Over the past few years with my grandma, a few things have become essential to my survival as her primary caregiver. In my last post, I listed the tangible items, things that I can physically hold or access through technology that have made my life easier.
In this post, I will focus on the intangible items that you can't just go out and buy at the store. These include good relationships and knowledge to make good decisions, which are things you have to invest time in searching for and building.
10) Safe person
A safe person is a person that will listen to your rants and problems non-judgmentally. You won’t have to worry about this person hotlining you did or making you feel bad for something you said. You never have to apologize or make excuses for something you did when you talk to this person. Your safe person validates your experience and feelings and never offers unsolicited personal experiences or advice.
9) Love substitute
A love substitute is a way of giving the affection and care that your caree needs when you have run out of love to give. As a general rule, I am not a super touchy feely person, so my love substitute comes in the form of Karen, Grandma’s daytime helper. She is always sweet and kind to Grandma. I know when my grandma is with her, that she is getting all the feels she needs. [The idea of a Love Substitute comes from The Caregiving Years, Six Stages to a Meaningful Journey – caregiving.com]
One of the best things you can do for yourself if you’re a younger caregiver like me is get you a Leo. Leo is one of my grandma’s closest friends and he is far closer to her in age than I am. Sometimes when I tell my grandma something (like we need to switch to online bill pay or to tear up mail from the Alliance for Retired Americans and the National Committee to Preserve Social Security and Medicare because they’re lobbyist groups only reaching in her pockets), she doesn’t believe me because I’m so young. So she consults with Leo to get the facts. And, since Leo has been around the block enough with us many times, he always calls me first before he touches base with Grandma to see what the appropriate response should be 😉
I don’t take offense to this, I just accept the fact that my grandma trusts Leo because he’s been there for her many times when she needed help, he is a man, and he is older. I just appreciate having him in our lives to advise us and back me up on important issues.
In order to help your caree have a good life, you have to have a vision of what that good life is. You also have to map out what that person doesn’t want in life so that you can be sure and take steps to avoid it. If you have just been thrust into a caregiving situation or it’s been a while since you spent time with your family member (both scenarios applied to me), you might need to both get on the same page about what that person’s good life looks like to them. When I became responsible for my grandma, I used the Charting the LifeCourse Life Trajectory Worksheet to help me list her vision for a good life and what she didn’t want.
You also have to have your own vision of your own good life, so that you can keep moving in that direction, even when it seems impossible under the everyday activities of caregiving and for when caregiving ends.
A good caregiver always has a plan. Not just a “Plan B” or an escape route (seriously though, always map out the quickest way out of the building in case of a colostomy nightmare or meltdown), although these are very important. I’m talking about a plan on how you are going to get to you and your caree’s good life.
I used the Charting the LifeCourse Life Trajectory Worksheet to help me plot the steps I needed to take to help my grandma get to the good life. I also created a trajectory for myself to remind me of the things I can be working on when I get free time to help me advance to my own good life.
5) Support System
Everyone needs a lineup of all stars and pitch-hitters. When you are a family caregiver, it is even more important for you to map out your supports, not only for your caree, but for yourself as well. To help me think through all of the resources and supports at my disposal, I used the Charting the LifeCourse Integrated Supports Star. I completed one for my grandma, and then I created a star for myself. By completing a star for my grandma, I was able to see who else there was to help me with her. By completing a star for myself, I have a list of help that I can reference any time I have a problem that I can’t manage on my own. Anytime we have a problem, we use the star to map out what supports we can access to help us solve it.
4) Knowledge of laws, rules, and policies related to health care, families and caregiving
At your job: Some employers offer caregiver support programs through employer sponsored insurance and have specific regulations around taking time off for caring for a family member. Get familiar with your employers general policies for taking time off as well.
In your state: Some (but not all) states have formal respite and family caregiver support programs. Do your research to find out what your family might be eligible for if and when you need help. All states have Area Agencies on Aging that are mandate to help older adults and their caregivers access the information and learn about local resources that can help them.
At the federal level: Educate yourself on FMLA (Family and Medical Leave Act). Learn about Medicare and/or Medicaid and what rights you have when they are your primary health coverage or funding any long term care. Medicare and Medicaid providers are required to follow certain rules. Learn about these rules so you can know when they’re not being followed and hold providers accountable. If you care for an older adult, make sure you’re aware of any policies that focus on aging Americans. If you care for a person with a disability, make sure you’re familiar with the Americans with Disabilities and Olmstead Act. Also learn about tax credits you or your caree may be eligible for to recoup costs of caregiving and long term care.
A few years ago, I used to take everything so seriously. I would bottle things up until I was literally sick or explode when something upset me to the point people were afraid of me.
My mom taught me about mindfulness, which is all about living in the moment. When you live in the moment, you are not stressing out the past (what you didn’t do, or what you did that wasn’t good enough) or freaking out about the future. I used to find myself so frozen with worry and guilt and grief that I couldn’t function. Now, I meet with my emotions face to face, accept them, learn from them, and move on.
Time is too precious to get angry, feel guilty, or stress out. Find the best strategies you can use when you feel like the world is turning upside down, whether it be meditation, naming things you are grateful for, playing your favorite song, or just pausing to look out your window for a while.
2) Routine (and flexibility for when you can’t follow your routine)
Having a routine will benefit both you and your caree. For a caregiver, it makes redundant, everyday activities much simpler and allows you to block your time so that you can get more done for you in your own life, and for your caree. For the caree, it provides comfort and stability when they can know what to expect. To learn more about our journey with establishing a routine, visit http://takingcareofgrandma.com/manic-monday-building-a-routine-for-your-sanity/
1) ME Time
Your routine should include time for yourself, which is why ME Time is its own line item in the list of intangibles in the survival kit.
The best way to figure out how to take a break is to see where other people or scheduled activities can take the place of the time you are spending providing care. For me, one of my regularly scheduled Me Time appointments takes place on Friday nights, when my grandma is at her Life Group. Fortunately for us, her Life Group leader comes to pick her up and drops her off each Friday night. When I get off work on Fridays, I can just go home. I don’t have to rush home so I can get out to her house. This weekly break has been a life saver for the past year and a half.
Another opportunity I get to take a break is on the third Thursday of the month, when she goes to Keenagers, a dinner for older folks, at her church. As long as I find someone to take her, I can relax for an evening. It is a beautiful thing.
What relationships and skills are in your survival kit? Who makes your life easier as a caregiver? I'd love to hear how you're getting by.