how I was doing or expressed concern about my recovery. I tried not to take this personally. I knew she loved me and cared about my health, but was consumed by her own pain and frustration. A friend and psychologist once told me this seemingly selfish attitude happens frequently. As a care recipient loses more and more independence and control, and is expending all their energy dealing with chronic pain and deteriorating health, they simply do not have the capacity to see the big picture and, therefore, become very focused on their own needs. I could understand that, but still, it was hurtful and very stressful.
Once I was given the green light to drive, I resumed my caregiving duties, but was warned to take it easy. Easier said than done! I was just getting back to feeling good again, when a strange thing happened: I began to have heart palpitations that kept me up at night. At one point, I felt like my heart might actually leap out of my chest. I also had pain in my jaw and down my arm. Since I was very familiar with heart attack symptoms, I took no chances and wound up in the emergency room. After undergoing an EKG, a stress test, and a heart ultrasound, the cardiologist gave me good news: there was nothing wrong with my heart. The bad news, however, was that I still felt horrible! I couldn’t sleep, my hands were shaky, I had trouble focusing, and my chest still hurt.
Finally, my physician, whom I’ve known for many years, told me I was suffering from severe anxiety. When she delivered this news, I shook my head and said, “That can’t be right. I’m not an anxious person.” Ask anyone who knows me and they will tell you I am a calm, “glass half-full” kind of gal, who doesn’t freak out easily. So, it was hard for me to accept her diagnosis. However, I was desperate for relief, so I agreed to try some anti-anxiety medication. Within a week, my symptoms subsided. (You have no idea how wonderful sleep is until you’ve been deprived of it for weeks!)
Of course, we all know that medication works best when taken in conjunction with lifestyle changes. Just like blood pressure medication is more effective with diet and exercise, anxiety medication works better when you take other measures to alleviate stress. After months of feeling terrible, I knew I needed to make some changes.
I began with an honest conversation with my mom. I assured her that while I loved her dearly and would do my very best to care for her, I could not do it alone, especially as her health worsened and her needs escalated. Like it or not, we needed to find a home health aide to come in several times a week. I still made nearly daily visits, did her shopping and other errands, took her to appointments, managed her medications, and just spent time being a daughter.
On a personal level, I made time for the things I had been neglecting, such as regular check-ups and daily exercise (the dog was thrilled to go on more frequent walks!). I found time for prayer and meditation, I put dates on the calendar to have dinner with friends, and, most importantly, I reconnected with my husband and son. Things were still hard, but I felt better able to handle the role of caregiver.
It might seem impossible to carve out time for yourself when you are immersed in caregiving, but it’s absolutely necessary! You may have to be creative; you may have to be demanding; and sometimes you simply have to put your trust in others. Even with help, caregiving is physically and emotionally demanding; without help, no one wins.
Preserving Relationships
Trudi is a young wife and mother who never expected to be a caregiver at age 30. However, when her husband, Mark, an Army officer, returned home with a traumatic brain injury as a result of an improvised explosive device (IED), she took on the role without hesitation. In fact, as she later realized, she took on more than she should have.
“I love my husband, and I wanted to do whatever I could to help him,” said Trudi. “But the more I did for him, the angrier and more despondent he became. At first, I thought his anger was due to the injury, but it was often directed at me. We also lost all intimacy between us.”
One day, feeling frustrated and exhausted, Trudi broke down at an appointment. “We were seeing a wonderful occupational therapist, and when he saw how upset I was, he took me aside and let me vent.”
The therapist gently suggested that perhaps Trudi was doing too much for Mark. “It can be humiliating for some people, particularly a strong man like Mark, to have his wife bathe and dress him, or help him with the toilet,” the therapist explained. “You have to remember that he is not your child, but your husband.”
Trudi took his advice to heart and found a home health aide to perform the more personal tasks for Mark. This allowed her to focus on other care duties and, most importantly, simply be a wife and mother. Mark’s anger subsided as he regained some dignity and independence, and the couple was able to reclaim their intimate relationship.
“Even though Mark has made huge strides, he may never completely recover,” said Trudi. “But he is still the same man I married, and now that we’ve rekindled our relationship, we can focus on making the most of the future.”
In summary, becoming a caregiver is a major undertaking. It’s important to consider the impact it will have on you and your family, as well as the care recipient. Caregiving should not be a solo endeavor, so assemble a good support team and create a plan. Having honest conversations with everyone involved regarding levels of care, expectations, responsibilities, resources, and preferences is the best way to begin. Of course, situations are apt to change, so keep communications open and remain flexible. And just as importantly, make sure that plan includes time to take care of you, because a caregiver who is physically or emotionally unwell cannot take care of anyone!
