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:
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 12th. 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.
An interview with the authors of “What to Do about Mama?: A Guide to Caring for Aging Family Members”Posted: May 30, 2014
An AgingCare.com article “Getting Your Siblings to Help with Caregiving” by Linda Hepler, BSN, RN, stresses the importance of sharing caregiving responsibilities with siblings and makes suggestions about how to accomplish a cooperative family relationship.
Home » Caregiver Support » Family & Relationships » Articles » Getting Your Siblings to Help With Caregiving
Hepler states that when an elderly parent’s health begins to fail, one adult child generally becomes the primary caregiver. And while this may work well for a time, it can eventually cause resentment when you find yourself shouldering most of the burden—especially if other siblings live nearby yet don’t help out. She then goes on to make the following recommendations:
- Call a family meeting
- Make a written agenda
- Do as much listening as talking
- Be specific about what you want
- Divide up tasks
- Don’t expect total equality
Hepler stresses that it’s normal to experience tricky dynamics when siblings get together as adults, since childhood jealousies and rivalries as well as historical grudges may resurface under the pressure to work together and make sacrifices.
Hepler recommends that if all else fails, an option for getting past stressful communication is a relatively new concept—family mediation—an informal process in which a neutral third party sits down to help people in conflict to better understand their individual interests and needs so that they can agree upon a workable solution to the problem.
Hepler emphasizes that even when successful in achieving a better distribution of responsibility, it’s important to communicate, communicate, communicate.
We have discussed the family meeting previously (See the February 22, 2014 entry: “Family Meeting”), but the concept of “shared responsibility” with siblings cannot be overstressed. It is a major concept in my book, “What to Do about Mama?” and is central to chapter 2, in which I recount my own personal caregiving story, including experiences with family meetings and family mediation. Following are some excerpts from the book, relevant to this topic:
- A productive family meeting can build a strong foundation for family caregiving. Do you share common values? Talk about what is most important to all of you—autonomy or safety. Establish common goals. Divide responsibility based on the strengths and abilities you bring to the family. It is important to be specific. Develop a contract that delineates the commitments family members have made, and solidify those commitments with signatures that verify that everyone understands and agrees to the plan. Be sure to date the contract in case changes are needed later on. WTDAM p.54
- You’ve taken on the responsibility of family caregiving. You may have held a family meeting to set up a care plan. In an ideal world, all the family members would have done their best to foster a nurturing caregiving relationship among everyone involved—parent(s) and children alike. You have embraced mutual trust, respect, kindness, and patience. You have rejected guilt and resentment. You communicate effectively, based on listening to what everyone is saying. You compromise when problem-solving to find the solution that works best for everyone. You and the family have assigned tasks according to individual strengths and skills and with an awareness of individual needs. You share caregiving responsibilities, and have found that teamwork reduces tension and brings your family closer together. It even promotes the possibility of healing old wounds. You keep your expectations realistic, and your family members, in turn, provide you with needed emotional support. They allow you to vent and take steps to alleviate your stress.
How well does this describe your family’s caregiving experience? In the real world, when there’s a pressing need to collaborate and make important decisions (especially with a resistant parent), you may not all be in top form, but, rather, anxious and overwhelmed. Your relationships may be knocked off balance by the magnitude of caring for aging or failing parents. Feelings for each other shift, sometimes weakening the ties and intensifying sibling rivalries of the past. There may be jealousies related to perceived “favored children” or worries about issues of inheritance. A frequently reported caregiver frustration is the lack of consistent help from other family members; a large portion of sibling caregivers (40%) end up having serious conflicts with each other. Most of us do not even see that we are about to become mired in the quicksand until we step in it and it begins to suck us down. WTDAM pp. 107-108
In AgingCare.com, http://www.agingcare.com
Whitney asks the following question:
I would like to hear stories about how your health has been affected by sibling(s) that refuse to help you with parents’ caregiving. Speaking for myself, I’ve had high blood pressure and am fatigued most days. I basically consider myself a calm person, but having to deal with impossible to get along with sibling(s) is really an emotional and physical strain. In addition, do you plan to end the relationship with your sibling(s) at some point that do not help you with caregiving?
Based on my experience as primary caregiver for my mother-in-law, I am absolutely convinced that caregiving has a direct correlation to caregiver health. I believe caregiver health is impacted by both the physical and emotional demands of the job. I address this issue in my book, “What to Do about Mama?”
• Around the time I turned 60, just before Mom became sick, I was sitting on the examining table at the doctor’s office for my yearly checkup, thinking, “I feel great!” In a matter of weeks, because of the dramatic increase of caregiving demands, fatigue, aches, and pains began to get the better of me. WTDAM p.11
• If the expectations we had coming into the caregiving relationship are not fulfilled, the seed for conflict is planted. Our expectations are born out of a sense of fairness. Imbalances of responsibility lead to bad feelings among siblings and to caregiver burnout. “Doing one’s part” is open to interpretation. You are not in control of your adult siblings, and when you try force your will (no matter how justified), it provokes a wide array of negative emotional responses. WTDAM p.60
I also address the issue of maintaining sibling relationships.
• There could be healing someday if you and your siblings find your way to let go of grudges. But you may also have to learn to accept that sometimes relationships are broken beyond repair, and it’s just not your job to fix them. Whereas childhood relationships with brothers and sisters are involuntary, maintaining them in adulthood is not. We are entitled to choose “not.” WTDAM p.113
Debbie Williams-Maclean’s discussion of the family meeting is right on. As I’ve stated in “What to Do about Mama?” (p. 54):
“A productive family meeting can build a strong foundation for family caregiving. Do you share common values? Talk about what is most important to all of you—autonomy or safety. Establish common goals. Divide responsibility based on the strengths and abilities you bring to the family. It is important to be specific. Develop a contract that delineates the commitments family members have made, and solidify those commitments with signatures that verify that everyone understands and agrees to the plan. Be sure to date the contract in case changes are needed later on.”
Although we initially had a family meeting in our own caregiving situation, we were not specific enough about expectations, responsibilities, and commitments. After my mother-in-law had been living with us for two years, I started to attend a support group, which led to a second family meeting. This excerpt from “What to Do about Mama?” (pp. 12-13) describes that experience.
“The group leader suggested that we try to schedule a family meeting. I spoke to Shelley about the idea, which led her to call her other siblings and schedule one. Shelley also suggested we make a list identifying “What is Working and What is Not Working” (Shelley is a social worker), to distribute to the family beforehand.
David and I worked very hard on our “assignment.” We wrote openly and honestly about objectives, environment, health, communication, socialization, and family support—enumerating the positives and negatives in each category. What was “heard,” however, were only the “criticisms” regarding the unwillingness to take risks and make sacrifices, requirements to schedule respite visits a year in advance, “can’t do” attitudes, elevating other priorities over and above Mom, and the second-guessing of our decisions. At the meeting, David’s siblings reacted defensively and angrily. I assume much of that stemmed from guilty feelings. They made comments such as, “You don’t understand the pressures of our jobs.” The meeting was stressful and emotionally exhausting. I had to leave early to babysit grandchildren, and the meeting continued with David, his siblings, and now their mother, too.
After I left I felt anxious and sick to my stomach. I was worried that the meeting set us all back more than it had moved us forward. But later, when David joined me for our overnight babysitting stint, he expressed that he was satisfied with what had occurred. He said that the process was cathartic for him; that at least we got a response out of his siblings. Scott had apologized for the remarks he had made to me, and everyone agreed that ineffective communication was the main problem.”
As Debbie also says in her entry Person-Place-orThing, “In my everyday quest to devour as much information on the subject of Caregiving, I run across all sorts of articles. Debbie is certainly right on again. And I will add that it a really good to look at and consider a variety of perspectives and ideas. That’s what’s great about support groups…but that’s an entry for another day.
I heard from a friend the other day; she is a caregiver for her elderly parents. My friend commented, “The hardest part is to let go of the expectation that they will ever be the fun, easygoing people they used to be. And I do not want the years we have left with each other to be filled with discord.”
Expectations. Hoo boy! That’s a big one—and a topic that I address multiple times in my book, What to Do about Mama? Here are a few of the statements about expectations that appear throughout the book:
• Caregiving is fraught with a lack of control over both the situations that occur and the people involved. Our expectations of others were unrealistic; our expectations of ourselves were self-defeating. 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? p. 72
• The big trip-up occurs when you discover that the realities do not meet your expectations and you begin to feel disappointment and frustration. p. 87
• 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. p. 130
Following are excerpts from two of the caregiving stories that appear in What to Do about Mama? They both point out that expectations and realities are most often very different.
June’s Story: “I was such an idealist about this opportunity to provide my mother with care. I wanted her to live near me. I wanted this precious time together to get reacquainted and do all those things that had made for such great memories with her as a kid. Sadly, that wasn’t to be.”
Katrina’s Story: “My role started out as an excited, happy daughter who anticipated the joy of having Mom close by for the first time in my married life. I looked forward to involving her with the many friendships and activities in my church and to seeing her almost every day for a few minutes on my way home from work.” And later, “My overall caregiving experience has nearly killed me. The stress has been overwhelming so many times.”
Readers: Do you have personal examples to share?