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 |
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:What to Do about Mama? p. 39
*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.
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
On September 10, 2020 The Caregiver Space discussed an article that appeared in the Guardian. Would you want a robot to be your relative’s carer? The point of the article was that people need human relationships involving empathy and attachment and that robots do not satisfy that need in caregiving situations. Read more in the Guardian.
My reply? Well, of course not! But that doesn’t mean I wouldn’t use a robot as an assistive device—just like a cane, walker, or Emergency Response System.
What do you think?
End of life. While we all know that it’s coming—someday—it is something we tend to ignore, until the moment it gets right up in our face and we can deny it no longer.
Snubbing death has become a real challenge in the midst of the pandemic.
I learned to deny death early on in life. Because of that, there is still within me the lasting impact of unresolved childhood grief. The death of my father, with all its surrounding circumstances, probably had the greatest formative impact on who I grew up to be.
“Daddy went away, never to return home. No last phone call. No last touch.”An Unremarkable and Imperfect Grandma (Life Stories and Life Lessons) p. 95
So as a young adult I made a purposeful change to be candid and straightforward. This is the person I became; it does not always serve me well.
I am now in my seventh decade and find myself confronted by loss with increasing frequency. The thought of losing those who I love without the opportunity to see them again or even to say goodbye has intensified from fear to terror due to the coronavirus.
I encourage all of you to rethink your attitudes about end-of-life care and death before you find yourself in the situation where there is no going back.
11 Inspiring Quotes to Help You Rethink End of Life Care by Easy Living, August 31, 2020
This excerpt refers to quote NINE below:An Unremarkable and Imperfect Grandma (Life Stories and Life Lessons) p. 111
Because the extent of his illness had been kept from him, so many other opportunities were lost. I am quite sure there was much more that he would have liked to say to help guide me into adult life. As it was, he didn’t even have the chance to say, “Goodbye.”
- ONE: At the end of your life, you will never regret not having passed one more test, not winning one more verdict or not closing one more deal. You will regret time not spent with a husband, a friend, a child, or a parent—Barbara Bush
No matter what your life stage there is benefit from thinking with an end-of-life mindset.
- TWO: In the end, it’s not the years in your life that count. It’s the life in your years—Abraham Lincoln
“Quality of life” is vital to end of life care.
- THREE: It’s not what you have at the end of life, it’s what you leave behind that matters—Stedman Graham
What legacy will you leave behind? How will you be remembered? What values did you impart? What impact did you have on others?
- FOUR: Our worst fear isn’t the end of life but the end of memories—Tom Rachman
How will we be remembered? Make memories loved ones will cherish.
- FIVE: I wanted a perfect ending. Now I’ve learned, the hard way, that some poems don’t rhyme, and some stories don’t have a clear beginning, middle and end—Gilda Radner
Life does not always go the way we want. Unpredictability is both the struggle and the beauty.
- SIX: In the beginning of life, when we are infants, we need others to survive. And at the end of life, we need others to survive. But here’s the secret, in between, we need others as well—Morrie Schwartz
We neglect to consider all the ways we need others throughout life and all the ways we are needed, even as we near the end of life.
- SEVEN: Culturally, now, we’re really tight around death, and as a result I think people miss out on a lot of the beautiful aspects of the end of life process that can be very helpful for the grieving process, that can be a really beautiful part of transition of life that we don’t get to experience because it’s not in the conversation—Chrysta Bell
When we avoid talking about end of life, we deny ourselves the opportunity to be involved in our end of life care. Confront what is happening. Talking about your feelings and making your preferences known benefits both you and those around you.
- EIGHT: Have a conversation with your family about your end-of-life wishes while you are healthy. No one wants to have that discussion… but if you do, you’ll be giving your loved ones a tremendous gift, since they won’t have to guess what your wishes would have been, and it takes the onus of responsibility off of them—Jodi Picoult
Or: “End of life decisions should not be made at the end of life.” Give your family the gift by planning ahead and sharing your wishes for end of life care. If you wait until the crisis is upon you, it may be too late for you to express your wishes.
- NINE: Having the choice at the end of my life has become incredibly important. It has given me a sense of peace during a time that otherwise would be dominated by fear, uncertainty, and pain—Brittany Maynard
Choice is vital in end of life care. A sense of choice through advance care planning helps reduce fear and uncertainty and gives peace.
- TEN: You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die—Cicely Saunders
In trying to deny or hide from death, too many miss out on the palliative care available for better living during the process of dying.
- ELEVEN: The end of life deserves as much beauty, care, and respect as the beginning—Anonymous
In summary of end of life care.
This excerpt refers to Quote TEN above.What to Do about Mama? p. 171
A hospice group supplied my mother-in-law with a transport chair so I could get her out of the house to go to the senior center, and with travel oxygen so she could go to the beach with her daughter. In other words, although hospice eases the process of dying, it also facilitates and encourages the process of living.