Caregiving for my 92-year-old grandmother in the last year of her life was one of the hardest things I have ever done. She had reached a point in her dementia where someone had to be with her every hour of every day. I was lucky that my mother, my aunt, my uncle, and I all shared the workload. However, they all had full-time jobs, and I was unemployed at that time. So, we agreed that I would stay with her during the day most of the time, my mother would be with her much of the nights, and the others would fill in as they could.
What made it so difficult? Well, watching someone who had been so full of life and love disappear slowly before my eyes was a huge part of it. But also, the little things that added up. We had to keep a rigid routine of when and in what order things were done. A predictable routine helped her know what to expect as much as possible, kept a sense of order, and reduced her anxiety and agitation. But, for me that same routine made my days blend until I lost all sense of time. I felt like I was living in a horrible remake of Bill Murray's Groundhog Day. I lost touch with friends because I didn't have the time or energy to communicate with others who couldn't understand what I was going through. I gained weight from emotional eating and not doing anything else but sitting around all day. I wasn't sleeping well, I became depressed, and even with my family around me, I felt lonely and all alone.
I knew what I was in for, knew the tips and tricks, knew how to take care of someone with Dementia, and still it felt like a daily battle with myself to get up and do it all again even though I was taking care of someone I loved very much. In the time since my grandmother's death, I have learned even more about ways to make caregiving easier on the caregiver. I am here to share what I learned to help you in coping with taking care of your loved one.
A- Ask for Help: Admitting we need help is often hard. About half of all caregivers get no help at all from other family members. So, if someone does offer help, TAKE IT!! Don't say "Oh, I'm fine. I don't need anything." If there are family members who can help, ask them to pitch in, and don't take "NO" for an answer. Everyone is busy and everyone has important things to do. But taking care of someone is more than one person can do alone. If you don't have other family members, ask friends or neighbors for small things like sitting with your loved one for an hour while you run errands or take a break and do something just for you. Or hire an in-home care agency to assist with care.
B- Bed Alarm: If your loved one is at higher risk of falls or has memory issues and tends to wander or get up in the middle of the night, a bed alarm gives you the peace of mind to sleep more soundly. A motion-sensor or pressure-sensitive pad placed under the shoulders or hips that alerts you when your loved one tries to get out of bed. There are many different brands and features available, such as wireless, Bluetooth that sends alerts to your phone, and tamperproof settings. Bed Alarms can be bought at pharmacies, online retailers, and some big box stores. Prices vary among brands and depend on the features, but average between $50-$150, and some insurance companies may cover the cost. But, even if they don't, the price is worth it to have the extra layer of safety in my opinion.
C- Cherish the time you have with your loved one: It's easy to get caught in the rut of daily to-dos, only checking off things you need to do for your loved one. Ok, they're dressed, fed, meds are given.... Don't forget to engage with them on a personal level. Even when my grandmother couldn't remember who I was, I still took time to nurture my relationship with her. She always loved birds, so we put a bird feeder outside the window she sat by every day. I would sit beside her and name the birds we saw and talk to her about them. I would read to her because she could no longer read for herself. Even through my depression, I made sure to find ways to connect with her. Those memories make me smile now looking back.
D- Delivery Services: Today almost every store or service offers delivery. Make your life easier and use it. Have the pharmacy deliver medications to your home. Order groceries and other essentials and have them delivered. Even some libraries will deliver books you check out. Use delivery services as much as you can to save time and your sanity.
E- Essentials only: The list of things to do seems never-ending. Each day do only those things that absolutely must be done and let the rest go. You don't have to do it all at once. Break larger tasks into smaller, manageable segments. If cleaning the entire living room seems too much to tackle, then only pick up the clutter. Learn the fine art of "good enough".
F- Forgive Yourself: You are human. You've got human emotions, good and bad. You think human thoughts, good and bad. You're going to make mistakes, say things you probably shouldn't have. and have thoughts you REALLY shouldn't have. It's OK. Forgive yourself for bad days. bad thoughts. Everyone has them. Wipe the slate clean at the end of the day and wake up tomorrow to a fresh start.
G- Guilt: Let go of the guilt you feel. It's not selfish to do things for yourself. Your needs matter too. It's not bad to let someone else stay with your loved one. You don't have to be the one to do it all. Your thoughts and feelings are valid and important. Just don't let the negative ones take over.
H- Humor: There is truth in the saying "Laughter is the best medicine". Research has shown there are both physical and mental benefits when we laugh like reducing stress, improving the immune system, increasing pain tolerance, and easing anxiety and depression symptoms. So, find ways to add laughter into your day. You can watch a funny show or standup comedian, listen to a funny podcast, put funny memes or cartoons on the fridge or around the house, talk to a funny friend, or find the hilarity in your situation. (Pssst... Dark or Black humor is still humor)
I- Inhale: When we are stressed we tend to take short, shallow breaths. Taking a few moments to focus on breathing exercises each day is one of the easiest ways to combat stress and anxiety. Breathing exercises can be done anywhere from the car to the kitchen sink as you're doing the dishes. They can be done standing up, sitting down, or lying down.
There are many different techniques such as box breathing and pursed lip breathing. You can try different methods until you find one you like or do more than one.
J- Join a support group: Being a caregiver can be very isolating and make you feel alone. Talking to others who understand what you're dealing with and going through is very empowering. It's a safe place to talk about your emotions and situation with others who know how you feel and won’t judge or criticize you. To find a support group, you can ask your loved one's medical providers, look at non-profit organizations that advocate for your loved one's medical condition, or national organizations or institutes for specific diseases or medical conditions. There are also online support groups if you can't leave the house or if there are no local groups in your area.
K- Knowledge: Learn everything you can and need to know to be an effective Caregiver. Find out all you can about your loved one's disease or medical condition. Ask about the progression and prognosis. That way you know what is normal and can plan and prepare. Do you know how to properly lift or transfer someone so you don't injure yourself? If not, Learn. Do you know CPR? Again, if not, Learn. Is your loved one dealing with Alzheimer's or Dementia? Get the skills necessary to communicate with someone with a cognitive impairment. Search for classes or other educational resources from medical professionals, non-profits, online sources, and your local community resources.
L- Legal: It's not easy or fun to talk about, but you need to know all the legal issues involved in being a caregiver. Knowing that everything is in place will end one source of stress and anxiety. Make sure your name is added to your loved one's bank account so you can access funds, pay bills, and perform other financial tasks on their behalf. Ask about their wishes. What do they want for their final arrangements? Do they have any Advance Directives such as a living will or a Do Not Resuscitate order? Make sure you have a release of information on file at all doctors offices so they can discuss your loved one's care with you. Are all legal documents up to date like a will. power of attorney, or health care proxy. Talk to an attorney about your unique situation to see if there are other issues needing arrangement.
M- Music: Research has shown that music can have a considerable effect on emotions and physical state of the body. Upbeat songs and lyrics can make you feel more positive and optimistic. Fast tempos can make you feel energized, alert, and concentrate better. Slow tempo songs can relax your muscles, calm your mind, and bring a sense of peace and tranquility. Music can change your mood in under 15 minutes. (Lambert) So, whether you need to relax or get a pick me up try listening to your favorite tunes.
N- No: It's OK to say it. You have a lot to do. While seeing friends, family, and coworkers may be good for you, sometimes you just don't have the time (or the desire) to get together. It can be uncomfortable to say "no", but setting boundaries is important to your self-care. You also don't need to give an answer immediately. Learn to say you'll get back to them in a set time period. Doing so will give you time to figure out if you really want to do it or not and research options on both sides of the decision. And remember, "No" is a complete sentence. You don't need to explain or rationalize your decision to anyone.
O- Organize: If you are not an organized person, you need to learn to be as a caregiver. Keeping track of appointments, medications, important papers, and other information is imperative in caring for another person. Make copies of insurance cards and other important documents and keep them together in a folder or other organizer. This way you will have information at your fingertips and you won't have to hunt to find it. Use a calendar or day planner to keep track of doctor or other appointments. Make it a habit to look at your calendar at the beginning of each week and in the morning of each day. It is really easy for things to slip our minds when we're stressed. Knowing what the week holds will also allow you to set up a generalized plan for the week as well.
P- Plans: Know that no matter what plans you make, nothing will go as you expect. So even though you make plans, plan for chaos.
Q- Quiet: Take time to purposefully sit in silence for at least ten minutes at some point each day. During this time you can meditate, pray, daydream, or just sit and do absolutely nothing. You can do this in the morning over coffee or at night before bed. You can savor the sunshine or delight in the dark. Whenever, where ever, or however you choose to do so the quietness around you will help to quiet your mind, relax you, and reduce stress.
R- Respite: Caregiving is often a 24/7 job and just like any job, sometimes you need a vacation. There are many types of respite. Having a friend or neighbor come sit with your loved one is respite. Hiring someone to come to your house and stay for a few hours or a few days is respite. Utilizing Adult Day Care centers is respite. Some agencies take your loved one out of the home for a few days for respite. There may be funds available through your Area Agency on Aging or other organizations in your community such as faith-based or disease-specific organizations that can help you to get the break you need. It won't feel comfortable at first. You might feel guilty at having fun when your loved one is stuck at home, worry about something bad happening while you're not there, or feel like no one else can care for them as well as you can. But taking time for yourself to be with friends, do something you enjoy, or simply taking a nap uninterrupted is essential for your well-being.
S- Simplify and take Shortcuts: Make fewer trips by grouping errands or medical
appointments on the same day or by proximity to each other when possible. Is the lab near the hair salon? Get the blood drawn on the same day as a scheduled haircut. So you knock out two tasks on the same outing. This helps especially if your loved one has limited mobility and going out is difficult for them. Set up automatic bill payments so you never forget to pay on time. When cooking meals, cook a double batch and freeze half so at a later date all you have to do is thaw and reheat. This is a lifesaver on days you don't have time to cook. Break out your trusty crockpot and throw ingredients inside in the morning to have a meal done by dinnertime. Anything you can do to save time or energy is a huge help when caregiving.
T- Talk: Talk to someone other than your loved one at least once a day. Make time to talk to other family and friends, even if they don't understand how your feeling. Talk about things other than your caregiving as well. You need to hear the gossip, talk about the silly stuff, and hear what other people are doing. It's important both as a distraction and to ensure you still feel connected to the world around you.
U-Use community resources" There are many local and national organizations that provide all kind of help for seniors, people with illness or injury, and caregivers. Use them as much as possible, that's why they exist. Don't know what's available? Search for recourses on eldercare.acl.gov, nia.nih.gov/health/caregiving, or caregiving.com which are a handful among many online resources. Also your local Area on Aging, public library, churches, senior centers, and local or national non-profits such as Alzheimer's Association and National Alliance for Caregiving are great places to find out what help is accessible in your area.
V- Visitors: It is important for both you and your loved one to have visitors to keep you company and social. However, make sure visitors call first and schedule a time to come and don't just show up unannounced. If your loved one is having a bad day, an unplanned visitor may be more of a hinderance than a help to them. Or if your loved one is sleeping, you don't want a visitor to wake them from a needed rest. Knowing when someone is coming will also allow you to plan other daily tasks and activities so a visitor doesn't interrupt.
W- Watch for Signs of Caregiver Burnout: Caregiver Burnout is emotional exhaustion that results from failing, wearing out, or feeling totally used up due to too many demands on one’s energy, strength, or resources.(Hopkins) Signs you may be experiencing burnout include:
Physical exhaustion and low energy
Sleep issues or changes in sleep patterns
Rapid changes in appetite and/or weight
Loss of interest in activities you enjoy
Feelings of being trapped or having no freedom
Depression
Anxiety
Loss of concentration
Chronic headaches, stomachaches, or body aches
Getting sick more often
Being unusually impatient, irritable, argumentative, frustrated, or angry
Withdrawal from friends and family. Isolating yourself
X- eXercise: Find time and ways to incorporate exercise into your daily routine. Walk around the outside of the house when you go out to get the mail. While you brush your teeth, do some squats or leg lifts. While standing at the counter doing dishes or cooking, do some calf stretches. There are many small ways to sneak some exercise into your day.
Y- You: You need to take care of your health during caregiving and not neglect it. Eat nutritious food, see your doctor/s, go to the dentist, and get any other healthcare you need.
There is a reason so many caregivers end up in the hospital themselves while taking care of someone else. It's because they neglect their own health. Don't let it be you.
Z- Zzzzz...:Getting a full 7-8 hours of sleep may be impossible as a caregiver, but try to get as close to it as you can. Also take the same advice given to new parents and sleep when the baby (your loved one) is asleep. If your loved one is resting during the day, take a short nap as well. The dishes, laundry, or other task will wait. Taking care of yourself is more important.
I hope some or all of these tips help make the wonderful job you're doing in taking care of your loved one a little easier for you. If you still need more help or are ready for a respite break, Absolute Best Care Home Solutions' amazing staff is ready to assist. Click the button below to start the process.
Sources:
Lambert, Helena. “How Many Minutes of Music to Listen to If You Want to Cheer up, According to Researchers.” The Telegraph, Telegraph Media Group, 4 Mar. 2023, www.telegraph.co.uk/news/2023/03/04/music-takes-nine-minutes-make-happy/#:~:text=The%20British%20Academy%20of%20Sound,achieve%2C%20at%20just%20nine%20minutes.
“Causes and Symptoms of Caregiver Burnout.” Www.hopkinsmedicine.org, www.hopkinsmedicine.org/about/community-health/johns-hopkins-bayview/services/called-to-care/causes-symptoms-caregiver-burnout#:~:text=Causes%20of%20caregiver%20burnout%20may.
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