Work Now to Improve Your Life Later

I’ve said it before, and I’ll say it again, being a caregiver is hard. So work now to improve your life later. Just like wildlife prepare for winter, you can prepare yourself for what might otherwise be a long dark season. Sounds ominous, I know, but it doesn’t have to be.

Caregiving is typically progressive. It can accelerate rapidly or slowly in fits and spurts.  Don’t wait until you are

struggling against the harsh winds of this new or increased responsibility. Put on your parka and mukluks now so that you can walk into spring as your best self for you and your loved one.

Acceptance

I wouldn’t have thought being a caregiver was this hard until I finally recognized that I am one. That came long after actually doing it. And how odd this is since I watched my mother for most of my life take care of my dad in a 20-year Cancer/COPD battle and a sister with down syndrome for 52 years.

It was family, after all, and something she did gracefully as a way of life. Maybe that’s why it took me so long to connect the dots.

So, one who isn’t a caregiver might ask how hard could it be?

Caregivers encounter many things and enjoy many gains in serving others in this way. That’s not what we’re talking about today. Here, we’ll explore some of the challenges of caregiving and attempt to offer simple steps for preventing and coping with them, as well.

Spoiler alert: I said simple, not easy. Some of this is heavy, but you can do more than survive it by accepting the challenges and rising to the occasion.

 Burn Out

Caregiver burnout is a state of physical, emotional, and mental exhaustion. It may be accompanied by a change in attitude, from positive and caring to negative and unconcerned. Burnout can occur when caregivers don’t get the help they need, or if they try to do more than they are able, physically or financially.

Many caregivers also feel guilty if they spend time on themselves rather than on their ill or elderly loved ones. Caregivers who are “burned out” may experience fatigue, stress, anxiety, and depression.

– Cleveland Clinic Health Library, reviewed on 01/13/2019

Fatigue, both mental and physical. It covers me from head to heart some days. Some call it caregiver burn out.

If you have small children or are raising them now, you’ll know what I mean. They need help with (or you do for them) dressing, eating, going up and down the stairs, finding things, putting things away. It’s and general care and feeding. Now, think of doing all the same stuff for a small adult, indefinitely.

There are lots of questions, tears, and fears. And very little sleeping through the night. Don’t forget the laundry, shopping, driving, entertaining, meds, and medical decisions, all of which is the caregiver’s responsibility. You get it.

For me, the almost constant state of fatigue has a lot to do with the ongoing sleep interruptions. I can’t tell you the last time I had more than four hours of uninterrupted sleep, and it shows on more than my face. There’s a lack of concentration, an inability to focus, general irritability, and zero desire to do pretty much anything.

Guilt

Of course, there’s the guilt we carry for feeling the way we feel. I still haven’t completely unpacked this one yet. I’m feeling too guilty.

Feelings of guilt cause many caregivers to delay much-needed respite and fun activities leading to long-term consequences.  Guilt, resentment, and bitterness aren’t fun to carry around. They are bulky and uncomfortable.

You never think you’ve done enough, or enough right, or you don’t want to do another thing today, and you’re mad about all of it. It’s not pretty, but it’s true for many caregivers.

Should health or memory issues escalate, you might be faced with moving your loved one into a nursing home. If my mom or sister went into one, the caregiving wouldn’t stop. I think it would be even more challenging being wrapped in a heavy blanket of guilt. I dread this season and pray it won’t happen for either of them.

Anticipatory Grief

Then there is grief. You might think my person is living. Why are we talking about grief? That comes later, right?

Some days I feel like I have nothing to look forward to, especially when I realize that the only way this ends is through loss and grief. Try wrapping your mind around that one and moving on with your day.

“Grief does not wait for death to happen; it occurs both in anticipation of and following a loss. Extended illness, disability, severe accidental injury, a terminal diagnosis or the aging and decline of an elderly family member can produce what is known as anticipatory grief and mourning. We find ourselves reacting and continually adapting not only to an expected loss, but to all the losses – past, present, and future – that are encountered in that experience.

–Marty Tousley, RN, MS, FT, DCC

I miss my mom already. And I wonder why I can’t slow down long enough to find a way to spend more time with her while I still have her. There’s always a “next thing” to do, and it seems that’s what I choose to do instead. I don’t understand why I allow distractions to take me away from her.

Someday, I’ll regret doing that thing instead of sitting and talking with her, and tenderly holding her hand.

I miss my life. What it was, what it can’t be today, or maybe never will. My life wasn’t a whirlwind of excitement before, but it was mine. With only one adult child left at home, my husband enjoyed more freedom with our time and how we spent it. Now, it seems like I’m watching it pass in front of us, like a parade that we can’t join in.

I miss friends, family, and the things I enjoyed doing. Things like taking walks, going for bike rides with my husband, getting away for a vacation, lunch with friends, facilitating bible study at church. They don’t happen very much anymore, if at all.

Isolation can become a part of the caregiver’s life (not yours, I hope). Friends love you, but they may not wait for you. Your loved one’s needs often take precedence over your own, leaving you mentally and physically unavailable for others.

The unhappy truth I’m avoiding here is that for many caregivers, the only way it ends is when someone leaves. Grief, then, is no longer anticipated but present in a different form.

Knowing You Are Not Alone

For a while, I thought I was the only one who felt this way. I’m not.

There are more caregivers today than probably ever before. A 2020 study from the National Alliance for Caregiving and AARP, 2020 reveals an increase in the number of family caregivers in the United States of 9.5 million from 2015 to 2020.” 

That’s 53 million today, give or take, up from 43.5 million in 2015.

Okay, that’s enough heavy lifting for today. Remember, I warned you. But that’s why we can’t stay out in the cold for too long, nor can we hibernate and expect to survive caregiving without actively and continuously preparing for it.

Preparing for Winter

I’m starting to look at this current state as a long cold winter—one to prepare for, but not fear.

I want to emerge as my best self before I lose myself altogether. So, I’m stocking up now to keep myself fed and warm during what could be increasingly darker days ahead. But they don’t have to be. Try stocking up on knowledge and encouragement instead.

Here are a few things I’m putting in my pantry this season:

• Consider taking a course on caregiving. My brother and I took one on caregiver self-care together. There are many resources available. Your local Area on Aging is an excellent place to start.
• Don’t miss your check-ups. It’s up to you to protect your mental, emotional, spiritual, and physical wellbeing. Be mindful of it. The same study conducted by the National Alliance for Caregiving and AARP also revealed that family caregivers are in worse health today than five years ago.
• Get some rest. Work a nap into your schedule. Hire a back-up caregiver to be with your person, or take them out, or do some of the chores so that you can recover.
• Ask for help. I repeat this often–don’t be afraid or too proud to ask for help. Everyone needs help from time to time. Ok, you’re special, but not so special that you can do this alone. Create a network of support so that you can live a full life now. It’s not easy, so get started now.
• Spend time in your Bible and try memorizing scripture. In doing so, your focus shifts from self (or your loved one) to Christ, who I believe is the real source of our strength. Having a memory library of meaningful verses primes a reserve for the challenging days ahead because they are coming.
• Trust God. He wouldn’t have given us this role without also equipping us to do it. I know it sounds trite, but it’s true. There will be days you don’t think you can’t do it anymore. But you really can. Trusting God keeps your heart-fire burning and shines a light on your next step, in love.
• Develop new healthy coping skills and keep working at it until you find what works.

If you are not a Christian and you don’t have a bible, try finding something positive that feeds your soul, energizes your being, and takes the focus off you. That could be exercise, a hobby, or a support group. But I don’t know anything more compelling than Jesus. Why not give Him a try?

Spring is coming

The good part about this is that I don’t have to worry about my sister’s safety. We have a network in place. It’s small but more than capable and selflessly willing. And despite the Alzheimer’s and Down Syndrome, she is still relatively healthy.  Mom at 92 ¾’s, who still lives in her own apartment, is too. And we are so grateful for that!

There are many more caregiver challenges that I haven’t mentioned here. But I think caregiving’s effects on our minds and bodies are relative to our capacity to cope with those challenges. Try to find a balance that you can live with today. Work now to improve your life in the future, because you have one to look forward to.

Be your best self for yourself, for those you care for, and those who love you.

I offer this information to support new and future caregivers. Caregiving crept up on me, and I didn’t think to seek information until others saw me struggling. I don’t want that for you, friend. There is a wealth of resources at your fingertips, so take off your mittens and start Googling.

A Few Important Things to Remember

• Identify anticipatory grief where it exists and take steps to relieve it in healthy ways.
• Prevent overwhelming fatigue by taking good care of yourself first so you can care for your loved ones.
• Please don’t let guilt for things you can’t change weigh you down. It is a waste of your precious energy.
• Finally, don’t forget that spring always follows winter. Be ready to enjoy it.

If you are a caregiver or think you might be someday, please feel free to share your thoughts in the comments.

Take care, friends.

Head over to Inspire Me Mondays, where Anita Ojeda is doing a series on Caregiver self-care in honor of National Caregivers Month-November 2020.

You can find me there in this week’s linkup!

References:
https://www.opentohope.com/coping-as-you-anticipate-a-loss/
https://my.clevelandclinic.org/health/diseases/9225-caregiver-burnout
https://my.clevelandclinic.org/health/diseases/9225-caregiver-burnout/prevention
https://www.caregiver.org/caregiver-statistics-demographics National Alliance for Caregiving and AARP, 2015 Caregiving in the U.S. https://www.caregiving.org/caregiving-in-the-us-2020/
https://eldercare.acl.gov/Public/About/Aging_Network/AAA.aspx  For info on local Area on Aging organizations.

Photo Credits:
Featured image – https://unsplash.com/@cbrin
https://unsplash.com/@tevintrinh
https://unsplash.com/@noahsilliman
https://unsplash.com/@graysonsmith_photography
https://unsplash.com/@rayhennessy