A Guide to Caring for Aging Family Members

Posts tagged ‘decisions’

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.

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Burdening Our Kids

An AgingCare.com (http://www.agingcare.com) question:  “I cared for my parents until they passed. What do I do to make sure I do NOT put my kids through that?” Asked by Sunflowerpower

What is wrong with dying? I am not so sure that extending life to the point of wringing every last drop of breath out of life is the right thing to do.

 That is, unless one has unlimited financial resources to buy professional care 24/7. We should not have to put a price on elder care but for most people, the child or children end up bearing the work.

Are we sure we want to continue extending life when life is a body and no memory? Or a good mind but nothing but pain for the body?

I read these stories about all the caregivers doing their best to care for their parents at the cost of their own lives and it is so sad. Been there, done that.

I am NOT talking about assisted suicide. I am saying if an older person has no realistic future of living life on their own, what is wrong with stopping life-extending medications?

Not being a burden on our children is a major concern of the baby boomer generation, as I expressed on the first page of “What to Do about Mama?”

“I am a baby boomer—part of the ‘sandwich generation’ that is taking care of our elderly parents while still providing support for our children.  As I write this, I am feeling that the time has come.  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!”  (p.1)

And again on the last page:

“In the light of my caregiving experience, and with the hope that my children will not have to face avoidable stress, I pledge that: 1) I will not leave my children the burden of my messes; 2) If my children become my caregivers I will not to be stubborn and dead set in my ways; 3) I will relinquish control (at least some of it) to them; and 4) When, in my old age, if I do the things I’ve said I won’t—they may, as I’ve told them, ‘Just show me the book!'” (p. 222)

The issue of extending life is also addressed in the book.

“I acknowledge that broaching the topic of death and dying with parents and family members is very difficult and even painful. We may have living wills that specify that ‘no extraordinary measures’ be taken, but how do we and our family members interpret that directive in the midst of a highly emotional crisis situation? The issue is confusing and complicated to say the least—one that presents huge challenges for the elderly and their caretakers.

I would respectfully suggest, however, that it would behoove us all to have this difficult discussion well before the time of need arises so that decisions for treatment are based on our loved one’s expressed wishes.”  p. 160

The issue of sustaining life with medications presented a major decision making point in the caregiving situation that motivated me to write “What to Do about Mama?”

My mother-in-law questioned the Hospice nurse about discontinuing her arrhythmia drug citing contra-indications with circulation.  She was looking for a “fixable reason” for her poor circulation, which was causing increasingly numerous ulcers to form on her legs and feet.  We knew, of course, that advanced COPD (chronic obstructive pulmonary disease) caused by a fifty-year smoking habit, is not fixable, and agreed that it was time to have a family discussion about Mom’s medications. My husband consulted his siblings to assess their opinions about Mom discontinuing her heart drugs. The children were all in agreement that their mother had had a good life, and that they would rather see her go quickly and gently like their father than watch her slowly disintegrate. He then had a very difficult discussion with his mother, and she agreed that it was in her best interest to stop her heart drugs. See full account on pp. 24-26.

Barbara Matthews

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