Setting personal boundaries in caregiving

Are you feeling that caregiving is ruining your life? Listen to the podcast: Caregiving Ruined My Life – The Caring Generation®
by Pamela Wilson   | Sep 15, 2020 | 

Caregiving Ruined My Life – The Caring Generation®

In this podcast Pamela Wilson speaks to an unspoken belief of many caregivers: “Caregiving Ruined my Life.” 

Although I never thought or felt about caregiving exactly in these terms, I guess you can say I came close.  Because caregiving had drained me, both physically and emotionally, my thoughts ran more along the lines of: “I squandered the last best years of my life.” 

As part of the process of regrouping after caregiving, I wrote What to Do about Mama? I wanted to share insights about what I learned.  I wanted pre-caregivers to know beforehand what they were getting into.  I wanted current caregivers to have more tools to work through the inevitable hurdles.  I wanted to give post-caregivers encouragement that there is life after caregiving, and more importantly, how to avoid burdening their own children with the same degree of responsibility.   

Wilson states that many caregivers even feel that caregiving almost killed them, and I can personally attest to the truth in that statement as reported by those caregivers who submitted their stories for inclusion in What to Do about Mama? 

“My overall caregiving experience has nearly killed me.” (Katrina’s Story)

What to Do about Mama? p. 105

“At times, I have felt her suck the life right out of me.” (June’s Story)

What to Do about Mama? p. 144

Wilson affirms that caregiving can be rewarding, meaningful, and joyous, but goes on to say: “Let’s be realistic.” Caregiving might be the most difficult responsibility you will ever accept. Few family members report raising their hands to volunteer for the job. Many caregivers feel they had no other choice, because nobody else stepped up to offer help.

Following are ten ways caregivers can take back their lives, according to Pamela Wilson.  I have listed them along with my affirmations and rebuttals, noted in red. 

• Tip #1: When elderly parents are adamant about refusing help, stop pushing. Set boundary lines.  Learn how to take back your life one step at a time. You’re not going to abandon your parents, but you may also not be that caregiver who loses your life when your parents’ lives fall apart. In the beginning, we felt guilty that my mother-in-law had been pushed into moving closer to family.  As front-line caregivers, we accommodated her every need.  Later, when her needs increased, she moved into our home.  Eventually I began to set boundary lines which were not well-received.  I was told everything was done for my convenience and that I was selfish. Boundaries are of critical importance.  They are not a magical solution.
• Tip #2:  Manage your work-life balance while honoring your sense of duty.  Hire in-home caregiving aides, consider other supportive living arrangements such as assisted living facilities, avail yourself of available community resources. We did not hesitate to enlist Hospice services.  They helped my mother-in-law live life to the fullest, even traveling by plane to a granddaughter’s college graduation.  She was on Hospice for two years.  It’s a fallacy that the patient must be on his or her deathbed before receiving Hospice services.
• Tip #3:  Not all families get along. The longer you continue being “the caregiver”, the longer the problem will persist.  Develop a plan to take back your life–and follow through.  Your relationship may suffer, but if you become emotionally and physically drained, your resentment will grow, and family relationships will suffer anyway.  Don’t allow this burden to become solely your problem. We had a family meeting and thought we had an established plan.  Near the end, it took a family mediation before expectations were met.  Don’t undertake a commitment based on assumptions. Draw up a concrete and specific plan of how everyone can and will contribute.  Sign, date, and revisit the plan often so that it will continue to meet growing needs.  Again, your relationships may suffer, but is better than the following.
• Tip #4:  “Caring for my elderly mother is killing me.” Acknowledge it and then take your life back. There is life after caregiving. (But that doesn’t necessarily mean you can turn back time.)
• Tip #5:  If something is making you sick, acknowledge the impact of caregiving stress and having to shoulder the brunt of the burden. While caregiving, I contracted the shingles.  Fortunately, they weren’t too bad.  Stress related?  I believe so.  I also damaged my knee while squatting down to tend my mother-in-law’s skin tears.  The knee(s) deteriorated to that point of needing replacements and ended my caregiving responsibility.  My mother-in-law moved from our home to her daughter’s and lived one more month.  
• Tip #6:   It’s frustrating when people say, “Call me if you need help” and are then not there for you when you need them. Well, sure.  But sometimes the caregiver needs to follow through with asking and to be specific in their needs.  And sometimes, the parent is resistant.  My husband and I used the services of a Friendly Visitor from Hospice so that we could have a “date night.”  I would have dinner prepared so that my mother-in-law could feel that she was entertaining a “guest” rather that feeling like she required a babysitter. 
• Tip #7:  Caregivers who stop working to be full-time caregivers, don’t foresee that caregiving work will become all-consuming, isolating, and depressing—often their only outside social and mental activity. It can impact you financially, mentally, and physically. Anticipated months can turn into years.  Consider the potential impact ahead of time. When my mother-in-law moved in, I emphasized that I wanted to maintain time for my daily walk. Because we all valued her ability to have social contact, I would take my mother-in-law to the senior center twice a week to play bridge. After she was settled there, I would hightail it over to Curves for a workout and would then proceed to one of my daughters’ homes for a visit with grandchildren. Fortunately, everything was in a fifteen-minute radius of here and there. This became my primary survival technique—a real win-win situation. 
• Tip # 8 Most families don’t give enough prior consideration to the challenges of living with elderly parents. Parents and children have different lifestyles, and this decision changes lives forever. It’s not easily reversible. Separating is like getting a divorce. Feelings are hurt when a caregiver says, “I can’t do this anymore.” I worked at the Area Agency on Aging and had a lot of experience visiting families and observing various caregiving models, and we definitely gave this a lot of thought.  But even after knowing someone for 40+ years, there are still surprises.  As an in-law, I found out more about my mother-in-law that I ever wanted to know, and I’m sure she felt the same.  When it came to the point that she had to move out of our home she said, “You’re evicting an eighty-nine-year-old woman!” and “I feel protected here.” (What to Do about Mama? p. 32.)  Talk about guilt!
• Tip #9 If you made the decision to give up a full-time job and live with elderly parents, you may have a great deal of apprehension and fear about getting back out there. I did give up a full-time job, but since I was able to retire, this was not a big problem for me.  It is common for caregivers to feel, “What now?” when caregiving ends.  I bypass that one, too, probably due to my status as a daughter-in-law, and also because I was focused on having bilateral knee replacements and going through rehabilitation. 
• Tip #10: Caregiving is a marathon—not a sprint. It doesn’t end quickly. Every choice that you make might be questioned by your family members. You will be judged for helping too much, not helping enough, for being selfish, for expressing your feelings. Whatever happened to the idea of enjoying life while you’re young? This was our experience exactly.  Caregiving needs can develop suddenly.  When “the crisis moment” occurs you often find yourself woefully unprepared.  Bottom line for the siblings is:  “If they want to weigh in on what the solution should be, they have to participate in the process that leads up to that.”

See Chapter One in What to Do about Mama? Expectations and Realities of Caregiving for my complete caregiving story. The following excerpt is a summary of the experience.

I thought we did a lot of things right:

*We had a full family discussion among the siblings when developing the caregiving plan, both when Mom moved north and later when she moved into our home.

*We communicated frequently and openly, both verbally and in writing. Although e-mailing has its drawbacks, it was efficient.

*We did our best to respect Mom’s independence. Initially, she lived in an independent retirement home. When she moved in with us, she had her own space with her own furniture and belongings.

*We provided Mom with a multitude of opportunities to socialize with both family and friends.

What to Do about Mama? p. 39

Still, we did a lot of things wrong:

*We did not include Mom in our initial discussions. Ultimately, the decision was hers, but she was strongly pressured.

*We did not discuss our values or explore other options to moving north. What took precedence? Autonomy or safety?

*We made too many assumptions and had too little commitment. Our expectations were too high. Caregivers are giving people who often try to maintain a sense of control. 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.

*Despite a good multi-decade relationship, the difference in our family cultures and its impact on who we were as people was just too vast. Once the trouble began, interaction among all parties became increasingly difficult, and then impossible. That was the quicksand I never saw in my path.

Ultimately, my husband and I have come to believe that it takes a caregiver to understand a caregiver. They did not understand.

What to Do about Mama? pp. 39-40