Sally, a caregiver for her grandmother with dementia, covers quality-of-life topics for families coping with aging-related health concerns.
If you're a caregiver for someone with dementia, one of the most important things you can do for your loved one is take care of yourself. I recently became a caregiver for my grandmother, who has dementia. It wasn't a role either of us had prepared for, and so we found ourselves learning as we go. I'm not sure I'll ever feel like I've fully mastered this role—I'm learning something new every day—but I hope that by writing about some things I've found work for me, I can help others in the same position benefit as well.
If you have any tips that have helped you ease caregiver stress, I invite you to leave a comment at the end.
Educate yourself about dementia. The first thing you need to do in looking after someone with dementia is to educate yourself about the condition. This list of tips on how to take care of yourself doesn't go into specifics about dementia or its signs, symptoms and causes. Rather, it explores general ideas on what you can do to manage your stress. Many of the tips could also apply to someone caring for a loved one with cancer or other serious health conditions. If you have questions about specific health needs, always talk to your family doctor or other members of the care team looking after your loved one.
Reach out to people you can trust. There will be times when caring for a loved one with dementia will push you to the limits of your patience. There will be frustrating days when your innermost thoughts about the person you're caring for feel unkind and uncharitable. That’s why you need someone you can trust who will not judge you as you talk about how angry, anxious and worried living with someone with dementia is making you feel.
Dealing with dementia involves complex family issues and so it’s important that the person you're opening up to can keep your concerns confidential. Talking with someone outside of your family can feel like you're being disloyal, but sharing with a trusted friend can support your well-being.
One of the things that I find helpful in making sure I strike a balance between my role as a caregiver and my need to stay connected with my social circle was to establish a standing coffee date every two weeks with my two dearest friends. Instead of delaying time spent with friends until my stress levels are off the charts, I always have something to look forward to.
Know what your rights are as a caregiver. In many countries, governments are starting to recognize how challenging eldercare can be, especially for the sandwich generation—adults who are simultaneously caring for their own young children and looking after a relative with dementia. Find out what respite options are available to you and if there are any employment laws that will help protect your job if you must take leave to care for a loved one. Your employer may have some employee assistance programs available that can provide emotional support such as counselling.
Laugh a little. You may not be able to find anything amusing about the very difficult job of caring for someone with dementia. And that’s OK. Sometimes the advice from well-meaning people to just laugh at the situation can seem flippant, especially if you feel like other people don’t understand how hard your job is. But you do need to seek out sources of humor. Watching reruns of a favorite sitcom, downloading a funny podcast, or reading a humorous celebrity biography can help bring back the laughter in your life. Why not sign-up for daily humor digests that send jokes to your inbox or follow some funny folks on Twitter?
Create routines for yourself that are all about you, and only you. One of the most challenging things about dementia is that things can change from day to day, moment to moment. A day that starts out relatively calm can turn into one filled with worry as the loved one's dementia creates confusion and chaos for you and for her. That's why it's important for you to maintain your own routines and to-do lists that you can exercise some control over. Don't feel guilty about setting boundaries around your personal time.
Make time to enjoy favorite hobbies and pastimes.
Don't set aside your own healthcare needs. As a caregiver, you'll likely spend much time in various healthcare centers, from your loved one's doctor's office to hospital emergency rooms to hearing aid clinics. It will feel like you're constantly dealing with one medical professional or another. But no matter how fed up you get with sitting in waiting room after waiting room, don't let that aversion keep you from attending to your own medical needs. Make sure that you have regular medical and dental check-ups. Get your eyes tested too and keep your eyeglass prescription up to date. Wearing outdated prescription eyeglasses can lead to headaches caused by eye strain. Unchecked tooth decay or dental disease can lead to painful visits to the dentist later on. Be proactive in taking care of yourself.
Eat well, get plenty of sleep, and find time to exercise. Under ideal circumstances, everyone should be striving to eat a balanced diet and engage in regular physical fitness. When you're caregiving for someone with dementia, looking after your own health is especially important. If you're struggling to find time to exercise, start small and simply ask a friend to join you for a brisk walk every week. Your heart will get a workout and you'll get to have heart-to-heart talks with a trusted friend!
Walk off the stress
Simplify your life and take advantage of modern-day conveniences whenever you can. If you're a caregiver and you haven't signed up for grocery home delivery, what are you waiting for? Many food stores now offer same-day or next-day delivery for online grocery orders. By signing up for this handy service I saved myself two to three hours a week. No more driving to the store, pushing a cart around, waiting in line, lugging my groceries to my car, then into my grandmother's house. The delivery fee was relatively cheap compared to what I was expending in time and energy to make sure there was always plenty of nutritious food available. Instead of having to arrange care for my grandmother if I went to the store, we could spend that time together doing crafts, listening to old time music, and talking about cherished family photos.
Manage your expectations. One of the reasons people get stressed out is that they feel like they can’t possibly live up to the expectations (real or imagined) they put on themselves. An important part of caring for yourself is to give yourself a break. Does it really matter if your loved one ends up wearing mismatched socks, even though every other part of the outfit you’ve managed to have them put on is presentable? If you can’t make home-cooked food every night of the week and you end up buying ready-made meals once is awhile, does that mean you have failed as a caregiver? Of course not! No one is perfect. And few of us have saintly personalities that allow us to be gracious and kind and generous 24 hours a day, especially in trying circumstances.
Create a circle of support
Asking for help from friends, neighbors and healthcare professionals is essential to reducing your stress levels. I've always had trouble asking for help. But when I took a pragmatic approach to getting things done, I was able to separate my ego from the list of important tasks I knew deep down I needed help with.
Sit down and create a list of things, big and small, that your friends could help you with. Then think about who you can count on to help you each item. One friend may not be able to take your loved one to an appointment but perhaps she is a fabulous baker who could bring homemade cookies and tea to your Mum while you run errands. You'll find that most of your friends and family do want to support you; they just need a little guidance and direction on what would be most helpful for you.
Put things into perspective, one day at a time. Focus on all the things that went well during the day, rather than ruminating on all the things that didn't turn out the way you wanted them to. This goes back to managing your expectations and putting things into perspective. Sometimes, at the end of the day all you can be glad about is that your loved one stayed safe, they ate well, and they enjoyed a bit of companionship.
Statistics: 2017 Alzheimer's Disease Facts and Figures, Alzheimer's Association
This content is accurate and true to the best of the author’s knowledge and is not meant to substitute for formal and individualized advice from a qualified professional.
© 2018 Sally Hayes
Sally Hayes (author) on April 08, 2018:
Thank you for sharing your story, Larry. It's so easy to feel alone when we are caring for an elderly parent with dementia. There are days when I feel like no one could possibly understand what it is like so when other people reach out and talk about their experiences, it's a gentle reminder that we're all just doing the best we can in a difficult situation. Take care, and thanks again for sharing..
Larry W Fish from Raleigh on April 08, 2018:
I wish I had this article to read about 8 years ago, Sally. My mother got dementia and I was totally unprepared as to what was happening. I attributed much of it to old age. Mom went downhill so fast in a matter of months. The stress on me was something that I will never forget. Mom finally just gave up on life, she refused to eat and I was at wits end. She wouldn't use her walker and fell down and dislocated her hip which was replaced years before. She was 92 and the doctors wanted to operate on the hip. She was 92, refusing to eat, had given up on life. My brother and I had to make the decision not to have the operation done. OMG, to this day I keep wondering what more could I have done. She went from the hospital to a nursing home and only lived ten more days. It was the worst time of my life. I hope your article helps other people, Sally.