[7] Horizons: Self-Care

Dementia Horizons | Workshop 7 | Self-Care

Video Module 7 Transcript

According to the late former first lady of the United States and mental health advocate, Rosalyn Carter, there are only four kinds of people in the world: those who have been caregivers, those who are caregivers, those who will be caregivers, and those who will need caregivers. Caregiving can be a significant and enriching experience. It can stretch you in positive ways you did not know possible, and it takes energy and work. Caring for a loved one living with Dementia can also last for years.

Because of the changes in the brain, your loved one may show less concern or empathy for what you are going through. They may not recognize how hard you are trying. The part of the brain that regulates empathy may not function well, so you may not sense their concern or appreciation for all you do. As frustrating as it may be, the person living with Dementia is not necessarily making hurtful statements, personal attacks, or acting out of character on purpose. When there is a progressive cognitive syndrome like Dementia, more likely than not, many thoughts and actions are out of their control. The onus is on you to be proactive and create options for self-care.

Your physical and emotional health serve as tools of the trade to carry out your role as a care partner or caregiver. You can create intentional activities that bring you moments of peace or joy for your physical and mental health to be your best.

When this type of self-care is not in place, research indicates a higher risk of developing stress-related conditions such as high blood pressure, obesity, cognitive fogginess, and depression. Therefore, it takes routine maintenance and care of your body and soul. This isn't selfish. This self-care is crucial.

Imagine if you rarely change the oil in your car, neglected routine tuneups, or forgot to put gas in the tank. You could run on fumes for only a short while. The same analogy applies to you. We live in a society where independence and self-sufficiency are overrated and can be highly detrimental. When a caregiver feels as if they have to do everything for their loved one or believe they are the only person who can provide care, it is cause for alarm. It is not uncommon to have two patients instead of one. Keep in mind that you are human.

Although hard to hear and accept, the reality with Dementia is that despite your best efforts, there will be eventual cognitive and physical decline. You did not cause the Dementia to happen. You cannot control the underlying condition. You can learn how to respond differently, go with the flow and care for your loved one and yourself simultaneously.

Okay. I think it would be essential to start by having you write down all the activities that bring you comfort or joy. But before you get your pen out to make your personal list, consider the following list starters. Might you enjoy listening to Sinatra or Glen Campbell or maybe putting on the Beatles' classic "Let It Be" album or clapping your hands and singing out loud with a local gospel choir? How about reading a juicy romance novel or digging into a good biography? Maybe picking up a great magazine and reading about the latest fashions? Taking the dog out for a walk around a park or strolling along the lake or beach?

Doing some yoga exercises in the backyard? Stepping into the garden to tend to the soil, smell some flowers or pick some vegetables? Taking a break for spiritual renewal and contemplation? Having breakfast with old high school buddies or a girl's night out at a local hotspot? Getting some alone time with a soothing bubble bath, smooth jazz, and soft flickering candles?

Now, please pause this program and take five minutes to reflect and capture your comfortable or joyful activities. What did your list have on it? Was it long with 10 or 20 things you love to do, or short with one, maybe two or three?

Do all you can to keep this list visible as a tangible reminder, and schedule 30 to 60 minutes of "me time" daily. Before the time arrives when your loved one cannot be left alone unsupervised, enlist the help of neighbors, family, and friends. Now is the time to expand your circle of care and open up your umbrella of protection.

Another strategy is a quick self-evaluation to see if you show signs of compassion, fatigue, or burnout. Are you experiencing any of the following: increased irritability, sudden increase or decrease in weight, emotional numbing through alcohol, recreational drugs, or overdoing prescription drug use, lack of concentration, forgetfulness, or do you catch yourself saying, I'm losing it? Apathy, a simple numbness; you are easily triggered and lash out, unpredictable, emotional outbursts, headaches, shortness of breath, or tightness or pain in the chest or abdomen.

Please do not wait until you feel yourself drowning in stress or overwhelmed. If you are experiencing a pattern or upward trend in any of these feelings, behaviors, or physical manifestations, please talk to a health professional.

Another reason to take good care of yourself is that your loved one living with Dementia can pick up or absorb your irritability, annoyance, anger, et cetera, without saying a word. They will sense these feelings through your facial expressions, body language, and tone of voice. This, in turn, creates a scenario whereby they will be less engaged, cooperative, or trusting. Please know that it is normal to be a great caregiver, love the person you care for, and sometimes feel resentment, frustration, and anger. You are not a robot. Give yourself some slack when it becomes concerning, you feel these things more consistently and perhaps feel trapped or unable to shake these distressed emotions. Take time to care for yourself daily, as an essential plan to be a better care partner or caregiver.

Here's another self-care tip: Throughout the day, when you sense you are feeling more frustrated, try box breathing. Imagine seeing a box for the count of four. Take one, slow deep breath. As you move up one side of the box, hold your breath for a count of four. As you visualize moving across the top of the box, exhale for a count of four, as you move down the other side, and hold your exhale across the bottom of the box. Then repeat this pattern of breathing four times. Notice how you feel before and after. It's free, requires no pre-planning, and a tool that is available as needed.

Now, in conclusion, let us close this program by sharing a few lines from the caregiver Bill of Rights.

• I have the right to take care of myself. This is not an act of selfishness. It will allow me to take better care of my loved one.

• I have the right to seek help from others because I recognize the limits of my endurance and strength.

• I have the right to maintain facets of my life that do not include the person I care for, just as I would if they were healthy.

• I do everything I reasonably can for this person and have the right to do some things for myself. Self-care is not selfish.

• Start making a plan for yourself. This is a journey and not a race. Thank you for being with me today. I wish you peace and give you grace. Thank you again.