The busy summer vacation travel season is well underway, as families and friends gather for special occasions, trips of a lifetime, and everything in between. Whatever means of transportation is required, traveling with an older parent or loved one can add layers of complexity to a journey – not to mention assistive equipment such as walkers and wheelchairs – but sometimes a necessarily leisurely pace can allow everybody involved to relax and truly enjoy themselves, no matter what time of year you and your elderly companion hit the road.
Flying With a Senior Companion
Unpredictable delays notwithstanding, flying usually gets you to a destination faster, but it requires more organization and patience than other modes of transportation. Even though TSA regulations in the United States seem to be a moving target, concessions have been made to seniors (75-plus) and their companions that expedite getting through security checkpoints. Here are a few additional tips to ensure safe and healthy travel with seniors:
- First, confirm with your loved one’s physician that he or she is cleared to fly, and has had current flu and pneumonia vaccines. Request a doctor’s note explaining any surgical implants or paraphernalia, such as needles. If applicable, a TSA disability notification card can make it more expedient to get through security.
- At the time of booking, request any desired assistance (wheelchair, electric cart, pre-boarding privileges), and reconfirm a day or two before departure.
- Select seats in advance, when allowed. An aisle seat toward the front of the plane offers easier boarding and deplaning, but being near the toilets may be desirable for long-haul flights. Compression socks are recommended on flights longer than a few hours, even for travelers without risk of deep vein thrombosis (DVT).
- Check in for the flight online 24 hours in advance, or call customer service for help choosing an optimal seat.
- Pack light, but plan to check bags if an aircraft change is part of the itinerary.
- Get to the airport a full hour earlier than suggested for your departure time.
- Keep your older traveler’s prescription medications separate from other belongings for easy screening. On-board baggage limits don’t apply to medical supplies, equipment, mobility aids and assistive devices. Liquids exceeding 3.4 oz/100 ml are permitted. (Visit www.tsa.gov for further details regarding U.S. departures.)
- If your travel companion has dietary restrictions, order a special meal in advance, when offered, or bring his or her food on board.
- Apply hand sanitizer liberally, and use antibacterial wipes to disinfect hard surfaces around his or her seat.
Tips for Traveling Abroad with Seniors
International travel with a senior may seem especially daunting, but once you dive into the planning process you may find the prospect isn’t as scary as you think. Many nations show great respect to older people, and as world populations age, it has become easier than ever for seniors to travel the globe.
Expert Valerie Grubb, author of Planes, Canes, and Automobiles: Connecting With Your Aging Parents Through Travel and the popular blog Travel With Aging Parents, has traveled extensively with her own mother. “Narrow sidewalks and ancient tourist sites can make some destinations in Europe tricky when vacationing with a parent in a wheelchair,” says Grubb, “so I strongly suggest doing a little research on accessibility before just showing up. That said, Mom and I particularly enjoy Paris and London, and have found local businesses and people to be incredibly helpful as we navigate around the city.”
Here are a few more tips to keep in mind:
- Several weeks in advance, make sure any vaccines recommended for the destination are up to date.
- Ensure passports are valid for at least six months after the return date and request any necessary visa(s) well ahead of time.
- Have a doctor provide a list of generic names for prescription drugs, as overseas pharmacists or physicians may not recognize all pharmaceutical brand names.
- Travel insurance for seniors is costly, but it can be a lifesaver. Not only can a senior who takes ill be reimbursed for all or part of a trip, but a policy including evacuation insurance can help get him or her to appropriate medical care in case of an emergency.
- Consider upgrading your cellular service to a roaming plan that provides full use of your phone for the duration of the trip, so you’ll be able to search the internet freely and call a hospital or ambulance immediately should the need arise. (In the European Union, call “112” for a police, fire or medical emergency.)
Traveling With Older People – The Basics
Destination, type of travel, and health and mobility are all mitigating factors that come into play when planning a trip, but a list of tips for traveling with seniors is a great place to start:
- Do plenty of advance research and don’t hesitate to inquire about senior discounts – for travel, hotels, food, entertainment – both domestically and internationally.
- If he or she wears prescription glasses, bring a backup pair, as well as sunglasses for bright days. (Fitover and clip-on styles are great options.)
- Hearing aids? Don’t forget spare batteries.
- Use a smartphone to photograph all identification, medical cards and prescription bottles in case of loss or theft.
- Keep meds in original packaging, and bring a week’s additional supply.
- Pack a tote with favorite healthy snacks and beverages, and items such as playing cards, a book, travel pillow, and sweater or blanket.
- Even for seniors who don’t have cognitive impairment, a wearable GPS device or ID bracelet bearing your name and contact phone number can bring peace of mind.
- A ground-floor hotel room or one near an elevator may be best for seniors with mobility issues. Confirm that rooms identified as “ADA compliant” include grab bars and space for wheelchair maneuverability, as needed.
- Don’t overschedule, and remain flexible to allow for naps or restroom stops. Whether due to medications, a specific condition, or simply age, older travelers are more likely to tire earlier. Symptoms of Sundowners Syndrome may be more pronounced when seniors with dementia are away from familiar surroundings.
- To take some of the pressure off you and your family, consider hiring a professional caregiver to accompany you on your travels.
If time isn’t an issue, a road trip is the easiest and most straightforward way to travel with seniors. Although protracted hours on the asphalt can be exhausting, driving provides the option to stop anywhere and for as long as desired: unplanned detours to must-see sights (Wall Drug or World’s Largest Ball of Twine, anyone?) require little more than a flexible schedule.
While bus and train journeys offer less spontaneity and little or no privacy, they eliminate driving responsibilities, often provide Wi-Fi connectivity, and a restroom is always nearby.
North American cruises are a popular vacation option for seniors because they take a lot of the preparation and trepidation out of travel: most ships and destinations are well equipped to cater to the social, medical, and mobility needs of older passengers. For people who live near one of the nearly 30 U.S. and Canada departure ports, embarking on a cruise is only slightly more onerous than navigating Costco on a Saturday afternoon.
While getting to overseas points of origination requires more time and effort, international cruises can offer senior travelers and their companions exotic experiences that don’t skimp on safety, comfort, or the convenience of English-speaking staff.
One More Tour, With Honor
Seniors who served in the U.S. military may be eligible for an all-expenses-paid trip to Washington, D.C., to visit the National World War II Memorial and other sites that pay homage to their sacrifice during wartime. Honor Flights are made possible by generous donations from corporations, individuals, volunteers and airlines – including Southwest, the organization’s official carrier.
Since 2005, the non-profit Honor Flight Network (consisting of two groups that joined efforts in 2007) has flown tens of thousands of veterans to one of the three D.C.-metro airports, where arrivals are greeted by representatives from Heroes’ Welcome, an Honor Flight sub-group. A friend, family member or volunteer guardian typically accompanies vets.
As of May 2017, there are 131 hubs in 45 states, making it easier than ever for a veteran to get to an Honor Flight departure point. The program is primarily available to World War II and terminally ill veterans, but is also increasingly open to veterans of the Korean and Vietnam wars. To donate, apply or learn about self-funded tour participation, visit honorflight.org.
For more information
Traveling with an Elderly Parent
Caregiver Tips for Traveling with the Elderly
4 Ways to Soothe Sundowner’s Symptoms
Caregivers Traveling with Families
7 Tips for Safe and Healthy Travel with Seniors
Honor Flights Offer Veterans One More Tour with Honor
If you help care for an aging loved one, or are advancing in age yourself, you are probably aware of the importance of medication management. As people age, they can develop multiple chronic conditions, which may require several long term prescriptions. In fact, nearly 40 percent of elderly adults living in their own homes are prescribed more than five medications. In turn, follows an increased risk of drug interactions, side effects, and accidental missing or doubling of doses. Medication management is a set of practices to prevent these events from happening. Polypharmacy, the term used to describe the usage of five or more drugs at once, can pose potential dangers for aging loved ones. Adverse drug events, or ADEs, due to negative effects of polypharmacy are to blame for 700,000 emergency room visits and 120,000 annually, resulting in $3.5 billion in medical costs across the country. Comprehensive medication management is no small task, and here are a few tips to get you started.
Courtesy of BrightStar Care
As people age, it’s not uncommon for their personalities to change and for them to become more controlling. It’s usually the result of medication, pain, the frustrations of having difficulty doing things that were once easy and changing family dynamics. While it can be frustrating and even unpleasant at times to deal with, there are things you can do to make the situation better and more bearable.
Kurt Kazanowski MS, RN, CHE, has more than 30 years working with seniors, first as a nurse, and now in hospice and homecare.
His advice for dealing with a controlling aging loved one:
1. They want to control something.
Everyone wants to feel they can control their own lives, but there comes a point when we all lose grip of it. Our independence slips away, and we need help for the simplest things. That can be a defeating concept. It is a challenging reality with which to come to terms. Be sensitive to this in your aging loved one. Being surrounded by support and understanding only makes it easier.
2. Medications can change personalities.
Keep in mind when your loved one began their medications. Take note of any personality changes within two weeks, one month and a few months span. If you notice the personality changes coincide with the new medication and not another variable, speak with their health care provider about options.
Medications manipulate the chemical balances in our brains, and when that occurs, our moods and behaviors can shift. Offer the idea of starting one medication at a time to see how your senior changes in accordance to the new meds. This way, it is easier to pinpoint which medication causes which side effects.
3. Pain can make people act out.
When you are not feeling well and your body is in pain, it can cause you to lash out at those around you. If your senior parent is doing this, offer to find them relief in the form of therapy or medication. Occupational therapy can be a great tool to overcome painful patterns of movement and seek some relief.
4. Consider family dynamics.
Was your aging loved one always in charge of the family? Did they always dictate how things were going to be done? They might still be trying to exude this power over the other family members. If you are a child and the primary caregiver, your parent might still be trying to act out these old dynamics.
Controlling behaviors are considered abuse. Try to talk with your parent about how their actions make you feel. It is not too late to do this, and as your dynamic changes to caregiver, it can be a good time for healing past wounds.
5. Use positive reinforcement patterns.
Reward the positive behaviors of your loved one. Do not reward, or punish, the negative behaviors. Using reinforcement patterns is one method to motivate your controlling loved one to better actions. If they are becoming upset or angry, offer them kindness and suggest to discuss it. If they don’t respond respectfully, leave and tell them you will come back when it is a better time. It may sound harsh, but it is better than scolding them or getting upset yourself.
6. Talk, if they are willing.
Sometimes your controlling parent or loved one lashes out to get attention, like small children. They want someone to give them some more attention and care. Ask them how you can help. Genuinely speak to them. Most importantly, listen to what they are saying. They may just want to vent their frustrations to someone that cares. We can all understand that.
7. Grant them the little victories.
For them to feel they still have control, let them make decisions when possible. If you are going out to eat as a family, let them select the restaurant. Ask their opinion about important life matters to include them in situations. Help them find a creative outlet so they can focus their controlling energy into projects. Knitting, painting or sewing are some good options that require creative choices for them to control themselves.
8. Bring in the backups.
If nothing else works, you do have other opportunities. Don’t fret. You need to set your boundaries with your loved one, and if they do not respect that after a point, you can seek other help for them. There are assisted living and nursing home options. That way, there is a professional caregiver that will deal with the daily tasks for them. You can then take the personal family member role and see them whenever you see fit.
Kurt Kazanowski is an author, speaker, coach and consultant in the areas of aging, hospice and home care. He is a native of Detroit, Michigan, and has over three decades of experience in the field of healthcare. He received his bachelor’s degree in nursing from Mercy College of Detroit and practiced as a public health nurse for many years. Today, Kurt is the owner of two successful personal care home health companies – Homewatch CareGivers in Michigan where he lives and First Home Care in Moscow, Russia.
Kurt is also the author of A Son’s Journey.
WASHINGTON, JUly 31, 2017 – Meltdowns are natural occurrences in life. Everyone experience it, from children to teenagers, up to adults. Unfortunately, meltdowns among elderlies are the hardest to handle. Mood swings among seniors often result from poor health, pain, stress, and dissatisfaction and loss of dignity which lead them to lash out against you and… (more…)
Donald Trump signs vets bill to keep veterans choice program afloat
President Trump on Saturday signed a bill that will pump funds into the Veterans choice program to keep it up and running, while Washington continues to fight over how best to give veterans the care they earned – but which the government has sometimes failed to deliver. Approved in the wake of the wait-list scandal that… (more…)
A new study found that opioid prescription use is more common in cancer survivors than in individuals without a history of cancer. This was true even among survivors who were ten or more years past their cancer diagnosis. Published early online in CANCER, a peer-reviewed journal of the American Cancer Society, the findings come at a time of rising rates of opioid overdose and addiction that experts have categorized as an epidemic.
Little is known about prescribing opioids to relieve pain in individuals who have survived cancer. To investigate, Rinku Sutradhar, PhD, a senior scientist at the Institute for Clinical Evaluative Sciences in Toronto and an associate professor with the University of Toronto in Canada, and her colleagues analyzed information dating back to 2010 on 8601 adults at least five years past a cancer diagnosis who were matched with 8601 individuals without a prior cancer diagnosis based on sex and calendar year of birth. Follow-up was stopped at any indication of cancer recurrence, second malignancy, or new cancer diagnosis. The researchers looked for opioid prescriptions filled at a pharmacy during the observation period for each individual.
The rate of opioid prescribing was 1.22 times higher among survivors than corresponding matched controls. Over a 36-month period, the average number of opioid prescriptions filled by survivors was 7.7, compared with 6.3 for controls. This increased rate of opioid prescribing was also seen among survivors who were 10 or more years past their cancer diagnosis. Individuals with lower income, and those who were younger, from rural neighborhoods, and with more comorbidities had significantly higher prescribing rates. Sex was not associated with prescribing rates.
“Our research findings raise concerns about the diagnosis and management of chronic pain problems among survivors stemming from their cancer diagnosis or treatment,” said Dr. Sutradhar. “Physicians providing primary care to cancer survivors should consider close examination of reasons for continued opioid use to differentiate chronic pain from dependency.”
Full Citation: “Cancer survivorship and opioid prescribing rates: a population-based matched cohort study among individuals with and without a prior history of cancer.” Rinku Sutradhar, Armend Lokku, and Lisa Barbera. CANCER; Published Online: August 7, 2017 (DOI: 10.1002/cncr.30839).
URL Upon Publication: http://doi.wiley.com/10.1002/cncr.30839
About the Journal
CANCER is a peer-reviewed publication of the American Cancer Society integrating scientific information from worldwide sources for all oncologic specialties. The objective of CANCER is to provide an interdisciplinary forum for the exchange of information among oncologic disciplines concerned with the etiology, course, and treatment of human cancer. CANCER is published on behalf of the American Cancer Society by Wiley and can be accessed online at http://wileyonlinelibrary.com/journal/cancer.
Follow us on Twitter @JournalCancer and Facebook https://www.facebook.com/ACSJournals
Wiley, a global company, helps people and organizations develop the skills and knowledge they need to succeed. Our online scientific, technical, medical, and scholarly journals, combined with our digital learning, assessment and certification solutions help universities, learned societies, businesses, governments and individuals increase the academic and professional impact of their work. For more than 200 years, we have delivered consistent performance to our stakeholders. The company’s website can be accessed at www.wiley.com.
Alzheimer’s disease now affects an estimated 5.5 million Americans, and after decades of feverish work, researchers have so far failed to find a treatment that halts or reverses the inexorable loss of memory, function and thinking ability that characterize this feared illness. But researchers have been quite successful at devising ways to diagnose Alzheimer’s earlier and… (more…)
Risk of heat-related health problems increases with age
With summer here and the temperatures rising, it is important to understand the health risks that excessive heat can bring and know the signs of heat-related illnesses. Older adults and people with chronic medical conditions are particularly susceptible to hyperthermia and other heat-related illnesses. The National Institute on Aging (NIA), part of the National Institutes of Health, offers advice to help combat the dangers of hot weather.
Heat stress, heat fatigue, heat syncope (sudden dizziness after exercising in the heat), heat cramps and heat exhaustion are all forms of hyperthermia. Hyperthermia is caused by a failure of the body’s heat-regulating mechanisms. The risk of hyperthermia can increase with the combination of higher temperatures, underlying general health, and individual lifestyle.
Lifestyle factors that can increase risk include not drinking enough fluids, living in housing without air conditioning, lack of mobility and access to transportation, overdressing, visiting overcrowded places and not understanding how to respond to hot weather conditions.
On hot and humid days, especially when an air pollution alert is in effect, older adults, particularly those with chronic medical conditions, should stay indoors in cooler places. If possible, people without air conditioners or fans should go to places that do have air conditioning, such as senior centers, shopping malls, movie theaters and libraries. Cooling centers, which may be set up by local public health agencies, religious groups and social service organizations in many communities, are another option.
There are many factors that can increase risk for hyperthermia, including:
- Alcohol use
- Reduced sweating caused by medications such as diuretics, sedatives, tranquilizers and certain heart and blood pressure drugs
- High blood pressure or other health conditions that require changes in diet. People on salt-restricted diets may be at increased risk; however, salt pills should not be used without first consulting a doctor.
- Use of multiple medications. It is important, however, to continue to take prescribed medication and discuss possible problems with a physician.
- Age-related changes to the skin such as poor blood circulation and inefficient sweat production
- Heart, lung and kidney diseases, as well as any illness that causes general weakness or fever
- Being substantially overweight or underweight
Heat stroke is a life-threatening form of hyperthermia. It occurs when the body is overwhelmed by heat and unable to control its temperature. Signs and symptoms of heat stroke include a significant increase in body temperature (generally above 104 degrees Fahrenheit), changes in mental status (like confusion or combativeness), strong rapid pulse, lack of sweating, dry flushed skin, feeling faint, staggering or coma. Emergency medical attention is critical for a person with heat stroke symptoms, especially an older adult.
If you suspect that someone is suffering from a heat-related illness:
- Call 911 if you suspect heat stroke.
- Get the person out of the heat and into a shady, air-conditioned or other cool place. Urge them to lie down.
- If the person can swallow safely, offer fluids such as water, fruit and vegetable juices, but not alcohol or caffeine.
- Apply a cold, wet cloth to the wrists, neck, armpits, and groin. These are places where blood passes close to the surface of the skin, and the cold cloths can help cool the blood.
- Encourage the individual to shower, bathe or sponge off with cool water if it is safe to do so.
States, territories, tribes, and tribal organization may be able to help eligible households pay for home cooling and heating costs. People interested in applying for assistance should contact their local or state social services agency.
The NIA’s AgePage on hyperthermia in English or in Spanish contains additional information and resources. It can be viewed online athttps://www.nia.nih.gov/health/publication/agepages. Free print copies of the AgePage are available through online ordering or by calling1-800-222-2225.
About the National Institute on Aging: The NIA leads the federal effort supporting and conducting research on aging and the medical, social, and behavioral issues of older people. The Institute’s broad scientific program seeks to understand the nature of aging and to extend the healthy, active years of life. For more information on research, health and aging, go to https://www.nia.nih.gov/.
About the National Institutes of Health (NIH): NIH, the nation’s medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments and cures for both common and rare diseases. For more information about NIH and its programs, visit https://www.nih.gov/.
For fifteen years I cared for him.
His accident was days after our engagement. My mother pulled me aside and said I could still walk away if I wanted. I knew it would be a hard road of nursing him back to health. No one knew if he’d recover or what recovery would mean. It meant putting my career on hold. Putting my family second. Putting my fiancee first in all things.
And I did. I stayed with him. For weeks in the hospital. For months of being home bound as he regained his strength.
I married a man who was still, we hoped, getting better. He has gotten stronger. Or perhaps simply better at adapting to his circumstances.
For fifteen years we lived like this. With me bearing the burden of responsibility for both of us in so many ways. With me still letting him be the man of the house. With me always putting my husband first.
I finally decided I couldn’t live like this anymore. With my identity all wrapped around his. Subsumed by his.
My nephews are in that phase where they’re obsessed with favorites. What’s my favorite food? Color? Hobby? Animal? I realized I didn’t know any of the answers for myself any more. But I knew them all for my husband.
I didn’t do anything dramatic. I decided to join the local gym and take a class once a week with some other ladies from church. To make sure we attended church together every week. To take a little time each week doing something for me, even if something else feels more important. That’s three or four hours a week for myself, after fifteen years of ignoring myself in favor of someone else.
He didn’t like it. He met someone new at church. I should have known something was wrong when he stopped trying to make excuses to not go. I was so excited when he stopped protesting, when he started getting ready on his own. I was thrilled to see people every week, feel connected to something. He felt connected to something else.
The thing is, part of me is thrilled. To be free, finally.
Sometimes the bitterness wells up in my throat. I gave so much to him and it was never enough. Does he even realize what I did for him? But I know it doesn’t matter. I know what I did. I know how much of myself I’m willing to give. And I know he would never do that for me.
It’s as if a weight has been lifted off of me. It has been, really. The weight of a man who I’ve supported all of these years.
Moving forward, I can finally support myself.
If you are caring for a loved one who is bed or chair-limited for most of their waking hours, this post is for you. You may be lucky enough to not have dealt with a bedsore (pressure ulcer) yet, or maybe you have. The most frustrating thing about bedsores is that their very presence is simply an accompaniment to another debilitating disease which has severely limited mobility or circulation in the first place. It’s like the double whammy you and your loved one never asked for.
Seemingly innocuous to start, bedsores can quickly spiral out of control, becoming deeper, more macerated, and infected. Proper aid and assistance from an attentive doctor, wound care specialist, and home health nurse is a must for tending to a stage 2+ bedsore. Is it possible to prevent pressure ulcers from forming in the first place, even if your loved one spends all day in bed? Absolutely. These strategies can help:
Get the right kind of mattress
If your loved one is “bed-ridden,” chances are they have a hospital bed in the home that mechanically raises up and down in which they can sleep, watch TV, eat, etc. If they are still sleeping on a regular bed and sitting up with pillows and other props, this tip is even more important.
Your average mattress is made of materials like foam, cotton batting, puffed-up polyester, and springs. Lying or sitting on the average mattress over time lets the bony points of the body add more and more pressure to internal tissues, causing breakdown and skin irritation. This is what leads to a bedsore.
Simple upgrades to your bed with memory foam toppers, gel padding, or an alternating pressure pad can completely transform blood circulation and weight distribution. A recent 2017 study looking at bedridden spinal cord surgical patients found that a whopping 82% of them developed sacral ulcers (on their bottom) when just a preventative wound dressing was used while only 36% did who were given a gel mattress to lie on. Depending on your health insurance and medical provider, an order can be written for a specialty mattress by your doctor and fulfilled by a medical equipment company; or you can look at a local bed/bedding store and online.
Use barrier cream
Did you know the start of a pressure ulcer can simply look like a reddish or dark discoloration on the skin? Recognizing the signs of the beginning of a bedsore and taking action right away can make a huge difference for the future of your loved one’s health. Barrier creams include a family of gels, creams, and ointments which can be applied to early pre-bedsore areas, healed bedsores, and closed stage 1 bedsores to treat and prevent further breakdown.
You can ask both a doctor or home health nurse about barrier creams they recommend or look online to see what other people have found successful – some popular choices include Corona Cream, EPC (Extra Protective Cream), and MediHoney. The goal is to provide a barrier between contaminants and moisture which can lead to skin irritation and breakdown – this is especially important for bed-limited folks who are incontinent.
While an alternating pressure pad or other specialty mattress can do some of the work of repositioning and disbursing your loved one’s weight while they spend time in bed, manual repositioning is just as important. With a couple thin to medium-width pills tucked up under your loved ones back and bottom, you can make sure their weight is shifted from side to side at least every 2 hours. This helps keep blood circulating and relieves pressure of bonier points of the body.
To some caregivers’ surprise, the heels can be a somewhat hidden place that bedsores develop, simply from feet lying and rubbing on the bed all day. Medical professionals encourage caregivers to “float the heels” of the people they care for by propping a pillow or rolled up blanket under the ankles to keep the heels from actually touching the bed. Johns Hopkins Medicine also shares that patients and caregivers should avoid using “donut” pillows to prevent pressure ulcers as they actually force more pressure from bones onto internal tissues, especially around the tailbone area.
Modify your loved one’s diet
Caregivers know what a challenge eating and diet can be when it comes to preparing food for your loved one and helping them eat. The disease or condition which impairs your loved one’s mobility may also impair their ability to eat or swallow, or cause them to take medicine that suppresses their appetite. When it comes to preventing bedsores, however, diet can be an important ingredient.
In addition to protein, vitamin C, zinc, calcium, and potassium aid the body in vascular circulation, strengthening skin, and tissue repair. Whole foods like broccoli, beets, citrus fruits, lean chicken, quinoa, nuts, and milk can help deliver some of these critical tissue-building vitamins and minerals. Supplements like Juven powder may alternatively aid the body with tissue repair as well.
Will doing all of these things 100% secure that your loved one never experiences a pressure ulcer ever? No, but they can make a huge difference and help you catch and seek treatment for a pressure ulcer far before it becomes health-threatening. Caregivers know knowledge is power when it comes to caring for someone – we hope this bedsore knowledge saves you and your loved one headaches (and pain) in the future.
Joe Fleming, Vive Health
Impacting roughly 5 million senior Americans, Alzheimer’s has made a name for itself in the elderly community. Little is understood about the cause of the disease and even less is known about the solution. What we do know is that it’s effects are heart-breaking.
Disrupting basic cognitive functions, altering personalities, and clouding memories, Alzheimer’s Disease is simply explained as the decline of the brain. It primarily affects the elderly age group, but it has a direct impact on the overall family lifestyle for all of those connected to a loved one diagnosed with the disease. It quickly becomes the family’s responsibility, specifically the spouse’s task, to care for the affected senior and a new set of challenges are presented almost daily as the family members learn their roles.
During an early stage of Alzheimer’s, the senior will typically need reminders to complete routine activities like eating regular meals, taking medication, managing hygiene tasks, and remembering names. As this stage progresses, the senior may struggle with incontinence as well as facial recognition. More severe stages of the disease may eventually require total care for all of their needs.
So what happens when a senior facing Alzheimer’s Disease experiences the loss of their spouse? With such a complicated and variant diagnosis, there is no specific instruction for how every situation should be managed. But there are a few tips that will ease the process for those left to care for their loved one in the spouse’s place.
Firstly, someone will need to share the news of the passing of the spouse with the senior. The news should be offered gracefully, and presented in a manageable format that lends itself to the stage of the seniors Alzheimer’s diagnosis. The family member or caregiver responsible with this undertaking should know which triggers to avoid, and should also consider having another family member with them in the case of an unexpected, negative reaction. Grief already yields so much pain, and to a senior battling illness the news will more than likely be overwhelming.
Emotional symptoms are at the forefront of the issue, as grief is already known for bringing a variety of emotions to the surface. But Alzheimer’s brings a few specific emotions that could be heightened during the mourning and adjustment period. Anxiety and stress are common emotions that could easily come from the confusion of missing their spouse or not recognizing a new caregiver. As for the caregiver, patience is key and they will need to find a way to share the daily responsibilities with other family members in order to relieve their own stresses and anxieties. Whether family member or hired caregiver, this person will be challenged with physical and mental oppositions.
Emotions can also quickly escalate to physical and behavioral reactions, especially where Alzheimer’s is concerned. Even without the added grief, physical aggression is common with Alzheimer’s patients. On any given day, the senior may be physically uncomfortable, experience medicinal side effects, or become overstimulated by their environments. A few tips for a caregiver to ease a rising outburst, include: conceding to an unnecessary argument, changing the topic, and speaking quietly instead of raising your voice. In emergency situations, calling for help may be necessary.
There is no doubt that the issue of Alzheimer’s and losing a spouse are two of the toughest battles a family can face. When both of these are combined, the road is even harder to walk. And yet, as the family of their beloved senior works out the difficulties associated with Alzheimer’s, they inadvertently provide an atmosphere of support that the senior really needs during their time of grief. As Alzheimer’s Disease affects your beloved senior during their time of loss, be the help they need most.
Author: Michael Longsdon (ElderFreedom.net)
Caring for someone suffering from Alzheimer’s is one of the most taxing for caregivers. To best look after your patient, you need to obtain as much knowledge about the disease as you possibly can. Even if you read every book out there, you’ll still be shocked with the unpredictable and sensitive nature of Alzheimer’s patients. In addition to their behavior, you’ll have to bear with their inability to communicate adequately and express how they feel, which makes the job even more difficult.
Here are some tips that can help you out
It’s tough watching the mental decline of a loved one but at some point, you’re going to need to accept that your loved one is now being affected by an irreversible condition – there is nothing you can do to bring themselves to their normal selves. What you CAN do is slow down the process and make these years as comfortable for them as possible.
Part of accepting that your loved one has Alzheimer’s is quit asking them the question “Do you remember?” They don’t – and it isn’t their fault. By forcing them to remember something that they can’t (because they are mentally incapable of it) will only cause further frustration.
Acceptance also means accepting that this person you are now looking after, isn’t the person you once knew. Again, it’s important to remind yourself that this mental deterioration is no fault of their own – they are helpless. There’s an element of loss that arises with Alzheimer’s, it puts family caregivers in an awkward place. On one hand you have to accept that your loved one isn’t the same but you have to remember that this IS the person you love, whether they remember it or not.
Connect with the patient
It may be easier to just let the patients be on their own because of how aggravating managing them can get but don’t let their anger outbursts intimidate you. Choosing to let the patient be alone with their confused thoughts will only lead them to isolation and eventually depression – both of which will worsen their condition.
You need to find ways of connecting with patients in a way that doesn’t stress them out. Try using meaningful items in their hands. Try placing a photo from a family vacation in their hands to see if they respond. Don’t ask anything at the beginning, see if the photo captures their interest. You may need to help them out a little by providing a few hints. If you don’t see them respond then move onto the next meaningful item. Don’t pressure them and don’t let the fact that they don’t remember weigh down on you.
Try communicating with your loved one through therapy. Alzheimer’s patients are unable to express themselves with words as their language abilities are one of the first to be affected by their disease. Look into pet, music and art therapy to get them to open up to and unleash some of what goes on in their minds.
Do not upset them
Can you imagine what it must feel like to just have remnants of your life and the people in it floating around in your head? Obviously, Alzheimer’s patients experience immense confusion and have a tough time trusting those around them. No one seems to understand what they are going through and they aren’t able to explain it. On top of that, people around them are always asking them to perform tasks which they aren’t usually able to do. Of course, they are going to be frustrated.
It’s important for caregivers to try and understand what Alzheimer’s patients are going through. You don’t need to understand it completely but you need to be able to empathize with them at the least.
Don’t make the situation worse in any way. This means that you need to avoid arguing with them because it will irritate them and force them to act out. You can’t win an argument with a person that isn’t going to make logical sense – so don’t bother, they won’t understand. It will cause them to become distrusting for you and can force them to become withdrawn.
Avoid bringing up topics that can upset them. If you do end up upsetting them unintentionally then be sure to distract them with something immediately.
Alzheimer’s patients get annoyed by a variety of triggers. These triggers can be the room being too noisy or the presence of someone they don’t like in the room. Identify these triggers and make sure the patient is as comfortable as can be.
Look after yourself
When looking after someone else, we tend to forget ourselves. Keep in mind that if you aren’t keeping your health in check then you won’t be able to look after your loved one. Caregiving requires a lot of patience and you’re going to need some down time every now and then to ensure that your physical and mental needs are being addressed.
Do take some time out to refresh your mind. Try taking up yoga and meditation to be able to block out any negativity that you may have building up in your mind and to enable you to go to your ‘quiet place’ when it’s needed.
Sherley Alaba is an eagle-eyed wordsmith; a writer and translator, always interested in ways which can help individuals (especially youth and women) reach their full creative potential. Her focus has been on writing, producing and editing stories on business, finance, interesting personalities, entrepreneurs, culture, the environment, gastronomy, lifestyle, and social issues.
Featured image via Pixabay
In a recent study, published in The Oncologist, just under 10% of patients diagnosed with terminal cancer did not know their prognosis and had no interest in finding out. This unwillingness to face a poor prognosis can lead to unnecessary treatments and prevent patients from making appropriate end of life (EOL) plans, causing their remaining time to be more stressful and traumatic that it need be.
“Healthcare professionals should appropriately assess patients’ readiness for prognostic information, and respect patients’ reluctance to confront their poor prognosis if they are not ready to know, but sensitively coach them to cultivate their accurate prognostic awareness,” says Siew Tzuh Tang, professor at Chang Gung University School of Nursing in Taiwan.
Tang led a team of researchers from Chang Gung University and Soochow University in Taiwan who questioned 247 terminal cancer patients on their knowledge of their condition and prognosis. They did this several times over the last six months of the patients’ lives, allowing them to track how the patients’ prognostic understanding progressed over time.
Based on the answers, they classified the patients’ awareness of their prognosis into one of four categories: unknown and not wanting to know; unknown but wanting to know; inaccurate awareness; and accurate awareness. Using a mathematical model, they also calculated how likely patients were to move between these categories.
At the start of the study, almost 60% of patients already had an accurate awareness of their prognosis, with 15% categorized as having inaccurate awareness, 17% as unknown but wanting to know and 8% as unknown and not wanting to know. Over the course of the study, patients’ awareness of their prognosis generally didn’t change, but what change there was tended to proceed in the direction of more understanding.
More troublingly, patients categorized as unknown and not wanting to know were least likely to progress to other awareness categories. As a consequence, while 82% of patients had progressed to an accurate awareness of their prognosis just before death, this meant 18% still did not have a complete understanding, of which 3.6% were in complete denial. These patients were thus unable to make sufficient preparations for their death.
According to Tang, their findings suggest that healthcare professionals should discuss prognosis with terminal cancer patients as soon as possible, to give them the maximum amount of time to come to terms with it. “Since terminally ill cancer patients need time to develop an accurate awareness of their prognosis, clinicians should begin early in the disease trajectory to cultivate patients’ accurate prognostic awareness by specific interventions tailored to their readiness for prognostic information in each distinct state of prognostic awareness,” she says
The study only questioned cancer patients in Taiwan, where the custom is to disclose the prognosis to family members rather than the patient and then allow the family members to choose how much to reveal. Nevertheless, Tang is confident that these findings will have relevance to cancer patients in many other countries.
“Physicians around the world commonly wait to discuss prognosis with terminally ill patients until they or their family members bring up the issue or when curative treatments are no longer available. Therefore, it is applicable to healthcare professionals around the world to follow the US national guidelines that physicians discuss prognostic information closer to patients’ diagnosis of advanced cancer, when they are cognitively competent to make informed and value-consistent decisions regarding their EOL care.”
Still, Tang says that similar studies should be conducted in other countries with different approaches to relaying prognosis information. She and her team are also planning to extend this research by evaluating the timing, depth and quality of actual patient-physician communication of prognostic information on EOL care.
“The study conducted by Tang et al provides quantitative evidence of variations in willingness to receive prognostic information,” commented Eduardo Bruera at MD Anderson Cancer Center in Houston, US, who is a section editor of The Oncologist and was not involved in the research. “This study highlights the complexity and the need to personalize communication with patients and families with cancer. More research is badly needed in this area.”
Courtesy of Wiley
About The Oncologist
Now celebrating its 22nd edition, this internationally peer-reviewed journal focuses on clear and concise interpretation addressing the multimodality diagnosis, treatment and quality of life of the cancer patient. Each issue is meant to impact the practice of oncology and to facilitate significant communication in the introduction of new medical treatments and technologies. The Oncologist is the official journal of the Society for Translational Oncology (STO).
About AlphaMed Press
Established in 1983, AlphaMed Press, which has offices in Durham, NC, San Francisco, CA, and Belfast, Northern Ireland, is the publisher of three internationally renowned peer-reviewed journals. The Oncologist® (www.TheOncologist.com), which is entering its 20th year, is devoted to community and hospital-based oncologists and physicians entrusted with cancer patient care. STEM CELLS® (www.StemCells.com), celebrating its 35th year, is the world’s first journal devoted to this fast paced field of research. STEM CELLS Translational Medicine® (www.StemCellsTM.com), currently in its sixth year, is dedicated to significantly advancing the clinical utilization of stem cell molecular and cellular biology.
Wiley, a global company, helps people and organizations develop the skills and knowledge they need to succeed. Our online scientific, technical, medical and scholarly journals, combined with our digital learning, assessment and certification solutions, help universities, learned societies, businesses, governments and individuals increase the academic and professional impact of their work. For more than 200 years, we have delivered consistent performance to our stakeholders. The company’s website can be accessed at www.wiley.com.
Full citation: “Transitions in Prognostic Awareness Among Terminally Ill Cancer Patients in Their Last 6 Months of Life Examined by multi-state Markov Modeling.” Chen Hsiu Chen, Fur-Hsing Wen, Ming-Mo Hou, Chia-Hsun Hsieh, Wen-Chi Chou, Jen-Shi Chou, Wen-Cheng Chang and Siew Tzuh Tang. The Oncologist. Published Online: July 06, 2017, DOI: 10.1634/theoncologist.2017-0068.
The number of people with Alzheimer’s disease in the U.S. is expected to nearly triple over the next 30 years according to the Alzheimer’s Association. As the need for caregivers grows, younger family members are finding themselves in a role for which they often are ill-prepared to handle. So experts at UCLA Health developed the Alzheimer’s Caregiver Boot camp to prepare them for the challenges of the progressive disease.
“Alzheimer’s caregiving is a full-time job because there are always risks present at any time of the day or night. They have to be vigilant to prevent things like wandering or falling, while helping with everyday tasks like dressing a patient and preparing meals,” said Dr. Zaldy Tan, Medical Director of the UCLA Alzheimer’s and Dementia Care Program. “This responsibility can be emotionally and physically taxing, so the goal of the boot camp is to give them the best tools to manage their role.”
Dr. Tan says participants in the boot camp are becoming more diverse as more families share the burden of caregiving. One in four caregivers is now under the age of 34, and the number of male caregivers rose six percent in just six years. The boot camp can help ensure that everyone who contributes is confident in their ability to keep their loved one safe and comfortable. “We are all potential caregivers,” said Tan. “Therefore, we should all be prepared to step into that role if and when we’re called upon to do so.”
To reinforce what they’ve learned, boot camp participants finish their day working with professional actors who are trained to react as someone with advanced Alzheimer’s disease. They role-play common scenarios and use different techniques to deal with difficult situations, such as a patient becoming confused or agitated.
“A lot of caregivers are unsure about the skills that they have acquired throughout the day. But once they are able to act out these scenarios, they find that they have not only learned these techniques, but they’re actually able to apply them,” said Tan. “Interacting with an actor who behaves as a dementia patient allows them put their skills into practice before they are faced with having to use them at home.”
Featured image: Bucky Schmidt (left) and Cyndi Ramirez (right) share the task of caring for their wife and mother, who suffers with dementia. Both are more confident in their ability to care for her after attending UCLA Health’s Alzheimer’s Caregiver Boot Camp.
Text and images courtesy of UCLA Health.
I can see my father in vibrant colors. He’s got snow white hair, earthy brown skin, and a speck of light reflecting off one of the lenses of his eyeglasses. Behind it is a tiny sparkle in his eye. Except that it’s an artificial sparkle. Years ago, in his 40s, his eyesight deteriorated and he had an implant surgically placed in his eye. He’s an old man. One who still likes to cook, and who is a hero to his grandsons: My 2 sons. He’s taught them everything that he knows. They can retell all of his stories from his Air Force days, and they can imitate his heavy bristly voice. He pretends that it annoys him, but secretly he’s entertained. That’s how I imagine it would be.
My father died almost 3 months ago after a long term chronic illness. He just missed his 60th birthday. My children are too young to understand what’s happened. My 3 year old knows that something has changed in our family dynamic, but he cannot articulate what it is. In his brief but wonderful life, he’s only ever known his grandfather to be sickly, either bedridden or planted in the living room or kitchen. For a long time my father was upset because his first grandson cried when he tried to hold him, or wouldn’t go to him once he began to walk. He was crabby about it. He wasn’t the type to take rejection well. So he did the only thing he could do to get the child’s attention: he offered him snacks. They spent their time together seated across from each other at the kitchen table, eating cheese crackers and applesauce, and whatever else he had that week.
The evening before my father passed away, I ran home to tend to both of my children before returning to the nursing home where he lay dying. I was in a quiet frenzy to make sure that the evening routines were kept. Dinner, baths, bedtime story, prayers. My son found every reason to run through the kitchen noisily, disturbing every object in his path, until I realized that my husband and I had been too quiet that evening. Intuition had told my child that something was wrong, but being just shy of 3 years old, he didn’t know to ask the question, “what’s going on?” I looked him in the eyes and explained to him that his grandfather was very sick and in a hospital, and that we needed to take care of him. He looked up at me and immediately I saw in his eyes that he understood, not about dying necessarily, but that something was changing. As recently as this week, he’s asked about his grandfather. But no sooner than he asks does he catch himself and confidently say in his well rehearsed best grown up tone, “Paw Paw’s in heaven!” He knows his grandfather is gone. When we visit my mother, I sit where my father used to sit in the kitchen, across from my son, and we eat snacks.
When you love someone, you have dreams for them even though you don’t realize it. And when a caregiving journey begins, particularly for someone with a long term or incurable illness, those dreams die. And you can experience a very real sense of grief and mourning, even though the person is still alive. You mourn the imagined life, the one in which things take a “natural” course and allow you to plan our your life. You mourn the loss of that person’s contributions to the family, whether it be a special recipe, or wise counsel, or them simply being the backbone of the family unit. You’re forced to let go of how things are supposed to be, and live for the moment. You constantly think about them dying. On the difficult days, you may even ask yourself if dying would be the best thing for them. You don’t want to be without them, but you can’t stand to see them living without quality of life. You mourn the loss of parts of your own life.
My grieving process didn’t begin the night my father died. It began years ago with one hospital admission that changed the course of the lives of my entire family. I grieved for my myself, being an only child without a father. Even though I’m an adult, that still is a painful thing. Maybe adult children don’t say it enough, but we still need our parents. We need their help to navigate adulthood and even to save our asses every now and then. My father was very ill but I always knew where to find him. He was a constant in my world of otherwise fluctuating circumstances. I didn’t want to ask for his help, but if I needed it, I knew where to find him at any time of the day. Now that he’s gone, I’m hyper vigilant. The world feels less safe, less worthy of my trust. Parents are our first protectors, and when they do their jobs right, you’ll find a large void in your universe when they’re gone. I regret not being able to save him. Of course I know that it’s not my fault. But blame finds it’s way into the worst of situations.
This has been a difficult month for my family. My father has a birthday in June, and then Father’s Day was last Sunday. I called my grandfather, my father’s father, and talked to him for a little while. Since my father died, I see my grandfather as the prototype. He is the snowy haired old man that my father did not age to be. I hear my father’s voice in his. They both are great story tellers and always end with a lesson or punchline. I can see my father’s roots in my grandfather’s smile. And I can see his life in mine and in both of my sons. My youngest child, just 7 months old, looks a lot like a man who he will never know in person.
Life doesn’t always turn out the way that we imagine it will, and when it doesn’t, we will be sad, and we will feel the loss deeply within our souls. Mourning isn’t something sad that happens suddenly and concludes. It’s a steep mountain to climb. A large part of being able to cope with being a caregiver is to know that mourning the imagined life is natural. You cannot move forward or make sound decisions until you deal with the fact that your dreams for that person have died. The light is that new dreams can always be constructed. All hope isn’t lost. But we have to let go in order to move into the next phase of our journey.
By D. Southern
D. Southern is a freelance writer and the creator of Caregivers’ Village
The Art of losing isn’t hard to master, so many things seem filled with the intent to be lost that their loss is no disaster.
Lose something every day. Accept the fluster of lost door keys, an hour badly spent. The art of losing isn’t hard to master. Then practice losing farther, losing faster: places, names, and where it was you meant to travel. None of these will bring disaster.
I lost my mother’s watch, and look! My last, or next-to-last of three loved houses went. The art of losing isn’t hard to master.
I lost two cities, lovely ones. And vaster, some realms I owned, two rivers, a continent. I miss them, but it wasn’t a disaster.
Even losing you (the joking voice a gesture I love) I shan’t have lied. It’s evident the art of losing’s not too hard to master. Though it may look like (write it!) like disaster.
As far back as I care to recall presently, I have been ‘lil girl, to grandmama at least. “Say your prayers ‘lil girl,” “Wash dem dishes lil girl, I don’t aim to play housekeeper all day.”
I was ‘lil girl before I began straightening the curly afro I sported in Elementary School. I was ‘lil girl when I discovered ‘lil boys who possessed parts that could replace my magical fingers. And, as you might have surmised, I am two and a half degrees later, still ‘lil girl.
I am not unique in this. That is, this is no pet name. It is not a name that is exclusive to me. All of my male cousins are ‘lil boy. Similarly, all of my female cousins are ‘lil girl. It is an ongoing joke between the lot of us, at least it was, until it wasn’t.
Yes, it was quite hysterical until we realized what it was. Grandma was only 76 years old when they brought her home. They- two patrons of Walmart who’d found her wondering around the parking lot, alone.
“But where is her car?” My mother asked, holding the front door ajar, clinging to it, to reality, normality.
“Why it must still be there,” the gentleman answered, “when we found her she only said she couldn’t remember where she was going. My wife,” he gestured towards the woman holding onto grandma’s arm, “asked for her ID and we, well, we thought it best to just get her home straightaway. “
“Yes, of course.” My mother forgot her shock and remembered her manners.
“My father had Alzheimer’s too” the woman whispered, with a wink.
My mother looked stunned. This, Alzheimer’s, hadn’t occurred to her. Grandma had been forgetting for years, but we all forgot, every now and then.
“Never mind what we thought.” The husband stuttered. Silencing his wife.
“Why yes,” The woman smiled at grandma. Patted her hand and relinquished her arm, “you just get yourself inside and get some rest.
Grandma walked obliviously through the door that was still holding onto Mama. Ma mouthed a “thank you” to the strangers, but stood in place.
I remember driving grandma’s car home from Walmart later that day, an old Mercedes Benz her deceased son bought her brand new over a decade ago. The car was one of her few cherished possessions, never mind how old it was now. She was a simple country girl, and 5 kids and countless years later, it made her feel as though she’d finally arrived.
Never mind how her son attained the car, or the dismal fact that the same streets that carried him would slurp him up and bury him in the cement. Be that as it was, she’d arrived. She’d finally arrived.
She’d bought hats in every color with the Mercedes Benz emblem imprinted boldly on them and she wore them over a crooked wig. Wore them to church to pray for her wayward son and wore them to the bank to deposit the checks his sins brought her.
A generation later, she would present one of the hats to my younger brother when he purchased his first car with stained money, it was a newer but similarly colored Mercedes Benz.
“Which one you want” she asked?
“Whichever grandma,” he answered with a chuckle as he tried on the black, white, and red hats, one after the other. “Well, if you really don’t mind, I think I like the red one best” he smiled.
“The red one then,” she laughed as she collected her remaining hats, the remnants of her youngest son, and tipped away with them slowly.
Grandma lives with my parents now, and every day she forgets. The loss of names seems trivial now, she’s lost larger things. She forgets to eat, to shower, and why she can’t drive that old Benz parked out in the grass beside our home. Even larger still, her siblings are dropping one by one, and she forgets them too.
“This says John Henry Ivory II” she reads the emboldened letters she’s memorized loudly. “Sunset: January twenty-fours,” she adds an s onto the number four and glares at it suspiciously. Then, “come read this ‘lil girl.”
I read her brother’s obituary aloud.
“Born in Fort Valley, Georgia.” She shakes her head at my recitation. “He was one of thirteen.” She nods affirmatively. “A farmer and a carpenter.” She nods slower this time. Leans back in the leather/cowhide chair that looks much too large for her. Stretches her right leg all the way out so that the joints in her knee can breathe.
“So how many left? Me, Ethel, Mary” she counts off her remaining siblings, one finger at a time.
I stop her. “Mary passed a few years back actually, Mary and Dot.”
“Dot,” she chuckles, “Dot prayed to pass. She didn’t wanna live past 80. Didn’t wanna smell ole age and suffer’in. Dot been pray’in that prayer for years, and God took her right in.” Grandma smiles.
As the story actually goes, Dot prayed to live at least until she was 80 after watching both of her parents die young- her mother to cancer, her father to himself. Grandma always tells the story this way, however, and these days it seems fair to let her tell it however she’d like.
“I’m not going to ask God to take me. I’m not ready for that. I wanna leave when God wants me to leave, and I might not be ready then.”
We laugh for a bit and by default circle around the deaths we’ve witnessed in our backwards family.
“You know how daddy died?”
“Drowned himself, in a bucket.” This too is wrong. Her father hung himself.
“I think you have that wrong,” I suggest softly. She shakes her head in dissent. Recalls his legs shaking on both sides of the bucket, “like an animal.”
I persist in trying to make her memory logical, “did he tie something around his neck first, perhaps?”
She gets up and limps to the kitchen. “You just stay right there, “she calls. She walks and her one bad knee follows as she scavenges the kitchen looking for an exemplar. She settles for a ceramic vase that is much too thin to house a human head.
She stands before me with the vase. “Now you don’t believe me.” She looks forlorn. “Dot could’ve told you,” she snaps. I smile, disheartened, we both know the trouble is Dot is gone. Long gone, gone like a runaway slave trekking north for freedoms he may or may not receive.
I think about Dot, John Henry the first and second, and my dearest grandmother, Essie Maude Harris. And I prayDot’s prayer for her. It felt like sorcery, it felt like empathy.
As I say the prayer, I know it will not save her, just as her prayers did not save those before her, but it feels right to say it anyway. It feels right that she should go dignified, like Dot, not kicking and screaming like her father, John Henry I, legs flailing “like an animal.”
The truth is she’s already kicking and screaming, in her own way.
“Stop, shhh” she insists. We stop our correspondence at once. It seems urgent.
“The baby is sleeping” she whispers, pushing her open palms down against the empty air as if to suppress the vibrations of our voices.
“What baby?” My mother asks.
Tipsy from our eggnog, we cackle at the question. We don’t have any babies, no babies live here.
“Now you know,” grandma throws both her hands up in the air in frustration; she’s through with us. My mother is the first to realize that in grandma’s mind, today, there is a baby. Ma strikes a deafening look in our direction and we hush up directly. Today, there is a baby.
Ma follows grandma on soft heels. Peeks her head into grandma’s bedroom. I peek over her shoulder. We don’t see much; just a cluttered room, a bed with stuffed blankets and TBN blasting from the television set.
Ma tiptoes over to the bed. Grandma’s chest rises and falls next to Ma’s lifeless wooden nutcracker. The two are wrapped tight underneath grandma’s quilt.
Today, grandma sees a baby, grandma hears a baby, we have a baby.
Sometimes our baby gets out of hand. This past Thanksgiving, we learned that Alzheimer’s often leads to paranoia. The thoughts in our baby’s head get all jumbled up and she loses sight of reality.
She’s starting to see things that don’t exist. There are men watching her in her bedroom, and she must escape them, but not without herself.
She grabs and relocates the things that remind her the most of herself; expensive jewels she inherited when she was a registered nurse to wealthy white people on Star Island, fancy church hats that were a little too nice to ever actually be worn.
We watch in disbelief. She ignores us until, “Grandma, come have a coke with me” I suggest. I pour her a can of coke. I pour the soda into a glass already filled with a shot of Jack. I don’t listen as I cut her a slice of store bought pie, but I know she is declaring her love for coke. An adoration that stems from her childhood when, “daddy used to us home colas from work.”
She sits at the dining room table and nibbles on the pie. Sips the coke contentedly. When she starts to scrunch up her face, I pour more coke into her glass. That settles it, softens the secret ingredient. She drinks happily, though she has never had a drink in her life. We come from a long line of Christians who serve apple cider as champagne, even at weddings.
“I used to make pies like this,” she says.
I tell her I remember. I don’t remind her that that was just last year, she’s only recently forgotten how to cook.
I pat her hand, “you used to make pies way better than this.”
Sometimes our baby is sweet as pie. I facetimed her from Orlando a little while ago. The concept of cellphones is entirely lost on her. She smashes numbers into the confounding device, holds it upside down, tilts her head to get a good look at me. Today, she doesn’t recognize me.
“Who’s this ‘lil girl?” She asks my mother who’s stumping around the kitchen throwing supper together. Ma doesn’t answer straight away.
I smile into the device, “it’s me grandma.”
“That’s Tiffy,” Ma yells from the kitchen. Grandma misses this, shrugs, “well, whoever she is, she really is a beautiful girl. Ain’t she Tracie?” She sits the obscure device down and wonders after my mother’s voice. Leaving me and the confounding device behind.
Sometimes our baby is rather wicked. My father recently purchased a parrot. The bird speaks Spanish, we speak English. He says “good morning” and “what cha doing” too loud while we are either still sleeping or too groggy to be proud of his expanding vocabulary. When we wake, we open his cage and he walks around on four frail toes as if he doesn’t even know flying is an option. His wings were clipped for so long, he doesn’t know they’ve grown back. He won’t bother to try them out. Grandma tiptoes around him, petrified.
When we put him back behind bars, she’s content, happy. She is bigger, stronger, and she wants him to know it. She pokes a spatula through the bars, taunts him with a smirk. I stop her and she laughs hysterically. “I beat him down earlier,” she tells me, “he took it though, like a lamb.”
My temper threatens to escape me, but instead of a harsh admonishment, tears come. “You can’t do that grandma,” I whisper.
She is still smirking at the caged bird. “I’m not a bad person,” she says, and I don’t know if she is speaking to me, the bird, or herself. But no, she is not a bad person.
The morning after is always difficult. Filled a combination of repressed rage and guilt. She walks into the living room where I am still lying on the sofa. Grandma moved into my room when I moved out, so I spend my vacations sleeping next to the bird on a sofa in the living room. I don’t mind, much.
“Morn’in ‘lil girl” She greets me sincerely.
My answers are short, my tone clipped. “Morning” I whisper back being cautious; careful not to make eye contact, lest she think we’re companions and take up the empty cowhide chair sitting across from me and my feathered friend.
“How’d ya sleep?” She’s trying to make small talk. She’s forgotten what she’d done, why I am angry with her. I, however, have the gift of remembering.
“Fine,” I mumble.
She tips over to the chair, unpeeling a brown banana. “What cha writing?”
I sigh, “a story.”
As she walks past, I am aware that she soiled herself in her sleep. I scrunch up my nose. Somehow this makes it easier to hate her.
“What’s your story about?”
“Nothing,” I reply as I close my notebook. And I suppose I too am a bit wicked. I could say I am regretfully wicked, and I am, but I doubt that changes things. Wicked, is, well wicked.
I pray Dot’s prayer for her, again. But this time, it isn’t for her really, this time I pray it for me, for us. I come from a long line of cowardly Christians, that is, people who ask Jesus to fix their problems in lieu of rectifying them themselves. So, I pay Dot’s prayer for my mother who is working nights to avoid having to fight with grandma about taking showers or hiding soiled pants. I pray Dot’s prayer for my father who is raising my mom’s mother while Ma’s avoiding her at work. I pray Dot’s prayer for me, so I can keep my mom and dad home, together, in love, together, as it has always been.
I pray Dot’s prayer as a clueless child would, but I am not clueless, nor am I a child, so I am not exactly sure what that makes me.
The morning after is always difficult. Filled with a combination of repressed rage and guilt.
I think of the God I used to know. I think of the baggage grandma has carried; a widower with five children, no formal education, no established relations- a homemaker for a mother and a father who murdered himself. The ceremonies she planned for the two children she buried. The two sons she has left fighting my mother for control of her estate, for what remains of her.
I think of the God she made me pray to as a little girl, and I imagine him bigger, stronger, prodding her feeble body with a stick. I wonder how it must feel to her, but mostly to him. If he swells with pride as she calls out to him, “the one who gives, and takes away.”
Grandma walks over towards the sofa. My mother suggests she kick her heels up in the leather chair across from the sofa instead. Tells her the chair sits up taller and thereby will be easier for her to maneuver her way out of later. The truth is, the sofa is fabric and the chair is leather. These days, grandma wets herself often and the leather chair is easier for Ma to clean.
I am visiting again. I have brought with me an old teddy bear my boyfriend gave me when we first began dating. He sprays the bear with his cologne and I carry the stuffed toy with me when I am away. The bear is sitting in the leather chair. Grandma picks him up and sits him on her knee.
“You take him with you everywhere you go?”
“Not everywhere,” I smile.
“What do you feed him?”
“He’s just a toy, grandma. I don’t feed him anything.”
She nods in consent, but continues bouncing the bear up and down on her knee. When I look up from my laptop, I see her whispering baby talk to the stuffed bear. Today, grandma sees a baby, grandma hears a baby, we have a baby.
Sometimes our baby wants to be an adult. This Saturday morning, our baby has decided that she wants to make her own breakfast. We’re proud, elated as we watch her limp around the kitchen. She must be feeling like old herself again.
I watch her rather intently, then I worry that she may feel my gaze on her. I turn my head and glance at her periodically through the corners of my eyes. Just yesterday, she retrieved an old candle from the trash and tried to microwave it as a snack. I am cautious, lest she make another blunder.
We worry that she may burn the house down, so my father shuts off the breakers when he is away. It never occurred to us that ostracizing her from typical daily functions would assist her mind in breaking itself down faster. She grabs the eggs from the refrigerator, then a pot.
“What kind of eggs are you making, grandma?”
“Scrambled,” she says.
I suggest the skillet that’s in the dishwasher instead of the pot. She thanks me and grabs the skillet. Sets it down on the stove.
We resume our correspondence momentarily. Mom is the first to realize that grandma’s disappeared. She saunters down the hall after her.
“What happened Mommy? I thought you were making yourself some eggs?”
“Well, I was gunna but then I figured I’d probably mess ‘em up. So, I left it alone.”
My mother pauses. “Well there’s nothing wrong with trying. You almost had it.” Mom walks back to the kitchen and makes our baby scrambled eggs, grits, and toast saturated in apricot jam.
In so many ways, we have failed, and continue to fail, our baby. There is something unnatural about begging your superior to shower, so we don’t. Yet, we stay far, far away from her when she doesn’t. We limit our visitors because we don’t know what kind of day she will have on any given day. I am not sure if we do this for her or for ourselves. We down play her mental ailments. Again, I am not sure if the shame is hers or ours.
It is difficult to process and deal with mental illness when you are an African American and a Christian. I only recently learned that grandma had a mental break in her early thirties, a hiccup that my mother dutifully kept secret from me and the remainder of our family. I too have suffered from metal complications: anxiety, depression, and the like. I recall revealing to my mother my obsession with self-harm when I was a teenager. I recall her telling me to pray more. To pray whenever I got the urge to slice razor blades into my flesh.
My mother is not the villain here. As an African American, mental illness is a weakness. A folly that befalls only those who are not strong enough to stare down their own demons. As a Christian, we are to believe that God will redeem us and save us from even the darkest parts of ourselves, so we kneel and we pray harder. Then, we wait. Some of us are still waiting.
There are two halves of my grandma. The half I knew and the half I know. The halve I knew, loved church. Not just on Sundays for a few hours in the morning. I am talking full blown, screaming and shouting, hooting and hollering from the noon to night, from dusk to dawn. Pentecostal church. The grandma I know, loves TBN, church tv. My new grandma loves her bed. She leaves it sparingly, mostly just for food. She and her food lie in her bulky Victorian bed and watch TBN from morning to noon, noon to night, dusk to dawn. Sometimes I try to convince her to leave the bed, to walk to the church next door with me. I hate church, but it is the one thing the grandma I knew loved. The grandma I know is always promising me tomorrow. She’ll go tomorrow. We’ll go tomorrow.
I wish so many things for grandma. Practical things that I fear are already beyond her reach. I wish the sun could shine on her. I wish she would lie in the wet sand on her flabby back and bask in the Florida heat. I wish she would imprint herself in the sand and stand in the ocean. It has only just occurred to me that I have never seen her at the beach.
I have seen her at church, at home. I thought I’d known her. We have traveled to family reunions, stood in the sun at funerals. I wonder if the halve I knew is even less than that, if perhaps it is only the halve I thought I knew. Because there must be something more to a person than family and faith. That cannot be the whole of a person, any person, can it? I fear the halve I knew is the only halve she ever knew. I fear she will die only knowing that small, tiny person.
Tiffany Knowles is a doctoral student at Murray State University. Tiffany studied creative writing at the University of Tampa and English Literature at Flagler College. She currently teaches Developmental English at Barry University. Tiffany resides in Florida where she assists in providing care to her grandmother who’s battling Alzheimers and Dementia.
What does it feel like to be me?
The first word to come to mind is “full”. Frustrated is a close second. My 91yr. old mother has lived with me for six years. Her dementia has stolen her reasoning, memory, logic and ability to track what I’m saying. Some have told me that “caregiving” is my identity.
I don’t want it to be. I want it to be what I do and not be so encased in who I am.
What does it feel like to be me?
Sad a lot of the time as I get covered in anticipatory grief. The grief ebbs and flows in phases and I’m just now realizing that those phases will pass. I know life will have challenges and struggles but I can choose whether to be miserable or not.
What helps is focusing on the moments of joy I have with my mother today or in a brief moment. Those moments will be kind to me after she’s gone and bring me solace.
What does it feel like to be me?
Tired. Mentally, physically exhausted. I try to make time to do what refreshes and restores me, like gardening and going to church, lunch with friends, a massage, the gym, weekend away with my husband and the kids. It’s difficult when I’m so fatigued but once I push myself to do it, I always feel better.
What does it feel like to be me?
Lonely. Even when I’m not alone. Few people in my life truly understand what the experience of caregiving is. Friends ask how my mom is doing but rarely ask how I’M doing. And there are those times when I, too, get tired of hearing my own voice expressing my frustrations and irritations. Sometimes the loneliness is a loss of connection with myself. I’m an introvert and it is vital that I have time alone to reconnect with myself, my thoughts, to process what’s happened or be distracted from the chaos and unpredictability of it all. Those days to reconnect with myself are far and few between.
What does it feel like to be me?
Grateful. At the most challenging time in my life (caregiving for my mom) I experienced the greatest blessing in my life–I met and married my husband. My mom’s friend will take her for a few days to give me a break and I’m so thankful to her for that. I”m grateful for having good health to be able to continue caring for my mom. I’m still practicing acceptance for this struggle and pray for patience and stamina. This experience has brought me back to a connection with God and I don’t think anyone could be a caregiver without a connection to some higher power.
As aging parents creep past retirement age and into their 70s and 80s, adult children are faced with the same conundrum: how can they enable their mothers and fathers to stay in their homes longer, rather than send their loved one to a retirement home or similar facility?
According to the AARP, 30 million households provide care for an adult over the age of 50, and that number is expected to double by 2040. Failing to plan ahead now could cost tens or even hundreds of thousands of dollars, not to mention precious time, comfort, and dignity. Take the following tips to heart so you can create a caregiving strategy for your loved ones that will keep them living how they want for as long as possible.
No one wants to have the care discussion with their parents, many of whom want to maintain their independence. Nonetheless, in order to avoid costly, embarrassing, and potentially fatal consequences, this necessary conversation must begin with honesty and compassion.
Effective caregiving plans include family members, close family friends, and other loved ones; they also designate a single “team leader” or point person who facilitates discussions and keeps communication forthcoming. Remember not to make any decision unilaterally. Apart from creating negative emotions, legal consequences may follow if the parent disputes the child’s action.
You may want to consider hiring someone to help with this planning. A geriatric care manager can assist your family with this.
Make a List, Check It Twice
Create checklists for personal information, home maintenance, health, finances, and transportation. These checklists should include all essential information, any necessary phone numbers, the location of documents or other important paperwork, and a division of labor. Allow multiple people — including your parents themselves — to divvy responsibilities where appropriate to ensure that no one person feels the full burden of caregiving.
On the topic of lists, good protocol calls for creating what’s known as a Vial of L.I.F.E. (Lifesaving Information for Emergencies) checklist. Be sure it includes hospital preferences, allergies, medical conditions, insurance information, and emergency contacts. This list can prove essential information in critical situations if the parent cannot respond or otherwise provide the necessary details.
There are organizations available to handle questions about elder care, such as the AARP, or your local government. The Eldercare Locator can provide a variety of services in your neighborhood, and the official Medicare website will inform on free or reduced-cost healthcare offerings.
Should you choose to hire an in-home care provider, there are additional things you want to consider to make sure your loved one is best cared for.
The Power Is Yours
One of the most important and immediate tasks to complete when planning your loved one’s transition plan is designating a power of attorney and arranging for decision-making processes to occur in the event of incapacity.
The documents that must be created are the Durable Power of Attorney for Health Care — which you probably know as a “living will” — as well as a Physician’s Order for Life-Sustaining Treatment (POLST), the Durable Power of Attorney for Asset Management (or Finance), and the will itself.
- The powers of attorney provide for a trusted person like a child to make legal and health care decisions for a loved one who is physically unable.
- The POLST replaces a Do Not Resuscitate directive and allows individuals to decide whether or not emergency responders and other medical professionals should provide certain treatments.
- A will establishes how one’s assets and estate will be distributed. It’s quite possible your loved one already has a will in place.
Many families will also want to create a living trust, which places the control of an estate’s assets with a legal entity. Both of these allow for assets to bypass legal probate, which can be a lengthy and stressful process.
Make Use of Technology
Technology has made it easier for families to anticipate and ameliorate concerns for elderly family members. Try utilizing these techniques to provide convenient care for your loved one.
1. Home Delivery
Amazon Prime or similar home delivery services are fantastic ways to ensure that household goods never run out. Paper products, incontinence products, hygiene items and toiletries, cleaning supplies, and even some dry goods can be delivered right to the doorstep in just a day or two. A “wish list” can be created to provide a handy source for the necessary items, and family members can order off the list and pay directly, circumventing any complicating factors.
2. A Pre-Paid and Pre-Programmed Phone
Gone are the days of leafing through books filled with chicken scratch handwriting, trying to find the right phone number. Buy an inexpensive phone and pre-program essential phone numbers with simple, easy-to-understand labels. For example, emergency services, doctors, family members, and neighbors can be programmed, saving valuable time in a critical situation. Keep it simple so you can teach your loved one how to operate the device.
3. Keep Pills on Lockdown
Many senior citizens take multiple pills a day, and forgetting dosages or mixing medicines can be a fatal hazard to the elderly. Even though most pill containers are labeled, aging parents become easily confused; these containers are also unsafe for visiting children. Buying an automatic, lockable pill dispenser means medicines are tamper-proof and only accessible when needed. Many of these also alert the parent (or caregiver) when pills are running low to make re-ordering easier.
4. Keep Information Managed and Centralized
Google Drive has an assortment of invaluable, accessible, and free tools to organize, manage, and share important materials within a family. Living wills, power of attorney documents, medication lists, pharmacy prescriptions, home security system passwords, and other important lists and information can be accessed by multiple family members. Google has downloadable apps that allow this data to be retrieved on mobile phones, convenient for trips to the pharmacy, doctor, or attorney.
A caregiver is essential for handling much of the mail delivered to the home of an elderly family member. The generation going through these life changes often relies on physical mail, instead of email, but may find it increasingly difficult to organize all they receive. Designate someone to sort important bills and other financially important items from the catalogs, magazines, and junk mail received on a daily basis. Another option is to have the important mail, such as information from banks and brokerage accounts, forwarded to the physical address of a trusted family member or power of attorney.
One out of three people over the age of 65 will experience a fall, which is the leading cause of serious injury among seniors. Purchase a monitoring system that has a medical alert button can be invaluable. It will alert emergency responders in the event of a major fall or other injury. Some come with buttons that can be worn on the body for easy accessibility, and others offer two-way communication to keep the fallen person on the line while medical assistance arrives. Consider also purchasing grab bars and benches in potentially hazardous areas, like bathrooms, foyers, and steps.
And finally, seniors with dementia are prone to wandering off. If this is a concern you have for your loved one, consider purchasing an inexpensive door chime to ring when the front door is opened. This will alert others in the house before he or she can get very far.
What steps can you take this week to create a caregiving plan for your parents? Let us know in the comments section.
Kathleen Webb co-founded HomeWork Solutions in 1993 to provide payroll and tax services to families employing household workers. Kathy has extensive experience preparing ‘nanny tax’ payroll taxes. She is the author of numerous articles on this topic and has been featured in the Wall Street Journal, Kiplinger’s Personal Finance, and the Congressional Quarterly. She also consulted with Senate staffers in the drafting of the 1994 Nanny Tax Law.
When my boyfriend came out to his family, his father attacked him. That was nearly 20 years ago now.
For a long time he’d make attempts to get in contact with his siblings or his mother every couple years. They never went well. They were only willing to welcome him back into the family if he renounced his life and married a woman. He would end up having to block their phone numbers after their disappointment turned into threats and condemnation.
A few years ago, he decided he wasn’t going to contact them any more. We’d gotten married, bought a house, adopted a dog, and surrounded ourselves with a great group of friends. We had our chosen family and that was enough.
Last year he started having vague symptoms that something wasn’t right. He went to the doctor a few times before things were taken seriously. We knew something was really wrong, but weren’t surprised that his generic complaints weren’t getting him access to the tests we thought he needed.
Finally we got a diagnosis. It wasn’t a “good” one.
We thought we’d put the family issue behind us. But now we’re back to mulling it over.
Do we owe them a last chance to make amends? Does he owe himself one last opportunity to have his family’s support? Or is it just inviting trouble into our lives?
While we’re legally married, we’ve heard enough horror stories of long-estranged family members suing spouses for assets or fighting to take back POA. The potential for danger seems high.
But I know he’s always held out hope that one day down the line they would learn to accept him. There is no “one day.” It’s now or never.
Caregiving is a rewarding activity, but it can also be very emotionally and physically draining. Compassion fatigue among caregivers is common, which can lead to burnout, depression, and exhaustion. Not only are these symptoms draining on the caregiver, but over time, they can lead to a decrease in quality of care.
Luckily, today we have boundless technology to assist in both trivial and specialized tasks. Below are some ways that technology can help ease the burden on caregivers and improve quality of care for seniors.
Technology and Senior Care
Technology is mostly associated with and marketed toward young people, mostly because they are the ones who will spend the most money on new technologies throughout their lives. But technological advances can improve livelihoods of people of all ages, especially people with dementia or limited mobility. Caregivers can utilize technologies built specifically for elder care, like remote monitoring systems and wearables that monitor blood pressure and allow seniors to call for help in case of a fall. These devices not only offer concrete benefits, but they also provide a sense of security, so the caregiver knows that there are proper safety measures in place and that they’ll be alerted immediately in the case of an emergency.
Inside the home
Accidents inside the home are not uncommon for seniors. For many, home is where they spend most of their time. When we are in our homes, we tend to be relaxed, and not as careful as we might need to be. This can lead to carelessness and injury. This is why caregivers should look into home improvements like home automation that makes sure devices are off and the house is locked when no one is there. Safety devices like hearing impaired smoke alarms and other home monitoring systems are also recommended. These technologies can help prevent major incidents, while falls can be prevented with the installation of handrails and other supportive structures throughout the home.
Many caregivers find that they cannot take care of their charge alone while still caring for themselves. This may lead to looking for assisted living situations or hiring medical assistance. Unfortunately, because social services are perpetually underfunded, the people in these positions are often at the same risk of burnout as family caregivers. This leads to many seniors being emotionally harmed by neglect or abuse.
But luckily, the Internet provides caregivers the opportunity to do extensive research on service providers. It also provides methods to report abuse and neglect, preventing others from experiencing the same. Phones and computers make it easy to record infractions and hold people accountable. There are also vast online communities giving caregivers ideas and resources for providing quality care, both with and without assistance.
It’s common for caregiving to wear people out. Technology can help you implement safety measures and automate certain tasks. How have you used technology in caregiving? Share your experience in the comments!
Jeriann Watkins Ireland
Jeriann blogs about her financial journey, food adventures, and life in general at dairyairhead.com. Check out her blog or twitter to see more of her writing!
When an elderly parent becomes unwell or unable to maintain full independence, the child is often the one to step in to provide his/her parent with the loving care they need. Caregiving for a parent is always difficult, but when there are several siblings involved, everything becomes that much more complicated.
There are many different ways that adult children react to their parent becoming dependant on the help of others, and when there is more than one child, these individualized reactions can cause strife and bitter feelings, unless dealt with correctly.
The following are some common ways that this situation can (and does) play out:
1. Siblings Who Refuse to Help
When the child of an aging parent has other siblings around, he/she may be tempted to take the easy way out and allow the burden to fall on someone else’s shoulders. This can obviously cause a lot of resentment among the siblings who end up with all or most of the responsibilities.
One such example is Gloria P.*, who shoulders the entire burden of caring for her aging father.
As Gloria shared, “The responsibilities of caring for my dad, who has dementia, are daunting – and my brothers never visit or help in any way. I took in his dog, I pay his bills, I drive him places – but they do nothing, and honestly, I resent that.”
Carol Bradley Bursack1 recommends several ways to deal with siblings who refuse to take on their fair share of responsibilities:
- Ask for help. Be direct and tell them exactly what you need or what they might do to ease your burden.
- Have a care plan. A care plan can help you organize tasks and responsibilities to make it easier for them to get involved. Also consider keeping an online medical & health record so that you’re always on the same page.
- Let go of expectations. By learning to let go of your expectations and hurt and allowing yourself the liberty to find help elsewhere without feelings of resentment, you are ensuring your own peace of mind.
2. Siblings Who Forcefully Take Control
Alternatively, there may be several children who would like to help – but another sibling refuses their help, choosing to control the situation and have the last word in their parents’ care.
“The opposite problem also exists, when one sibling takes on the entire burden, believing he/she must do everything and shutting out the other siblings. In my family, our oldest sister took Mom on as her personal project. We’re not allowed to have an opinion. Yes, she’s good with financial stuff and Medicare – but that doesn’t mean we don’t want to be involved in our mother’s care! She just won’t let us do anything for our mother, despite our protests,” says Diane S.
3. Multiple Siblings with Conflicting Interests
Even when all or most of the children pitch in and/or get involved in their parents’ care, there can be a lot of conflict caused by different opinions, or, according to Alexis Abramson, gerontologist and author of “The Caregiver’s Survival Handbook,” even by pre-existing tension between siblings:
“When siblings squabble over who will care for Mom or Dad or refuse to help one another with caregiving tasks, the problem often isn’t about caregiving itself, but conflicts and power struggles that may have existed since childhood.” – Alexis Abramson
Many caregivers and senior care managers recommend circumventing such issues by having a neutral third party involved as a mediator.
If the main issue is the differences of opinions, one great recommendation is given by Heidi T., an experienced family caregiver:
“Your first consideration should always be to fill the wishes of the parent wherever possible. If not, try to make the kinds of decisions the parent would have made in the past. This way, instead of getting your personal feelings involved and doing what’s best for yourself, you know you are doing the best you can for your parent.”
Ellie L. from New Jersey is one of seven siblings and she often struggles with keeping the peace between her siblings. The following is her take on sharing the caregiving burden, as well as the mindset that helps her ensure that her mother gets the best care possible without any hard feelings among her siblings.
“One of the hardest things about having an elderly mother,” Ellie begins, “is juggling the many opinions and keeping peace. It’s really true what they say – one mother can take care of seven children, but seven children can’t take care of one mother.
“The first thing I try to remember,” she continues, “is that if other family members give opinions or try to be ‘helpful’ they are doing it from love.
“Everyone makes mistakes; no one does a perfect job taking care of others. If you don’t like the way your sibling is handling it – realize that she’s doing the best she can.
“In my own family situation, I have no reason to suspect abuse. Of course, if one does suspect some kind of abuse, one has to take action!! If not, you have to trust the caregiver to make the best decisions he/she can. (It doesn’t help to mix in for everything… too many cooks spoil the broth!)
“Sometimes, my siblings make decisions that don’t make sense or that were wrong – but once it happened, it’s over and there’s nothing I can do about it. Instead of causing family discord because of the past, I choose to accept it and move on.
“If I feel strongly that something needs to be done a certain way, while my sister feels the opposite, I need to remember that two people can have opposite opinions and neither one is wrong. For example, I feel that our Mom needs evaluation for depression, and my sister thinks I’m just imagining things. In this case (and in many other cases like this one), there is no danger to giving in and waiting some time before re-evaluating her condition. It gets tricky if you think that there is danger, but I find that it’s pretty rare that it gets to that. After all, unless you’re dealing with unreasonable people, your siblings all want what’s best for their mom.
“Years ago, when my sister’s mother-in-law was unwell, she had one sister who was mostly involved in the caregiving. She once complained, ‘They live out of town and they like to have opinions. I’m here, taking care of everything, and my siblings in another town have an opinion on how I do it! You know, if you really want to have opinions, move here and do it yourself.’
“When I heard that,” Ellie concludes, “I made up my mind that if my sisters are going to do things I’m not able to take on myself, I have no right to have an opinion.”
Jessica C., who helps care for both of her parents, agrees with this: “My parents live with my sister. We have three other siblings who live around the country. When I spent a few months at my sister’s home (which is in another state), I gained a new appreciation for what she does for my parents, as well as how difficult caring for them can be. My other siblings, who didn’t share this appreciation, tended to bark out orders. Because of my experience, I have learned to allow my sister to make the decisions, and I encourage my other siblings to do the same. The most important thing is the care and wellbeing of our parents.”
Top 5 Tips for Shared Caregiving
When sharing the caregiving burden with your siblings, Ellie recommends keeping the following pointers in mind:
- People make mistakes – and sometimes what you believe is a mistake may actually not be a mistake at all.
- Two opposite opinions can both be right.
- Appreciate what they’re doing instead of thinking about how you could do it better.
- You all share love for your parent and the fact that you have different opinions is okay.
- Always support each other and respect each other’s opinions. This is especially important because, similar to parents who undermine each other and thus undermine their child’s growth, siblings who don’t support each other in their parent’s end-of-life journey end up undermining their care – and this is true even when you’re in the right.
*Some names have been changed to protect the privacy of the individuals involved.
1 See Top 3 Excuses from Siblings Who Don’t Help with Caregiving
Featured image: Joseph Sohm / Shutterstock.com
About the author: Hanna Landman lives in New Jersey with her husband and child. She writes for AvaCare Medical, an online medical supply store servicing seniors and the homebound across the US. You can see some of her published work about senior care and more here.
My parents are too young to be facing old age.
They’ve reached that point of enjoying an empty nest. My brother and I are standing on our own feet, settled into lives of our own. Rather than have to parent (active verb) they can just be parents.
My mom and I go shopping and chat several times a day. She comes out with my girlfriends and I. My dad and I go for hikes together. He’s been helping me with the fixing up part of owning my fixer-upper.
I guess it did feel a little too much like being in a TV family. Or some Instagram lifestyle account. But I just thought we were all living our lives, doing our best, and enjoying a bit of smooth sailing after lots of hard work.
Then my mom was diagnosed with MS. Only a few months later my dad was told he has Parkinson’s.
Suddenly the retirement they were expecting evaporated. They’ll probably still be well enough to finish up their last few working years…and then who knows what will happen to them.
They can’t stay in their own former fixer-upper, the one they spent their whole adult lives tailoring to their tastes. The one that echoes with our memories. They’ll have to find a new place that’s handicap accessible — how much will that cost? Sure, they’ll probably make a nice return when they sell their beloved house. But the real estate boom that will get them a good sale price will also push up the purchase price of a new home.
None of the houses — even new construction — are accessible. Their only choice would be to build custom, make huge changes, or move into a retirement home. All of those are big bucks.
The life I was imagining has vanished, too. I was looking forward to having my parents around to help me when I finally have kids of my own. Now I’ll be raising my own kids just as my parents need more and more of my help. Can I do both? Should I have a baby sooner so they can enjoy having a grandchild before they get too sick? Should I not have kids at all?
I’m scared about how this will change my relationship with my brother. We’ve always been close, but he’s not really someone I’d rely on. Certainly not for practical matters like this. I’m so excited he’s finally living on his own and not mooching off of our parents. I’m worried about how he’ll handle all of this. Will it all fall on me? Will it pit us against each other? I don’t want his relaxed, doofy personality to be something I end up resenting.
My parents have always been so proud and self-sufficient. They don’t feel stubborn to me, maybe just because I’m so similar to them. I know they don’t want to be taken care of. But someone will have to do it. What happens when they need help with personal care, like bathing or using the toilet? I can’t imagine either of them allowing it.
None of my friends can imagine my concerns. They’re worried about getting promoted at work and finding a serious boyfriend. Most of them have grandparents who are still with us and they’re worried about them, not their parents.
I know I’m not the only one facing these sorts of problems, but sometimes it feels like it.
Judith S. Lane
I’ve always felt like an outsider.
Growing up in the suburbs I always stuck out. I didn’t fit in. I didn’t belong there. My parents always described me as the black sheep. When I was little, they tried to get me to play nice, wear dresses, do the things little girls are supposed to do. To their credit, they gave up pretty early on. They’ve always been as accepting as they’re capable of being. In high school when my friends were fighting with their parents, I was always close with mine.
There was no surprise when I announced I was moving to Brooklyn. I didn’t spend a lot of time talking about leaving the suburban conformity for the city, but I think we all assumed it was going to happen. It felt inevitable.
They insisted in helping me move up. They took me shopping for all the stuff I’d need for my first (room in an) apartment. When they come up to visit they don’t bat an eye at how weird my friends are. I’d finally found my place and they didn’t understand it, but they saw how happy I was.
When my dad was diagnosed with cancer, I didn’t really know what that meant. People talk about “cancer” as if it’s one thing. It’s really not. There are hundreds of types of cancers and it seems like some of them have nothing in common.
His type of Lymphoma isn’t necessarily terminal, but it’s serious.
I want to be there for him while he’s going through treatment, but that means going home to the suburban life I hated. Leaving my weird job, my weird friends, and my life behind.
I feel like I have to choose between my family or myself.
Featured image: Christian Mueller / Shutterstock.com
When we said “in sickness and in health” we envisioned supporting each other through old age.
Even 64 seems pretty young these days. The world has changed since the Beatles were at the top of the charts. When did we expect to start feeling old? At 70-something? But then there’s that 96-year-old yoga instructor.
I didn’t imagine the “in sickness” would happen in our 20s.
We felt so responsible. We were checking off all the boxes for becoming adults. We unpacked all the housewares we got for our wedding into our new house and started cooking healthy meals, going out running together on the weekends, and opened up retirement accounts. We didn’t want our careers to be first, but we also wanted to climb the ladder. We talked about who would take how much leave once we had a baby, how we’d manage childcare and housework. We were planners, planning our life together.
And then one day he isn’t feeling well. Really not feeling well. So I took him to the ER, his head in my lap in the waiting room, figuring they’d send us home with some antibiotics. Instead, he was in a coma by the end of the day.
Too much was happening at once for me to even worry about anything. I was in shock.
He came out of the coma, thankfully, but not really. I guess no one comes out of a coma as if nothing had happened; they’re never the same.
He’s never going to be able to go back to the job he had, although it seems hopeful he’ll be able to go back to work eventually. It’s hard to understand that he has brain damage, since there was no accident, nothing happened. He seems like his old self, except when he doesn’t. It seems like he can manage something on his own, except then he can’t.
I don’t want to baby him and keep him from progressing and recovering. But it feels cruel to watch him struggle, flounder on his own.
It feels cruel that this has happened to us.
At night I ask myself how long I will have to do this. How long I can do this. The doctors say he’ll probably be fine on his own, be able to get some sort of job, but there’s no guarantee. Right now he is well enough to stay home alone while I’m back to work part time, except I never quite know what I’ll come home to. So far it’s just been…confusing…to see what trouble he’s gotten into. But I worry all day that he’ll hurt himself or burn the house down.
What if he’s like this forever? How will I take care of us both?
I try so hard to not be angry, to not lose patience with him. Because I’m never mad at him. He didn’t do this. I’m just angry. Angry that this is our life now, that this happened to us. But I know being angry won’t make things any easier.
Mental health issues can strike at anytime, without warning and with little regard for your responsibilities. I knew my husband suffered from panic disorder when I married him. However, it wasn’t until a particularly stressful period at work that it became apparent that I was yet to see the worst of his condition.
By this point, we had a son, and it was clear he couldn’t understand what was happening to his daddy. Fortunately, children are smarter than we give them credit and can quickly adapt to take charge of situations, as long as they feel comfortable.
I was hesitant about explaining mental health to my son, but, since we had the conversation, he’s my biggest helper and an incredible support to his father.
If you’re struggling to broach this difficult topic, here are a few pointers:
Don’t Baby Them
Children see a lot more than we realize. Attempting to keep your kids in the dark if they have a mentally ill family member is a terrible tactic. Not only will they still see the difficulties, but they also won’t understand them, and this will quickly turn to fear.
Being as honest as you can with your child prevents them from feeling isolated. Particularly if the sufferer is a primary care figure; it’s actually easier to cause long-term trauma by shutting them out of the situation than by exposing them to it. It’s easy to feel like they’re too young to experience these sorts of things. However, knowledge is power – even when you’re little – and understanding strange behavior will allow them to still feel safe and in control.
However, there is a slight caveat to point one. Mental illness is complex, and most children’s brains aren’t developed enough to understand the intricacies of brain function. These means it’s important to find a relatable metaphor and description.
A personal favorite in our family is the ‘Hulk’ metaphor. As panic can quickly turn into rage and mental illness sufferers can lose their cool quickly, having a way to explain this to our son without him feeling at fault quickly became essential. The Incredible Hulk is a superhero who turns into a raging monster when he’s angry. This comparison is not only relatable and understandable, but it also comes from the child’s world. Using metaphors based on cartoons and comics can be an incredibly useful tool to help them see what having a mental illness means.
If you’re in this situation, it’s common to worry about information from other sources. While you can control how you address things with you child, there are many out here offering less-than-helpful information. However, here is another area where you child might surprise you.
Especially if they’re older, allowing their own research will let them feel like they can take control and will significantly increase confidence. Just to be sure to engage in discussions about their findings and encourage open dialogue. If you’re worried about internet safety, you can also install parental controls or a proxy service to protect them from online criminals.
Ask Their Feelings
The most powerful dialogue about mental health goes two ways. It doesn’t matter how well you word your explanation, if you aren’t receptive to your child’s thoughts and feelings, they can quickly end up feeling confused or isolated.
There are a few important check-in points for children:
- When you first offer an explanation, ask how they feel about what you’ve said.
- After particularly bad and potentially frightening attacks, talk about their emotions and quell their feels
- If possible, get the sufferer to speak with them so that they can understand you can still be a ‘normal’ person and have mental illness.
- The media can offer negative views of mental health patients. If you child is exposed to this, sit him or her down and discuss how they relate it to the situation at home.
While these points are a great place to start, in reality, it will always help to talk to your child about their feelings towards mental health. Having this open conversation means you can keep tabs on their responses. Plus, they will feel more comfortable to raise their worries and fears in the future.
Give Them Responsibility
Anyone who cares for a mental illness sufferer will know how quickly you can feel powerless. If you sincerely love someone, it’s difficult to see him or her in emotional distress. This lack of control can be one of the hardest elements to being a caregiver.
Although often overlooked, this fact is still true for the children and young relations of the mentally ill. They want to do what they can to help with the situation, so allowing them a small level of responsibility is key. Show them the medication schedule, and ask them to help remind you, or identify a small job they can do if there’s a particularly severe episode. This could be as simple as getting some pillows or a blanket or making a cup of water. Not only will it help their confidence with the situation, but it will also stop them from panicking if things get tricky.
Many put off addressing mental health issues with their children because they feel it will be too difficult. However, this is often not the case. Young people are incredibly resilient and will continually surprise you in their empathy to mental health patients. If you’ve been delaying this talk, follow these tips and ensure your child has a clear picture of their role in the situation.
Caroline Black is a writer and blogger who has become a primary caregiver for her sister. She writes about health, as well as sharing her experiences and insight with mental health and how it affects those around them.
Moms of special needs kids come in all shapes, sizes and types. What kind of (super) mom are you?
Rabbi Rebecca Einstein Schorr blogs at This Messy Life.
This former career-driven mother of three became a reluctant stay-at-home-mom when her autistic son and his two adorable sidekicks needed more from her. Formerly known for her popular blog, Frume Sarah’s World, Rebecca Einstein Schorr has embraced the challenge of stepping off the rabbinic pulpit and into the kitchen – some say for the very first time. The transformation from a religious community leader to what her kids call a “house-mother” has been nothing short of life-altering.
Caring for seniors requires knowledge, skills, and stress resistance. Leaving our loved ones in the hand of others requires trust. It is my honor to talk to Jacqueline Thomas, a professional caring staff who uses her old phones to build a team with the families of the people she cares for.
Her stories have testified that creating and sharing a video connection is an open door that fosters trust between caregivers, patients, and their family members. Let’s take out our old phones lying in the drawers, bring them back to work, and make caregiving a bit easier.
I have been working as a caregiver in nursing homes for years. This job is rewarding because I can care and provide comfort for people who can’t be taken care of at home anymore. However, it comes with many different challenges.
Some of my patients (termed as “consumers” in our service) are non-verbal. They have problems expressing their wishes as well as problems. Even though I am supposed to be available at all times during my shift, I do sometimes have to go to the kitchen to prepare for food, for example. I have learnt that anything can happen in a second in my job, so I need all the help I can get. Alfred is my recent discovery. It is an app that turns spare phones or tablets into cameras.
Just sign in with Gmail, and I can watch the patient/consumer or receive Motion Detection notifications even when I am somewhere else in the house.
I set a Camera Phone up in front of a Teddy bear by a non-verbal patient’s head so that I can always keep an eye on him. Lucky for us I did. When I was heating food up in the the kitchen the other day, I saw on my phone screen that he had a seizure. I quickly rushed back to his side and handled the situation. It was a close call!
It isn’t necessarily easier to take care of patients/consumers who are able to speak. Some of them refuse to communicate, so I have to observe them closely. Patients/consumers with dementia could forget where they put things and whether they ate. If they complain to their family, who in turn complain to the nursing home, it could easily cost me my job or even license.
While I installed Alfred to ensure my job security, what I have found is that it fosters trust between me and the patient’s family. Rather than waiting for them to take the initiative to surveil me, I have added them to Alfred’s Trust Circle so that they can check on the patient/consumer as well as my interactions with the patient/consumer. It makes us a team.
My patients/consumers might not get better, but I am proud to provide them with dignity and comfort. It’s great to do this with a little help from Alfred
is the founder of Alfred
, an app that allows anyone with an old cell phone to use it as a motion detected home care camera.
Caring for a loved one who has special needs or has become ill or infirm is a big job. Not only is it physically demanding, it takes a toll emotionally, as well. It can be difficult to watch someone you love suffer through painful issues; yet for many caregivers, knowing that they can provide some measure of relief by helping them with daily activities often makes the job easier.
If you’ve cared for a loved one and had to take time off from the workforce to do so, you might be thinking about finding employment again. Now that you have experience with caring for someone with special needs or an illness, there are many paths you can take that involve helping someone.
There are some steps you’ll need to take first, however. Here are the best tips on how to get started.
Figure out your goals
It takes a special kind of person to take care of someone who cannot take care of themselves. It’s a very demanding job, and it can be difficult to perform physically if you don’t have help. Ask yourself what your goals are and think about how your daily duties might affect you. Patience, kindness, and emotional strength are all required attributes for a caregiver to have.
Do some research
Before making any decisions, do some research on the field you want to enter. Find out what it takes to become a licensed caregiver in your state and decide what area you want to focus on. If you want to provide medical care for someone, you might need a nursing degree. If you’re thinking about taking on a younger patient, you may want to consider taking some child psychology classes. If you want to provide general home care, like cooking, housekeeping and errand-running for someone who still has some independence, it’s important to know what to charge so you’ll be competitive in the market but not sell yourself short.
Talk to someone with experience
You may have experience taking care of a loved one, but providing care to someone you don’t know is a very different job. Learning their likes and dislikes, their habits and needs… it can all be a little overwhelming at first, especially if you are hired by a family who has specific guidelines for their loved one’s care. Talk to someone who has experience in the professional caregiving field and get some feedback. Don’t be afraid to ask questions and find out what they like and don’t like about their job. Again, you have options in how you can help care for someone, so finding out what this kind of job really involves firsthand may help you choose the right fit for you.
Make some contacts
Once you’re fully licensed to become a caregiver, it’s important to start making contacts in the healthcare world. Consult your local department of health services to find out if there is a registry system you can be added to that would allow clients to find you. You can also contact health insurance companies and ask about being added to their list of care providers.
One good thing about pursuing a career in care is that you have plenty of experience under your belt now, even if not formal experience. Surely this will help you as you pursue caregiving in a formal manner. It will certainly help you in any job interview scenarios.
By Jim Vogel
Jim and his wife, Caroline, built ElderAction.org after becoming caregivers for their aging parents. He enjoys sharing valuable information with seniors and their caregivers.
Photo via Pixabay by Maxlkt
It has taken me almost 10 years to figure out that I actually have a reset button and that I’m allowed to hit it when needed! My husband has a C4/C5 spinal cord injury and as his primary caregiver for going on 10 years, along with caring physically (alone) for our almost 10 year old, I’ve hit my limit often.
However, every time I did, I pulled myself back from the brink only a little thinking it was all I needed and all I could allow myself at that time. I mean, how do you, as a caregiver, allow yourself respite time when your husband cannot take care of himself AT ALL and when your young child needs you desperately? So really, I didn’t allow myself time and mentally wasn’t in a place where I could allow it to happen. Everyone told me to take time and everyone told me I needed it and deserved it but until I believed it, it wouldn’t happen.
So hitting the reset button didn’t actually happen until I understood and accepted that I needed to do it and needed to allow myself to do it. Sure, my husband told me to take the time but again, until I (me, myself and I) allowed it to happen, it wasn’t going to happen. So now, when I know when I get close to the breaking point (I get short and angry and mean with my family), I need to totally step away from the situation.
Sometimes, the reset is a nap. Sometimes it’s a car ride around the block. Sometimes it’s a walk down the driveway. Sometimes it’s a night away if all works out as planned! But most times, it’s 15 minutes alone in my room doing deep breathing and stretching. I’d say yoga but it’s really just stretching… I sit cross legged on my dog’s bed and lean as far forward as possible and stretch my back out and breathe… I used the Headspace App to meditate for a few weeks and now, when I need the time, I can sit in my room, stretch and breathe and do a 5 minute faux-meditation.
That’s usually how I reset since while I’d love respite care, I know that I will never, ever be okay with doing that knowing my husband and my daughter need me. So if the time I have to take for myself is only a few minutes, that’s okay since I know I can calm myself down and relax and then get back in the game.
I know I’m not supposed to feel guilty, but I do.
When we were told that the baby I’m carrying would have severe disabilities, we knew abortion was an option but didn’t seriously consider it. This was our baby, no matter what.
But that choice won’t just affect my husband and I. It will also affect our daughter.
Our decision to keep this baby, to support in every way we possibly can, and love it forever means that our first daughter will never have the childhood we envisioned for her.
I feel like we’re stealing her childhood from her.
The internet is full of beautiful stories of the siblings of people with disabilities. I’ve been reading them when I can’t sleep, which is a lot lately. I find solace in them.
But I know our daughter, my husband, and I will have to make sacrifices. My husband and I made that choice together. Our daughter will have to live with our decision.
I hope one day she’ll be happy to take on that responsibility when we’re no longer able to.