Caregiving model: living with an elderly parent in your home

To ending
From Onset

The Caring Generation, with host Pamela D. Wilson: Living With Elderly Parents Radio Show

https://pameladwilson.com/living-with-elderly-parents-the-caring-generation/

This is a great program for anyone thinking about having an elderly parent move into their home. Pamela Wilson provides information to discuss and consider prior to making a commitment of this magnitude. 

In-home caregiving is the model my husband and I undertook to provide care for his mother. Our arrangement had one major difference:  I assumed the role of primary caregiver as a daughter-in-law.  Our experience is detailed in What to Do about Mama?  

Although our caregiving situation had a number of positives, there was also more difficulties than we ever foresaw. I am highlighting those points because they have the most significant application to the disintegration of our caregiving arrangement.

  • Although we discussed the arrangement extensively with all family members beforehand, we did not establish firm parameters of shared responsibility in a formal, written, and a notarized agreement.
  • We made sacrifices above and beyond what the others were willing to do, which eventually led to resentment.
  • We did not realize how much sharing our home would change our spousal relationship.
  • Unanticipated details surrounding the situation can create unforeseen complications.
  • We underestimated escalating needs, which increased the scope of responsibilities.  Neither did we fully anticipate the number of years involved with providing care.
  • We did not recognize the differences in our family cultures, which led to serious misunderstandings. 
  • Over time, caregiving can become a trap that can undermine the adult child-parent relationship, as well as relationships with other family members.
  • Caregiving can be very long-term. We did not prepare a contingency plan for if and when the arrangement became unmanageable. 
Remember:  Do not enter a live-in caregiving arrangement lightly. 


Caregiving contingencies

See the DailyCaring article:
Coronavirus and Caregiver Mental Health: 8 Coping Tips 
http://www.feedspot.com/?dadi=1#feed/fof_fo_1345863__f_4798203/article/6029030843?dd=4311523042954340

  1. Maintain a regular daily routine and healthy lifestyle
  2. Improve sleep
  3. Focus on what you can control and limit “what if” thinking
  4. Give yourself a break
  5. Plan for your older adult’s care in case you get sick
  6. Take mini breaks throughout the day
  7. Remember, you are not alone
  8. Use humor to relieve tension

Each tip contains suggestions for how to accomplish the recommendations with additional links provided.    

I relate to #5 in particular.  Having a contingency plan for caregiving was something we overlooked when I took on the responsibility of being a fulltime caregiver for my mother-in-law.  Still in my 50’s at the onset, I was a healthy and energetic.  I did not foresee how the responsibility and the stress of escalating needs would take such a toll on my physical wellbeing. 

Undertaking a caregiving role is sometimes a very gradual process, but in the case of a crisis situation, it can be very sudden. In either case, caregiving responsibilities usually 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. Caregivers sometimes begin by providing support in such areas as yard work or home repairs, followed by assistance with IADLs: telephone communication, housekeeping, laundry, food preparation, transportation, and managing medications and finances. Perhaps a greater sense of dependence involves the need for support with ADLs: bathing, dressing, grooming, ambulating, transferring, toileting, and feeding. The list of caregiving tasks grows and grows; the specifics are customized to each individual situation. When I was no longer able to care for my mother-in-law because of my knee replacement surgery, I wrote a job description for our nephew, which, in addition to the above-listed responsibilities, included the following tasks:
*Maintain an updated medical history to take to all doctor appointments
*Maintain hearing aids; help to put them in
*Manage oxygen
*Perform wound care
*Order medications, medical supplies, and equipment
*Order incontinence products
*Take to hair and nail appointments
*Provide opportunity for recreational activity
*Schedule and direct help—aides and hospice personnel

What to Do about Mama? p. 162

It is important not to make promises and commitments to the point that there is no way out. 


Hospice Experiences

In response to Joy Johnson’s article

Challenges of dying at home, revisited — The Memories Project

When I worked as an Assessor at the Area Agency on Aging, I heard only rave reviews about Hospice Services.  Our own family experience, which I write about in my book What to Do about Mama? was also positive. 

A hospice group supplied my mother-in-law with a transport chair so I could get her out of the house to go to the senior center, and with travel oxygen so she could go to the beach with her daughter. In other words, although hospice eases the process of dying, it also facilitates and encourages the process of living.

What to Do about Mama? p 170

Families often overlook or do not consider hospice when they feel they don’t need it yet. “There is a tenacious and lasting perception that hospice comes in only when people are on their deathbeds. Of course, hospice does take care of dying patients, but that is certainly not all it does. Hospice also helps caregivers by providing home-health aides. It gives emotional and spiritual support to the family as well as to the patient. Hospice loves to come in and help people enjoy everything they can do in life.

What to Do about Mama? p 170

However, all circumstances are not the same.  My daughter-in-law’s mother passed away surrounded by family.  Her husband, sister, and children all pulled together and shared the responsibility for her care, augmenting the services hospice provided.  Her wishes were honored and she spend as much time with family as she could.  I was told that when she died, there was a smile on her face.  I suppose you could say that her death was about as good as a death can be. But this family communicated openly and confronted death according to their mother’s wishes.

 My son-in-law’s (SIL) mother also had hospice services at home.  But there had been more denial and less opportunity to let her wishes be known. 
(See previous blog: The We Don’t Need It Yet Phenomenon)

Hospice had brought in a bed so SIL’s Mom could sleep in a room downstairs.  During the night she got up to go to the bathroom and fell.  She had no hands-on-help because her husband was sleeping in the bedroom upstairs.  The next morning the hospice nurse sent her patient to the local hospice facility—to be more safe, I presume. This is not the place she wanted to be, and she passed away soon afterward.    

Talk about it beforehand. You won’t regret that you did.


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.

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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


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…