In regard to the June 2, 2021, Caring Generation Podcast—Taking Care of Family: Living for Someone Else—by Pamela Wilson–when I listened to this Podcast, I checked all of the following off as having had a significant impact in my own 24/7 caregiving experience. Supportive examples from What to do About Mama? are in blue.
What does 24/7 care mean?
- The individual in need of care may be at risk of injury or other safety concerns if left alone for any time during a 24-hour period.
- The term 24/7 care is often first heard after an elderly parent is either hospitalized, or in a nursing home for rehabilitation after a serious injury or health issue.
Mom nearly collapsed twice Monday night while I was helping her from the bathroom to the bedroom. I just could not physically handle her anymore. Normally I become highly focused when there is a problem to solve, but this time I felt at a loss about how to proceed. I called the doctor on his cell phone, and he instructed me to take her to the ER. He also said that my mother-in-law was probably moving beyond my ability to care for, and that we should consider placing her in a nursing home.An Unremarkable and Imperfect Grandma, (my memoir) p. 414
Goal upon release:
- If a parent has been living alone at home, the individual’s goal or the family’s wish is usually for a return to independent living.
When Mom was discharged, she returned to the retirement facility. The day after Thanksgiving she fell in her apartment, resulting in another trip to the emergency room. She had broken her pelvis again, this time in two places on the other side, which resulted in another hospital stay and another nursing home admission for rehab. Mom was discharged after two months and returned once again to her retirement home in early 2007. However, this time David and I informed Mom and his siblings that we were not going to repeat this process if she was injured and debilitated once more; something had to be done to put an end to this vicious cycle.What to Do about Mama? p. 11
- Parents often deny they need “help” because the term can have a negative connotation when viewed as meaning “incapable of self-care”.
- The ability to return to independence can be vague in terms of time and ability level.
Caregivers sometimes begin by providing support in such areas as yard work or home repairs, followed by assistance with IADLs: telephone communication, housekeeping, laundry, food preparation, transportation, and managing medications and finances. Perhaps a greater sense of dependence involves the need for support with ADLs: bathing, dressing, grooming, ambulating, transferring, toileting, and feeding. The list of caregiving tasks grows and grows; the specifics are customized to each individual situation. When I was no longer able to care for my mother-in-law because of my knee replacement surgery, I wrote a job description for our nephew, which, in addition to the above-listed responsibilities, included the following tasks:
*Maintain an updated medical history to take to all doctor appointmentsWhat to Do about Mama? p. 162
*Maintain hearing aids; help to put them in
*Perform wound care
*Order medications, medical supplies, and equipment
*Order incontinence products
*Take to hair and nail appointments
*Provide opportunity for recreational activity
*Schedule and direct help–aids and hospice personnel
A serious talk is needed to determine:
- What level of independence necessary to return home?
- What efforts will need to be made?
- How much involvement and commitment will be required of caregivers?
- Will your parent commit to following doctor’s orders? Will he/she go above and beyond to establish habits that support better health and more physical activity?
We talked to Mom, and she seemed to understand that I could not continue to be her caregiver. The burden of caregiving – which now included hands-on assistance with walking and transferring, maintaining the oxygen and carrying the bottles, pushing the wheelchair and lifting it in and out of the car, cleaning up after episodes of incontinence, and, most significantly, wound care of her arms and lower extremities – was just more than I could handle in my current physical condition.What to Do about Mama? p. 434
Options to be explored:
- Paid in-home caregivers
When the Aging care manager outlined the specifics of the waiver program’s “Services My Way” plan, I was floored. It provided more than I had dreamed in my wildest imagination: A 24/7 service provider; expensive equipment, such as an electric Hoyer lift, a customized wheelchair, and a combination shower wheelchair-commode; and environmental modifications, including ramps, laminate flooring, and a handicapped-accessible bathroom modification with a wheel-in shower chair.What to Do about Mama? p. 314
- Moving to a care community.
I accepted more responsibility as my parents’ conditions worsened. Eventually, my mom convinced my dad they should move to my city to end the last-minute emergency flights for me and allow me to keep closer tabs on their situation, including help arrangements. I chose a continuing care retirement community (CCRC) near my house, and it was the best decision for them and for me. My mother called the shots on the move, and of course, I agreed. Moving them to my hometown was the biggest change in my caregiving situation, and it certainly did ratchet up my involvement and time commitment.What to Do About Mama? From Marianne’s Story p. 98
- Relying on family caregiving
Boundaries to be set:
- As the caregiver, what level of time or money you can you commit?
Secondly, I was a caregiver for seven years. During the time I worked at Aging, my mother-in-law moved from Florida to our city in Pennsylvania. She resided in a supportive independent living retirement facility. After living there for two years, she began to have falls, which required a cycle of emergency room visits, hospitalizations, and extensive rehabilitation. The “solution” to the problem was for me to quit my job so that my mother-in-law could move into our home with me as her full-time caregiver.What to Do about Mama? p. 2
If care becomes permanent, what will be the next steps taken to meet increasing needs?
Because BGM had quit her job, and her income was essential to meeting the mortgage, she and her husband became financially dependent on his mother. That left them little recourse when the burden became too much for BGM to physically handle.What to Do about Mama? p. 252
A problem to avoid:
- Caregivers contributing to the situation by becoming indispensable. Be aware that each hospitalization or nursing home stay opens up another point for decision-making since escalating needs require new approaches.
She made comments such as, “You’re evicting an eighty-nine-year-old woman!” and “I feel protected here.”
“I understand that you are that you are apprehensive of change and what it will be like for you living at Shelley’s. I say with confidence that Shelley is very capable and resourceful and will see that you are well-cared for. And after all, she is your daughter.”What to Do about Mama? pp, 32 & 35
A principal to follow:
- Establishing equal participation in care. This is essential so that that caregiver does not become responsible for taking on total responsibility for a 24/7 care situation.
Develop a “contract of expectations and commitments that everyone understands, agrees to, and signs off on.What to Do about Mama? p. 255