What to Do about Mama? Expectations and Realities of Caregiving
First, we would like to thank you for supporting the second edition of What to Do about Mama? To show our appreciation, WTDAM will be available free to download on Kindle throughout this upcoming Mother’s Day weekend. WTDAM may not be a book that you WANT, it is a book that you NEED–even if you think you don’t need it yet, or that you are too darn busy, or you just want to put it all behind you. What to Do about Mama? not only has a lot of useful information, but also a great deal of validation for the thoughts and feelings related to both sides of caregiving—providing and receiving.
After the Pandemic: Visions of Life Post COVID-19
After the Pandemic: Visions of Life Post COVID-19 has been released. Twenty-five Sunbury Press authors contributed twenty-seven chapters about the possible impacts of the COVID-19 pandemic on society. Based on their experiences in a variety of fields, they provide their projections about the changes facing us, many of which have already been underway for some time. It is available to online and brick and mortar bookstores worldwide, including through the Sunbury Press store, Barnes and Noble (online), and also Amazon.
SunburyPressBooksShow–COVID-19 and the Family
Saturday, May 9, 2020 @ 9:00 AM on the BookSpeak Network
Panel Discussion with Lawrence Knorr, Publisher, moderating.
Sunbury Press Books Show–COVID-19 and the Family
In response to the “Not quite the plan’s” post on “Dating and caregiving:”
I refer you to “Marianne’s Story” in my book What to Do about Mama? Marianne opens her story with the comment, “I provided care for both my mother and my father. My mother had multiple sclerosis my entire life, so my caregiving began as early as age 4, when I simply offered my hand to help steady her walking gait.” (WTDAM p. 116) She goes on to describe her caregiving role as her responsibilities grew over a period of 40 years.
Later in her story Marianne states, “My husband, too, has had a lifetime caregiver role both with his sister, and later, his mother.” (WTDAM p. 119) (Sister is a post-polio survivor who must sleep in an iron lung every night. Mother lived to be a centenarian.)
One can conjecture that early on in their relationship, these two individuals were attracted to one another based on their similar life experiences and value systems; and taking that one step further, that their successful multi-decade marriage was built on mutual understanding, cooperation, and commitment.
My point? Keep looking. You, too, may find your diamond in the rough.
So another relationship ended a couple of months ago and I am back to the wilds of dating life. This week I have my first first date in a couple of years and am of course contemplating how to juggle dating and caregiving for Mom.
I find myself staring at the question on the online dating site I frequent: “Would you date someone who still lives with his/her parents?” Answer– from every guy who appears like an interesting date for me: “No.”
And then there is the message from someone who thinks he is being creative by asking me what the movie about my life would be titled. I ponder whether I share one of my possible titles for my memoir about this whole caregiving journey. Not quite the plan?
At what point does one mention, by the way, I live with my mother with rapidly advancing dementia? Is this a topic for…
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Ambushed by Eldercare? You’re Not Alone
7 strategies to help you cope
Source: Google Images labeled for reuse
Late one night the phone rings. Your 80-year-old mother has had a heart attack and your life turns upside down, bringing worry, stress, anxiety, and uncertainty, your days punctuated by one crisis after another.
More than 54 million Americans are unpaid caregivers to their family members, two-thirds of whom are women (Matthews & Blank, 2013). Pulled in multiple directions at once, many are caring for their own children, as well as older relatives, and their numbers are only increasing as the population ages.
“It is a terrible situation to have so many people to care for and yet also have work responsibilities and other commitments—as well as the need to take care of oneself and remain sane,” says Barbara Trainin Blank, author, with Barbara Matthews, of What to Do about Mama? A Guide to Caring for Aging Family Members (2013, p. 43).
Blank, a professional writer accustomed to multiple deadlines, admits that, “Taking care of my mother may have been one of the most difficult things I’ve ever had to do in my life” (2013, p. 34). Her mother lived 180 miles away, her brother lived much closer, but in many families the weight of caregiving often falls upon one person.
Cascading stress, sleeplessness, grief, guilt, family conflicts, anger, resentment, exhaustion, and burnout—caregiving takes its toll. Psychologist Dale Larson calls this falling into “the helper’s pit” (1993, p. 38). How to stay out of the pit? Larson says to stop blaming yourself if you feel overwhelmed by caregiving and ask instead, “What can I do about this situation?” (1993, p. 55). Drawing insights from their own experience and a wide range of caregivers, Matthews and Blank offer seven powerful strategies:
- Start Planning. If you have older family members, begin asking about their values and wishes for the years ahead. Do they need to scale down, move into a more accessible home, closer to family members, or into a continuing care community? Determine what needs to be done and the support caregivers will need to handle these challenges. If your relative is intent on staying at home, who will pay the bills? Take this person to the doctor? Assist with meals and the activities of daily living?
- Get Community Support. Find out about support services in your relative’s community, such as the local Agency on Aging. Check out senior services and information online such as ElderCarelink (link is external)or SeniorsList (link is external).
- Reach Out. Network with other family members and your loved one’s neighbors and friends. Check out possible support from your relative’s church or synagogue. And consider joining a caregivers’ support group to share information and personal support.
- Take Care of Yourself. Too many caregivers wear themselves out, getting sick themselves. Watch for signs of stress and burnout. Are you:
- Feeling run down and exhausted?
- Having trouble sleeping?
- Easily annoyed?
- Getting sick more often?
- Having trouble concentrating or remembering things?
- Becoming socially isolated?
- Feeling helpless, depressed, or overwhelmed?
Caregiving is a serious responsibility, but don’t become so engulfed in it that you stop being yourself.
- Make time for a regular stress management practice. Barbara Trainin Blank says she dealt with the challenge of caregiving by walking in the mornings with a friend. Regular exercise is good for both body and mind, relieving stress, activating our immune systems, and helping dispel depression (Rethorst & Trivedi, 2013).
- Take regular breaks. Matthews and Blank emphasize the need for regular “respite care,” especially if you are caring for your loved one’s daily needs. If possible, recruit other family members. Check out senior day services and respite referrals at the local senior center.
- Keep up with your own interests. Blank stayed in touch with friends and participated in community groups—relieved to spend time with people who were not dealing with the chronic stress of caregiving. She continued to do some of the things she loves: creative writing projects, watching old movies, and donating to causes she believes in.
As Matthews and Blank (2013) found in their surveys of more than 30 caregivers, the key is to balance your own needs with compassionate care and realistic problem solving. How you handle the challenge of caregiving will make a major difference in many lives, including your own.
Matthews, B. G., & Blank, B. T. (2013). What to do about Mama? A guide to caring for aging family members. Mechanicsburg, PA: Sunbury Press. http://www.amazon.com/What-Do-about-Mama-Members/dp/1620063158/ref=sr_1_1?s=books&ie=UTF8&qid=1427846005&sr=1-1&keywords=what+to+do+about+mama (link
Larson, D. G. (1993). The helper’s journey: Working with people facing grief, loss, and life-threatening illness. Champaign, IL: Research Press.http://www.amazon.com/Helpers-Journey-Working-Life-Threatening-Illness/dp/0878223444/ref=sr_1_1?s=books&ie=UTF8&qid=1428530954&sr=1-1&keywords=The+Helper%27s+Journey
Rethorst, C. D., & Trivedi, M. H. (2013). Evidence-based recommendations for the prescription of exercise for major depressive disorder. Journal of Psychiatric Practice, 19, 204-212.
Diane Dreher is a best-selling author, personal coach, and professor at Santa Clara University. Her latest book is Your Personal Renaissance: 12 Steps to Finding Your Life’s True Calling.
Katie’s life before her TBI was full of profoundly meaningful activity. Katie was dedicated to helping others in a multitude of ways. (See “The Plan” Katie’s Story Part Six.)
Katie’s life now revolves around her daily care.
Additionally, however, there has been significant improvement in her social interaction. She is able to go to church. Friends come to visit, and together they enjoy activities like dinner and movies and games.
But I’ve been thinking about ways to rekindle the element of altruism that was once integral to Katie’s objective in life.
I asked Katie if she would like have a pen pal, and suggested
Gabrielle Giffords http://en.wikipedia.org/wiki/Gabrielle_Giffords or
Sharon Budd http://www.pennlive.com/midstate/index.ssf/2014/10/victim_of_i-80_rock-throwing_s.html
The idea did not pique her interest.
I talked to Sam about joining a support group so that he and Katie could have the opportunity to both give and receive encouragement by sharing common challenges with other brain injury patients.
Sam did not discount the idea entirely, so I think I will bring it up with Katie at our next visit.
Sam did say, however, that he is not personally under a lot of stress, and although that is probably not entirely true, I will say that his demeanor has improved greatly. Sam appears to be doing better than I have seen him for more than two years.
When I asked Sam specifically if life has improved for him since Katie came home, he replied, “Yes.” This I was obviously pleased to hear.
I’ve been struggling somewhat over continuing to blog Katie’s Story. There is no longer any “big” news to report—and that is a good thing.
So, although I will leave the door open for future posts about Katie, I would like to sum up Katie’s Story with the following observation.
Life is unpredictable and sometimes catastrophic. What happened to Katie was tragic and overwhelming. Although Katie’s life will never be the same as it was before her brain surgery, it is better. Arriving at this place was improbable, but every effort has been worthwhile.
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:
It’s been a cold snowy winter, but…
Change is in the air and
spring is just around the corner.
Sam took Katie to church.
Sam took Katie for a walk outdoors.
Judene and I took Katie out to sit on the deck.
A couple of neighbors stopped by.
Does this all sound:
Well, maybe so…but in this case it is:
The problem with funding has been rectified. The only major item remaining to be acquired is the shower wheelchair.
The change of caregivers has taken place. “Faith” started last Sunday, and already she is a comfortable part of the family. Faith is a take charge individual. She sends Sam out of the room when she performs Katie’s personal care. Moreover, she is a task-master with Katie’s exercises. This is important since Katie has lost a lot of her inherent drive.
The experience with Grace was an opportunity to learn and a sturdy building block for a successful experience with Faith. Sam has learned that he can step back and let Faith do her job—he is in fact, eager to do so. It is obvious that Sam is relaxing as stress decreases.
With Faith, I hope to believe:
THIS PLAN WILL SUCCEED!
When Judene and I visit, we listen and observe. Later we brainstorm to identify obstacles, needs, potential solutions, and how we can help. But at this point, we have tabled our thoughts until the more immediate fundamentals are taken care of. Sam doesn’t need more on his plate than he can handle at one time and right now his plate is full:
- First of all, there has been some progress since funding has AGAIN been approved, but there is still no green light on the flow of funds.
- Secondly, Gloria has decided that the physical aspects of providing care are too difficult for her to handle. She and Sam have made good progress at working together as a team. But the fact remains that it is essential that Gloria is able to work independently so that Sam has the ability to come and go more freely. Katie has gained 50 pounds since becoming disabled and has almost no ability to assist with her own movement. Gloria is not a young woman and she is small. The concern that she will lose her own health and well-being is undeniable.
Some ideas for Sam: You are spending most of your time at home in the role of caregiver. You need to learn to step back and try to reconnect with Katie as her husband. I know that’s quite a challenge because Katie has changed. It’s like forming a relationship all over again, and learning to do things differently the second time around.
- Start with small things like: having breakfast together at the kitchen island; discussing the news of the day; planning for an outing or two each week.
- Find free time to go off by yourself, especially when Katie is napping; reconnect for dinner and TV or a movie during the evenings you do not work.
- Hire another caregiver to assist with getting Katie ready for bed.
Some ideas for Katie: You would like to walk again and are frustrated that every day is the same as the day before. You need to learn to take control over your life again by speaking up, taking responsibility, and making choices. Work on developing the perseverance to do things that are difficult for you.
- Set small / short-term goals.
- Establish a routine to do cognitive and physical therapy, and then DO it.
- Read on your Kindle.
- Get help to work on picture books on the computer.
- Write to Gabrielle Giffords to share your experience.
Some ideas for Sam and Katie:
- Go to church services.
- Join a Stroke Support Group so that Katie feels like she can make a contribution.
- Try other community outings.
- Attend the grandchildren’s sporting events.