Fostering your parent’s independence

Although I am now a senior citizen, finding balance continues to be one of the most challenging aspects of being a parent. Parenting my children as they grew up often felt like walking a tightrope, and even though my children are now grown with families of their own, I frequently feel the same way.  The funny thing is, as a caregiver for a parent, parent-child roles can become reversed, and you find yourself on that tightrope all over again.  I think the article 4 Ways a Caregiver Can Encourage a Loved One’s Independence by Barry J. Jacobs, AARP is a good example.

In this article, Jacobs describes the problem he had finding the balance between doing too much and doing too little for his mother, saying: “If I had done nothing at all for her, then I believe she would have floundered. But I finally realized that by doing too much for her, I trampled her dignity.” 

His four recommendations, with my interpretations, follow:

  • Powwow and plan:  Communicate with your parent early, often, and openly. 
  • Don’t jump in with help too quickly. It is advantageous to allow your parent to be as self-reliant as they can be.  Doing too much, too soon, fosters dependency.
  • Focus on what your loved one can still do. No one likes to feel marginalized—as if they no longer have relevance.  Build upon your parent’s strengths. 
  • Frame help as empowering. Sometimes seniors regard “aids” as demeaning; they avoid using them because they think it makes them appear “old”.  Discuss how using “aids” can open up more of the world to them:  with a hearing aid you won’t miss so many conversations; with a transport chair you will be able to go many more places.  

After reading Barry Jacobs article, I identified three examples of when it was difficult for me to find the best level of balance with my mother-in-law, for whom I was the primary caregiver. 

The first was when she moved into our home after multiple episodes of falls that resulted in injury, hospitalization, and rehabilitation. For weeks I assisted with her daily morning exercises. After she had mastered them, I asked her doctor if it was safe for her to do them on her own–to which he replied, “Yes.” I suggested she do them at the kitchen island while I was buzzing about with the my household chores.  But, she did not take the initiative and I let it drop. 

Another task I encouraged her to do independently was to dress herself after I had set out her clothes. 

Although it was a slow and difficult process, I expressed to Mom that she would lose all her skills if she didn’t keep working at them.

What to Do about Mama? p. 23

Lastly was the task of setting up her medications.  I had offered a few times but she always turned me down.  My mother-in-law disliked the medication prescribed for congestion because it made her cough, and therefore, she did not take it regularly, as directed. Because of her advanced congestive obstructive pulmonary disease (COPD), it wasn’t long before she became ill and was hospitalized with pneumonia .  After she was released from the hospital, her daughter spoke to her mom and insisted she allow me to set up the medications.  That did not set well, but the family did not relent. 

After the phone call was over, Mom came out, rolling her walker with a vengeance, and said, “Are you happy now?”

What to Do about Mama? p 13

Whether or not I made the best decisions, I do not know.  But I do know–it can can be tricky!

Mom’s moving in

It is important to consider the living environment you can provide when you are considering moving a parent into your home, according to the Caregiving Support Services article How to Prepare your Home When a Senior Loved One is Moving in:

The article discusses the following factors:

  • Financing
  • Storage space
  • Bedroom with single floor living capability
  • Handicapped accessible bathroom near bedroom
  • Look for Ways to Make Mealtime Easy
  • Make way for mobility devices
  • Consider outside spaces

As detailed in What to Do about Mama? my husband and I felt good that we were able to provide his mother with a great living environment when she moved into our home. Very little preparation was needed.

David and I gave Mom our first-floor master bedroom suite—bedroom, bathroom, and sitting room—and filled the rooms with her
furniture and doll collection.

What to Do about Mama? p. 12

Another caregiver reported the following:

My husband and mother-in-law discussed the options. She had
the choice to move to assisted living, or to utilize her finances to
add a handicapped-accessible living area onto our home, which
was what she opted to do. We built a large living area with a
handicapped-accessible bathroom that extended off our existing
family room so we could provide the assistance she needed.

What to Do about Mama? p. 125

Ironically, some years later that caregiver was able to return home to live after a traumatic brain injury because she had that living area and a a 24-hour caregiver.

There are many factors to consider when moving a parent into your home, but having a safe personal space to live is certainly important.

Journaling and stress relief

The Daily Caring article 6 Benefits of Journaling for Caregivers lists the following reasons to journal:

  • Reduce caregiver stress
  • Improve your health
  • Find solutions to tough challenges
  • Make caregiving easier
  • Resolve arguments with other people
  • Get in touch with yourself

Visit the following link for the complete Daily Caring article

During my caregiving experience I was active in a caregiver’s support group run by a local hospice. One of the group leaders suggested to me that I keep a journal. I found journaling to be a means to finally put an end to the incessant agonizing and scrolling (obsessive thinking) I was experiencing.  After my caregiving responsibilities came to an end I was pondering over my journal and other caregiving records when I thought, “I have all this stuff; what can I do with it?”  It was then that I decided to write a book about caregiving.  It was my hope that others could benefit from what I had learned. 

Another caregiver support technique is journaling, a method found to have a positive impact on physical well-being as well as emotional health. Writing about stressful events helps you to both face and deal with the situations that negatively impact your health. It knocks down the walls you have built so that you can gain understanding of yourself and your life circumstances. Writing about difficult problems and feelings (not only your own, but those expressed by the “others”)—rather than stewing over them (“scrolling”)—helps you gain understanding about other points of view. Writing about painful emotions helps decrease the power they have over you, so you feel more at ease, able to move beyond the past and stay in the present. Journaling is also an effective tool to help you resolve differences with others.

What to Do about Mama? p.183

“It’s good to do what my co-author did, and I didn’t—in spite of being a professional writer—keep a journal. This will help give you strength, put things in perspective, and help you remember.” Barbara Trainin Blank

Appreciating caregivers

Let’s face it.

At some point or another those of us taking care of elderly family members with physical disabilities or memory loss or both will look for help from outside aides.

We will look for them desperately — asking professionals, friends, other people caring for family members, agencies, etc. etc. They need certain characteristics, schedules, references, experience.

Though we know how hard some of them work, how relatively little they get paid, and the complications of their lives — such as their own domestic responsibilities — sometimes we act human. That is, we complain, we doubt.

It’s not easy being an aide, and it’s not easy being an employer. We don’t always appreciate.

But, according to Ai-jen Poo, executive director of the National Domestic Workers Alliance representing the rights of domestic workers (in a Q&A in The Washington Post), COVID-19 means there “has to be” a new appreciation in our society for domestic workers, caregivers, and essential workers across the board.

Poo called this a “transformative shift in our culture,” which will bring about, she hopes, an investment in care jobs, turning them into family-sustaining jobs with real benefits. Meanwhile, the Alliance has created the Coronavirus Care Fund to offer emergency care assistance to domestic workers in need.

Concerns of home aid

Nearly everyone wants to stay out of long-term-care facilities if it’s at all possible. The ability to do so depends on many factors, including a person’s condition and finances. Also a significant factor is a care provider, whether a family member or an outside help or both.

But COVID-19 brings new concerns even to those who are giving family members care in a private home, according to an article in the New York Times on June 9.

Even if a family caregiver gives primary care to the care receiver, he or she often feels it necessary to have that care buttressed by a professional. But in today’s climate, that often means protecting the loved one from coronavirus through locking down the house and possibly to ask one of the aides to stay home.

And one aide is asked not to come in, it is often because of the composition of that helper’s household. That may mean having a lot of children or an aide who visits other clients’ — all of which can result in greater risk of exposure. So does traveling on public transportation.

For those used to relying on hand-washing and gloves but not to masks, acquiring protective equipment can be hard, when nursing homes and hospitals are the priority. Morever, much of the attention in the press and elsewhere focuses on long-term-care facilities, as it should be, said The Times, since their residents and employees account for nearly 40 percent of the nation’s coronavirus death.

But far more Americans rely on paid home care.

Another problem is that 35 states set no requirements for home care aides. People who cut hairier licensed but not those who care for our elderly loved ones.

Whether coronavirus continues or fades away, there are clearly many issues to think about when it comes to home care of family members.

Attitudes about Caregiving Education

I don’t need it!
I’m too busy!
I’m so over it!

Family Caregiver Education – The Caring Generation®
by Pamela Wilson May 30, 2020
The Caregiving Generation Talk Radio:  Caregiver Training

Honestly? Caregiving can be a real bummer. Although nobody wants to talk about being or needing a caregiver, it is a subject that we can no longer ignore.  The COVID-19 pandemic has made it abundantly clear: 1) Adult children are worried about their parents getting the virus; and 2) Caregiving is one more item to add to the “Things to Do Better” list for future generations.

After my 7-year stint as a caregiver, I wrote What to Do about Mama?  I thought that people just might benefit from what I had learned from both my job as an Assessor at the Area Agency on Aging and my caregiving experience. Since the book was first published, I have found that caregiving is a topic people avoid—like the plague.  And of course, there’s now a lot of irony in that statement. 

On her Caregiving Generation Talk Radio program, Pamela D Wilson, stresses the importance of  Family Caregiver Training and Caregiving Courses.  The following is a synopsis of her discussion peppered with some of my own thoughts and views. 

Caregiving is an unexpected experience—something we don’t usually plan for until a health care crisis occurs.  Like the pandemic (or a plague) caregiving needs can come on suddenly and find you unprepared.  Adult children may not even realize they have taken on the role of caregiver because helping parents by picking up groceries or prescriptions is not how they define the term.   But then needs escalate and the list grows to include such tasks as providing transportation to doctor appointments, assisting with money management and bill paying, providing meals, and making legal, medical and care decisions. Working caregivers who become distracted and are unprepared can feel like life is reeling out of control, not knowing where to turn for help.  Even today, caregiving is viewed as a family responsibility. The workplace may not recognize how employees are effected by their caregiver responsibilities or how the stress impacts the workplace.

Developing a Care Plan Good communication among all the significant parties is the best means to develop a successful caregiving plan. However, communication skills are developed over a lifetime. They don’t suddenly become “good,” especially when family members are dealing with the problems and stresses that arise from caregiving needs. 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.

What to Do about Mama? pp. 152-153

It is Pamela Wilson’s position that caregiving courses should be made available through corporate employee health and wellness programs—much like maternity leave and support programs for families raising children.  Family caregiver education and support not only minimizes unexpected and disruptive crises by making a significant difference in the lives of caregivers and their elderly parents, it also helps companies achieve health and wellness program goals of reducing health insurance costs and use.  I would add here that family caregiver education would also be a beneficial addition to life skills curriculums in our schools.   

My mother’s death eased things for me at work, but only to the extent that I realized my boss so resented my need for “flexibility” of hours during my mother’s lengthy end, that our relationship was over. Luckily, an advocate of mine in senior management had another position she felt would be ideal for me—and she offered it to me at my same salary. So, I took it. It’s been a whole new lease on life! I really feel energized, and I’m hoping to keep it until I’m seventy. (I had to take out some loans to finance all the help I had, so this will expunge all that debt by the time I finally do retire.) If I had been allowed to work from home, I would not have needed to take out loans, but my boss at the time would not even consider it. That still hurts. I was literally paying people to watch my mother sleep—something I could have done while I worked from home. But, getting over this means getting over the anger: Get mad; get over it!

What to Do about Mama? pp. 293-294

Pamela Wilson has developed a family caregiver education course. 
Taking Care of Elderly Parents: Stay at Home and Beyond consists of the following:

  • Module 1 Managing Emotions, Family Relationships and Elderly Parents who Refuse Care
  • Module 2 Signs Elderly Parents Need Care: Creating Strategies and Starting Conversations
  • Module 3 Activities of Daily Living, the Effects of Aging on Physical Activity
  • Module 4 Home Safety for Seniors
  • Module 5 Stay Healthy: Daily Routines to Support Positive Care for Elderly Parents
  • Module 6 Memory Loss
  • Module 7 Paying for care for elderly parents
  • Module 8 In Taking Care of Elderly Parents: Stay at Home, and Beyond

While I was listening to Pamela Wilson’s podcast, I was gratified to note that her curriculum addresses a great deal of the material contained in What to Do about Mama?  Expectations and Realities of Caregiving.  This is not a book by experts—but a book based upon the real-life experiences of caregivers in the trenches.  In my opinion, family caregiver education should be based on theory and experience because both perspectives have relevance.  

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—or whether you place equal weight on both. Establish common goals. Divide responsibility based on the strengths and abilities each of you brings 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.

What to Do about Mama? p. 155

Family Caregiver Education creates awareness and provides helpful information. Prepare today to be ready tomorrow. For those people who avoid the subject, becoming a caregiver will be a shock. For those who face it, you will know what to expect and the road will be smoother.

[We} have completed our wills, living wills, powers of attorney, and medical powers of attorney. And because it befits us all to have the “difficult discussion” well before the time of need arises, we have completed the questions found in The Conversation Project Starter Kit and discussed them with our children.

What to Do about Mama? p. 302