Extreme caregiving roles, such as a young mother, caring for someone with a cognitive impairment, caring for someone with a mental illness, or as in my case, caring for my entire family, all who have a cognitive impairment, puts us in the role of firefighter.
We get so focused on the immediate needs of our loved one, (firefighters putting out fires), that we can't see any way to nurture ourselves. It feels like if we take a break from our situation that our care recipient might suffer more than we are willing to risk.
When we are in this kind of situation how do we get perspective?
Small simple changes make a significant change in your sense of overwhelm. During these times of isolation, there is also additional stress.
We tend to get in the depths of our own situation and can't seem to find a way to thrive in it.
If you go to the basics you can likely find something simple that could give you some connection to something bigger. I would like to guide you to finding what would personally work for you
This HALT acronym will help you figure out your personal self-fulfillment formula.
This acronym was created as an easy way to remember how to do a quick evaluation of areas that you might be neglecting in taking care of yourself.
H A L T
Hunger – more/less food, better nutrition, hydration
Anger – towards someone else or yourself
Lonely - isolated
Tired – sleepy
Expanded H A L T
Hunger – Are you hungry for personal space, mental stimulation, purpose, something new and exciting, and creativity?
Anger – Are you angry about your situation, your financial situation, lack of support, or the feeling that you don’t matter?
Lonely – Are you surrounded by people but lacking valuable/equal relationships and conversation, missing the feeling that you a contributing member of society?
Tired – Are you tired of your routine, or loss of motivation, lack of excitement and energy about life?
Write some of your needs down and brainstorm with a friend, partner, or therapist to figure out ways to meet these needs. If you don’t have anyone to brainstorm with you can call 211. Just dial 211 on your phone. You will reach someone in your county that can tell you of services in your area. You can also call aging services in your county, if either you or your care recipient is over the age of 55.
By using this technique I have come up with my own self-fulfillment formula.
Some examples are:
1. Some local libraries offer programs such as the "Readers Choice Nomination" program. You can be in a book club but you don’t have to go to any meetings. You can read about their suggested book online and make a choice. Most of these books are available as wither e-books or e-audio books. When you have finished, you vote for the book that you read. For every 5 books that you read and vote on, you get to choose a high-quality book to take home and keep. It also gives you a sense of connection to a group and purpose.
2. Most support groups welcome anyone and also offer online meetings. Consider support groups that are not under the umbrella of your specific disease. For instance, consider finding a support group for those with impaired cognitive function. What you find may not be the same as your loved one’s disease but it might apply if there are cognitive issues involved. I’ve heard it said that these are so important to caregivers and it makes such a difference in their lives that they do what they have to in order to be able to attend, such as hiring a caregiver to come in for a couple of hours a month.
3. There is also the blind library. The blind library is not just for the blind. Anyone with a disability that affects their reading, even their motivation to read, can participate in the blind library. Contact them and after they tell you the forms that you need filled out, they will ship everything to you and you don't have to go out of the house. They provide a tape player and books on tape. Technically they are for your care recipient but you can use it too.
4. Keeping your hands busy while sitting with their care recipient has helped many. Check out options such as making beautiful jewelry through a local bead store, hand-making quilt tops, knitting and crocheting. You can also order kits online to have delivered to your home. If you need help making it, either call the dealer or google instructions.
5. Eating nutritiously can make a big difference in your ability to function. Check out books like Cook Once: Eat All Week by Cassy Joy Garcia. https://www.amazon.com/Cook-Once-Eat-All-Week/dp/1628603437 or try out options for meal kit delivery services. They usually give you a great discount in the beginning just for trying them out.
6. Seeing a local therapist for mental health can make a big difference. Search for clinicians that specialize in Trauma, Cognitive Behavioral Health, living with chronic illness. Clinicians using EMDR (Eye Movement Desensitization and Reprocessing) can also be a great help. Online therapy is also an option.
7. There are programs that can assist you, whether with services, or financially. Reach out to your local faith group, or contact 211 to find resources. 211 is a program provided by United Way that will put you in touch with local resources.
8. Use your medical resources. Always update your specialists. Remember that if you don’t tell them what is going on, then they don’t know what you need.
9. Learn about Therapeutic Lies. Lies that reduce suffering and stress in patients unable to fully appreciate the cause of distress can be beneficial
We all need purpose in our lives, but it also needs to feed our souls. Being a caregiver is a very significant purpose but if it doesn't nurture you, then you need to add something to your life that will.
There is not enough awareness of DM and its cognitive effects. I am available for individual or group coaching. I am also available for giving speeches in professional settings to educate about this very misunderstood disorder. You can sign up for a 15 minute call to discuss my availability by going to myotonicdystrophycoach.com. I look forward to hearing from you.