What to Do about Mama? Caregiving and its many Themes

Book Review- What to Do about Mama? By Barbara G. Mathews and Barbara Trainin Blank

What I like about this book is the different perspectives on caregiving as there are many contributors. This provides any individual or professional reading the book with different scenarios, which include common situations and feelings.

The authors also describe their own care giving experiences. For Barbara Matthews, she became a caregiver for her mother-in-law. Ten years after her father-in-law died, her mother-in-law came to live in her hometown. At first, the response was no, but as health problems began to appear, the move happened. A family meeting with all helped “seal the deal” for her to relocate and be closer to family to have assistance as needed.

Another health crisis occurred creating a cycle of hospitalizations and rehabilitations. She then moved in with Barbara and her husband on the first floor of their house. Increasing assistance was added as her mother-in-law required it. Eventually, hospice services were put into place which also gave Barbara a break (respite) from providing total care.

For Barbara Trainin Blank, she was the caregiver for her mother who lived quite a distance away.  After her father’s death, her mother began presenting with forgetfulness which progressed. Her mother did not want to go to a nursing home or residence and Barbara did her best to honor this by having assistance come to her mother’s home environment. She became a long distance caregiver, an advocate, an organizer, and in some ways an unpaid care manager-organizing all the details of her mother’s life from medical appointments, to home care workers, arranging transportation, etc.

Caregiving itself has a different definition for each individual providing it. It is hard work from what I have read in the book and witnessed myself in interactions with clients and family. While I have children myself, caregiving for an adult is very different.  The needs of a child can be more or less than the needs of an adult and much easier to carry/lift a child than an adult! Also, as Barbara pointed out to me, for her an important difference between caregiving for children vs. care giving for older adults is that the first is a hopeful process preparing the child for a good future and the second is a process of trying to make life as comfortable as possible for the aging adult as they proceed toward the end of life.

Some common themes in the book are:

Care giving responsibilities:

Local or long distance caregiving?

Alone in acting as a caregiver or shared responsibility?

Potential tasks: financial care, physical care, respite, paid caregivers, volunteers, professional assistance.

Caregiving profiles:

Some quit their jobs to provide caregiving to a spouse or other family member. Some are trying to balance work with raising a family and caregiving (sandwich generation), some are alone in their caregiving role while others have siblings or other family member’s support/assistance. Some are caregiving locally and some long distance.  It is difficult to watch a parent, spouse, child or friend deteriorate and age, just as it is difficult for the person this is happening to, to admit they are aging and deteriorating, and need help.

Roles and Responsibilities:

If you can, define what the person needs assistance with: IADL’s Instrumental Activities of Daily Living; cleaning, meal preparation, shopping, transportation, finances, medical appointments, medication management, communication and/or ADL’s- Activities of Daily Living; bathing, toileting, dressing, feeding, ambulating(mobility). Determine who is assisting with what and whether the individual in question will allow the assistance.

Caregiver emotions and need for self-care:

This to me should be a no brainer; everyone needs some help and should be open to accepting and asking, but it is not easy for everyone to do so.

Self-care should be regularly scheduled as much as possible into the daily and weekly routine.

• Arrange or accept assistance from family, friends, agencies/organizations, paid companions or homecare workers, and perhaps volunteers.
• Take vacations or days off if you cannot go away on vacation (financial reasons, other commitments)
• Give yourself a night off every once in a while.
• Schedule your own appointments and keep them for medical reasons and check-ups, beauty salon appointments, to go grocery shopping, etc.

Regarding emotions and support for the caregiver:

• Look into support groups whether run by professionals or volunteers.
• Seek assistance of a counselor or therapist if you think it would help.
• Call or schedule coffee breaks or lunches out with friends to talk.

Family Relations:

Communication is important between family members, between professionals and family, between other caregivers, and one person needs to be the designated person as the main contact. As a professional, I can state it is easier to have one family member to talk to, to share information with. If a phone call will not work or is not possible, then a group email addressed to the main contact with the other family members cc’d is another option. This way everyone is in the loop and aware of what is happening and the information is written.

Each caregiver or main contact has their own definition of “doing one’s part.” Caregiving one’s parent(s) is not easy and can be difficult at times as the child-parent dynamic changes. It is reverse roles and now the adult child is parenting the adult parent!

I have worked as a case manager with older adults for 14 years and fortunately I have known most of my clients for that length of time. It is hard to watch someone become frailer. I imagine it is more difficult and more emotional for a family caregiver re: a parent, child, spouse or other family member.

Barbara Matthews shared with me that over the past year of working on her social media sites, this “caregiving in a nutshell” definition has evolved:

Caregivers get involved with care giving to meet a need, solve a problem, or deal w/ a crisis.  The situation often improves—for a while.  Many times caregivers do not take into account the process of aging cannot be controlled, needs will increase—sometimes over many years, or how heavy the burden can/will become.  Therefore, it is important:  to have realistic expectations about care giving, to be prepared for the unexpected, to communicate expectations clearly to the “others” and to develop a care giving contract of shared responsibility to be signed-off on by all.

The book is worth reading and is very comprehensive.

By Victoria Brewster, MSW

*First posted at: http://northernmsw.wordpress.com/2014/10/29/what-to-do-about-mama-book-review/