The Caregiver’s Handbook

A comprehensive guide with tools, resources, and in-depth solutions to some of caregiving’s toughest challenges.

More than 80% of adults who need at-home care get help from family, friends, and others who often go unpaid. This dynamic can lead to a number of challenges for both the caregiver and their loved one, including stress, insomnia, financial hardship, and even depression. The good news is, every caregiver challenge has solutions that can ease just about any physical, mental, and emotional strain you may face. Whether you’re brand new to caregiving or have been helping a loved one for years, this handbook dives into the difficulties and offers three key steps to making your care situation as successful as it possibly can be.

Understanding the Caregiving Challenges

No caregiving situation is the same. Whether you’re caring for a child with a physical disability or a parent with dementia, each relationship and responsibility is unique. Each situation poses different challenges that call for varied solutions. Some of those challenges are easily overcome, and there is plenty of support in place – but some are so unique that they aren’t easily solved and can amplify the stress on everyone. That said, if you’re a caregiver, you’ll likely run into a few common themes. Let’s break down the challenges you may face if you’re an unpaid caregiver and then launch into ways to tackle them.

Time Management

Time Management

It can be difficult to manage your time. You have work or school, doctor visits, grocery shopping, paying bills, maintaining ties with family and friends, and so much more. When you’re a caregiver, there’s even more responsibility to consider. Add in things like feeding and bathing your loved one, helping them with day-to-day life, keeping up with medications, treatments, and doctor’s appointments, and things can get hectic fast. This can lead to anxiety, stress, and a lack of self care.

Stress

Stress (Physical & Emotional)

As a caregiver, you have more to do and more to worry about. Maybe you’re taking on more (or all) of the household chores or family errands now. Maybe you’re responsible for new medical bills that have neared or surpassed your financial capabilities. Maybe the simple day-to-day act of caring for a loved one who isn’t in the best of health is taking a heavy toll. The causes of the stress may be unique to the situation, but they all can lead to dangerous physical and emotional symptoms. According to WebMD, the following symptoms can occur when a person is under significant stress:

Physical symptoms

  1. Lethargy
  2. Headaches
  3. Muscle aches
  4. Chest pain
  5. Stomach and gastrointestinal irregularity
  6. Insomnia
  7. Weakened immune system  

Emotional symptoms

  1. Anxiety
  2. Easy agitation
  3. Inability to calm or relax
  4. Low self-esteem
  5. Avoiding others
  6. Loneliness
Lack of Privacy

Lack of Privacy

For some caregivers, there’s a feeling of always being “on call”. This is common for caregivers of loved ones with dementia; they need to monitor their husband, wife, or parent, in some cases around the clock, to feed, clothe, bathe, or protect them from hurting themselves or others. That causes serious time and privacy constraints; if you can’t leave your loved one alone, then you never (or at least rarely) get any time to yourself. That can leave you feeling overwhelmed, underappreciated, constantly on high alert, or even housebound, depending upon how much care your loved one must have.

Financial Strain

Financial Strain

It’s hard enough to figure out the bills at the end of the month. And with doctor visits, medication, in-home help, and other healthcare-related expenses, things add up fast. According to the Alzheimer’s Association, senior citizens with dementia have twice as many hospital stays per year as those without, and they are more likely to have skilled nursing home stays or home health care visits. In 2018 dollars, the lifetime cost of care for someone with dementia is estimated at $350,174. Even with health insurance, some of the necessities of a person’s care might not be covered.

Lack of Sleep

Lack of Sleep

With so many things to handle, sleep is one of the first things to fall by the wayside. A lack of sleep – clinically known as insomnia – can manifest in a caregiver in two specific ways. An inability to fall asleep (or to return to sleep after a disturbance) may derive from anxiety and worry related to caregiving. An inability to stay asleep may also be the result of anxiety, or the need to care for a loved one in the middle of the night. Adults who need care at night may suffer from incontinence, sleepwalking or wandering, or other challenges that make the caregiver feel the need to be “on alert” for them at all hours. The National Sleep Foundation offers further information on insomnia.

Isolation

Isolation

The very nature of being a caregiver means that you’re with your loved one for an extended period of time. Whether you are a part-time or full-time caregiver, you’re probably spending much more time with the person you’re caring for and far less time socializing with others. Besides the physical isolation that can come from staying in the house – especially if your loved one isn’t mobile – it might also seem tough to find someone who understands your situation. This emotional isolation can exacerbate the physical isolation, leading to burnout and depression.

Burnout

Burnout

With caregivers taking someone else’s health in their hands, the amount of energy needed to sustain the responsibility can be overwhelming. According to the Cleveland Clinic, caregiver burnout is a state of physical, mental, and emotional exhaustion. Those who suffer from burnout can quickly lose the energy necessary to care for their loved one, and even for themselves. They might suffer from depression, anxiety, fatigue, a change in attitude, some level of guilt, intense stress, and more.

Lack of training

Lack of training

Very few people are fully prepared to become a caregiver, especially for the long-term. As a result, many unpaid caregivers are put in situations they’re not prepared to handle. Either it’s the extra time, money, or energy needed to deliver the care, or it’s the lack of knowledge and skill needed to handle certain situations. For example, dementia caregivers need to pay close attention to their loved one’s food intake, exercise, and personal hygiene. But without solid training in those areas, it’s easy for things to slip through the cracks.

Depression

Depression

Depression has many causes, some of which caregivers experience regularly, including stress, lack of energy, and social isolation. It’s common for caregivers to become depressed; in fact, the Family Caregiver Alliance reports that caregivers experience depression twice as often as the general population. Feelings of emptiness, despair, and sadness can sometimes make caregiving seem like nothing but doom and gloom. It’s difficult, no doubt, with roadblocks, speed bumps, and 10-ft hurdles at every turn. But it’s also a life-changing experience that can be manageable for just about anyone.

3 Keys to Top-Notch Caregiving

Great caregivers are often patient, compassionate, and dependable. They put the needs of their loved one ahead of themselves and others. But for many, that may not be enough. Too much responsibility can make the patience run out, the compassion fatigue, and the dependability wane over time. Caregivers are only human, after all. If this sounds familiar, it may be time to expand your approach and lean on two things that unpaid caregivers often overlook and underestimate: a solid process and good people.

The Power of Process

Having a plan, no matter how simple, can relieve stress and make life much easier. Remember, a work culture is only as good as the processes in place. While not quite as extreme, the success of your caregiving (for your loved one and yourself) depends largely on your system. A great system can quickly give back a little of the mental and emotional energy you may have lost. Here’s where to start:

Get Organized

When it comes to caregiving, there are many moving parts that must be addressed: doctor visits, medication amounts, medication times, diets, exercises, hygiene routines, and a hundred other things to keep organized. And even if you have the memory of an elephant, mistakes happen; appointments slip through the cracks and medication gets forgotten. When getting your organization game on track, start with a few basics:

A simple calendar

It almost sounds too basic, but a calendar is critical, especially one with daily, weekly, and monthly views. Whether it’s a paper calendar on your fridge or a digital calendar on your iPhone, update or check it every day – especially when you wake up and before you go to bed.

A three-ringed binder

Paperwork adds up, and having it all in one place makes it easier to find anything you might need later. Consider sections for bills, medical reports, notes, insurance documents, and anything else related to your loved one’s care or medical issues.

There’s an app for that

There’s a growing marketplace for apps related to medical and health care. Some of these have calendars, medication lists, e-bills, notes, and other info or files to keep critical information. The best part of the apps is having everything all in one place, right there at your fingertips. On the other hand, using the apps appropriately is very dependent you’re your technological acumen, as well as even simpler points, like your cell phone’s battery life. Here are some great apps to try:

Caregiver Buddy

1. Caregiver Buddy:
If you’re caring for a loved one with memory loss, this is the app for you. It provides in-the-moment tricks and ideas to help your loved one cope, as well as live help if things get too difficult to handle on your own.

Caring Bridge

2. Caring Bridge:
This app forms a “bridge” between different members of the caregiving team, and even the loved one themselves, to help coordinate what needs to happen to ensure the best care. There’s even a guest book where you can share information with far-flung friends and family.

CareZone

3. CareZone:
This app offers three distinct helping areas: A journal that allows you to share information on your loved one, a calendar that comes in handy for every situation, and a contact section that helps you keep doctors, insurance companies, and much more all in one place.

Caring Village

4. Caring Village:
This app designed for caregivers offers everything from checklists to assignable to-do lists to a wellness journal that allows you to “check in” with a loved one at any time. Not just for in-home care, this app can be used by those in senior housing or assisted living as well.

Dementia Caregiver Solutions

5. Dementia Caregiver Solutions:
This app offers hope for caregivers with helpful tips on 25 of the most common issues faced by those with dementia. These tips are designed to keep you grounded and hopeful when the going gets tough.

eCare21

6. eCare21:
This virtual care platform touts remote monitoring as a way to help lessen the burden on the healthcare system, insurance companies, and of course, the caregivers themselves. This monitoring can take the form of watching almost everything, from how many hours of sleep a patient gets to what their vitals are at any given time.

Medisafe

7. Medisafe:
This reminder app for medications is not only great for the caregiver, but might be excellent for the patient themselves, as it could be one piece of the puzzle that allows them to live independently for longer.

MyMeds

8. MyMeds:
This app can pull in many people on a caregiving team, including doctors, patients, caregivers, and even insurance companies or representatives for payment of the medications needed by your loved one. The app works in real time, thus reducing the harm that can come from a mistaken or missed dose.

Pacifica

9. Pacifica:
Caregivers who deal with negative thoughts now have an app to combat them. Pacifica provides psychologist-designed tools to break the cycle, including meditation, mood tracking, relaxation and much more.

PainScale

10. PainScale:
Designed for those who suffer from chronic pain, this app diary serves as a way to track pain levels, takes notes on what might be causing that pain, and find tips and insights that can help your loved one become more comfortable.

Prioritize

As a caregiver, you have a lot to think about. Even with a calendar and an app, keeping up with the day-to-day challenges can be tough. One way to minimize the stress (and the risk for a loved one) is to prioritize. Some seasoned caregivers use a simple three-layer categorization: safety, health, and aggravation. Here’s how this prioritization framework might work for a dementia caregiver:

  • Safety:
    Does my loved one wander outside? Try to cook when I’m not looking? Inserting safety knobs on both the door and the oven can be marked as “Red/Danger” on the to-do list because they impact the loved one’s (and the caregiver’s) immediate safety.
  • Health:
    Does my loved one refuse to take pills or lie about eating extra dessert? Do they need extra encouragement or guidance when it’s time to go to the doctor? Finding an alternative to pills, taking them to the doctor, and changing the shopping list might warrant a “Yellow/Warning” on the prioritization list.
  • Aggravation:
    Does my loved one leave doors open, lights on, or lose things? These aren’t necessary dangerous to safety or health, but they can impact quality of living for both the loved one and the caregiver. Activities such as covering the light switches or creating visual reminders might be marked as “Blue/To-Do” on the list.

People & Community

If you’re a caregiver, it’s easy to think you need to do everything. Either you feel you’re the only one who can do it all right, or you just don’t trust anyone else around your loved one. But what you may not realize is that going it alone can exacerbate loneliness, social isolation, and many of the other challenges you face. Having a solid group of reliable people around you can alleviate stress and make you more successful in the long run. Here are a few ways that the good people around you can help you be a better caregiver.

Create a Caregiving Team

You may be the primary caregiver, but others can serve secondary roles with tasks like meal prep or transportation. Create a list of caregiving responsibilities, establish what absolutely “needs” to be done by you, and then see if others can help elsewhere. When someone offers to help, let them – and look to your list to give them something concrete to do. It may take some time to establish a reliable team and working routine, but it’ll be worth it in the long-term, for everyone involved.

Set up a Communication Board

Make sure you have a good way to get the word out. Though phone calls and texts might work for a quick fix, a proper means of communication can be the key to smoother days. This could be a listserv, online bulletin board, website, Facebook page, or anything that communicates quickly and effectively to your caregiving team. Some apps have communication bridges, as well, sending alerts to team members when certain milestones are met or something is needed. Don’t be discouraged if your first attempt at a communication board isn’t a good fit; there are plenty of others to try.

Support Groups

When life gets difficult, it’s best to reach out and not go it alone. One of the best things about caregiving is the community around it. People who have been caring for someone for years will often meet up in person or share their knowledge and skills online. Find these face-to-face or digital meet-ups and use them. Remember, if you’re facing a specific challenge with your care, there’s a good chance someone else has faced that challenge, too – and you can help each other. The Community Resource Finder is a good place to start looking.

Respite Services

Every caregiver needs a break, if only for a few hours. Respite services provide a temporary reprieve from caregiving and keep the person you care for in a safe environment. Here, a nurse or certified home health aide visits the home (in-home service) and cares for your loved one for a pre-determined block of time – usually a few hours. This allows you to run errands, visit with friends and other family, or just have time to yourself. Other respite services include adult day centers and full-fledged residential care facilities.

Taking Care of Yourself

Taking the time to put yourself first (at least for a while) may sound selfish, but it holds weight. Take a note from the direction of every steward and stewardess going through the safety check before a plane takes off: secure your own oxygen mask before assisting others. If you don’t have the ability to take care of yourself, you can’t effectively take care of anyone else. Giving yourself the time to breathe can make it easier for you to take care of your loved one, meet all your obligations, and find the stress relief you need during a very challenging time. If you’re a caregiver, do the best you can to make these activities a habit:

Exercise

Exercise

Though getting up and moving can seem daunting at first – especially if you’re dealing with burnout, depression, or fatigue – a good dose of exercise can actually help pull you out of those negative emotions. The natural endorphins released during exercise can go a long way toward making you feel better. Besides that, exercise has the obvious benefits of keeping your body healthier.

Eat Healthy

Eat Healthy

In a caregiving situation, you might find yourself without enough time to eat healthy foods – or too much time on your hands, during which you reach for the “feel good” unhealthy foods. Eating a balanced diet offers many benefits, including increased energy, a reduction in the risk of chronic disease, maintaining a healthy weight, and promoting overall health.

Get Out

Get Out

Isolation can take a serious toll on every aspect of your life, and that leaves you at less than your best. That means not only do you suffer, but so does the person you’re caring for. Getting out of the house for a bit, just taking the time to breathe, relax, and unwind, can do a world of good for everyone involved – but especially for you.