The Evolution of Caregiving

Note:  In additions to excerpts from my book, What to Do about Mama?  this post revolves around four recent entries from blogs that I follow.  For their full blog content, please see:

Caring for the Caregiver thecaregivergigdotme
The Memories Project
Mom  & Dad Care Weekend From Hell With Mommy Dearest
The Selfish Caregiver ON TURNING YOUR WORST MOMENT INTO YOUR FINEST HOUR 

I’ve got this image playing through my head of when I was a kid watching Tarzan on TV. Someone was always stepping into quicksand and getting sucked into the muck. Then somehow that person got a hold of a pistol to shoot down a vine—their lifeline out of the ominous mess. (I never have been able to walk through the woods without keeping an eye out for quicksand!) That is what caregiving feels like to me.  (WTDAM p. 2)

Initially, caregivers become involved because of their “can do” attitudes. 

 It’s all in the word: caregiving.  A caregiver gives of oneself to ensure that the person in need receives the support necessary to be safe, nurtured, and loved. Caregivers may feel a sense of responsibility or duty. They may want to show their appreciation to the care receiver and have a desire to “give back.”  And they often feel compelled to “fix” the problem—to maintain control over the situation. (WTDAM p. 83)

When the initial alarm sounds, caregivers are filled with worry—maybe even fear. They kick into action to find a solution that will make it “all better.” In the attempt to gain control of the situation they become “The Caregiver.” And things sometimes do get better, adjustments are made, and a new norm is established. (WTDAM p. 84)

I thought about the early stages of caregiving when I read the following on the “Caring for the Caregiver” blog.  Here is tcg4mom’s (abbreviated) post:

Acknowledge Your Greatness as a Caregiver!!!!!

Each stage of one’s life has its successes and rewards and it’s crucial to self-acknowledge one’s achievements, shout it from the rooftops if you want. It feels good!!!!  For example…here I am a little after 10am already home from Mom’s. I was there at 7am and between 7am and 9:30am, this is what I accomplished:

• Cleaned Mom’s Home B4 she got out of bed
• Changed her bedding
• Helped her shower
• Examined Mom from head to toe
• Massaged her feet and legs
• Set out clothes for the day
• Sat and talked about what we are grateful for this morning
• Prepared breakfast
• Washed and dried laundry
• In between, I did usual things…there are so many little details to maintaining Mom’s comfort
• Went shopping for my hubby and my meal for tonight and it will be mom’s dinner tomorrow night

This is why I wouldn’t bother having someone clean mom’s home or take care of her:  No one, absolutely NO one would see all of the details that need to be addressed. It’s all in the details on living a comfortable and safe life. I am so very happy I can do this for Mom and believe me, NO one is more grateful and appreciative than my Mom!!!! She continues to be a wonder…her intelligence, her kindness, her generosity, her love have never known any bounds.

I see a red flag waving!

 Typically caregivers think they can do it all, and sometimes they think they are the only ones who can. Beware of the faulty thinking: “It’s easier to do it myself.”   (WTDAM p. 83) 

TCG4MOM is “The Caregiver.”  She’s taking everything in hand, doing a great job, and Mom’s state-of-affairs is improving.  TCG4MOM states that she does not need, or even want, any help.   But, as I said in on p. 197 in WTDAM:

Caregivers: Beware of your care receiver wanting “only you” and the flipside of the coin—you feeling that you are the only one who can provide care. In the beginning of the caregiving arrangement, it may all be “easily” manageable. But you have to look ahead and realize that inevitably the care receiver will have changing and increasing needs. If you set a precedent at the beginning that other people will be involved, you will set limits on your loved one’s dependency.

Inevitably, there is another setback, or more probably, a new crisis. Caregivers may begin to realize that they just might need some help, and begin to call on those people they expect to provide that help—family. (There’s nothing like caregiving to learn about our families.) Caregivers also find out that maintaining control is really just a figment of the imagination; no one can control the process of aging. When they “fail,” they’re often consumed with guilt and are the first in line to either assume or assign blame. Then they realize that they really can’t do this anymore—at least not the way they’ve been doing it. If you are that caregiver, and don’t want lose yourself completely, you need to get help—especially when you acknowledge that this process can go on for years, and…

The only end is to lose your parent—Jillian (WTDAM p. 32)

As much as you think you can look dispassionately at the situation and develop realistic expectations, frankly, no one can imagine the scope of what he or she is getting into. How can you know the unknown?  (WTDAM p. 72)  Caregiving is fraught with a lack of control over both the situations that occur and the people involved. (WTDAM p. 32)

Be careful not to minimize your expectations of the extraordinarily difficult demands of caregiving. Realize that this is not a responsibility to be shouldered alone. (WTDAM p. 187)

Caregivers DO need to seek and accept help:

    Joy Johnston reinforces this concept on her blog, The Memories Project, with her comment:  No matter how tough you think you are, caregiver burnout is a real condition. Know the signs and don’t be afraid to ask for help! Joy was commenting on a Georgia Chapter Alzheimer’s Blog post, written by Theresa Bayman, Program Director Coastal Region. Excerpts follow:

• Recently, a member of one of my support groups (with whom I have become very close), reached her caregiver “breaking point.” Most, if not all caregivers, find themselves at this point at least once throughout their experience. This particular caregiver is a retired nurse – which you might think would give her a leg-up when it comes to care-giving for a loved one at home – but you’d be wrong about that.
• Caregivers are part nurse, part detective, part cook, scheduler, transporter, husband/wife/daughter/son, etc. In short – mostly superhero
• Meeting the ever-changing needs of a loved one with dementia requires continuous evolution of the caregiver(s) themselves.
• This caregiver came to me asking for help, saying “I can’t do this” but the truth of the matter is just that you can’t do it alone. Recognizing the need for help and support is the first step to becoming a truly successful caregiver.

“Caregiver burnout” sometimes escalates to “Crash and Burn” 

The big trip-up occurs when you discover that the realities do not meet your expectations and you begin to feel disappointment and frustration. When you are carrying so much burden on your shoulders as a caregiver (in addition to your other roles—such as spouse, parent, and/or employee)—and if you feel unappreciated, overwhelmed, and out of control, these emotions can turn into anger, resentment, and bitterness. These nasty feelings seem to eat away at you, like cancer, from the inside out.  (WTDAM p. 88) 

Butch blogs almost daily on Mom & Dad Care, and is a source for tons of good caregiving articles.  He has been a long-distance caregiver for both of his parents for a number of years.  His dad has now passed away, but his mother’s needs are escalating.  He travels 1,500 miles at least monthly to tend to his mother’s needs.

On July 2nd, Butch posted:  Weekend From Hell With Mommy Dearest

“This weekend, I had a total and complete parental caretaking breakdown. At the end of it, I sat sobbing in my car. My sister rescued me–for that I am grateful.  Monthly trips for 5 years finally caught up with me. This was the worst weekend since my dad died.  I need a break.

Cleaning the table was a disaster. Every piece of paper is like ripping a piece of gold from her. The tears flow and it’s like taking a part of her life that she used to have. No help matter how much I do I get grief and tears. One of the things we found on her kitchen table was my sister’s 30th surprise party invitation. I suggested it was time to get rid of it. “I guess memories don’t mean anything to you,” she said.

I lose a chunk of my life and a chunk of my heart every time I come down and still can’t believe she’s the one I’m left.  I give my mother everything I have.

I finally came to the realization that because my dad did everything from bill paying to opening mail, She didn’t do what I have taken on. Dad did. She doesn’t get it. It’s always been done FOR her. She has no idea the hours on the phone with providers, insurance companies, why lost pieces of paper are important. To her, it will be handled, without worrying about who’s handling it and what’s involved.

The last day, we argued because she needed to see every piece of paper, every envelope I discarded. She got up to walk away and fell backwards. Although fine, we were both stunned and I left.  “I can’t be here right now. I’ll be back, but I don’t know when,” I said, heading off to the airport. If those were my last words with her, I will be at peace with that. I have done absolutely everything that I can. I’ve given up parts of my life; I’ve given up time.

I’ve been walking on eggshells my entire life. I can’t do it anymore. My father taught me to do it, but I’m done with it. They only way I can be is direct, and she just can’t deal with that.

I can’t be there for a while. I’ll be back but I don’t know when. I just can’t be around her for a bit.

 Your original sense of empowerment has been replaced by depression and anxiety. Depending on how you interact with others—family in particular—and whether relationships become difficult or even toxic, you may feel distraught, devastated, or demoralized. You may even develop a fear of losing your emotions and becoming hardened through the process of steeling yourself against them. Feeling trapped, your mind fluctuates between imagining both the “relief” and the “grief” you anticipate feeling when your loved one passes. And that, of course, generates the mother of all negative emotions—guilt. As you become more and more tired and run down, you begin to experience physical repercussions, quite often serious.  (WTDAM p. 88)

At times, I have felt her suck the life right out of me.—June   (WTDAM p. 88)

 I hope that Butch is getting a much-needed break.  But from my experience, any time you “get away,” it is really hard to come back.

Caregiving:  Sometimes it helps you grow.

Laura, “The Selfish Caregiver,” recently reappeared after a lapse from March 12^th.  Her post, ON TURNING YOUR WORST MOMENT INTO YOUR FINEST HOUR, is a real day-brightener.  Some excerpts follow:

The day my mother died was the worst day I’ve ever known. But it ushered in what have since been my best years.  It feels wrong to say. That something so terrible could have such a positive effect. And I’d give it all up for her to have never been sick, to have not died at way too young an age.  But it’s the truth.

You see, ever since I was sixteen, I ebbed and flowed between various phases of grieving and anticipatory grief. My whole life was defined by sadness and worry and loss. The slow, painful fading and death of the people around me.  This, to me, and many others, is what we think it’s supposed to look like when someone you love dies.

But something different happened when I lost my mother. All of a sudden, it was just me.   There was no one to lean on. No one who I knew would always have my back. I was it. Just me. And it was terrifying, but also the most self-affirming thing that has ever happened to me in my life.  So I went to work doing something I hadn’t done for the entirety of my adult life: I started taking care of me.

It’s not how I expected to feel after the death of my mother, but I am grateful for the experience. And I like to believe that even though she’s no longer around, she was here long enough to teach me, love me, and provide me with everything I needed to make it possible.

Life after caregiving: 

We are even more surprised, because caregiving is so all-encompassing, that after the responsibility ends we sometimes have a strong sense of being lost—often feeling, “What do I do now?” (WTDAM p. 154)

Like Laura, I think we all need to go through a process of “re-finding” ourselves.  I believe I accomplished that through the cathartic process of writing What to Do about Mama? 

I was able to:

• Learn by my mistakes:  We made too many assumptions and had too little commitment. Our expectations were too high.  Our expectations of others were unrealistic; our expectations of ourselves were self-defeating.  (WTDAM p. 32)
• Come to an understanding that my best intentions do not dictate the results:  Once again, I stress expectations—just because you do what you think is best, there’s no guarantee that the results will be consistent with your intent.  (WTDAM p. 130), and
• Feel good that maybe, just maybe, I have been able to help someone else avoid , at least, some of the pitfalls.

Barbara Matthews