A Guide to Caring for Aging Family Members

Archive for the ‘Assuming Caregiving Responsibilities’ Category

Psychology Today Post

https://www.psychologytoday.com/blog/your-personal-renaissance/201504/ambushed-eldercare-you-re-not-alone

Ambushed by Eldercare? You’re Not Alone

7 strategies to help you cope

Post published by Diane Dreher Ph.D. on Apr 08, 2015 in Your Personal Renaissance

Source: Google Images labeled for reuse
Psychology Today
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:

  1. 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?
  2. 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).
  3. 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.
  4. 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.

  1. 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).
  2. 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.
  3. 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.

References

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.

http://www.dianedreher.com

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An Optimistic Update: Katie’s Story, Part Twenty

OptimismFor the first time, I am reporting to you with a sense of confidence.

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.

Faith Building BlocksThe 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.

Faith stones

With Faith, I hope to believe:

THIS PLAN WILL SUCCEED!

Success ahead

Katie is Emerging: Katie’s Story, Part Twelve

Well, Katie may have had the date wrong—but the concept was right.  KATIE IS GOING HOME on Monday, December 15th.

The Provider met with the nursing home staff this week to compile a specific and detailed plan for Katie’s care.  I was invited to attend the meeting, and I asked Judene to accompany me because she always provides good perspective and moral support.

When Judene and I arrived, it was immediately evident that KATIE IS EMERGING!

Butterfly

Katie was excited!

When the Provider began checking down the list–

  • The medical bed, air mattress and Hoyer lift will be delivered Friday.
  • The Home Health Agency will start on Tuesday. They will provide a nurse and therapists.
  • Your caregiver, “Gloria” is very anxious to get started. She is moving in on Friday.

Katie began slapping her leg.  “This is how I clap,” she said.  And we all clapped with her.

Hands Applauding

We talked about meals:  Gloria cooks very healthy food.  What do you like for breakfast?

We talked about treatment and therapy:  Gloria can tend to your wounds.  She can help you with your stretching exercises.

We talked about visitors:  Gloria will be glad to have your church group over to sing hymns.

Choir

Everyone is doing what they can to facilitate the transition home and to make the plan work.

  • Katie is required to see her family doctor within 5 days—he has offered to make a house call.
  • Sam purchased a wheelchair van at auction. It will provide her with more opportunities–many, many more.
  • Family and friends have made commitments of support.

Sam and Katie’s home will be hectic for a while. But I believe the plan will succeed because…

Team

We are on Katie’s TEAM!

 

 

Not in My Wildest Dreams: Katie’s Story, Part Ten

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.

Dreams

Even in my wildest dreams, I did not dare to imagine…

The plan was based on two major factors:

  1. 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.
  2. 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…

Missing Childhood: The Overlooked Caregivers

Caring for Grandma

Caring for Grandma

From AgingCare.com @ http://www.agingcare.com/

Home » Blog » Life as a Caregiver » Articles » The Overlooked Caregivers No One Ever Talks…

The Overlooked Caregivers No One Ever Talks About
by Connie Siskowski, Blogger President, American Assoc. for Caregiving Youth

Although it was more than five decades ago, the memories of caring for my grandfather as a pre-teen—giving him medication, even bathing him—are never far from my mind. To this day, 54 years later, I can still feel his cold skin as I went to give him his 2:00 am medication.

At that time, words like “abandonment” and “trauma” were not often used to describe childhood experiences.

I left home to become a nurse and grew professionally in my career. However, the traumatic experiences of caregiving and missing out on some of my childhood left me less than grounded.

In 1998, at the First International Conference on Caregiving in London, I learned about the challenges faced by youth caregivers and began to understand the significance of those experiences.

That summer, I went on a mission trip with teens from my church—one boy’s dad had recently died and another girl’s dad had pancreatic cancer. Many of the other kids also had concerns about their parents and grandparents’ health.

In 2001, my new husband, encouraged me to return to school to get my PhD, thinking it would increase my earning power. During the research process, I discovered that there was—for the first time in the U.S.—an unusually high number of middle and high school students who were dealing with family health conditions. More than a third of these children were negatively impacted at school. A few more years would pass, and the data (along with some media attention) revealed that there were between 1.3-1.4 million caregivers, ages 8-18 years old in the US.

In 1998, I had started a nonprofit organization to provide volunteer support services to people who were homebound and their caregiving families. Once the analysis of my research data was complete, I was compelled to now turn my attention to youth caregivers. I thought that, supporting them academically and personally, and strengthening their families, could perhaps ameliorate the sacrifices they were making because of their caregiving responsibilities.

Thus, the Caregiving Youth Project was born in the fall of 2006, at one middle school in Boca Raton, FL. Professional staff facilitate support groups, offer classes on life skills, and provide other resources to ease some of the responsibility and give youth caregivers the chance to be kids.

Over the coming months, I will be sharing with you the experiences and insights of these school-aged caregivers and the men and women who help support them in their endeavors.

Barb’s comment:

I really identify with Connie’s comment, “The traumatic experiences of caregiving and missing out on some of my childhood left me less than grounded,” although in my case, I would have to change the word “caregiving” to, “having a dying parent.”

When at a Caregiving Conference a few years back, I attended a hospice workshop.  A comment was made about the support systems available to children.  When that statement was made, I found myself suddenly in tears.  Oh…if they would only have had something like that when I was a kid!

Like you, Connie,  I grew up during the 50’s and 60’s.  When my father was diagnosed with non-Hodgkins lymphoma, the doctor recommended that he not be told that he had a fatal disease.  My mother did tell my brother and me (15 and 10, respectively), and we were instructed not to tell anyone.  It was a “secret” that was never discussed.  Yes, it was traumatic, and I absolutely felt abandoned.

Thank you for focusing your attention on the children and their needs.  Thank you for helping them maintain their childhood so they do not have to “miss out” on those years as did you and I.

When Parent-Child Lines become Fuzzy

Click on the Patriot-News link below to see a Doonesbury cartoon about role reversals:
– The Patriot-News.

A response to an AgingCare.com article:
http://www.agingcare.com  Home>>Caregiver Support>>Family & Relationships>>Articles>>Switching Roles:  Coping with Your Rebellious Aging Parent.

When I was an Assessor for the Area Agency on Aging I often met with senior women and their daughters.  When I directed a question to the senior, it was not uncommon to hear the response, “Ask my mother here,” while indicating her daughter.  Clearly they were referring to the issue of “role reversal,” which can be petty doggone tricky to navigate.

In the AgingCare.com article, Switching Roles: Coping with Your Rebellious Aging Parent,

Now who's rebellious?

Now who’s rebellious?

Carolyn Rosenblatt states:  “You can’t just let a parent with signs of dementia or other significant memory problems go on as if nothing were wrong, even if she gets upset with you. At some point, the adult child who loves a parent must step in. You may end up setting limits, making new rules, or taking over certain decisions. This is not easy for most people. We are so accustomed to our parent making her own decisions, that to dare to tell her what to do is very uncomfortable.”

Carolyn is correct that reversing roles with parents is very difficult.  But it is not always clear cut as to when to do so.  When it is determined that you must step in, and the parent-child line becomes fuzzy, it is always important demonstrate respect for everyone’s roles.

An initial question to consider is:  What takes precedence?  Autonomy or safety?  If the senior’s values and wishes are not respected and taken into consideration, you are bound to run into resistance and conflict. After all, who doesn’t want to remain in the driver’s seat of life?

It is imperative to respect your loved one’s dignity—it is, after all, empowering to retain the ability to make choices and decisions. Show respect for your care receivers’ autonomy by seeking opinions and preferences throughout the care-planning process. Promoting as much independence as possible is key.  Furthermore, caregiving responsibilities generally escalate as needs multiply over time. The less able our loved ones become, the greater their sense of independence lost. And as needs escalate, so does conflict.

Two huge problem areas that Carolyn Rosenblatt mentions are driving and financial management.  These are both referred to in “What to Do about Mama?”  For example:

  • When our parents lose their ability to drive they require assistance with transportation, shopping, and running errands. And of course, since driving is synonymous with independence for most seniors, this issue may cause particularly intense conflict. As one son recalled: “When my father insisted that my grandfather stop driving, Grandpa, a generally sweet and mild-mannered gentleman, began to call Dad on the phone to curse him out soundly. I was glad that I never had to confront this issue with my own father!”
     
  • “As my dad began having problems managing the finances, it was difficult to ease him away from the task so I could handle the accounts. Eventually, we worked it out so he would ‘check’ everything I did, which kept him in the loop, but gave me full responsibility for handling bills.”

In my own personal caregiving situation, my husband and I felt that living in the safety of our home would allow his mother to be more independent and active for a longer period of time. We felt that although the first two years of our caregiving arrangement were really quite good, there was always an undercurrent that somehow my mother-in-law perceived me (her primary caregiver) as a threat to her autonomy.

I tried very hard to respect her independence.  I tried to empower her by presenting options and respecting her choices.  But if she perceived me “directing” in any way she felt her independence was threatened and I sensed her resentment.  Ultimately, I felt that most of the escalating friction could be attributed to my role as an in-law caregiver.  Switching roles, or even the perception of switching roles, is indeed difficult.

Caregiving Role Models

I often hear caregivers express different perspectives about their own children’s involvement in the caregiving situation.  If we are embroiled in a difficult experience, of course we don’t want a like-burden for our kids.  But is it really a good idea to shelter them from all responsibility?

As I said in What to Do about Mama?  “Baby boomers are on the precipice—getting ready to fall off and land firmly on the backs of our children’s generation. And they are so young! They are, after all, our children!” (WTDAM p.1)   

I think I can safely say that none of us wants to be our children’s

ball and chain.   burden

 

 

 

 

 

Some folks see caring for parents as a given:

  • “I’m not really sure what I thought about caregiving in the beginning other than it was what needed to be done, and as their children, this is what we do for our parents.” (WTDAM p.86)

But, in spite of any stated “willingness” to assume caregiving responsibilities, we are resolute in our desire to not saddle our own children with like-obligation.

  • “I know I don’t want the roles to be reversed and hope I never to get to that point.” (WTDAM p. 115)
  • “Given my experiences, I just hope I will have saved enough money so I can hire help, too, should the need arise. I certainly don’t want my kids to end up with this much responsibility for my later care.” (WTDAM p.120)
  • “We want to minimize the impact on our daughter, who is five hours away with a very busy young family.”  (WTDAM p.187)

Yet others point out their perception that caregiving was a positive example for their children, expressing the hope that the experience would contribute to their children’s personal growth.

  • “I feel it taught my children many valuable lessons as well.” (WTDAM p.57)
  • “I think it was wonderful for my two children to witness how we cared for their grandmother. We always gave her respect and showed gratitude for all that she had done for us. She needed us, and we were there for her. Although my children (young adults) were involved in the process, I probably would have involved them even more.”  (WTDAM p.196)

Some were pleased with the contributions their children made.

  • “Each of our adult children had an area in which they were able to offer help and advice; each offered to do what he or she could do from a distance. Our family has drawn together as we helped each other through this.” (WTDAM p.146)caring for grandma

Others were not.

  • “I was disappointed that my children did not develop a more loving relationship with their grandmother.”  (WTDAM p.171)
  • “My family had difficulty coping with the time I spent on my mother’s demands. They felt resentful at times. My children have their own lives now; they support me, but not my mom; they visit only at my request.”  (WTDAM p. 219)

Some children expressed gratefulness to their parents for taking care of their grandparents.

  • “I know from a personal perspective (and one of NOT being a full-time caregiver) that I enjoyed having my grandparents living with my mom. I didn’t worry about them being alone or having to care for themselves as they got older. Plus, it was enjoyable for me having the whole family together under one roof when I visited. As far as my grandparents were concerned, it was a very pleasant experience for me.” (WTDAM p. 139)
  • “My daughter said, ‘Thank you, Mom, for taking care of my Grandma and being such a good example for me.’”  (WTDAM p. 28)

In my own caregiving experience the greatest amount of support that we received for immediate and unplanned caregiving needs was from our son and two daughters. They involved their grandmother in all their family functions, brought their children frequently for visits, picked her up from the senior center when needed so that I could attend support group, and sometimes either visited or took her to their homes when we had no other coverage. The girls sometimes shopped for her when she needed clothing items or OTC medication, and returned and exchanged the items if they weren’t “exactly” right. Their support for their grandmother went well beyond what we had expected.

It fulfills me to know that my husband and I were good role models for our grown children. Keeping their interest in mind, I saw caregiving as an opportunity for a “teaching moment,” (well, actually more than a moment), where they would learn and internalize the real meaning of family commitment (and never did our children disappoint).”

We are glad that our grandchildren were able to know and love their great grandma, and that we gave my husband’s mother the gift of our children and grandchildren. We are proud of the love, support, and appreciation they showed her.

  • “Most importantly, at least from my perspective, was that she was central to the active life we were blessed to have with our family—three of her grandchildren and eight of her great grandchildren. She was always concerned about whether the little ones would remember her after she died. A short while ago the oldest said to me proudly, ‘I was the last great grandchild to talk to Great Grandma.’ She would be pleased.” p. 206

So, no matter the perspective, ultimately our children will experience pain related to our decline and our passing. They will discover that they cannot control the process of dying. And although we cannot, nor should we, protect them from the responsibility that lies before them, maybe we can at least prepare well enough that their road will be a little smoother to travel than ours has been.

Barbara Matthews

caring for grandpa

 

 

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