Caregiving as a shared responsibility is a main theme of my book, What to Do about Mama? It is also the theme of Pamela Wilson’s Caring Generation November 24, 2021, podcast: Why Won’t My Family Help Me – The Caring Generation® by Pamela Wilson
As is my general pattern, I will share those features of my caregiving experience that relate to Pamela podcast by using excerpts from What to Do about Mama?
I met my husband in 1966 on our first day at college. The first thing I learned about him was that he came from a military family and that his dad, mom, brother, and two sisters were all still living in Germany.
I met David’s family the following summer when they returned to the States, and I was thrilled to be included in their family life. My own family had sort of disintegrated after my father passed away a few years earlier. I always felt cared for and included by David’s family, and that did not change after we married.What to Do about Mama? p. 7
From the beginning, I considered my husband’s family to be my family—like I was a daughter and a sister rather than a daughter-in-law or sister-in-law. I experienced the family’s “life events” from that perspective, too.
In 1994, my father-in-law passed away suddenly in his sleep one night. He died in a way that many of us would “like to go.” Later, my mother-in-law told me she was not only surprised when she awoke to find him still in bed at eight o’clock in the morning, but she was shocked when she nudged him and he did not respond. This expression of emotion was more than she generally displayed. My in-laws lived in Florida, where they had moved in 1971. It was unusual for them to live in one place for so long, since Dad had been in the military for thirty years. Mom did not drive, and David and I extended an open invitation for her to live in our hometown.What to Do about Mama? p. 8
The time came when the family felt that Mom was no longer safe living alone in Florida, it was just a matter of course that she would live near us.
The general consensus was that if Mom would agree to the move, our hometown was probably the best choice because of the proximity of family members. In addition to David and me, our three grown children lived in the area, as well as one of Shelley’s sons. Shelley and Sandy each lived about two hours away, and it was expected that Scott could fly in easily. We anticipated that they would all make frequent visits.What to Do about Mama? p. 9
After a couple of years, my mother-in-law’s health began to decline significantly. At the time, I was working as an Assessor at the Area Agency on Aging. My job impacted my attitude about caregiving in a number of ways. First of all, I felt that my career experience had uniquely qualified me to be a caregiver. Secondly, I was influenced by many of the caregivers I had observed on my job.
*Families that had attached in-law quarters—close but separate—appeared to me to fare better. *Caregivers demonstrate love and appreciation through the sacrifices that they make. I was moved to tears by a gentleman who had “retired” early to care for his mother with advanced dementia. He told me, “Miss Barb, my mother does not know who I am. But at night, when we sit on the couch watching TV with my arm around her and her head on my shoulder, it is all worthwhile.”What to Do about Mama? p. 39
I was gratified to be able to “give back” to a family that had given so much to me.
I had the opportunity to demonstrate to my mother-inlaw and siblings-in-law my appreciation for being a part of their family since I was eighteen years old. I was also able to show thanks to my parents-in-law for providing support in our times of need. Most of all, I was able to show gratitude for their assistance and encouragement in helping to provide our children with their college educations. This was to be my gift to my all of my in-laws.What to Do about Mama? p. 35
So, my mother-in-law moved in with us and I quit my job to be her fulltime caregiver. The arrangement lasted for four years—the first two were good—the last two were not. It had been my expectation that my husband’s family would pull together like another family I had the pleasure of observing.
*I remember one snowy day driving down a gravel driveway to an old family homestead and being surprised that all five children took the time to come to the assessment for their mother to receive services.What to Do about Mama? p. 223
*One thing that becomes very clear from our reading of the caregiver responses and the stories in this book is that caregiving has a profound impact on family relationships. If your family unit has always been strong and you all pull together to meet this challenge, your relationship will probably grow even stronger from sharing responsibilities and supporting one another through the experience.
But ultimately, this was not the outcome of our caregiving arrangement.
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.What to Do about Mama? p. 40
Click on the following link to listen to Pamela Wilson’s Podcast about the five reasons why families won’t help. Why Won’t My Family Help Me – The Caring Generation® (pameladwilson.com)
Five reasons why family won’t help:
- If your family members are not caregivers, they may not understand what you do all day.
Understanding the responsibilities of any job—caregiving included—requires an understanding of the job responsibilities. It involves experiences hands-on practical tasks under the type of emotional stress many caregivers experience. Everyone involved needs to learn that there is a big a difference between help that helps and help that creates more work for you. Oftentimes family members who are not caregivers stand on the sidelines giving advice or directing the caregiver what to do, which is generally not appreciated. Good caregiver communication is the key to overcoming these challenges, but there are no guarantees that all parties will be proficient at communicating.
- Dealing With Critical Family Members.
Family members can be judgmental and refuse to help when you don’t do things “their” way, which they consider to be the “right” way. They may then choose not to be involved. To cope with your critics, try not to take the criticism personally with the understanding that that there is usually a deeper reason for their response that has nothing to do with you. (For example, guilt at not stepping up like you.) Choose how you respond be aware that there is the potential for this negative event to be an unforeseen positive.
- Differing belief systems.
Changing beliefs is as difficult as changing habits. Some families believe that family takes care of family regardless of the situation, others do not. Even withing the same family, there are factors from childhood that have an impact you don’t know about. (Sibling rivalry is a good example that comes to mind.)
- Family interactions with caregiver.
What is your history? Have you let others down? Broken commitments? Been unreliable or untrustworthy? Hard feelings can be harbored for years. The intentions of caregiving siblings may be met with suspicion. Both past parent-child relationships and sibling relationships impact the type of care aging parents receive, and current belief systems have influence as well. Family beliefs can conflict with the family working as a team. It is most common that one caregiver bears most of the responsibility for an aging parent.
- Family May Not Help Due to Life Situations or Timing
Different siblings may be in different life stages. You may need to give the wake-up call you can no longer be the caregiver before other siblings to step up. Since you’ve been managing point your sibling may hesitate to upset the status quo. If that’s the case, it’s up to you not to let a lack of family support place your life on hold. (Be prepared for your relationship to be permanently changed.)
See the Caregiver Space article “Can I get paid to be a family caregiver?” by Cori Carl: https://thecaregiverspace.org/paid-to-be-a-family-caregiver for helpful and comprehensive information about options for paying caregivers. Programs vary state to state and are, in general a work in progress. That is not to say you shouldn’t bother—it is worth you effort to explore what is available—and a good starting point is your Area Agency on Aging.
The following excerpts are included in the chapter titled “Finances” in What to Do about Mama?
One means of accomplishing “Aging in Place” is through a Personal Service Agreement, or Caregiving Contract. The agreement provides family members with compensation for quitting a job to take on the responsibility of caregiving. It recognizes the sacrifice of family members who give up income and acknowledges the astronomical costs of assisted-living facilities or hiring in-home help. Because the contract is a legal document, it is advisable to hire a lawyer to draft it or advise you about the contents.What to Do about Mama? p. 209
Therefore, the disadvantages are:
• Legal expenditures
• The time entailed for detailed recordkeeping
The advantages are:
• Financial compensation
• A legitimate way to spend down assets
• Transparency for all family members
• The senior citizen maintains a sense of control over his or her life
• A lessening of the senior’s feeling of being a “burden” to the caregiver
Families can, of course, agree upon other reimbursement options—as long as they recognize that the sharing of expenses with the care receiver and/or other family members:
• Is “insurance” to cover the increasing level of care needs (by avoiding more expensive options: home-health care, assisted living, and nursing homes)
• Minimizes the stress on the caregiver’s personal finances It is advisable, however, to secure some type of legal agreement to avoid future problems. Remember, too, that if you have financial control, keeping your family informed decreases their tendencies toward doubt and second-guessing.
Some caregivers choose to quit an existing job to provide care. That option may be more feasible if a Personal Service Agreement or Caregiver Contract is established.What to Do about Mama? p. 214
The contract should address:
1. Tasks—personal services, personal health services, driving, household services
2. Work schedule and hours
3. Wages and how to be paid (rates comparable to those of home-health companies)
4. Care receiver Social Security payments and caregiver reporting
5. Reimbursement of caregiver expenses and car maintenance.
Don’t forget–research and explore your options.
In my November 18th post: The Plan, Katie’s Story Part Six, I recounted that when Sam decided to pursue the idea of bringing Katie home I e-mailed the social services director at Aging with the request that she facilitate the agency process. She told me that she was retiring in a few months, and that the nurse (who I really wanted to do the assessment) was leaving the agency in a couple of weeks, but that she would do what she could to help. Because she followed through with her commitment and got the ball rolling at the agency, everything fell into place as I have reported throughout Katie’s Story.
I recently invited this lady to join me for a visit to see Katie. I wanted her to be able to witness how “The Plan” was working (which none of us expected to come to fruition) and how her efforts contributed to the dramatic improvement in Katie’s living condition and outlook on life. She was duly impressed.
I’m betting that what she saw will be a highlight for her whenever she thinks about those last days winding up her career.
At the top of my TO DO list I have added:
From the onset, I had a specific idea of the care plan that would be necessary for Katie to be cared for at home. But, I was skeptical that such a plan would be approved.
The plan was based on two major factors:
- The opportunity to use an existing handicapped-accessible living area:
First of all, Katie has an ideal living situation in her home. A number of years ago, Sam’s mother chose to utilize her finances to add a handicapped-accessible living area onto Sam and Katie’s house. They built a large living area with a handicapped bathroom that extended off of the existing first-floor family room so they could provide the assistance needed.
- The ability to get approval for consistent 24/7 care:
Secondly, Katie requires total care, which Sam would not be able to handle alone. He works part time and needs the freedom to come and go without having to constantly make arrangements. Although Sam and Katie have two sons, only one is local, and both have the responsibility of young children. Katie needs one consistent fulltime caregiver, in addition to Sam, living in the home.
At the October 23rd meeting, Katie was relatively alert and able to participate in a limited way. Sam informed the provider that all narcotic medication had been discontinued. The provider assured Sam that they would be able to care for Katie in the home environment. More importantly, another meeting was scheduled for the following week with all involved parties: Katie and Sam, the Area Agency on Aging care manager, the nursing home social worker, the provider, and the prospective caregiver.
At this meeting, Judene and I were also in attendance to provide support for Katie and Sam. When we first arrived, Katie greeted us with a vivacious, “Hi!” We were delighted.
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 of in my wildest imagination, such as:
- A 24/7 Service Provider
- Equipment: electric Hoyer lift, customized wheelchair, shower wheelchair / commode chair combo;
- Environmental modifications: ramps, laminate flooring, wheel-in shower modification; and
- Transportation: two roundtrip EMS transportation services monthly for medical appointments.
And if this was not enough to make the day, the provider brought the caregiver they had in mind to look after Katie. “Gloria” has experience working in a family unit. She knows how to use a Hoyer lift. She’s described as being a homebody, having spirit, and being reserved yet warm. We were all most-impressed when Gloria reassured Katie with a gentle touch and calmed her with an uplifting hymn.
One more meeting was scheduled to complete the Public Partnership paperwork for final approval of the plan. The paperwork has now been submitted. The target date for Katie to come home is December 15th. And again, we wait…
Now waiting for approval of the plan was not necessarily a bad thing. Katie was scheduled to go through a complicated “tendon release” procedure to try to straighten and relax her contracted limbs. It would not be feasible to care for her at home during this time.
Sam had to have Katie transported to a larger city, about 2 hours away, to receive the treatment–which was not available locally, even at the teaching hospital in our area. Over a period of several weeks, Katie’s limbs were stretched and casted a number of times in preparation for tendon release surgery.
The procedure resulted in escalating pain, which was especially difficult during transportation to and from the treatment facility. Because Katie began to cry out continually, her narcotic medications were increased.
On September 12th, while I was away on a trip to visit my daughter’s family and while Sam was away on a long-planned and much-needed fishing getaway, I received an e-mail from Katie’s care manager from the Area Agency on Aging. The care plan had been approved!
Sam was not checking his e-mail, and I decided not to try to phone him while he was on his trip. After a few anxious days, I was finally able to talk to Sam. But my good news was tempered by his disturbing news. When Sam went to visit Katie upon returning from his trip, he was unable to awaken her—she was unresponsive.
And, tendon release surgery was scheduled for the following week…
Katie and I were born in the same year—1948. The thought of having to spend life in a nursing home, potentially for decades, makes me cringe. Especially for someone like Katie who is vivacious to the point of hyperactivity. She is selfless—always helping others. She has raised a foster child. She has done mission work in Peru and on reservations in the Western United States. She has helped friends and neighbors with cancer. She was a caregiver for her mother and mother-in-law. She provided support to David and me when we were caregivers for my mother-in-law. It’s time to give back.
Because of my professional background, I knew that Katie would qualify for a waiver program. I was familiar with a company that provides a consistent live-in caregiver 24/7 at a cost, that although expensive, is about 25% of what most companies charge. But there were two major challenges.
The first was to convince Sam (Katie’s husband) to have two assessments for services—from the potential provider and from the Area Agency on Aging. But, Sam said, “I just can’t see it.” After many months, I finally resorted to telling Sam I just could not continue to visit Katie so often at the nursing home—it was too difficult seeing her living in that environment while he was resistant to exploring all potential options. I told Katie I had done all that I could do—it was up to her to persuade Sam.
The second challenge was that waivers do not generally provide 24-hour care. The plan hinged on convincing a bureaucratic institution to see the obvious: that it makes sense to provide 24-hour care when the cost is equitable to the 10-hours of care from “approved” providers (as well as cheaper than a nursing home).
I’m unsure of the motivating factor, but in May 2014, Sam decided to move ahead with the assessments. He called the Area Agency on Aging to request an assessment. I called the 24-hour provider, who was available to assess Katie the following week. I then e-mailed the social services director at Aging, who was able to facilitate the agency process. Everything fell into place. The 24-hour provider prepared a care plan that was then ready to present at the agency assessment.
We were informed of a new program called “Services My Way,” which was exactly what was needed to be able to care for Katie successfully in her home. However, the program had not yet been administered in this county. So the assessments were complete—the care plan completed and submitted. It was now time to wait…….
An AgingCare.com question was recently asked that highlights the conflict between safety and autonomy for seniors. http://www.agingcare.com/
My grandparents will not accept help and there are too many cooks in the kitchen. Should everyone back off?
I agree that everyone should back off. People like your grandparents often feel bullied by all of this pushing. They may eventually agree to some help if they are given what you mentioned – loving attention and distraction. If they feel free to make their own decisions they may become more reasonable.
I also agree that if they aren’t too resistant to wearing personal alarms to call for help that would be a step forward. Because of all the pushing in the past, they may even refuse this for awhile, but in the future you could gently mention that this form of help is non-intrusive and possible so that you’ll set it up if they decide they want it. To me the magic words are “they decide.”
I know it’s hard to watch this and not try to fix it, but human dignity and the ability to decide for oneself is important. Good luck to you all,
“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.”
In your situation you have an extensive family, so finding consensus will be a challenge. I agree with all responders that the family needs to back off for now (this would be part of your family plan) and allow your grandparents to regain their sense of autonomy. Once they feel a greater sense of control, they MIGHT be ready acknowledge their need for more help and make the choice to accept it (offered up in small steps). If they don’t, then they will suffer the consequences, and none of you should feel guilty, say “I told you so,” or allow those consequences to become YOUR consequences.
If you feel the situation is very dangerous, you can always call your local Area Agency on Aging with a report of need. The report can be made anonymously.
Definitely back off, no one likes to lose their independence and it’s difficult for some when they begin to lose skills such as their ambulation skills. It’s good they can use a walker but it sounds like they could use some physical therapy to strengthen their ambulation skills. Many don’t like strangers coming into the home, and it may be that your grandparents are afraid that if someone comes in they will be ‘made’ to go into a nursing home. Assure your grandparents that is not the case, there are many programs out there to keep people in their homes such as a waiver or senior care program. Call your local Area Agency on Aging to see what’s available in your area or to speak to someone for caregiver support. You can arrange someone to come out to visit your grandparents to explain about home and community based programs that are designed to keep people at home and they can reassure your grandparents that no one wants to see them in a nursing home. They have a right to make choices, but the choices need to there so they can choose. I’m a caregiver, I’m over 50 and I have medical issues that have brought on a decline in my functioning so I know how difficult it can be to accept assistance. You grandparents have always ‘done’ for themselves and now that they can’t it’s difficult for them to admit that and accept help. Continue to reassure them that you want them to stay in their home and there is help available to those who need it to keep them in their home. Most important of all is to let them know you love them and want them to be around for a long time.
The same type of issues were coming up with my dad. We knew he could not live alone, the doctor even said that he should not live alone, but he wanted to stay in his home, and the family was getting so stressed out and worn down, making sure he had meals, personal hygiene, outings or some social life and keeping his home clean, getting him to doctors’ appointments, etc. it took all four of us full time just to get it all done. After years, he could still not see all of the work it took, so the 4 of us decided to back off. We made sure that he had food, made the house as safe as possible, life alert, cell phone, he could not drive a car, so we sold the car, we did not want him getting behind the wheel, but wanted him to keep his social contact, like meeting the guys at McDonald’s for coffee, so we got him a electric scooter, and worried in silence that he did not get hurt. We visited him every day, but did not push him. Then something happened! He said that he wanted to see us all; he told us that he could not do it by himself. He told us he was willing to visit an Assisted Living Facility; he decided which facility he preferred. Your grandparents will never see how much is being done for them, unless they experience it for themselves. They still see that they are able of doing it on their own. They have to see for themselves that they cannot do it on their own. If they have a fall, or they miss a meal, be there to support them; when they are ready, they will be ready on their terms. Your biggest problem is your family. Unless, the whole family can agree to step back, the grandparents cannot ever figure it out. Why should they, as long as they are the center of attention, and being waited on for every need, I wouldn’t be in a hurry to change either.
WTDAM (me again) comment:
Great example, “lostfamily” of using the approach I outlined above. And as I said on p. 50 of “What to Do about Mama?”: Of primary importance is the individual who needs the assistance and care. If that person’s values and wishes are not respected and taken into consideration, you are bound to run into resistance and conflict. Who doesn’t want to remain in the driver’s seat of life? It is imperative to respect your loved one’s independence and dignity—it is, after all, that person’s right to make choices and decisions.