Grief. It makes some people uncomfortable. According to the In the June 23, 2021, Advocate for Mom and Dad article: How To Help Somebody You Love Through Grief by Kate Romeo, when people don’t know how to deal with an uncomfortable situation, they often just don’t. Instead, they may shy away from the opportunity and simply let the other grieve alone in silence. This is not heathy—not for the person who is grieving, nor for the person who is avoiding their own discomfort. To help someone you love through grief, Romeo recommends the following:
- Understand the Grieving Process. Acknowledge that everyone deserves to process their grief in a healthy way.
- Think About What To Say To a Grieving Loved One. Be prepared to acknowledge the individual by listening to the bereaved one talk about their loved one’s passing—or even sit in silence with them while they process their emotions. Don’t be afraid to express your concerns and emotions, as well.
- Offer Some Help and Support Them. Demonstrate your continued support by helping out during the difficult times when their functioning may be limited.
- Watch For Signs of Depression. Be on the alert for difficulty functioning with daily life, a proclivity to focus on death, and even evidence of hallucinations.
What to Do about Mama? Excerpts about grief.
Death and dying is one of the most difficult passages we travel with our loved ones. There may be a lot of “self-help” books out there, but no “instructions,” per se. When you discuss the topic with other people, it becomes apparent that the differences in how people perceive end-of-life issues are vast. Everyone has his or her own values and beliefs (based on their unique life experiences), and emotions can run quite high.
From Jenna’s Story:
However, toward the end it was my siblings and I who supported my mother’s physical health and my father’s emotional health, as his anticipatory grief was larger than I think even he realized.
In addition, I found that being able to talk about my mother was so very important. Oftentimes, when someone dies, no one wants to mention the person’s name to the close family members who are grieving. Even to this day—three years later—this still happens. But, I find that being able to share stories about her makes me feel better.
From Amelia’s Story:
People feel uncomfortable saying anything, so no one really expresses what they want or don’t want. Maybe they worry about hurting feelings; maybe it’s too emotionally painful to make difficult decisions. People think it won’t happen or want to pretend it won’t happen. They adopt the approach, “Since I don’t know what to say, I won’t say anything.”
From Ellen’s Story:
When my mother passed away, I felt lost. It was like losing a child. I felt unneeded—like I had lost a lot of my importance and purpose in life. Caregiving took up a large percent of my day, and suddenly having so much time on my hands was a difficult adjustment for me. I went through years of depression after losing my mother, who was also my best friend. Over the years, our mother-child roles had reversed so much.
From June’s Update:What to Do about Mama? pp. 224, 279, 280-281, 277, 282, 286
I sat vigil for most of the twenty-four hours. My husband, daughter, and son were with me for most of the time. I sent them home around eight p.m. All the clinical signs of impending death were there, but she didn’t want to let go. She was unresponsive, but at one point, when my family was with me, I attempted to do mouth care with a sponge/stick. From under the sheet, up came her fist, which she shook at me. We looked at one another and laughed. She was still mad at me. That was so Mom. Around five a.m., I had this strong feeling that she did not want me there. It was so clear. I packed up, alerted the nurses, and drove home. I had just fallen asleep when the nursing home called me to say that she passed. I did not feel any guilt. I knew that was what she wanted. Surprisingly, I have moved on with great peace.
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
How many of you have been inundated with a show of hands?
I was finally able to visit my brother and sister-in-law after COVID thwarted my best-laid plans for frequent visits. Since a diagnosis of Lewy Body Dementia, their lives have changed about as dramatically as one can imagine, but they are both working hard to get through this together day-by-day-by-day.
I was a caregiver for my mother-in-law for seven years, four of them fulltime in our home. I often refer to that experience when discussing caregiving. After one such comment, my sister-in-law said, “Caregiving for a spouse is different.” I know that this to be true. (I also know there are similarities and differences in all caregiving situations.)
Lewy Body impacts both the body and the mind. It, along with a whole host of other infirmities, can and does redefine a relationship. And especially with dementia there’s an ultimate sense of having lost your loved one twice.
The March 2021 Guideposts article “Spousal Caregiving: 5 Ways to Keep Your Marriage Strong offers good advice—albeit it may take some creative thinking to apply the suggestions to your particular situation. The overall message is to make time to enjoy each other in ways that go beyond caregiving needs.
- Redefine marital intimacy.
Savor physical touch in many forms that demonstrate caring and make each other feel good. I used to give my little one “lotion parties” after their baths. Try it with your spouse – you might like it! (And don’t forget those feet!)
- Fall in love with different personality traits.
I noticed how aware and concerned my brother is that his wife takes time for herself.
Don’t forget to appreciate your caregiver!
- Find new things to bond over.
Go through those boxes of pictures and pick out the best photos to relive and document your travels.
- Renegotiate your roles.
Identify those tasks you have to do. For example—you must eat. Daily routines can be a chore. Care Receiver—can you make up a menu for one breakfast, one lunch, and one dinner for the week? Choose some simple new recipes to make and help as you are able—even if that means just reading the recipe to the cook, one step at a time.
- Celebrate your anniversary. Enlist your family to help out—I’m picturing a special meal ala JH, MH as hostess, AH as garcon, and EH as entertainment!