The family caregiving tips, sanity-saving insights and in-the-trenches experience as well as time-saving and money-saving caregivers’ resources I’m sharing with you helped me survive the most difficult moments of my life. I hope that they can help you, too.
Millions of family caregivers help aging parents, disabled or sick loved ones while managing their own families as well as their jobs, businesses or classes.
If you’re like most family caregivers, you probably started your journey with absolutely no preparation.
Most likely, injuries from an accident, broken bones from a fall, a catastrophic illness or some other devastating changes in the lives of your loved ones also changed your life forever.
It can be terrifying, confusing and overwhelming to be placed suddenly in your new role.
On October 22, 2003, my brother’s life and my life changed forever. My beloved brother and best friend, Ed, suffered a brain injury after hemorrhaging from a brain aneurysm.
I was shell-shocked and in complete disbelief of what was going on. Nothing can prepare you for such catastrophic health changes for someone you love.
I remember walking around the hospital in a daze…
Ed was my rock. As we were growing up, he was always there for me. At first, I focused on dealing with such an inconsolable loss. He was the family champion. How would we ever survive living without his help and guidance?
But within hours, the harsh reality of my new life and responsibilities started to sink in. Ed was going to need me to be strong. I needed to stop being selfish and focus on how I could help him and our family.
For many years, Ed was the primary caregiver for our mother who had heart disease and other health issues. After he became ill in 2003, I took over all his caregiving responsibilities… and my role as the family caregiver began.
What’s a Family Caregiver?
Whether you’re providing hands-on care or helping your aging parents, disabled or sick loved ones from a distance, you are a family caregiver.
There are approximately 67 million caregivers in the United States. According to the National Alliance for Caregiving:
- 66% of all caregivers are women
- 60% of all caregivers work full time
- 85% of all caregivers do not know how to be a caregiver
Some family caregivers are part of the Sandwich Generation. They’re responsible for caring for their children as well as caring for their aging parents, disabled or sick family member(s).
Caregiving can be very rewarding and joyful, but it can also be stressful and challenging. This complex role comes with enormous responsibilities as well as emotional and financial burden.
Family caregivers are usually not paid for providing care and helping others. They usually work 24/7. Most caregivers do not get any day off.
It can be extremely difficult to maintain work-life balance while providing care for loved ones.
Due to their overwhelming responsibilities, many caregivers end up dealing with divorces or relationship breakups, job terminations, crushing financial issues, substance abuse or even suicidal thoughts. Some are caring for abusive family members, ex-spouses or relatives; while others are shocked and ashamed to find themselves become the abusers.
Caregiving is not for the faint-hearted. It is definitely not for quitters. Sadly, the realization that they do not get to quit EVER — because their loved ones need them desperately — can add to caregivers’ sense of hopelessness, anguish and desperation.
Family caregivers are the unsung heroes of our society. But, most are struggling to survive while they’re caring for their loved ones. They’re usually stressed out, time-starved and overwhelmed with everything they have to do.
The Family Caregivers’ Resources offer caregiving tools, help and support. You can find resources that can help you cope with the challenges of caring for loved ones with medical, physical, mental and/or emotional issues.
If you just became a caregiver, read on and learn about the things you need to know and do…
Family Caregiving 101: Sanity-Savers and Survival Tips For Caregivers
Plan ahead for your loved ones’ care. No matter where you are in your caregiving journey – whether you’re just starting out or getting close to the end – the most important thing you can do is to plan ahead and prepare for what might happen.
Don’t wait for a crisis. By staying one step ahead, your loved ones will have more choices and better care.
By being prepared and planning ahead, you can avoid lots of last-minute stress. You can also avoid wasting your time and money. You can have peace of mind that you have a plan in place when your loved ones need help.
Planning and Preparing for Family Caregiving
Have a family meeting to discuss your loved ones’ current situation and future needs. As much as possible, let your loved ones participate in discussions about their needs and plans for their future. Ask them questions and really listen to their answers.
Ask what they’re worried about. Discuss their wishes and preferences. This is a difficult conversation for most people have. So, you may encounter a lot of resistance.
Back off if your initial attempt to discuss their needs is upsetting to them, but try again when you have another opportunity. If you are repeatedly shut out, consider asking their doctor, another family member or a trusted friend to discuss your concerns.
It’s important to discuss their health insurance and financial situation because that will affect your decisions in the future regarding their care. Ask them to review their bank accounts. So, you can determine how much is available to cover potential costs.
These discussions can be very emotional for everyone involved. So, prepare for potential conflicts and try to resolve them. It’s better to have the difficult conversations early instead of waiting until you have a crisis.
Staying Organized: Create a System to Keep Family Caregiving Simple
It can feel overwhelming to keep track of all the information involved in caregiving. So, stay organized. This is a great time-saver and sanity saver.
* Find important documents and keep them organized. Keep a record of emergency contacts and other key contacts, medical insurance information, list of medications medical history, power of attorney, advance directives, health care proxy and other essential information in an online folder that you can access from your flash drive, smart phone or other devices. You need quick access to these documents and other information in the case of an emergency.
* Make a to-do list and prioritize it. Instead of constantly feeling overwhelmed about everything on your plate, your to-do list can help you stay on track and focus on what matters most. You can categorize tasks as must do or nice to do (if and when you have more time). You can prioritize your tasks based on what needs to be done urgently or not.
* Keep one notebook for your to-do lists. You can get an organization notebook or calendar already designed for daily, weekly and monthly to-do lists. You can also use apps that can synchronize your lists on your computer, smartphone and tablet. Avoid having multiple to-do lists in multiple places because that can lead to confusion.
* Create an easy filing system at home or online for important receipts, medical bills, equipment instructions and other paperwork. Instead of setting them down then misplacing and forgetting about them, file them immediately in your filing cabinet at home; if you don’t think you’ll ever need them again, toss them in the trash or shred them as needed.
* Some people prefer an filing system online because it’s searcheable and you can access it anywhere you are. As soon as you get any paperwork, just scan it and upload it to your online filing system. Alternatively, you can take a digital picture using any smartphone and email the picture as an attachment to yourself or anyone who might need it.
By creating an organized filing system, you can avoid wasting a lot of your time looking for paperwork.
Caring for Your Loved Ones
Assess and prioritize what you need to do. Focus on the most essentials. If you’re the primary caregiver, figure out what needs to be done by you and what you can delegate to someone else. If you can delegate some tasks, it can make a big difference in your busy schedule and stress level.
* Don’t feel guilty about getting help. You can’t do it all. Try to get help from other family members and relatives as well as from your church and community services. You can also hire health aides and other people to help you with housework, cooking, gardening, etc.
* Keep lines of communication open with your caregiving support team — which can include other family members and relatives as well as friends, people from your church and community resources. Be specific about the kind of help and support that you need from your support team.
Most people are willing, but they don’t know what they can do to help caregivers; so, they end up not offering their help. You need to communicate, assign and schedule specific caregiving tasks that you need help with.
- Who can take care of bathing and personal care?
- Who can provide transportation to medical appointments?
- Who can prepare meals a everyday or few times a week?
- Who can take care of paying bills?
Summarize your caregiving plan in writing. This can help you avoid any misunderstanding. Keep every member of the team in the loop by email or texts. You can also use an online scheduling tool, such as, LotsaHelpingHands.com to stay current on what’s happening and who’s doing what.
* For most families, one person assumes the primary caregiving role; so, decide who is going to be in charge of your team. Every member of your caregiving team should have clearly defined roles and responsibilities. Duplication of tasks is as a big time waster; so, make sure they’re all clear about their duties. If not, some things may not get done. For example, if it’s not clear who is supposed to manage medications and timely prescription re-fill is not done, your loved one will end up running out of medications… which can potentially lead to health problems and complications.
* Some family members and relatives may not be available to help you due to their work and other responsibilities; consider asking them to contribute financially, if you hire a paid caregiver to help you with some tasks. You can also ask for compensation for a family member or relative that is providing most of the caregiving work.
* You can hire your own paid caregiver directly or get one from a professional in-home care agency. (S)he can help with running errands, shopping for groceries, meal preparation and light housework as well as hands-on personal care and companionship; (s)he can also help take your loved ones to appointments when you’re not available.
* Get help from health professionals as needed. If your loved ones have safety issues at home associated with increased weakness, unsteady gait, vision problems, confusion, memory problems or some other health issues, inform their physician. You need a doctor’s order to initiate home healthcare services; this service is usually covered by their health insurance. A registered nurse will visit and assess your loved one’s health; (s)he will make some recommendations about services that need to be provided, such as, a physical therapist, occupational therapist, social worker, dietitian, home health aide and/or a speech therapist (for memory and cognitive issues). A case manager will be assigned to manage and coordinate the services of the team of health professionals.
Instead of guessing what your loved ones will need to be safe at home, the team of health professionals will evaluate their situation and give their specific recommendations to improve their safety. They will teach your loved ones and provide training for your caregiving team as needed. If there are financial issues that can get in the way of getting equipment or home modifications to improve safety, the social worker can help you connect with community resources that can provide some financial help.
Caring for Yourself While Caring For Others
* Manage your own expectations. Be kind to yourself and accept your limitations. Let go of any guilt that you’re not doing everything perfectly. There are only 24 hours in a day and there will always be way too much to do as a caregiver. You can never catch up or avoid changes. You can only do so much. So, forget about trying to achieve perfection for anything you do as a caregiver. That’s too hard and that’s not sustainable.
Just focus on doing your caregiving tasks and responsibilities as well as you can. Instead of trying to achieve the gold standard, achieving good enough can be good enough. It’s okay to drop the ball from time to time. Just do your best and forget the rest.
* Manage your stress. Life as a caregiver can be stressful as well as physically and emotionally demanding. Take breaks from caregiving as often as you can. Make time for get-togethers and phone calls with supportive people in your life. Make time for exercise, yoga and other activities that can boost your health and lower your stress.
Chrоnіс ѕtrеѕѕ саn mаkе уоu ѕісk — іt саn еvеn kіll уоu. If you’re often ѕtrеѕѕеd оut, you саn еnd uр wіth dесrеаѕеd іmmunіtу, еxсеѕѕ аbdоmіnаl fаt оr еvеn оbеѕіtу, рооr соnсеntrаtіоn аnd mеmоrу as wеll аѕ dіffісultу ѕlееріng. Chrоnіс ѕtrеѕѕ саn іnсrеаѕе уоur rіѕk fоr hуреrtеnѕіоn, hеаrt dіѕеаѕе аnd оthеr dіѕеаѕеѕ. In turn, thіѕ саn іnсrеаѕе уоur rіѕk for a ѕtrоkе аnd hеаrt аttасk аѕ wеll аѕ сhаngе thе оutсоmе оf саnсеr аnd оthеr іllnеѕѕеѕ.
* You need to nurture and take good care of yourself. Some caregivers have trouble doing this because they think it’s selfish, but it’s really not. It’s the smart and practical thing to do. You can’t keep helping others when you’re physically, mentally and emotionally depleted. Try to arrange for respite care or help from other members of your support team; so, you can take caregiving breaks on a regular basis.
You need to schedule “me” time because it won’t present itself automatically. Schedule family activities and time with friends; make time for exercise, a massage, golf, tennis or some other sports. Do something that re-charges your energy and fills you up.
Caregivers nurture and help so many people. But, they’re terrible when it comes to taking care of themselves. Try this exercise: make a list of the most important people in your life. Did you put yourself on top of that list? Did you even make it on the list?
Caregivers’ lives are filled with so many obligations to their family and work. At some point, you can just end up “running on empty.” If you go too long without taking a break from caregiving and other stress-causing situations, life can become sheer drudgery.
When you don’t take good care of yourself, you are not just hurting yourself — you’re going to end up hurting your loved ones, too. If you’re too sick to perform your caregiving and other responsibilities, who will care for your loved ones? What happens if you’re gone? Who will help your loved one who is depending on you.
* Do not internalize unfair criticisms and unreasonable expectations from other family members and relatives – especially if they’re not helping you in any way with your caregiving responsibilities. Obviously, they do not have a clue as to everything that you’re doing to help and care for your loved ones. In terms of unfair criticisms or nasty comments from anyone, you just need to recognize and put garbage in the trash.
* Family caregiving can affect your employment and your personal finances. You might need more time off from work and cut back on hours because you need more time for caregiving. In addition to decreasing your income, you may also increase your expenses if you have to pay for some medications, supplies and other things needed by your loved ones.
Find out if your workplace will accommodate your situation. Your employer may be flexible. (S)he may allow you to work from home part-time or allow you adjust your schedule.
Consult with human resources if you are covered by the Family and Medical Leave Act. Be aware that providing care for your parent, spouse or child is covered. However, providing care for any sibling or other relative is not covered. You may need to consider taking a personal leave of absence without pay, if you can afford to do it.
Planning for the Future and Preparing for the End
Even if you’re just starting out or if you’ve been caregiving for a while, you need to discuss the future and prepare for the end. As much as possible, plan for the bigger picture: determine future care needs as your loved one’s health declines more and more.
Tomorrow isn’t promised…
Devastating health changes and decline can happen rapidly. No one knows exactly when the end will come — it can happen suddenly. When I thought my mom was finally getting better and more stable from her breast cancer and dementia, I thought it was a time to move her back to Southern California; so, she would be closer to her friends and they could get together more often for fun and laughter.
I was also going to move with her. I also found a nice place for me near my brother’s sub-acute hospital. Since my mom was finally more stable, I thought I could finally focus on helping my brother with his rehabilitation.
But, it wasn’t meant to be….
Less than three weeks after I found the ideal place for my mom — with a garden that she would have loved — her life unexpectedly and suddenly ended from a heart attack.
Sadly, my loving mom passed away in February 2012. A couple of weeks after her funeral, my beloved bother passed away in March 2012.
Life is always way too short…
It was devastating to lose both my mom and my brother in about three weeks. After they passed away, I felt such a deep sense of gratitude that I had the chance to serve them one last time by being their primary caregiver.
Time with our loved ones is never enough, but I was grateful for everything we shared and all of our memories.
Cherish every moment you spend with people you love. Every day is a gift.