Being a family caregiver is stressful. Unless action is taken, stress will continue to build. Family members, even the loved one you’re caring for, may not understand your stress. Some family members may think you’re exaggerating. What’s all the fuss about?
“I’m not rushing you,” my husband declared. “Take your time.”
My sweet husband can tell when I’m stressed. “I’m not rushing you,” he often said. “Take your time.” But I can’t take lots of time because there is so much to do, and I’m always behind. This makes me feel like I’m not a good caregiver. This is my 19th year of caregiving and they have taught me to keep an eye on stress.
Knowing the sources of stress helps caregivers to cope with it.
“Just as the nature of chronic, progressive illnesses makes it normal for you as a family caregiver to experience stress, the situational losses stemming from the illness make it normal for you as a family caregiver to experience grief,” she writes. And grief takes many forms.
Anticipatory grief –- a feeling of loss before a death or dreaded event occurs -— is also a source of stress. There are many symptoms of anticipatory grief and each one has an impact. My mother had a series of mini-strokes and, according to her physician, they added up to Alzheimer’s. I was her family caregiver for nine years and felt like she was dying cell-by-cell before my eyes.
Never-ending tasks can also cause stress. A “To Do” list may change gradually, as a loved one improves, or rapidly, as a loved one fails. Calling 911 can change tasks—and life—drastically. Although I’m a list-maker, sometimes I just go with the flow.
Financial worries are a source of stress and can plague caregivers day and night. Many fear they will run out of money and I understand this feeling. My husband and I live on a fixed income and the rising cost of living scares us. To cut down on expenses we’re eating less meat and rarely spend money on entertainment. Going to a movie is a big deal for us.
Personal health problems can cause stress too. I have arthritic hips and am stiff when I get up in the morning. In short, I’m getting creaky. We will have to hire more help or move to assisted living if my hips get worse. Thankfully, this hasn’t happened and we hope we can life here for several more years. What can family caregivers do about stress?
We can start by identifying its sources. Next, we can practice self-care. We can take steps to reduce expenses, always have a Plan B, and be on the lookout for anticipatory grief. Don’t let grief spoil a day. As author Leo Buscaglia noted years ago, “Worry never robs tomorrow of its sorrow, it only saps today of its joy.”
I try to live in the moment, find joy in each day, and savor this time with my husband. We are blessed to have each other!
The Mount Sinai Hospital emergency room looks and sounds like hundreds of others across the country: Doctors rush through packed hallways; machines beep incessantly; paramedics wheel stretchers in as patients moan in pain.
“It’s like a war zone,” said physician assistant Emmy Cassagnol. “When it gets packed, it’s overwhelming. Our sickest patients are often our geriatric patients, and they get lost in the shuffle.”
But just on the other side of the wall is another, smaller emergency room designed specifically for those elderly patients.
Patients like Hattie Hill, who is 105 years old and still living at home. A caregiver brought her in one rainy day in late spring because she had a leg infection that wasn’t responding to antibiotics. Hill, who also has arthritis and a history of strokes, said she prefers the emergency room for seniors because she gets more attention.
“I don’t have to wait so long,” she said. “And it’s not so loud.”
Packed emergency rooms are unpleasant for everyone. But they can be dangerous for elderly patients, many of whom come in with multiple chronic diseases on top of a potentially life-threatening illness or injury.
“Who is going to suffer the most from these crowded conditions?” asked Ula Hwang, associate professor in the emergency medicine and geriatrics departments at the Mount Sinai School of Medicine. “It is going to be the older adult … the poor older patient with dementia lying in the stretcher with a brewing infection that is forgotten about because it’s crazy, chaotic and crowded.”
Seniors who come into traditional emergency rooms are frequently subjected to numerous and sometimes unnecessary tests and procedures, according to research and experts. They stay longer and their diagnoses are less accurate than younger patients. And they are more frequently admitted to the hospital by ER doctors overwhelmed by the constant influx of very sick patients.
“You’ve got this surge of more and more older adults coming to the emergency departments,” said Kevin Biese, co-director of geriatric emergency medicine at the University of North Carolina School of Medicine. “Yet there hasn’t necessarily been this recognition that [they need] different screening, different treatment and they are going to have different outcomes.”
Geriatric emergency rooms, which are slowly spreading across the country, provide seniors with more expertise from physicians, nurses and others trained specifically to diagnose and care for the elderly, researchers said.
The staff in these specialized ERs collaborate closely not only to treat the seniors’ immediate health problems but also to reduce their risk of confusion, bed sores and over-medication. Senior ERs are designed to be more quiet and tranquil.
Geriatric ERs have the potential to lower health care costs because staff can more carefully discern who needs to be admitted and who can be cared for outside of hospital walls, Hwang and others said. That tends to reduce hospitalizations among the elderly.
Mount Sinai, which opened its geriatric emergency room in 2012, is part of a nationwide effort to find a better way to treat elderly patients. The first geriatric ER opened in New Jersey in 2008, and now there are more than 100 such units nationwide. Several others are being planned, including in California, North Carolina, Connecticut and Texas.
Geriatric ERs vary widely. Some are separate units with trained staff; others are merely sections within traditional emergency rooms with extra hearing aids and other senior supplies. But professional medical organizations have developed guidelines to standardize design, staffing and patient screening.
The boomlet in geriatric emergency rooms stems in part from an increase in older patients with complex conditions who are seeking care in regular ERs. That has caused some providers and hospitals to seek more effective and efficient ways to treat them.
About 20.4 million patients over the age of 65 were treated in emergency rooms in 2011, up from 15.9 million a decade earlier, according to a national hospital survey conducted by the Centers for Disease Control and Prevention. As the population ages, older patients are expected to make up an increasing share of ER patients.
The Affordable Care Act also has fueled the expansion of senior emergency rooms. The law assesses penalties when too many patients return to a hospital too soon after discharge. Facilities have tried to reduce readmissions in part by providing better emergency care and triage.
Now, that growth could continue as hospitals face additional pressure to provide more efficient and less costly care to their Medicare patients. The Centers for Medicare and Medicaid Services announced in January that within two years, half of all traditional Medicare payments will go to providers based on quality of care rather than quantity of services.
Emergency departments are the perfect places to make changes that could help control spending, because they are gateways between home and costly hospitalizations, Hwang said. About 60 percent of elderly patients who get hospitalized come through the emergency room, according to a 2013 Rand Corporation study. A quarter of those hospitalizations are preventable, according to one 2012 federal study.
“Hospitals that before didn’t think there was any need for this are saying, ‘Can you help us create a geriatric ED?’” Hwang said.
Hospitals also may view specialized emergency departments as a marketing tool to reach the growing elderly population.
The geriatric emergency room at Mount Sinai is set up differently than traditional emergency rooms. It has thicker mattresses to help reduce the chance of bed sores, raised toilet seats, hand rails in the hallways and reduced-noise curtains.
The department is allotted 20 beds, but the main hospital sometimes steals them for other patients. That leaves some older ER patients waiting in the hallway.
Over a two-day period in May, dozens of older patients were treated for falls, dizziness, severe pain and shortness of breath.
John Fornieri, 80, came in after falling on his floor at home. Fornieri, an artist with arthritis and a heart condition, said he nearly lost consciousness. An x-ray showed he had broken a hip.
Fornieri said he was grateful that the geriatric emergency room staff was trained to care for the elderly. “Seniors need a different kind of attention,” he said. “We can’t see and we can’t hear like we used to. We can’t even talk the same.”
Denise Nassisi, a physician who runs the geriatric ER, said her patients are at greater risk of falling, medication errors and infections than younger patients. Seemingly routine injuries can have devastating effects. Broken arms, for example, can make it difficult for elderly people to care for themselves.
Many also have dementia or other cognitive impairments that make it harder to get an accurate account of their medical history and the reason for their ER visit, she said. About half of the patients arrive unaccompanied by relatives or caregivers.
In the past, Nassisi said, doctors frequently just admitted the patients, leaving it to the hospital staff to do a more complete workup. But now, Nassisi and her team of social workers, therapists, nurses and others try to screen, diagnose and treat patients more thoroughly in the ER, she said.
Part of their job is to determine whether older patients can be safely discharged. That means they aren’t automatically admitted to the hospital, which would raise their risk of confusion and loss of independence. “We are trying to change the culture of just admitting,” Nassisi said.
A patient doesn’t need a clean bill of health to be discharged. One 81-year-old patient came in for a toothache but also had a long list of illnesses: coronary artery disease, chronic pulmonary disease, arthritis, high blood pressure, prediabetes and high cholesterol. She was released with pain medication, antibiotics and an appointment with a surgeon.
Another patient, who was 83 and had high blood pressure, anxiety and cancer, had fallen in her kitchen. She, too, was discharged after staff ensured she could walk on her own and had help at home.
As providers determine where the patients should be treated, they also try to prevent them from becoming delirious, developing additional problems or taking potentially harmful medications.
Physician assistant Jaclyn Schefkind evaluated Hill, the 105-year-old patient.
“How are you doing?”
“Bad,” Hill said, wincing in pain.
Schefkind looked at Hill’s leg, red and swollen. She said they were going to get her some stronger antibiotics and something to relieve the pain.
“Let’s start with Tylenol,” Schefkind said. “I don’t want to give you something too strong because it’s not safe when you’re older.”
Shortly afterward, the team decided the best place to admit Hill so doctors could get her infection under control. A nurse pulled Hill’s blanket up to her chin, packed up her belongings and rolled her through the door toward the main hospital.
This story was reported while participating in a fellowship supported by New America Media, the Gerontological Society of America and The Commonwealth Fund.
Caregiving for your loved ones is exhausting- both mentally and physically, as well as time-consuming. But the reward of satisfaction that comes with caregiving is incomparable and unmeasurable. As parents age, they lose control over their mobility, and face challenges with activities of daily living sometimes due to a physical or mental disability.
Stress can be harmful to a caregiver’s and senior’s physical and mental health, and can lead to physical ailments, chronic disease, cognitive decline, as well as depression and anxiety. Most elderly people prefer to remain in their homes as they age. By taking steps to ensure that your loved ones are safe and well taken care of at home, are socially connected and are involved in activities that keep them occupied, you can play a vital role in boosting your loved one’s mental health.
Here are some ways in which caretakers and family members can aid in senior care:
Work as a team, and delegate tasks to other family members if you are the caregiver of your aged parents, so that you get valuable insights into what needs to be done. Be realistic about who, how and when a member is ready to take up responsibilities, keeping emergency situations in mind, and recognize someone must in charge.
Recognizing the signs of stress
Common signs of stress in seniors include changes in eating habits-reduced appetite, changes in sleep patterns, memory issues, frequent illness, and social withdrawal. Take steps to help reduce stress to improve their mental and physical well-being.
Bridge the generation gap
Encourage seniors to participate in community activities that bring generations together, or plan a family get together so that grandchildren can spend quality time with their elders and also gain from their experience.
Get involved in activities that allow for creative expression
Encourage seniors to get creative, which is both engaging and mentally stimulating. Yoga, painting classes, physical fitness class, religious gatherings, brain games, or engaging in social work can all be beneficial for seniors.
Make home modifications to improve accessibility and safety
Challenges in movement, gait and other physical disabilities can restrict adult mobility. Make your home safe and more accessible to seniors by installing safety devices.
Plan shared meal times with friends and family
Sharing meals with family creates time for bonding, sharing stories, and provides a greater sense of belonging. Arrange for periodic family and friend’s dinners at someone’s home or at a restaurant to help keep socially connected.
Consider pet adoption for companionship
Pets, especially furry friends are often used as therapy to provide stress-reduction benefits, lifting seniors’ moods and loneliness.
Make use of technology
The use of technology has eased caregiving chores and worries. There are devices that can check your parent’s vital signs electronically, remind a person to take pills, help locate a person who has wandered from home and mobile phone apps provides patients and caregivers with a valuable feedback loop.
Caring for the caregiver
Taking care of caregiver (or yourself) is important so that you can keep up with other demands of your own life. Juggling with the demands of caregiving can take a toll on your health hence maintaining a healthy diet, getting enough sleep, and finding time for exercise can be helpful. Find ways to reduce stress by practicing meditation, pursuing hobbies that are relaxing like gardening, reading, listening to music etc. Be socially active to avoid isolation and depression.
By Henry Kingston
Henry Kingston is a passionate Health blogger, Loves writing as it’s his obsession. He has written on various topics like health care, non-medical home care for the elderly and about different other aspects of life. Follow @Henrykingston30 for more updates.
Caregiving is stressful. I’ve been a caregiver for more than 18 years and, as time passed, became more aware of stress. My husband (the caregiving recipient) thinks some of my stress is self-induced, but I don’t agree with him. From my perspective, stress is built into the caregiving role. What are some causes of caregiver stress?
By its very nature, caregiving tends to be an expanding role, especially if you’re caring for a loved one who has chronic illness. With help, you can accomplish daily tasks. Without help, you fall behind, and this generates stress. Every morning, holidays included, an agency caregiver comes to our house and gets my husband up. The process takes two hours and enables me to get through the day. Our health insurance doesn’t cover this service and costs us $25,000 a year.
My husband’s aorta dissected and he had three emergencyoperations. During the third one he suffered a spinal cord injury that paralyzed his legs. When he awakened he couldn’t move his legs at all. Today, thanks to physical and occupational therapy, he can move both legs, and walk a few steps. Still, he requires lots of care and I’m always behind on laundry, grocery shopping, and errands. Falling behind stresses me and may stress you.
Although we have good health insurance, we have prescription co-payments, and high monthly bills for supplies. I worry about money constantly. What will happen to us when our money runs out? Many family caregivers ask themselves this question. About the only thing we can do is monitor the budget, cut back on expenses, and hope things turn out for the best.
Waiting for the results of medical tests can be nerve-wracking.Weeks can pass before the results arrive, and the longer you wait, the more you worry about your loved one. In fact, you may be experiencing anticipatory grief. While I’m waiting for results I try to divert my mind to things I enjoy—cooking, reading, and decorating. This strategy works most of the time, but not all the time.
Diana B. Denholm, PhD, LMHC, calls these feelings “living grief.” In The Caregiving Wife’s Handbook she writes about the time before a loved one’s death. Denholm thinks it’s best to face grief head-on and cry when necessary. “To me, it almost seems as if people have a certain amount of tears, and the sooner they get them out, the better. Holding them in isn’t going to help.” I’ve experienced anticipatory grief many times and agree with Denholm’s assessment.
Referral and aftercare
After being hospitalized for eight months my husband wasreleased to my care. He was home a year and then referred to physical therapy. Whentherapists had done all they could, he wasreferred to a health club and asked to use a special bike there. The health club dues are high. Sometimes we have to wait to use a bike because there are only two of them. Wheelchair van parking is also a problem and this stresses both of us.
“Stress overload causes people to be stupid,” Gail Sheehy writes in Passages inCaregiving. I’ve lived this sentence and done foolish things, such as putting a comb in the refrigerator, and losing electronic car keys, which are costly to replace. I think we have to be kind to ourselves when we’re stressed. A good laugh helps too. So keep your sense of humor handy and take a short breaks from caregiving. Both will help you to feel better.
Nicola Brown is passionate about travel, food, digital media, and psychology. An award-winning writer and communication consultant, she is owner and principal of Think Forward Communication and Editor-in-chief at AnewTraveller.com
Among the lists of things that are common to humans, stress is one of them. We have all gotten stressed out at one point or the other; even babies feel stressed. I do three things to relieve stress depending on the nature of the stress, and the time and convenience I have.
Dancing is one of things I do to relieve stress when I am at home, the location is convenient. It could be as simple as swaying to a slow rhythm or dancing to a pop song. I am not a very good dancer, but it doesn’t matter, I am not doing it to become a professional. I find dancing really helps relieve my stress. Sometimes I stand in front of a mirror to watch myself dance, I give myself little tasks like how many new dance moves I can invent or the different ways I could move my body. Seeing the different bizarre dance moves I come up with makes me laugh and before I know it, I’m not so stressed anymore. Other times, I play the song in my head without listening to it and just shake my body however I want, I make funny faces while dancing and just think of how people will laugh if they should see me right then, it makes me laugh even more. Dancing is a great remedy for relieving stress, especially if you are a goofy dancer like me, it works if you’re good at it too.
Talk it out…to myself
The other thing I do to relieve stress is talk about it to myself. Now I don’t want to look crazy talking to myself in public, not that I don’t do it sometimes, but I send myself text messages instead. Or write in the little notepad app on my android phone. It’s like having a friend you tell everything to the moment it happens, but when I actually think of ranting to my friend every single time I’m stressed, I also think of losing a friendship, so I rant to myself instead. I text myself short messages, it’s like checking on myself, I receive the messages and I respond. I use the notepad when I have a lot to say, I just keep on writing and writing till I’m sure I have fully vented. This works best when I’m on the train or in any sitting position, I just take out my phone and write about the issue. I also find it helps me put things into perspectives, for example I have found solutions to problems that give me stress by writing about it. Each thought I’m trying to write or text takes a while to process and within those little moments, things become clearer, it’s either I solve the problem or I just feel better about it. One day, I was on the train for two hours and I felt like I have really written a lot on my notepad app, so I decided to transfer it to Microsoft Word on my computer, just to see how much I had written, and I found that I had written five pages worth of materials about the situation, I was amazed and that alone made me feel great!
Lastly, I daydream when I am stressed. I could be home or in public, but I am careful not to miss my stop while daydreaming on the train and I’m careful not to burn my food while daydreaming at home. There are other hazards I try to avoid while daydreaming, so generally, I daydream while laying on my bed or watching television, it’s safer that way. Usually, I would create characters my head and put them in my situation, rather than put myself in my daydreams. I would then think of happy stress-free ways in which my characters are resolving the situation or simply magically getting out of it. It makes me feel better to think of other people that might be facing the same issue, I don’t feel so alone and it’s just good to think of the fact that there might be a way for the issue to be resolved realistically or magically. Therefore daydreaming helps me in that sense. Sometimes I put myself in the daydreams and think of the farthest thing from the situation that is stressing me. This is what most people would do, it helps a lot too.
There are many unique ways in which people relieve stress, it might have become a habit or routine that we just do automatically without even thinking about it, but if we really think about it, we’d find we have our own individual ways of relieving stress. It could be universal too, it just means the method is so good, other people are using it.
From a very young age I’ve valued the sacredness of being alone.
As a self-identified introvert I learned early that I function best when I’m able to steal away time for myself to recharge and gather my thoughts. I had the usual childhood stresses you could expect of any awkward middle schooler and the added instability growing up in a divorced family: constantly jostled between two homes. Amidst all the flux around me, I found solace in a practice and place that was entirely my own. At 13, I took up the game of pocket billiards (or pool in it’s more common day usage). My interest in the game wasn’t peaked by the usual connotations of seedy back room hustlers, cigarettes, whiskey and high stakes gambling, I found in the game purity, comfort and a safe place to cultivate my curious mind.
Pool was my escape and refuge from all the stresses and insecurities I wrestled with growing up.
I found beauty in the myriad of shots that lay before me every time I chalked my cue and stepped to the table. The table bed, the lay of the balls after the break, it was a place where I knew I could resolve the disarray before me, weaving my way in and out of clusters of balls with the most basic of tools: the power of my mind to conceive of the shots and my body to execute each careful and precise stroke.
As I grew through high school, I turned to the game more and more as a respite to clear my head from everything that felt hard, overwhelming or disappointing. I was lucky to have a Boys and Girls Club located right across the street from my Dad’s house. Even on my most busy days, spending 45 minutes as a study break to get on a table, was exactly what I needed to put everything that was cluttering my thoughts on hold. Somehow in the midst of shifting my gaze and mental focus to my practice drills, I was also letting my subconscious take over, mollifying all the worry and anxiety that was ready to detail me. Pool became a sort of social anxiety medicine for myself. I stepped out of my crazed environment, and took hold of something that I had a firm grasp of that I wanted to explore deeper.
I began to claim pool as an almost spiritual like practice.
My family and peers began to recognize the unique relationship I formed with the game. It was a breeding ground for deep self-investigation and a remedy or coping tool for the most difficult times in my life. I found time for competition too as I honed my skills, finding a mentor at 16 and going on to qualify and compete in the junior national 9 ball championships two years later. The benefits though of the game have always come back around to caring for my mind.
The benefits of discovering an outlet to manage overwhelming times in my life have been tremendous.
I’ve dealt with the sadness and disappointments of breakups and deaths, anxiety attacks and depression. Having learned now what it takes to be a caregiver, I’ve begun muse and reflect on the pool practice that I discovered so long ago because it’s proven to be a rock that I can continue to return to again and again.
As a caregiver, have you been stressed lately? In this video, PhysEd focuses on defining stress and techniques on how to deal with it. PhysEd emphasizes that exercising is the key to cope with anxiety, stress, and depression. PhysEd suggests that performing aerobic exercise for about thirty minutes a day can make a big difference. PhysEd also review questions that caregivers may be concerned about, such as, who will take care of a loved one if something happens to a caregiver? Lastly, it is always best to maintain a positive mindset as a caregiver.
At the beginning of your caregiving journey things were pretty simple. You provided a comfortable bed for your loved one, did the laundry, made medical and dental appointments, fixed nutritious meals, provided taxi service, and daily companionship. By itself, each task is simple, but life can change simple things to complex ones.
Your loved one may get a cold and be bedridden for days. She or he may develop a second chronic disease. A sudden toothache can change caregiving plans in a flash. Already short on sleep, you may become cranky, sleep deprived, and discouraged, so discouraged you want to send out an SOS distress call, the international signal for distress. While other caregivers are willing to help you, there are steps you can take to lower your stress.
This recommendation comes from sleep experts and, though you may not be able to follow it every night, it is a worthy goal. Going to bed at the same time helps to program your body clock and expect sleep at that time. A good night’s sleep helps to prepare you for the next day.
Tempted as you may be to eat on the run, this isn’t good for digestion or overall health. Sugary snacks give you a temporary burst of energy, but this burst fizzles quickly. A wiser step is to keep healthy snacks – carrot stocks, apple wedges, and grapes – on hand when you need to munch on something. Almonds and walnuts may also quell your hunger.
Discuss thorny issues.
Diana B. Denholm, PhD, LMHC, offers this advice in her book, The Caregiving Wife’s Handbook. “Even in households with the best communication, some issues are daunting to raise,” she writes. Not discussing issues leads to stress build-up, according to Denholm. Her advice: answer questions yourself, prepare for conversations, use communication tools, set a discussion date, prepare yourself emotionally, and “create understandings.”
Several years ago, when my husband’s aorta dissected for the first time, I was so stressed I could hardly make conversation. He was hospitalized for days and I visited him every day. After the visit, I went to the athletic club and walked on a treadmill. A staff member recognized me and asked about my husband. I summarized the situation and she replied, “I love it when people use exercise to cope with stress.”
Schedule daily “Me Time.”
Writing is my special time. What is yours? Doing something for yourself each day renews your spirit and your energy. Your “Me Time” can be working on a hobby, reading, or going to a museum. While you’re caring for a loved one you need to care for you.
You may do this with meditation, prayer, reading spiritual and religious books, attending church services, and volunteering in your community. In her book, Passages in Caregiving, author Gail Sheehy asks caregivers to explore and affirm spirituality. “Believers of all faiths can find solace in their own creeds and rituals,” she writes. “But even nonbelievers, faced with existential issues, may find that talking with a trained spiritual counselor . . . awakens feelings of compassion and communion with all humans facing the same issues.”
You may also care for your spirit and yourself by logging into The Caregiver Space website regularly, reading the blogs, and posting blogs of your own. You are not alone. Thousands of caregivers are ready and willing to answer your distress call. Don’t feel guilty about asking for help. You are not a failure, you are a realist – a dedicated, loving caregiver adapting to life. We are in the caregiving trenches together, and can support and learn from one another.
I walked in the door at 7:30 tonight after being out since 8:15 this morning. My day consisted of working with kindergarteners for 7 hours, picking my daughter up from track practice, driving 40 minutes to her voice lesson and 40 minutes home, and a stop for Chinese food. I blew off a meeting because I had to get home at a decent hour to help my husband, and I was tired. Like almost every night, I was greeted by dishes in the sink, dirty floors, dusty pet hair covered surfaces, laundry piled on the couch, laundry in the bathroom, laundry in the laundry room. Did I mention there was laundry? The bathroom is a mess, even though I clean it at least once, if not twice, a week. There is also the usual clutter of a lived-in household.
I blew off cooking dinner tonight because if I had to make a meal, we would have been eating at 9 p.m. Did I mention I was tired? So, take-out it was. Again. I was out of the house and on the go for almost 12 hours today and had no desire to cook. As I sat and ate my Chinese food, I looked around and started criticizing myself for my obvious incompetence in running a household. What kind of wife and mother lets her home look like this? How dare I have this amount of laundry all over? How dare I allow my floors to look like crap all the time? It’s incredibly embarrassing every single time someone walks into our home. I wonder what they must think of me. I don’t like it when people come over. They probably think I’m lazy. There is no excuse to not keep up with it all. Even though I try to clean it every week, it never looks the way I like it, let alone the way guests would expect to see it. It looks good for a day at most, and then it’s a mess again. I don’t have time to make it look incredible, or even presentable most of the time.
I look forward to weekends, but then I spend them grocery shopping, cleaning what I can, driving kids around, and hopefully catching up on some of the sleep I inevitably missed during the week. It’s a rare weekend that I get to do something just for the fun of it. Sitting and reading a book can be a challenge. I figure I don’t deserve it anyway, because I can’t even get my simple chores done.
I’ve also been trying to find a part time job to supplement my income during the school year, and be able to work in the summer when I don’t get paid from my regular job. I can make it work. I can work a couple of evenings, and maybe one weekend day, while holding my full time job. I mean, it’ll take some of the stress off, right? I can do this. No excuses.
Meanwhile, my husband sat in his recliner. No, he isn’t lazy. Far from it. He was hooked up to the dialysis machine that keeps him alive. He does this 5 nights a week for several hours. He can’t be alone when he is hooked up to the machine. I have to be here with him, or another adult has to be with him, in case something happens or he needs something. I figure that should give me the time to clean, do laundry, and cook, since I’m home anyway, right? No excuses. There is no excuse. There is no reason that I shouldn’t be getting everything done every night.
These are the things I say to myself all the time. Then tonight, as I sat here, I heard that sound a record makes when the needle scratches it. You know the sound, if you are old enough. Now, I didn’t really hear that sound…it was in my head. But I noticed the negative chatter in my head and stopped myself. What is wrong with me? I never stop, and yet it still isn’t good enough for me. The house isn’t clean enough, I don’t cook enough, I don’t keep up with the laundry, I’m not giving enough time/money/attention/experiences to my kids, I’m not giving enough time/attention to my husband, I’m not making enough money, so I can’t provide enough. I also tear myself apart because of what other people might think. They’ll think I’m lazy, or dirty, or simply not good enough. I make it seem like I can handle it all just fine, but I really can’t. Why is that not okay?
Honestly, I don’t know how to fix it all. I’m trying to accept that this is my life for now. My house will be messy, the laundry won’t be completely done, we will eat take out more than we should, and if other people come over, they will have to tolerate the mess. People will always judge what they haven’t lived. I’m judging it, and I live it. I’m just trying to get myself to the point where I can say “enough is enough,” and be okay with just doing the best I can for now.
The first thing my mom said to me when she was diagnosed with Huntington’s Disease was that she never wanted her children to have the burden of caregiving. She couldn’t have stressed it more. Even though the disease had already taken pieces of her, she was still our mom at her core. She still put our needs and hopes above her own. She wanted to protect us from the scary reality of Huntington’s Disease.
Huntington’s Disease, also called HD, is a progressive, hereditary brain disorder. There is no cure or proven treatments. The disease often starts as subtle mood swings and progresses to the complete loss of an individual’s ability to walk, think, reason and talk. The other kicker is, as it’s hereditary, the chance of passing on the disease is 50%. My mom remembered the brutal emotional impact of being a caregiver to her own mother (my grandmother) who suffered from HD. It’s hard enough being a caregiver; it’s even harder knowing that every decline in your loved one could easily be a glimpse into your future.
My mom was just 56 when we began looking for memory care facilities. With family spread out around the country, the burden of caregiver was primarily on me. I was just 27, newly married with newborn twin babies. I was also my mom’s Power-of-Attorney; her person; her voice. We had spent the last year or so flailing. She had gone from an apartment to senior housing to traditional assisted living facility within months. Each of the places she lived promised us that they could handle the ups and downs of Huntington’s Disease. Very quickly we realized that she needed more help than we had anticipated.
Memory care facilities seemed scary. The first time I toured my mom’s community, I cried. Hard. It’s hard to accept the idea that your parent will only continue to decline and that a memory care facility may be the appropriate place for them. At a certain point, the real world isn’t appropriate for someone with dementia. It didn’t feel fair for me to try to fit a square peg in a round hole.
To be completely honest, the option of caring for my mom in my own home was never even a consideration. With newborns at home, I was exhausted and barely had a moment to feed myself or go to the bathroom. I was in no place to add another person to the mix. And to top that off, my mom’s initial request for me to continue to live my life still lingered in the back of my head. I knew that’s what she would want.
We have been so happy with our choice to move my mom into a memory care facility. My mom is busy and happy. They go on weekly outings to places that I would never be able to take her to with two babies in tow. They do yoga, take writing classes and do crafts. She’s exposed to so much more than I would be able to give. Every time I visit her, it gets less scary.
Going into a memory care facility with toddlers is a distraction from the darkness of dementia. For both myself and my mom. To my two year olds, they know no different than visiting their Bubbie at her “big house”. My kids get attention as soon as we walk in. They wave and smile to all the residents and staff. They play with the community dogs and run down the hallways. They don’t see that my mom is different from other grandparents. They love her for who she is in this moment.
And, my mom truly benefits from her relationship with my kids. They bring a light into her world. She isn’t the grandmother I always pictured her to be, but she’s able to play the role nonetheless. I am grateful my kids have her in their lives. I am also grateful that they don’t have to witness me bathe my mom or give her her meds.
With all that said, that doesn’t mean I didn’t feel guilty when I drop her off or when my babies are sick so I can’t visit her. There are bad weeks when my mom wants to leave and doesn’t understand why she lives where she lives. But those pass. Like anything, accepting our new reality takes time.
I’m grateful that we were able to find my mom a home that fits her needs. I’m grateful that my relationship with my mom isn’t strained by the day-to-day responsibilities of caregiving. I’m grateful that my kids get to have a sweet relationship with my mom in doses. I’m grateful that I know my mom is safe and secure. Being a caregiver is not easy no matter what your circumstance, but a memory care facility is what keeps my mom happy and healthy and what keeps our family unit moving forward.
I believe that one of life’s greatest tragedies, now, and perhaps from the beginning of time is, loneliness.
I doubt that there are many people that can say they haven’t been lonely at some point in their life. Sometimes we’re simply victims of circumstance, isolation, or suffered a tragic loss. There are many reasons for loneliness, and it really doesn’t matter why you are lonely, unless you don’t somehow resolve the issue causing the loneliness.
Then it becomes a problem.
Staying isolated or lonely should not be considered an option, but is a huge problem worldwide. And it can lead to various illnesses, untold misery, and even suicide. You must seek help. And that doesn’t have to be in the form of a therapist. Seek out family, friends, someone that will listen to you. If I were walking through the market and a person walked up to me and said, I’m lonely, my immediate reply would be, “how can I help you.” And mean it. His/her words would start a dialogue.
Being a people watcher, I see things that, often times, most people don’t. It’s not uncommon for me to see a distressed looking person, walk over to him/her and ask, “Are you okay?” And in every case so far, the person has said that their okay. And you know they’re not. But for those that are hurting, you at least acknowledged their pain. And that does help them knowing, someone cares.
I’ve written a few compelling articles on loneliness over the past 2 years. And looking through them, I’ve realize I’m really good at identifying problems, but I didn’t offer much help. So I’ve been researching and believe I’ve found some really good help for many of you suffering from isolation or loneliness. They are both 24 hour service’s and you will get a real person. So if you are lonely, feel isolated, emotionally distressed, depressed, or need someone to talk too, make the call. Both these services are provided free of charge.
The neat thing about calling them and having a chat was, their willingness and wanting to help. I told both locations they may get a lot of calls and that seemed to excite them. They truly want to help you. And I do, too.
IOA has a friendship warm line you can call when you feel emotionally drained, lonely, anxious, depressed, or just need someone to talk to: 1-800-971-0016 They have no caller ID, so your call is anonymous. I called them at 3 AM, and the lady said she was the answering service and that if I was in crisis mode, or suicidal, she’d connect me to an experienced member. She said they handle thousands of calls a year.
HopeLine has no age group, and provides a wealth of support. They have a website, too. They are a true 24-hour service, and will talk to you if you’re lonely, emotionally distressed, anxious, depressed, or perhaps just need someone to chat with. The phone number is also a crisis or suicide hotline. I called them today, and based on my area code, they hooked me up with a lady in my town, Wichita, Kansas. They have a large building here, open 24/7 with on-duty counselor’s. These folks appear to be the real deal, and have offices throughout the country, fully staffed. If there were to be an office in your area, you’d be onto a good thing. You can tell, I was impressed. The phone numbers are: 1-919-231-4525 and 1-877-235-4525. They also have connections through those two phone numbers for PTSD Veterans.
So, if you’re feeling isolated, lonely, anxious, depressed, wake up from a nightmare in a crisis or feel suicidal, make the call.
Either one of these sites will help you. Through studies and research we know, depression, isolation, or loneliness, can be precursors to suicide. The chat lines are geared to try to not let your emotions get that far. Make the call!
After I lost my wife Annie to cancer, I was so lonely. In the middle of the night I had no one to talk too, and no guidance as to where I could even call. Well, you’ve got guidance now. Use it, If the need arises.
These emotions I’ve talked about can morph into a huge problem if you’re not careful. Don’t let them. It doesn’t have to be that way. One person can touch a life and change it forever. Maybe that one person will be on the end of the line, you call. Surely you deserve that. I certainly think you do.
It’s a question I’m asked all the time by family caregivers: Can I get paid to be a family caregiver? It’s usually accompanied by qualifiers: I’m not trying to be greedy, but I had to quit my job to take care of my mom. My husband isn’t comfortable having a stranger...
If your parent is undergoing surgery or is experiencing a prolonged illness, you may find yourself in the role of temporary caregiver. Understanding what to expect during the caregiving period will help you prepare for this role.
Adult children are often pulled among responsibilities to their parents, their own spouses and children, and their jobs. While temporary caregiving can be an opportunity to show your love and concern, it can also be stressful and absorb a lot of your energy. You can minimize the stress with careful planning.
First, set aside some time to make a plan. Does your home need to be rearranged or altered to give care? Does your parent need psychological or physical preparation for their procedure? Do you need preparation?
Organize Your Home
Think first about the type of procedure being done and what the recovery period physically requires. Consult with your parent’s physician if necessary.
A number of surgeries, such as hip and knee replacements, require patients to use walkers as they heal. Does your home allow for walker access? Does your parent need to be accommodated on a specific level of the house to avoid stairs?
Many procedures require special equipment, such as a bathroom bar, a recliner or a lifting apparatus. Be sure to check on all these requirements, giving yourself plenty of time to order and receive special equipment, and, if necessary, to rearrange your home.
Second, make your home safe for your recovering and possibly weaker-than-usual parent. Stabilize or remove any area rugs that might cause them to slip and fall. Make plans for a resting and sleeping area close to a bathroom. Make sure that light is adequate for an older individual to see and easy for them to adjust.
Prepare the Patient
Prepare to help your parent manage anxiety. It is normal to feel some anxiety about any procedure, especially surgery. Acknowledge this as part of your preparation. It can be very helpful to research the procedure together.
If your parent is having knee surgery, for example, it can greatly reduce anxiety to know that over 600,000 people in the United States have knee surgery each year, and fewer than 2 percent have serious complications. To complement the numbers, understanding what happens before and during knee surgery — like if radiofrequency ablation (RFA) will help or what type of metal components will be used — could ease the concerns you and your loved one have about the overall process.
You should also prepare by establishing a good relationship with your local pharmacy. Decide where you will go for needed medications before the surgery, so there will be no delay in filling prescriptions after the procedure. Make sure you have a list of your parent’s existing medications so you can discuss possible drug interactions with the doctor and pharmacist.
Will your parent be able to drive after the procedure? If not, you or someone else will have to drive them to their follow-up appointments.
Also, discuss insurance and finances with your parent. You need to know if they have any concerns about medical bills and charges, as this can impact both stress and recovery.
This is also a good time to bring up living wills and powers of attorney. While the majority of operations are successful, every adult should have their wishes on file in a will.
Understand What to Expect
Many patients spring back from surgery as soon as they start to physically heal, but it’s wise to expect some issues to pop up.
Medical interventions can be complicated. Your mom or dad may just not feel well. The procedure may have made them very aware of their aging body. Stitches might be irritating. They may have difficulty sleeping. Being in unfamiliar surroundings may be stressful. If the procedure requires dietary restrictions, they may feel frustrated — especially if they aren’t allowed to have their favorite foods.
Prepare the best meals you can within the indicated dietary requirements and eat the meal with your parent.
If they are having trouble sleeping, could a television, radio or computer provide entertainment late at night? Could the two of you play cards or another favorite game? If the unfamiliar environment is an irritant, could their space be enlivened with favorite pillows or decorations?
One good method to reduce stress for both you and your parent is to set up an online social network. Many older people adapt very well to social media once they see its benefits. Many social media sites like Facebook have groups for people who have particular conditions, such as joint replacements or diabetes. It can be helpful to read those stories.
There are social media sites for temporary caregivers as well. Set yourself up on one of these sites to obtain advice and support.
Temporarily providing care for your mom, dad or another relative can be a time to bond and show your love. But it can also be a challenging time. Prepare your home, your parent and yourself for the caregiving period and know what to expect, both physically and psychologically.
The first session at the Aging in America conference that I attended last week was titled, “Is family caregiving the next public health crisis?”
I’m sure all of you can guess what the answer was: a resounding yes.
After attending this year’s conference in Chicago, I came away with two major impressions: there are many aging and caregiving battles ahead of us, but we also have an army of smart, determined, and compassionate advocates who are dedicating their lives to the cause.
It was empowering to witness family caregivers being recognized, supported, and championed, instead of being marginalized, trivialized, and ignored. It was inspiring to meet so many professionals who are working tirelessly to address the concerns of caregivers. I presented my Respite Care Share concept as part of the poster sessions.
Progress is being made, but there are still many issues left to address. The recurring topics I heard addressed throughout the conference:
Managing the financial toll of caregiving
Ensuring family caregivers are recognized by the medical community as essential members of their loved one’s care plan
Making sure family has adequate support system
There are no easy answers on the financial front, with America’s health care legislation a political football that has been punted for the time being. There are various bills tackling the cost of caregiving that have been introduced in Congress, but it’s at the state and county levels where the most innovative programs are being launched. Family caregivers should contact their local aging agencies to see what aid and other resources are available. I talked to several people who work for community health agencies that stressed how in some cases, aid is available, but people are unaware that such programs exist.
The CARE Act, which has been passed in dozens of states, requires hospitals to record the name of the designated family caregiver on medical records, inform that person when a patient is discharged, and provide training to the family caregiver for medical tasks that will need to be performed at home upon patient discharge.
Support for caregivers in all forms was discussed extensively at the conference. Expanding respite care opportunities and making sure that caregivers have the supplies, training and access to health care for themselves were all topics of discussion. A focus on diversity was also a major theme of the conference. The needs of an African-American middle-aged caregiver may be different than a millennial caregiver from the LGBT community, and programs should be flexible in addressing a diverse population.
More effective communication was a recurring theme in all of the sessions I attended. Caregiving professionals expressed the need to reach family caregivers before they burn out. Establishing that communication early on, starting in the doctor’s office, is key. Many medical professionals said that they don’t have the resource information they need to distribute to the family caregivers who walk through their doors.
Family caregivers will need to continue to speak up and speak out while advocates continue to champion our cause. If you are a designated caregiver, insist that medical professionals keep you involved in your loved one’s care plan. Don’t be afraid to ask for training or assistance when it comes to performing medical tasks at home. And though it may sound downright impossible, don’t ignore your own health and well-being. Even an hour away at the coffee shop enjoying a good book while a neighbor or friend watches your loved one can make a difference. Join a support group or caregiving coalition. There are online outlets as well as in-person groups.
I can’t think of a stronger group of people to deal with a crisis than current and former caregivers and their advocates. Let’s keep fighting.
I think about my mother a lot. A flood of memories comes over me as Mother’s Day grows closer. My mom was a beautiful, strong willed, loving parent. Our house was the place all our friends hung out. My mom would hold court at the kitchen table and they would seek her counsel on dating and share their secrets with her. She died 32 years ago.
An initial diagnosis of breast cancer happened while I was still in college. She wasn’t going to tell me about her upcoming surgery because I was away at school. I sensed something in her voice on my weekly phone call and forced my parents to tell me what was going on. I rushed home to be there for what turned out to be a radical mastectomy. I acted as an advocate for my folks and came home regularly. My mom did great for 5 years. Unfortunately the cancer metastasized to her bone and eventually moved to her brain.
Mom wanted my father to be her primary caregiver and made it clear she would remain at home. During the remaining 2 years of her life the cancer ravaged her body and her mind. She would not allow us to get any outside professional help. She was weak and needed help with moving around, bathing, and dressing. She would let her kids help her minimally with some reluctance.
For both my father and me the most difficult challenge was the massive personality change that occurred when the cancer entered her brain. She became an angry, verbally abusive, aggressive woman. My dad had a difficult time dealing with it. So did I. She threw me out of my childhood home at one point with our provocation which felt so hurtful. I wondered how my dad could tolerate the ongoing abuse?
Incredibly for us on her final day on this Earth my old mother returned. I had told her my brother and sister were on their way from California and New York to be with her. The doctors had told me she could die at any moment. My sister, father, and I held a vigil at her bed and then it happened. She came back to us. There were smiles and words of love exchanged. To the amazement of the doctors she waited until all my siblings arrived that night and said her loving good byes to them. Then she peacefully slipped away.
I am much older and fortunately wiser now. I have the benefit of 40 years as a medical social worker and life experience. I have thought about what I would say to my father and my younger self with the benefit of that knowledge:
I would remind us that the mean person she became was not her. It was caused by the cancer, a disease whose symptoms she was helpless to fight or control. It is important to separate the medical condition from the person. I know that is hard at difficult moments. I remind myself of that when I recall that awful day she threw me out. I have come to understand and believe this is true. I choose to remember the loving mother I had.
My mom was young when she got sick. She was only 50 years old. She and my dad never had a discussion about what she would want to happen if she became ill. No advanced directives were in place outlining her wishes about medical care, life support, or anything. It would have been so helpful to know her wishes and a source of comfort to us knowing we were carrying them out.
Finally I watched the physical and emotional toll that being the primary caregiver took on my father. He was almost 70 years old when he was fulfilling most of the caregiver needs for my mom. He told me multiple times that he wanted to stop or at least take a break but he didn’t. He was burned out, angry, and stressed out. Dad did not let us help too much because he wanted to honor my mom’s wishes. The problem was she was not thinking clearly due to her illness and the demands she was making were virtually impossible to fulfill. I would have advised him to take more respite time and get additional professional help on top of what we were able to offer my parents.
It is always easy to look back with the passage of time and think about how we might have managed the care of both my parents differently. The lessons learned from this experience helped my father and I as he aged and needed a caregiver. The directives were there as was many conversations between us that created a level of trust and understanding. We altered the level and intensity of care he needed as his medical condition altered with him and it was a collaborative effort among my siblings and my father. We helped him to die with dignity at age 96 feeling his wishes had been honored. That gave us all a measure of comfort that will stay with me forever.
Over a fourteen year period, I had five different family members who needed help quickly and unexpectedly. Did I live near any of them? NO! Was it worth it? Yes it was! Would I do it again? Yes, but admittedly with some trepidation. Was any of it planned? Absolutely not!
Would I be better prepared? Yes! Did I learn more than I ever could have imagined? Yes…and then some.
All five experiences began with a phone call. Each call was from or for someone in crisis. Each call meant I needed to respond quickly. And, all calls meant flying or driving long distances to meet the needs of the crisis at hand. With this came still more phone calls, juggling schedules, buttoning up things in my life, packing quickly, finding flights and organizing my world as best as possible before leaving.
With long distance care came a sense of panic. I got better at it over time, but honestly, I never did get used to it.
I’m no expert in long distance caregiving, but have survived five experiences with family members, where one phone call put me on high-alert and launched me into action. How I helped varied with each person—their life situations, ages, state of health and how close we were. Each time, I learned new skill sets and better ways to cope.
My background as a clinical and school social worker gave me a leg up on knowledge about the system, finding resources and helping people in need, yet I wasn’t fully prepared for the emotional aspects of the “job” of caring for a family member from afar.
If I knew then what I know now, I might have had many of the same feelings and challenges, but not been as frightened or felt so alone. Sure, I had people around me who cared and offered me support, but the difference was the newness and suddenness and way things seemed to pile up on me. I was left feeling alone, and like I was drowning in a sea of stress. Everyone’s story is different, yet a common thread exists in all of our experiences.
Living far away from our loved ones doesn’t mean we aren’t connected. Certainly, some people aren’t connected; some people wish they were and some don’t.
When the need arises to help a family member in need we have a choice, drop everything and try and do it ourselves and/or share the responsibility with others, be it friends, family, or paid assistance. This is not meant to judge, but to clarify and identify some of our choices.
It all sounds so simple on paper— like a logical set of options. Unfortunately, the emotional aspect of the many layers of caregiving make a difference in how we cope with the hand we’re dealt. How we can be the most effective advocate for our family, in part, depends on the personality we bring to the role and our relationship with the person in need. And then there’s the practical knowledge we possess regarding everything from where they do their banking, to whether or not they have a POLST or Living Will.
I was quick to learn that as someone who was trying to help a family member from afar, establishing myself as a strong and effective advocate was essential—and sometimes even life saving for those I cared for.
The dynamics of taking care of a sibling differs greatly from taking care of a parent, aunt or uncle. Family baggage can color this care, and it takes understanding, strength and the ability to ask for help when we need it ourselves.
My own feelings of guilt from being away when I was needed or wanted to be at home was one of my biggest challenges. On the flip side, it was excruciatingly difficult to leave family members in a hospital, nursing home or hospice when I had to leave.
This was probably the most difficult part of my long distance caregiving experiences. I tried my best to make what felt like a lose/lose situation into a win/win. But I couldn’t. I forever felt I had one foot in and one foot out when it came to being at home or being with my loved one. Social gatherings suddenly felt awkward and foreign to me. I couldn’t fit in, harboring feelings of guilt for having fun. I felt this most while caring for my brother.
Like so many of us, I tried to be the hero at first. I took my role as caregiver very seriously and wanted to master the twists and turns. I learned the hard way this wasn’t realistic. I felt I was “bothering” people when I needed support or simply raged about my frustrations. I found I couldn’t do it alone though I started off wanting to.
While caring for my brother, who’d been diagnosed with cancer, I sought professional assistance from a Life Coach when I accepted I could not do this alone. We’d speak by phone, eliminating the need to be physically present for our sessions. At the time, I still felt I had no time for this, though now I honestly wish I’d found this coach during my first caregiving experience. It was a Godsend!
What helped most was accepting and understanding that my feelings were normal. I learned taking breaks was necessary, warranted and okay. Even when I couldn’t be there, I checked in daily with family members and/or the staff caring for them. My calls let those caring for my family know that I was concerned and vested in their well-being. And, I found most facilities welcomed family support, though I can’t say that all of them did.
I was fortunate to be someone not afraid to ask questions. I was very invested in making sure that my family received the best possible care and attention, even when I was not physically there to advocate for them. Daily involvement, even by phone, is time consuming, but well worth the effort.
My Short List of Lessons Learned
When we get the call we have a choice to help or not help. If we do choose to help, then we must arm ourselves with support, information, resources, backup, and ways to take care of our own needs. Knowledge is power!
Find someone to talk to, be it professionally or via friends and family. Be prepared that some friends do not want to know the drama and the details. Try not to take it personally.
I learned that I could not control everything. Yes, we all know this intellectually, but in my caregiving role, I felt like a failure when I could not help ease someone’s pain, or change the course of events, or make a nurse or doctor behave more empathetically or with compassion.
Find who to talk to in the system of care, be it a hospital, nursing home, assisted living facility, hospice center or wherever your family member lives or is receiving care. Try to find an ally within the system; sometimes it may be a receptionist in a nursing home.
I learned that how we speak to those who care for our loved ones, be it a nurse, aide, social worker, physical therapist PA, etc., our tone, that is, how we ask for help and who we ask make all the difference in getting the help needed.
I learned it’s of the utmost importance to educate oneself about our loved one’s illness, their treatment recommendations, the care protocol and what systems are in place to provide that care.
Of the countless lessons learned over my fourteen years of long distance caregiving, one key lesson was how important it is to “plan for the worst and hope for the best,” be it regarding finances, medical care or end of life planning.
I know that I am not alone. Like everyone, I can only speak to my own experiences. They were personal, unique and filled with hurdles—but also blessings. I am sure that if you are fortunate enough to be able to drop everything and help those you love, though it may mean some personal sacrifice, as you look back, you will feel and know it was the right thing to do. Caregiving is a very fulfilling experience; albeit a very difficult and life changing one.
Our family at my brother’s high school graduation in 1998, 1 year and half before his life changed forever
This Saturday my older brother will graduate magna cum laude from Volunteer State Community College with his Associate’s degree in Computer Information Technology. While every degree is special, this one is particularly significant. Earning this degree was a hard-fought battle, requiring perseverance, inner strength, and tenacity.
18 years ago, my brother made a decision that put his entire life on hold. When our mother was diagnosed with degenerative disc disease, she underwent a spinal surgery intended to alleviate her pain. Instead, the surgery was performed incorrectly, leaving her permanently disabled and unable to work. Two weeks prior, my brother turned 19 years old, and he was entering his sophomore year at college. He had immersed himself in a full university experience: he was an honors student in mechanical engineering, he was active in rock climbing and racquetball, and he had many friends. All of that changed when our mother’s surgery went wrong. He dropped out of college to come home to provide care for our mother and me, his little sister 7 years younger. He became responsible for her physical care, cooking, cleaning, and he also got a job to pay all of our household bills. In addition, he began taking me to school. I also took part in providing care for our mother, yet my brother bore the remarkable brunt of our mother’s care needs without any outside support or assistance.
Caregiving caused an 18 year gap in time before my brother would march in cap & gown again
While my life as a caregiving youth certainly wasn’t easy, I will always recognize the role my brother played in shielding me from the more devastating effects of caregiving at an early age. Because of him, my life took a very different path. When I look at his experience as a young adult caregiver, I know what my life could have been. Yes, the stress of having a mother in chronic pain sometimes negatively impacted my time in school. But, I will never know what it’s like to have your educational dreams snatched away because of caregiving. Yes, I know what it’s like to be bullied and to not feel comfortable telling other people about your life as a caregiver. But, I will never know what it’s like to be completely socially isolated and experience the loss of every single friend you’ve ever known because your life suddenly became vastly different than your peers. Sure, I know what it’s like to push yourself through school with the goal of becoming financially successful, always mindful that one day your mother’s care will fall on your shoulders. But, I will never know what it’s like to be forced to unexpectedly work a full-time job to carry the weight of a mortgage and an entire family’s household bills at the bright young age of 19. Because of my brother, there are certain sacrifices that I have never experienced.
When I tell people our family story and they ask about our mother, I say that she no longer required intense physical care around 8 years ago, mainly because she stopped having surgeries and her care progressed to the management of her chronic pain.
“Oh!”, people often respond, somewhat dismissively, “So everything is fine.” Others even say, “Your brother isn’t a caregiver anymore.”
“Well,”, I say, always getting a bit flustered, never knowing how quite to explain our family’s situation. For people who have never experienced family caregiving, they don’t quite understand. They don’t know that in some ways, caregiving never really ends, even if direct physical care is needed irregularly. The severe financial impact never ends. The worry over our mother’s health never ends. The constant gaze towards the uptake of future caregiving responsibilities as our mother ages never ends. And for my brother, on the eve of his graduation from college, the impact of caregiving on his career never ends.
Caregiving is the reason why at age 36, despite being “on the right track” at age 19, he has finally earned his first postsecondary degree. Caregiving is the reason why at age 36, he is not yet finished in school; another 2 years of hard work is needed for him to earn a Bachelor’s degree. Caregiving is also the reason why even after those years of going back to school, he still isn’t sure how to answer the big question of “what do you want to be when you grow up?” because he lost those carefree years of exploration during young adulthood.
I always consider my experience in terms of what I didn’t have to give up because of caregiving, or conversely, what I still was able to experience despite caregiving. That’s all because of my brother. He is the reason why my life was not utterly broken as a caregiving youth, why I was able to pursue my dreams, and why I have hope for my future. He is the reason why my career has been devoted to helping other child and young adult caregivers finally gain much-needed recognition and support in the United States. I firmly believe that because of his conscious actions of selflessness and compassion, millions of other caregiving youths will one day also feel hopeful that having an ill or disabled family member no longer means that they must give up their educational and career goals. People often call my brother a “hero” for our family. Indeed he is. But, as someone who has intimately watched my brother care for us day in and day out for years, I know that he is more than our family’s hero. He has cultivated a legacy that will impact the lives of millions of other young caregivers, and his graduation, is only the beginning of his accomplishments.
Ferrell Lewis, today at his college graduation. He graduated magna cum laude in Computer Information Technology.
We all recognize that caregiving is a complex task. It can bring a new closeness with the person you are caring for. It can inevitably bring a flood of emotions including compassion, nostalgia, gratitude, devotion, frustration, grief, sadness, love, guilt, and anger.
Anger is an emotion that is particularly challenging for caregivers. It is normal that at some point in the caregiver relationship it will appear. Often times when your role is not acknowledged or the person you are caring for is agitated or aggressive the stress of this role feels overwhelming. You are also simultaneously coping with the grief of losing the person you knew which is an additional component. The reality is unexpected behaviors or medical problems can happen. In your role as a caregiver you cannot always stop or control these situations making you feel helpless and isolated.
The first thing to recognize is anger is a normal reaction. Caregiver fatigue evolves from daily physical and emotional exhaustion. You may become emotionally raw. Do not chastise yourself of feel guilty when you have moments of high frustration or anger. You are human and nobody can always balance all aspects of their life, family other relationships, work, other life commitments in a seamless way. There are things you can do and need to know as you find yourself experiencing these feelings:
Recognize that you are making a difference even when it doesn’t feel that way
Think about what care options would be available if you were not there and how significant your role is.
Be kind to Yourself
Forgive yourself for moments when you become frustrated and angry. Focus more on the countless times when you were patient and compassionate. Allow yourself to have moments of imperfection.
Allow Yourself Respite
Be aware of your own body and feelings. Don’t wait till you crash physically or emotionally from your caregiver responsibilities. Be proactive on your own behalf and get additional support from a relative, friend, of healthcare professional, or respite care program. Give yourself time to recharge. It will benefit you and the person you are taking care of.
Take a Moment to Consider Why You are Angry
When someone is yelling at you or being physically aggressive it is hard not to get angry. Carefully consider why the person you are caring for is doing things to make you angry. Maybe their behavior has nothing to do with you. Perhaps their medical condition creates poor impulse control or memory and they can’t help but ask you the same thing over and over again. Maybe they don’t recognize you and are afraid you are a stranger and they are reacting out of fear or confusion. Maybe they are having a reaction to a medication. Sometimes understanding the reasons for their behavior can soften your reaction. Your feelings about caregiving will change moment to moment.
Incorporate Some Fun Into Your Role as a Caregiver
Think about something you would like to do that could bring some relief from conflicts. For example turn on some music and dance. Music can have a soothing affect on all concerned. Pick a favorite movie and watch it together. Take out old photos and reminisce. That can be meaningful for both of you.
If trying to get dressed becomes a battle just stop. Focus on something else and come back to it later. Give the person you are caring for limited choices when appropriate. For example, would you like to wear your blue or red shirt. Have them both out so the person you are caring for can choose. This way you both feel like you have some control which helps reduce frustration and anger.
Identify Healthy Ways to Release Your Anger
Maybe you will feel better after you kick a ball or punch a pillow. Maybe going in another room and saying what you would like to say letting it out will help. This release will help calm you down so you can move forward with it taking less of a toll. Physical exercise releases tension and can lift mood. Can you take a walk, do jumping jacks, yoga, or meditation? Think about what feels right for you. Writing can be a great release. Write your feelings down or what you would like to say. Transfer your feelings into a poem. You don’t have to share it with anyone. It is another form of healthy release.
Don’t spend time Getting Upset about Things You Cannot Control
This takes extra time and energy you don’t have. Remember you cannot necessarily control the actionsof the person you are caring for. You may have a big fight yesterday. The person you care for has no memory of it today. Try to leave your anger behind. Focus on what you can control which is your reaction and attitude. Start fresh today.
Recognize You Cannot Change Past Relationships
You may be caring for a person whom you had a past conflict ridden relationship. This impacts your role as a caregiver. You need to closely examine its impact on you. Maybe you are not the best person to assume this role.
The biggest mistake caregivers make is not taking time taking care of themselves. You need to identify a person you can candidly talk to about the challenges of your caregiving experience. Another great source of support are caregiver groups or on line caregiver chat sites where you know others understand and have empathy for what you are experiencing. Finally, a healthcare professional with expertise in this area can offer counseling to help.
This has been a stressful month. My disabled husband developed a horrendous rash, which he described as being attacked by ants. I had three infections and injured my back while lifting him. A manuscript I’d been working on disappeared from my computer, and back-up systems failed. I asked an office store to scan the manuscript to a file I could edit, but the file was such a mess, I gave up. The only thing I could do was retype the manuscript.
No wonder I developed a case of the blues. This wasn’t like me, and I was used to caregiving. In fact, I’ve been in the caregiving trenches for 20 years, nine years as my mother’s family caregiver, seven years as my twin grandchildren’s guardian and caregiver, and close to four years as my disabled husband’s caregiver, with more years to come.
I don’t know what is hardest about caregiving for you, but isolation and loss of identity are hardest for me. Although I counter isolation with emails, giving talks, and volunteering, they aren’t the same as personal contact. Besides, I have little time for these things. While I’m caring for my husband, I’m maintaining a writing career, and marketing my books. What’s my problem? Keeping my identity as a writer is a biggie.
A disabled person requires extra care. Even with two hours of paid care a day, I’m always behind. “I’m not trying to push you,” my sweet husband declares. His comment doesn’t make my task list any shorter, or give me an energy boost, or make me feel better. The “To Do” list is often a “Not Done” list.
The Caregiving, Mothering Mother and More blog discusses the identity problem in a post, “I Don’t Know Who I Am Any More: Losing and Finding Your Caregiver Identity.” The author is a mother, school director, writer, and family caregiver, a new role. This role included driver, health advocate, cook, and dedicated companion—a combination that made her feel like a dog “with a choke collar on a very short chain.”
Jack M. Rosenkranz, J.D. writes about identity in his article, “Caregiver Identity Theory,” published in the “Jewish Press of Tampa.” Caregiver identity theory originally came from Dr. Rhonda Montgomery and Dr. Jung Kwak, he notes. The idea behind the theory is that caregivers’ needs are multi-dimensional. “Caregivers themselves often require individualized plans to maintain their own health and quality of life,” he concludes.
Well, my plan is to keep writing books and articles. But publishing has changed. All publishers—traditional, independent, and hybrid–expect authors to market their work. This is a huge job by itself. Add that to caregiving and there are times when I feel like I’m drowning. However, when I see my books on the Internet, and hold them in my hands, stress and work hours are forgotten.
While wife, grandmother, and family caregiver are part of my identity, at this time of life, writing is most important. I’ve made some changes in my writing schedule, including getting up earlier, posting daily on the Internet, and taking online marketing courses. Writing is my self-care and salvation. What’s yours? We can’t let caregiving rob us of our identities. Keeping our identities makes us better caregivers!
When we first become caregivers or when there’s a new emergency, we go into super hero mode. You know what I mean: you do it all, without stopping, at the same time.
Nothing can stop you, until you can’t keep it up. It’s unsustainable. You can only suck it up and forge ahead for so long before you’ll burn out.
You’re burning out
The problem is, even super heroes aren’t super heroes around the clock, day in and day out.
Taking care of someone else all the time without a break leads to anger, resentment, and sheer exhaustion. You can’t think clearly. You snap at people. You can’t connect with people. You’re so anxious you can’t sleep. You’re miserable.
You know what they need. Do you know what you need?
Take a minute to ask yourself: What are you missing? What do you have? The more specific the better.
Most of us have a few coping methods we cling to, often from childhood. They may or may not be right for the challenges caregiving presents. Caregiving is often presenting new challenges, all on top of each other. You’ll need a whole arsenal of coping methods to make it through in one piece.
Think about what you really need. What specific things are getting to you the most?
Of the things that are getting you down, which ones could possibly be changed? Even a little?
Fight decision fatigue
Caregivers get stuck with a lot of responsibility. So many of the choices we face have no good answer, leading to immense guilt and anxiety.
Decision fatigue is a real thing, and it’s exhausting. Do yourself a favor and eliminate any decisions that don’t matter. Patterns, habits, and rituals are great for this.
Grab a few things from your closet that all match each other and fit you. Ignore the rest of your clothes and rotate these.
Eat the same things every week. Stick with one simple grocery list. If you can, get them delivered automatically…or from a neighbor who’s going to the store anyway.
Schedule appointments at the same times as much as possible.
Schedule times to make phone calls, do paperwork, and other chores.
The less you have to think about chores and things that don’t really matter, the more time you can think about the things that do.
Get back control
Sure, we’re making decisions all day, but it doesn’t feel like we’re in control at all, does it?
What makes your life feel out of control? What can you do to feel like you’re back at the steering wheel?
Is the unknowing of a lack of diagnosis driving you to your wits end? Turn to meditation or faith to learn to accept the unknown.
Has your life become a random series of chores? Set up a routine and stick with it as much as possible. Everyone works better when they’re following a routine.
Remember that caregiving is a choice. Perhaps it seems outlandish to imagine being able to walk away, but you could. What would it take? What would make you do it? Every moment you’re taking care of someone else is a moment you’re choosing to do so. You’re doing it because you want to be here, even if it’s hard.
Get in touch with you
You’re a human. Humans make mistakes, say the wrong things, and let people down. You’re going to lose your patience. That’s okay. We all do. Remember that. Other people probably have unrealistic expectations of what you should do. Let them, but remember there are limits to what you can do. You’re already going above and beyond.
Find a way to remember how proud you are of yourself. Maybe it’s journaling, a gratitude jar, or just thinking about it as you brush your teeth. A daily moment of reflection doesn’t have to be involved to be meaningful.
As a human, you still need to have an identity besides being a caregiver. Even if you barely have time for the other pieces of yourself, make that tiny bit of time. People who only take care of other people 100% of the time end up bitter, angry, and empty. This is your life, too.
You’re spending a lot of time thinking about someone else’s physical needs. Lots of caregivers neglect their own — and then die before the person they’re caring for, or become so ill they need a caregiver themselves. Stay in touch with your body, too. Go for a walk, even if it’s short. Don’t skip meals. There are lots of little tricks to stay healthy, even when things are hectic. Other caregivers are happy to share them with you.
You’ve cut out a lot of things in your life to be a caregiver. Surely there’s something caregiving related you can cut back on to make some time for yourself.
When you’re in super hero mode, everything that’s non-essential falls away. Friends and other relationships tend to get cut.
It’s fine to neglect your friends for a little bit, but in the long term it has huge consequences — for your physical and mental health.
Maybe you don’t have time to go out, but there’s always time for a quick text. Things like Facebook can help you stay involved, even if you don’t see someone regularly. It’s also a great way to let people know you could really use some company.
Adrienne found she didn’t want to talk to her old friends about caregiving. She wanted to keep her friendships as a bubble of her old, normal life. Instead, she wanted to talk to other caregivers, who better understood what she was going through. So she created this community.
But don’t let go of your old friends. Even if they’re awkward around you now, remember they have their own struggles. Invite them over for coffee, even if your house is a mess and you’re stressed out. Write them an email. Ask how they’re going and listen. You need them.
Know your strengths
None of us are good at everything.
Some of us are just not good at keeping track of bills and insurance paperwork.
Some of us have limits to our patience with other peoples emotional needs and poor behavior.
Some of us aren’t very good drivers.
You’re going to do a lot of things, but you can’t do everything. You shouldn’t do everything. Identify the things you just aren’t your strengths and find help with them.
Who will help? Social workers, librarians, and faith communities are a great start. There are community organizations that will help you with your taxes, provide free transportation, do your yard work, and provide companionship for your caree. Every community has different services, but someone you know can help you find help in your area. You can’t do this alone. And you don’t have to.
If you’re providing 100% of the care and not sharing the burden, if something happens to you, whoever steps into your shoes will be lost. It’s not good to be irreplaceable. Other people will do things differently. They’ll be annoying to deal with. They’ll disappoint you. But it’s still worth it to get help.
People don’t feel good when they can’t contribute. Is there something your caree can do to help you? Ask them to do it. Everyone has something to give — and they feel better when they have the opportunity to share it.
Know what you need
It’s incredibly difficult to know what we need. What will make us happy? People have been studying that for millennia.
When you know what you need, you’re half way to solving the problem. Identifying a need means you can find ways to meet that need…or learn to accept that it’s going to be unmet.
Not getting what you need leads to resentment. Resentful caregivers are not good caregivers, no matter how hard they try.
The thing is, no amount of self-care will allow you to be a 24/7 caregiver for a decade without burning out. Sometimes you need a real break — a vacation from caregiving.
Lots of us are taking care of people we love. We don’t want to go on vacation without them. That’s fine. Bringing in a professional caregiver — or a cleaner, handyman, personal assistant — can free you up to have quality time with the person you love. Rather than focusing just on caring for them, you can really be with them.
We were never close when I was young and we weren’t close once I was an adult. It was clear she favored my brother, but so many parents do. We did the obligatory parent/child things. Spent the holidays together.
I avoiding spending much time with her, because I found her to be a toxic person in my life. I didn’t need her criticisms of my weight, my choice of life partners, how I raise my own children. I have a happy marriage and children who are doing well and love me, but she was never happy with us. She made her disapproval known, not only to me, but to anyone within ear shot.
If she wasn’t pointing out my faults and failures, she was boasting about my brother. It always struck me as curious, since he’s usually in-between jobs, struggling with his drinking, and breaking up with his latest girlfriend. But this was just something I needed to accept and I did my best.
My brother calls me when he needs money. Or every year or two for bail money. But mostly he and I are both fine to live our very different lives. I wonder what our relationship would be like if she hadn’t coddled him while belittling me, but I do my best not to waste time thinking about it. It’s just a way to understand and accept why my brother and I were never close. He grew up being told I was a failure, how could he feel any differently?
My husband and friends all seemed to understand that while I didn’t want to cut my mother out of my life, I needed to keep my distance. Rather than being a source of support and wisdom, like some mom in a Hallmark card, she was a source of stress and self-loathing.
Few of us have Hallmark card families. I’m certainly not the only one with a strained relationship with a parent. It made me sad sometimes, but it was just one thing in a very full, complex life. I’d learned to accept it, as much as I felt I ever could.
And then my mom got cancer.
I’d worried about what would happen when she got old. I kind of knew it’d fall on me, but I’d planned for this by saving for both of our retirements. I anticipated writing cheques and managing paperwork when the time came. I had a good decade — or three — before I’d need to hire home health aides and companions and whoever else. Plenty of time to save. Plus, she has savings of her own.
Getting cancer at 50 was not part of this plan.
I guess it’s just as well, since she refuses to accept help from anyone but me. Why? Because she says it’s my responsibility.
She tells her friends, her pastor, anyone who asks that she’s just fine. She doesn’t need any help. She tells my brother not to worry about her.
She demands I move in with her. I agreed to stay with her while we was recovering from surgery and going through chemo. I wouldn’t have wanted to go through that alone.
Oh, if only I’d thought about what I was getting into! She turned into an evil princess. She demanded I wait on her hand and food, around the clock.
I knew I would need to do all the paperwork, run all the errands, do all the cleaning, and cook all the meals. I’d signed on for that. I didn’t expect to do them while she screeched bloody murder in the background. She wants these things done, demands that they’re done, but then resents any moment I’m not at her feet, waiting for her next command.
Her doctors said it would be good for her to get out of bed, get some exercise, get back to doing things on her own. She’s not supposed to be bedridden. But the bed is her throne. She’ll only get up on her own if I take that goddamned bell away from her.
It’d be one thing if she were simply demanding. But she’s also mean.
The names she calls me! She’s spent my whole life making it clear that she thinks I’m not pretty enough, not smart enough, not thin enough. They used to come as snide comments and backhanded compliments. Now she just yells at me for being a fat big, an ugly stupid lazy bitch, a useless good for nothing unappreciative child who ruined her life. Because her tea is too hot or not hot enough. Because she wanted the vanilla ice cream with the flecks of vanilla in it. Because I was busy folding her laundry and didn’t rush to her immediately when she wanted me to change the channel.
She gets up out of bed to wake me up to tell me to get her something that was on her nightstand.
All the yelling must take so much energy.
It took me energy to not just walk away. And then I saw her at the cancer center, walking around, laughing, getting up to get things for herself.
Why was I forcing myself to stay and take care of this horrid woman when she’s perfectly capable of taking care of herself?
Yes, as someone going through chemo, she could use some support. But will she die if I’m not there? No. She’ll simply save herself some yelling.
And so I left. Two months of her constant yelling, not letting me sleep, and telling me how worthless I am was enough for me.
My whole life, people have heard stories of my mother — or been lucky enough to meet her — and have reassured me that I was right to keep my distance. She is the classic toxic person all those women’s magazines warn you about.
But now that she has cancer, these same people are giving me a hard time about not staying to take her abuse.
Having cancer doesn’t make it okay to be an asshole. You can get frustrated, be upset, snap at someone in exhausted frustration and fear. But you can’t be mean to people for the rest of your life.
I read somewhere that in Cinderella it was originally the mother who was evil, but they changed it to an evil stepmother later on when the idea of motherhood became sacred. It was no longer acceptable to believe that a mother could treat a child that way.
I’ve spent my life not being good enough for her. I guess this is just one more thing to add to the list: abandoning her to die of cancer.
Really, day to day, nothing to write home about. I am blessed that my husband requires only a small amount of care during the day and my job is close by. So I can run home at lunch and feed/toilet him if necessary. Then back to work, where people complain about their husband not being good enough for one reason or another and I just want to smack them.
Friday comes and I have begun to measure that time so that some of it is satisfying to both of us, not just him. That was a huge step for me since most of the time I was worried about entertaining him during all of my spare time. This is the quickest way to experience burn out.
Now I take lessons, I plan adult activities for myself, etc. So in that respect things are better. Since the stroke in ’09, he has learned to repeat a few phrases but still remains unable to communicate anything but essential needs.
What’s keeping you up at night?
Mostly the need to communicate with someone, anyone, anywhere, about anything. I’ve tried a multitude of different avenues. Most are disappointing to say the least.
I plan to not be alone someday, but there is no way of knowing when that will be. Until then I live with a person who barely resembles the man I was once in love with. Instead I see a person who needs me more than I have enough energy to serve. But everyday I do, and every night I wonder how much longer or will I die before him from exhaustion.
What are you really proud of right now?
Right now I am really really proud that we are mostly out of debt. I’m proud of my children and my grandchildren and that we have for the most part, a good relationship. I’m proud that I can know that I am doing what I am supposed to be doing no matter how stressful or how discouraged I become.
What keeps you going when you feel like giving up?
Humor, Humor, Humor. I love standup comedy, I love to hang out with funny people who can help me laugh at all the problems and even laugh at myself.
Music, as much as possible. I retreat into songs that have deep meaning and that were written during times of sadness but speak of better times to come.
Reading about people who contributed greatly to society against all odds.
Ultimately I pray and ask for forgiveness and for a heart of thankfulness. Both of which I have been given abundantly
When a parent, spouse, or relative is diagnosed with Alzheimer’s, it can feel as if you’re starting an uncertain journey without any sort of roadmap. It’s a feeling that can persist even as the disease progresses. Often, caregivers look back during the later stages of Alzheimer’s and wish they’d taken earlier steps that would have made late-stage caregiving easier.
One particular area where this can crop up is music therapy for Alzheimer’s sufferers. In recent years, music therapy has been the subject of increased media attention and scientific research. There is now widespread anecdotal and data-driven evidence that music therapy is one of the most effective ways to reduce stress and improve the mood of Alzheimer’s sufferers, particularly those in the mid-to-late stages of the disease.
One of the biggest challenges to music therapy for Alzheimer’s patients is choosing the right music. That’s because the most effective music therapy programs use a patient’s favorite songs from their childhood, teenage years, and early adulthood. Even when late-stage Alzheimer’s has claimed other memories, the beat or hook of a once-familiar tune can dissipate stress, encourage cognitive activity, and transport sufferers back to the feeling of happier times.
If you are caring for a loved one with Alzheimer’s, it can be hard to find the right tunes for music therapy — especially if you start searching in the mid-to-late stages of the disease. By this point, it will likely be more difficult for your loved one to recall the artists and song titles they were most fond of growing up. More important, it will be harder for them to have the kind of conversations that make it easier to build a music therapy playlist.
If you have someone close to you who’s recently been diagnosed with Alzheimer’s, taking steps now could make it easier to care for your loved one in the later stages of their condition. To find the artists and songs your loved one responds best to, consider the following suggested steps and resources.
Start with Conversation and Research
The first place to start when researching a loved one’s childhood musical tastes is with conversation. Even if your loved one can’t remember all — or even most — of their favorite artists and songs from their early years, they will likely be able to remember a few that you can use as a launching off point.
It’s not necessary to have a single long and intensive conversation. In fact, it may depress your loved one to dwell on preparations for the progression of their illness. If this is the case, you may wish to have short conversations, or ask casually without bringing Alzheimer’s into the conversation. On the other hand, your loved one might enjoy the trip down memory lane, in which case you should feel free to mine their memories.
Once you’ve pinned down a few of their favorite songs and artists, you can turn to the internet for further research. These days, it’s easier than ever to explore a genre or decade of music. Whether you’re using links on Wikipedia, a music streaming service, an oldies satellite radio station, or a combination of all three, you can begin researching the sort of singers, bands, and songwriters that your loved one grew up listening to.
As a general rule, focus on the twenty-year period between your loved one’s fifth and twenty-fifth birthdays. Find out what kind of songs were on the radio at that time, and which artists were most closely associated with the ones your loved one enjoyed. You can use links between Wikipedia articles, suggested artists on streaming services, or whoever’s up next on the oldie station to make these connections.
See What Your Loved One Responds To
Once you’ve brainstormed a list of possible artists and songs, start putting playlists together to share with your loved one. Unless your loved one is invested in the project, don’t force him or her to sit down with headphones and a notepad. Instead, play the songs as background music while doing tasks together, during relaxing moments, or while driving in the car.
At this point, see how your loved one responds. If your loved one says they remember certain songs or certain artists, make a mental or physical note of which ones. If they seem to perk up at the sound of a particular tune, keep that song in mind for the future. If they’re humming along or bouncing their knee to the beat, that’s even better.
During these listening periods, you’ll start to get a better sense of which artists and genres your loved one connects with most. You can then start repeating this process, using the songs and artists your loved one likes to get a better sense of which other songs and artists they might be inclined toward. You can then go back to your research to brainstorm new songs to try out.
The more time you spend on this, the more you can become familiar with the music from your loved one’s earlier years. As you become better versed in the music of the time, you’ll be able to make smarter and more educated guesses about your loved one’s tastes. You might also find that you begin to develop a deeper bond with your loved one through this process, giving the two of you something to talk about that truly hits home.
Create Personalized Playlists for Music Therapy
Whether your list ends up getting narrowed down or dramatically expanded, you’ll soon be able to generate a full collection of songs for future music therapy. At this point, you can begin to put half-hour or hour-long playlists together, selecting the songs that you think will be most joyous or most calming for your loved one.
Of course, there’s no need to shelve this collection during the early stages of your loved one’s Alzheimer’s. If you’ve found that these songs have had a positive effect on your loved one, you should continue to play them and enjoy them together.
You may even wish to take more trips down memory lane. These days, it’s just as easy to research old radio shows or movies that your loved one may not have heard or seen for several years. While plot-driven narratives are hard to follow for mid-stage and late-stage Alzheimer’s sufferers, reliving these memories can be invaluable for those in Alzheimer’s early stages.
When the Time Comes, You’ll Be Ready
By doing this kind of legwork during the early stages of Alzheimer’s, it is easier to provide music therapy for a loved one when they reach mid-stage or late-stage Alzheimer’s. While this can be an extraordinarily difficult time for you and your loved one alike, it can be made easier if you’re able to provide your loved one with moments where he or she feels comfortable and at peace with the world.
At this time, it’s important to make sure that your loved one is comfortable when listening to his or her music. Consider investing in a padded pair of over-ear headphones, which can make it easier for your loved one to focus on his or her music. Also, remember that music played at loud volumes can be stressful or disorienting for those suffering from memory disorders. Make sure to test the volume of the music before playing it for your loved one and try turning it down if the volume seems to agitate him or her.
In addition to music therapy, there are a number of other therapeutic activities and exercises for those with Alzheimer’s. More and more Alzheimer’s caregivers are integrating art therapy and nature therapy into the care they provide for Alzheimer’s sufferers. These therapies — either in conjunction with music therapy or on their own — may also help you in caring for your loved one.
Larry Meigs, President & CEO of Visiting Angels
Visiting Angels is America’s choice in home care. Since 1998, Visiting Angels locations across the country have been helping elderly and disabled individuals by providing care and support in the comfort of home. In addition to senior home care and adult care, Visiting Angels provides dementia care and Alzheimer’s care for individuals suffering from memory disorders. There are now more than five hundred Visiting Angels locations nationwide.
Staying active fortunately doesn’t have to mean hitting the gym every day. Activities for seniors, from volunteering to swimming, moderate hiking, even simply getting out of the house to grab lunch with a friend can have immediate health benefits. Caregivers looking to optimize their loved one’s overall physical and mental health will be thrilled by these tangible benefits of routine activity:
Physical Wellness: In addition to promoting a strong immune and digestive system, regular exercise in old age can help fight illnesses like heart disease, obesity, high blood pressure, dementia, Alzheimer’s, and colon cancer to name a few. Is the person your care for experiencing minor back or knee pain? Staying active with low-impact physical fitness helps stretch your spine, reduce muscle inflammation and improve circulation, which in turn, can alleviate aches and pains. The benefits of physical activity far outweigh the risks for older people, but if you are concerned about injury, consult your doctor and encourage your loved one to start with gentler physical activities like daily walks, yoga, tai chi, or water aerobics.
Positive Attitude: Both exercise and socializing with friends triggers an endorphin release in the brain, promoting self-confidence and overall happiness as well as reducing feelings of sadness and anxiety. Volunteering in the community is a great way for seniors to stay active and is also proven to help people feel more socially connected, combatting feelings of loneliness and isolation that can often accompany old age. If the person you care for is feeling depressed, angry or generally grumpy, striking up a routine of some type of activity daily, like a 20-minute walk, or a stretching session to a playlist of their favorite songs, both gives them something to look forward to as well as promotes endorphin production.
Mental Clarity: For seniors, “staying active” doesn’t just refer to the body, but the brain too. Routine activities should include those which stimulate positive brain function, thus enhancing critical thinking and preventing cognitive decline. Solving puzzles or playing thinking games regularly, like Sudoku, Chess or Scrabble, encourages your loved one to multi-task, and use creativity, problem-solving skills and memory. Stave off dementia, memory loss, and Alzheimer’s with physical exercise too, which boosts blood flow to the brain and has been shown to promote cell growth.
Better Sleep: Getting out, exercising regularly, and staying active can help your loved one fall asleep faster, get a better night’s sleep, and wake up more rested and alert. Better sleep then cyclically feeds into a desire to be more active as well as promotes better brain function. As a caregiver, are you concerned about your loved one falling? Exercise and healthy amounts of sleep can boost your loved one’s mobility, coordination, and balance which means reducing their risk of falling. A win-win!
Sense of Security: When it comes to routine activity and providing a sense of structure and security for your loved one, “routine” is the key word. For caregivers and those they care for, following a daily set schedule that involves some type of physical activity is paramount. Taking meds at the same time each day, exercising and eating meals around the same time each day, and waking up and going to bed around the same time each day help people, especially the elderly, feel less stressed and sleep better.
For caregivers, the resources to help your elderly parent, grandparent or friend whom you care for aren’t always in abundance. Daily activities might require transportation you can’t provide, or time you simply don’t have because of a job or other obligations. Prioritizing regular exercise and activity that so greatly benefits senior citizens is easier with the help of other family members or friends who are willing to pitch in.
Consider organizing a care calendar where your loved one’s support network can sign up to transport them to the local senior center for tai chi class, to take them out for a walk, or to bring lunch over and do puzzles together. Online coordination tools like CaringBridge and SignUp.com provide free online signups and calendars for you to organize help. And local agencies and caregiver networks may offer free transportation or daytime activities for your elderly loved one as well. Do your research and don’t forget, keeping your favorite senior active will effectively make life better for them and you!
I first heard of Huntington’s Disease when I was 20 years old. A frantic, hysterical phone call from my mom told me that she was certain that she had an incurable, genetic disorder called HD that involved the slow deterioration of cognitive thinking, muscle coordination and the appearance of behavioral and psychiatric problems. The disease itself is a mutation of a certain gene that can be inherited by a parent. If your parent had HD, you have a 50/50 chance having the mutation. If you do not have the disease, your children or children’s children will never have it either. There is no cure. There are no proven treatments. The disease itself often starts out with subtle mood swings or twitching and progresses to a total loss of independence.
My mom had inherited the mutated gene from her mother who passed before I could remember her. Her brother, my uncle, also inherited the gene and became to experience symptoms 10 years before. His method of coping was ending his life. I had known about the suicide, but not the reasoning.
If you are reading this, you are probably asking yourself why I had never asked about how my grandmother died or why I had never heard any stories about her. Or, further, why I had never asked about the uncle that I had never really known. The answer is that I was a child. And children are selfish. And that’s okay. The secret was something that my parents kept from myself and my younger brother to shield us. The thought of my mother carrying around the secret of the disease that tore her family apart, makes me feel sick.
As she continued to cry through our phone conversation, the full story began to unfold and I understood that she had known for her whole adult life that this may also be the end for her. And, not only was she affected, but also my brother and I had a 50/50 chance of inheriting the gene. There was the other punch in the stomach.
The news itself put me into a fog that I couldn’t escape. I was a junior in college in Upstate New York. I was used to worrying about tests and internships and figuring out what I wanted to be when I grew up. I told only a few close friends and then tried as best as I could to go back to regular life.
A few months later, my parents drove to Mass General to see a specialist. The visit was followed by a happier phone call from my mom telling me that the specialist did a few tests and didn’t see any symptoms present! We were thrilled! I don’t remember the words that were said, but as I could remember it, we were certain that this meant that she didn’t have Huntington’s! And I was free to live my life and so was my brother. And that this scare was over.
Again, if you’re reading this, you’re probably asking yourself why I didn’t ask any questions about the testing itself. Or why I was so certain that this initial visit meant that this horror was over. In all reality, I can’t be sure if I so badly wanted HD to go away, that I created the idea that she didn’t have it or if she was the one who so badly wanted it out of her life that she was the one who was in denial. Truth be told, she didn’t get the genetic test at that visit. Even though, at the time, she was symptom free, that didn’t mean the disease wasn’t in her body.
A few years went by and I moved to Los Angeles to work in the entertainment industry. My life that my parents had fought so hard to give me came back. I bounced from job to job and felt under-appreciated and underpaid and all of the things that you are supposed to feel in your early twenties. I dated unsuccessfully and, when I wasn’t expecting it, fell in love with my now husband.
At the same time, my brother had gone away to college and left my parents alone in the house. The distance between them grew and they realized that, without us kids, they didn’t have much in common anymore. My mother, who had struggled with depression, fell into a deeper depression and withdrew from society. She had trouble sleeping. She became obsessive with researching politics and green lifestyles and hid herself in the internet. She had difficulty focusing on tasks, planning, organizing, prioritizing. She became impulsive and lashed out at the world through email. To her, everyone was out to get her and they were all in the wrong. And then, when confronted by my father, she decided that was the last straw and left him.
She landed at LAX the next day and in the following years she bounced from Arizona to Hawaii to Orange County and, finally, to San Diego. In my head, I rationalized her erratic behavior to that of a midlife crisis. After all, she spent her teenage years taking care of her own mother who was dying of HD. She never got the college experience or studied abroad or had the freedom like my brother and I did. She must have felt trapped. I thought that maybe this was her chance to explore and, as many people do when they go through a divorce, be selfish.
When she moved to Southern California, we got together every month or so. She had just come from living in Hawaii where she was eating healthy and exercising and had a glow that only Hawaii can give you. She looked great. Some visits she would be the same loving mom that I grew up with and some she was a different person.
In 2011, S and I got engaged and life turned upside-down as it does when you are planning a wedding. Engagement parties came and went. As I watched my mom interact with my new family and friends, it became more and more apparent that something was very wrong. She lost her balance sometimes, she walked with wide, awkward steps and had difficulty with eye contact. She had trouble with conversation. On the other hand, my mom has always been a bit shy around new people. I was too preoccupied (and deep down probably too scared) to admit out loud that anything was wrong. It was easier to be wrapped up in my own happiness and pretend that she was just a little clumsy.
The months leading up to our big New England island wedding were stressful. My mom seemed disinterested and distracted. Most visits began with tears because I got agitated when she was late. She would tell me she got lost or lost track of time and would tell me I was being too judgmental. I would tell her that I felt abandoned and felt she didn’t care about anyone but herself. And then she would cry because she loved me and my brother more than anything and couldn’t stand the thought that she was hurting us. We’d make up. And then it would start all over again.
Our wedding day came in July of 2012. Even though it was the hottest and most humid day of the summer, it was absolutely perfect. My husband is amazing and supportive and truly, my best friend. And I couldn’t be happier. The weekend was the first time since my parents split up that they saw each other. I will never be able to thank them enough for acting cordial and putting my feelings ahead of their own. They even held hands as they exited the ceremony (I never asked them to do that). Not only that, but my talented, incredible brother had graduated from an Ivy League school the month prior and rejected an incredible opportunity to teach in Korea in order to make sure he could be there for me on my wedding day. I will never feel more loved than I did then.
After the wedding, we adopted a little doggy and unpacked all of our gifts and life went back to normal. At the same time, my mom started sending manic emails accusing my dad and her family of horrific things. As we settled back in, the feeling that things didn’t seem right came back. The turning point was when one of my cousins called me concerned about my mom and brought up the possibility of Huntington’s Disease. I, after so many years, still believed the story that I had told myself that she was tested and she didn’t have the symptoms. But, in the days since that conversation, I looked closer at the symptoms of HD and, each day, saw how closely they aligned with the ways that my mom had changed in the last few years.
And then it clicked and I lost it.
Asking my mom to get the test was one of the scariest conversations I ever had to have. I told her that we had babies on our mind and I wanted to be sure that we were in the clear before we brought any at-risk babies into this world. That was true, but only part of the story. She was mature and understanding and immediately agreed to take the test. After she so easily agreed, I started doubting myself again. She seemed so rational and so sure she didn’t have HD that I started to believe it myself.
We scheduled the appointment and braced ourselves.
Humor May Be Antidote For Pain Of Death For Patients, Survivors
Just weeks before Christmas some years ago, Shirley Rapp and her family faced the devastating news that she had what appeared to be a terminal illness.
But that didn’t stop Rapp from wanting to do one last round of Christmas shopping for her kids. Her daughter, Karyn Buxman, a self-described neurohumorist and RN, went along. When the mother-daughter duo stepped into a St. Louis-area stationery store, Rapp picked up a day planner that she admired, turned to her daughter and quipped: “If I make it past Jan. 1, will you buy this one for me?”
That’s when Mom and daughter burst into laughter that attracted every eye in the store.
For some folks, the process of dying comes with less stress when it’s something of a laughing matter. Not a yuk-yuk laughing matter. But, at its simplest, a willingness to occasionally make light of the peculiarities — if not absurdities — that often go hand-in-hand with end-of-life situations.
An aging generation of boomers, the oldest of whom are now 70, grew up to the background sounds of TV laugh tracks and are accustomed to laughing at things that might not always seem so funny. There’s even a non-profit organization funded by donors, conference revenue and membership dues, whose mission is simply reminding people that laughter is a core ingredient of all facets of life — even end of life.
Humor is particularly important when folks near end-of-life situations, says Morrison. Turning 70 hasn’t stopped her from engaging in activities specifically to make her laugh — like hopping on her pogo stick. “While death cannot be cured, your frame of mind is something that you can change.”
Her group has some loose guidelines for the use of humor among the dying. Most critically: Make certain that you know the ailing person very well before using humor with them.
On its website, the National Cancer Institute urges patients to build humor into their day-to-day lives, in ways as small as buying a funny desk calendar and watching comic films and TV shows.
Buxman, who earned a lifetime achievement award from the AATH, gives speeches on the importance of life’s comic moments. A former hospice nurse, she takes humor very seriously. She has studied the impact humor has on the brain and on the stress levels of patients in their final days. The right humor at the right time, she says, can infuse the brain with pleasurable hits of the stimulant Dopamine, decrease muscle tension and anxiety in the body’s nervous system, and momentarily diminish feelings of anger or sadness.
As it turns out, her mom survived her initial illness — only to later develop a fatal form of Alzheimer’s. Near the end, Buxman took her mom to the doctor’s office — at a time her mom had stopped responding to most external stimuli. While sitting in the waiting room, Buxman could hardly believe it when her mom uttered, “Make me laugh.”
Buxman knew this was the time to share a funny, family memory. She recounted to her mom the story about the time the two of them visited the kitchen section at a large department store and saw a display of frying pans cooking what appeared to be artificial eggs. “This food looks so real,” her Mom said, poking her finger into the fake food. But the egg was real, and when the yolk popped, it oozed all over Rapp and the display.
“As I recounted this story, Mom’s face moved and her eye’s sparkled — and the two of us just doubled-over with laughter,” says Buxman. “Even near death, we can still communicate to the most primitive part of the brain — with laughter.”
But family-related humor isn’t only acceptable in terminal situations — it’s often helpful.
Just ask Paula McCann, an elder attorney from Rutland, Vt., who writes the blog onthewaytodying.com. She recalls when her then 83-year-old father, John, who was diagnosed with Alzheimer’s, requested to die at home. His children and wife took turns caring for him. One evening, McCann sat with her mother at her father’s side, shortly after he had been administered his last rites. Mother and daughter started to discuss where his soul was at that moment. McCann suggested to her Mom that perhaps it was in a holding pattern, while God reviewed the right and wrong he’d done, before allowing him into heaven. That’s when her mother quipped, “He’ll be there forever.”
A sense of humor about all of the drugs patients deal with at life’s end, helped Ronald Berk, former assistant dean at John Hopkins University, through a rough patch. His wife, Marion Smith-Waison, a former OBGYN doctor, was very ill before her death 18 months ago. She had scheduled a meeting at their home with folks offering holistic medicines. When Berk entered the room, a drug counselor asked him, “Are you taking any medications?” Berk shot back, “Yes, I was taking crack — but I gave it up for lent.”
Berk insists humor at that stressful moment offered a critical “release valve.”
Chip Lutz, a professional speaker who retired from the Navy years ago, recalls the importance of shared humor before his father, Eugene, died last year. Trying to squeeze an extra hug out of visiting family members, Eugene often cajoled them with, “Well, this might be the last time you see me.”
But Eugene’s son, Chip, had the perfect response. “You can’t die yet — I don’t have your eulogy done,” he shot back.
Few people hear more morbid jokes than hospice workers. Several years ago, Allen Klein, an author and motivational speaker, volunteered at a hospice in the San Francisco Bay area. An elderly woman he was assisting told him that after she died, she wanted her husband’s bedroom repainted — with her cremated ashes mixed into the paint.
“Why would you want that?” inquired a confused Klein.
“So I can look down at my husband and see if there’s any hanky-panky going on.”
My son was born two years ago. Nothing pains me more than knowing he will never know my mom for the person she was my entire life. That someday she may not know who he is at all, when one of her biggest dreams was for a grandchild, is a terrifying and unsettling thought. Yet it also brings me joy to know how much his presence on this earth has helped her. She always says that having him in her life makes what she is going through so much easier, and that she hopes everyone suffering like she is has a baby in their life to love.
Lost, anxious, depressed, afraid, angry, confused, and overwhelmed. These are just a few feelings that I am sure my mother faces on a daily basis. It saddens and enrages me that this is happening to her at the young age of 65. Accompanying the huge range of emotions she is dealing with are the emotions of her loved ones hoping to provide her with the best care possible through this process. It is hard on us all.
At this point, you are probably wondering what exactly it is that she is going through. Unfortunately, our family is wondering the same thing. For the past few years we have been slowly watching my mother’s decline. It has been scary, painful, and frustrating to say the least. It has already been a long journey for my mother, father, brother, and I, and we are still looking for answers and an accurate diagnosis. We don’t yet know if it is psychological or neurological, but there is no doubt that something in her brain is not functioning the way it is supposed to. Words like “dementia” and “Alzheimer’s” have certainly been thrown around.
It started out with some garbled speech. She couldn’t find the words she was looking for and stumbled over words that she did know. We then brought her to our primary care physician to rule out a stroke. After some testing, they could find no reason for her symptoms. This brought on a slew of appointments with neurologists, psychologists, and psychiatrists over the last few years. Tons of tests were done including CAT scans, PET scans, a spinal tap, and more. We are currently awaiting results of some more specific frontal lobe testing. She has also tried many different medications to no avail, and we are still scrambling to find the right fit.
During this time she has had periods of stagnancy, where she would go without any decline whatsoever. This gave us hope, because we were able to get acclimated to her – and therefore our – “new normal.” There have also been periods of rapid decline, where she is suddenly unable to do multiple things that she had just been doing daily.
Currently she has trouble with her memory, reading and writing, and performing daily tasks that the average person can do without much conscious thought involved at all. What’s troubling is that she is either aware that she is forgetting or having trouble, which makes her sad and frustrated, or she believes she can do something without help, which can end up with her feeling embarrassed or even getting angry with us.
My mom was always the woman who took care of all the children in the neighborhood. Other parents would come to her for advice, and whenever a child needed help in school, got hurt playing outside, or just needed someone to talk to, she was the first person they came to. Throughout her lifetime she also helped many adults by offering them a place to stay or giving up her time and resources to make sure they were taken care of. She lived a selfless life. It isn’t fair what she is going through.
Still without a sure diagnosis, we don’t know whether there will be treatment or a cure for what she is dealing with, or if she will continue to decline until the time she is no longer with us. As difficult as it may be to lack the answers we so desperately crave, the uncertainty leaves room for hope. It can be easy for me to get caught up in the stress or self pity that accompanies caring for a sick parent. I feel that we should have had much more time before anything like this happened. I mainly hope that I can be half the woman she raised me by example to be, and that I can support and love her no matter where this journey takes us next.
By: Rachael Mariani
My name is Rachael Mariani. I am a 24 year old stay at home mom and the author/owner of Uninvincible Mom, a motherhood and family lifestyle blog that is set to launch soon! My goal is to empower others in their imperfections, and to promote quality family time with an emphasis on the children.
As a 66 year old looking after my 90 year old dad…it is not nice to be me right now, sadly.
The year my hubby retired we had such excitement to start our travels and new journey. We got one trip in and came back to the news that dad was moving in with us.
That was 5 years ago and our life changed drastically…have not gotten to do the traditional things with my kids and grandkids…have not gotten to travel.
I have 2 brothers and 6 other sisters…only one brother helps out but he still works. We finally had to put dad in a nursing home on Dec 28th 2016.
So thought it might be better, but dad continues to not like me to be happy…every time in the last 5 years we tried to go away he got upset and made himself seriously ill and l could not go or had to come back.
Trying to play tough love now with him…l am up half the night trying to figure out how to go away and enjoy myself now that he is in a home…2 weeks ago l went 3 hours away to babysit my grandsons…he did it again and the nursing home was calling me all the time…l did play tough love and not go back. Sleep is terrible…l was told because he plays these games and destroys his body and kidneys by not eating or drinking till l get back that most likely l will not be around when he takes his last breath if l decide to go away..but they said go…yeah right, that is hard decision to make.
As soon as l come back he starts to eat and drink again.
Nobody else in the family hardly visits or will step up to the plate…l handle everything now.
I am tired and angry and feel guilty for being angry too even though he does not have to be like this.
I am angry at the rest of my family also…but they just do not care.
So my life l feel is ticking away while l am stressed and getting ill myself now…any suggestions will be greatly appreciated, but l have probably heard them all.
l am his POA so l make decisions my brother is POA also but leaves most of it up to me…