A Guide to Caring for Aging Family Members

Posts tagged ‘autonomy’

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.

Aside

Too Many Cooks in the Kitchen

An AgingCare.com question was recently asked that highlights the conflict between safety and autonomy for seniors.  http://www.agingcare.com/

A Question was asked by KAT2014:   Cooks

My grandparents will not accept help and there are too many cooks in the kitchen. Should everyone back off?

My grandparents can barely walk with walkers, they’re in constant pain, they have a ton of family members breathing down their necks telling them what they should do but at least we got my grandmother on anti anxiety meds (that only helps so much). Everyone is wearing themselves out helping my grandparents but it just angers them. We can’t even convince them to let someone meet with them for an hour just to discuss the idea of getting some profession in home care. Before I was supportive of everyone helping but I’ve changed my attitude. Now I feel my grandparents (and everyone for that matter) are so stressed and upset that everyone needs to just back off. Will one of them end up in the ER or worse–yes. Will their lives be easier if they had prof. help–yes. Will they accept help–NO a hundred times over. I feel they need love in the form of good conversation and distraction from the topics of health and death. What is the right thing to do? Force them to get help when they’re already furious or back off? The entire, huge extended family is miserable at this point. How can we help my grandparents move on gracefully? (they don’t qualify for hospice just yet but they did come by one day)

 

Expert Carol Bradley Bursack replies:

I agree that everyone should back off. People like your grandparents often feel bullied by all of this pushing. They may eventually agree to some help if they are given what you mentioned – loving attention and distraction. If they feel free to make their own decisions they may become more reasonable.

I also agree that if they aren’t too resistant to wearing personal alarms to call for help that would be a step forward. Because of all the pushing in the past, they may even refuse this for awhile, but in the future you could gently mention that this form of help is non-intrusive and possible so that you’ll set it up if they decide they want it. To me the magic words are “they decide.”

I know it’s hard to watch this and not try to fix it, but human dignity and the ability to decide for oneself is important. Good luck to you all,

Carol

WTDAM (that’s me!) comment:  On p. 54 of my book, “What to Do about Mama?” I state:

“A productive family meeting can build a strong foundation for family caregiving. Do you share common values? Talk about what is most important to all of you—autonomy or safety. Establish common goals. Divide responsibility based on the strengths and abilities you bring to the family. It is important to be specific. Develop a contract that delineates the commitments family members have made, and solidify those commitments with signatures that verify that everyone understands and agrees to the plan. Be sure to date the contract in case changes are needed later on.”

In your situation you have an extensive family, so finding consensus will be a challenge.  I agree with all responders that the family needs to back off for now (this would be part of your family plan) and allow your grandparents to regain their sense of autonomy.  Once they feel a greater sense of control, they MIGHT be ready acknowledge their need for more help and make the choice to accept it (offered up in small steps).  If they don’t, then they will suffer the consequences, and none of you should feel guilty, say “I told you so,” or allow those consequences to become YOUR consequences.

If you feel the situation is very dangerous, you can always call your local Area Agency on Aging with a report of need.  The report can be made anonymously.

Terryjack1’s comment:

Definitely back off, no one likes to lose their independence and it’s difficult for some when they begin to lose skills such as their ambulation skills. It’s good they can use a walker but it sounds like they could use some physical therapy to strengthen their ambulation skills. Many don’t like strangers coming into the home, and it may be that your grandparents are afraid that if someone comes in they will be ‘made’ to go into a nursing home. Assure your grandparents that is not the case, there are many programs out there to keep people in their homes such as a waiver or senior care program. Call your local Area Agency on Aging to see what’s available in your area or to speak to someone for caregiver support. You can arrange someone to come out to visit your grandparents to explain about home and community based programs that are designed to keep people at home and they can reassure your grandparents that no one wants to see them in a nursing home. They have a right to make choices, but the choices need to there so they can choose. I’m a caregiver, I’m over 50 and I have medical issues that have brought on a decline in my functioning so I know how difficult it can be to accept assistance. You grandparents have always ‘done’ for themselves and now that they can’t it’s difficult for them to admit that and accept help. Continue to reassure them that you want them to stay in their home and there is help available to those who need it to keep them in their home. Most important of all is to let them know you love them and want them to be around for a long time.

Lostfamily’s comment:

The same type of issues were coming up with my dad. We knew he could not live alone, the doctor even said that he should not live alone, but he wanted to stay in his home, and the family was getting so stressed out and worn down, making sure he had meals, personal hygiene, outings or some social life and keeping his home clean, getting him to doctors’ appointments, etc. it took all four of us full time just to get it all done. After years, he could still not see all of the work it took, so the 4 of us decided to back off. We made sure that he had food, made the house as safe as possible, life alert, cell phone, he could not drive a car, so we sold the car, we did not want him getting behind the wheel, but wanted him to keep his social contact, like meeting the guys at McDonald’s for coffee, so we got him a electric scooter, and worried in silence that he did not get hurt. We visited him every day, but did not push him. Then something happened! He said that he wanted to see us all; he told us that he could not do it by himself. He told us he was willing to visit an Assisted Living Facility; he decided which facility he preferred. Your grandparents will never see how much is being done for them, unless they experience it for themselves. They still see that they are able of doing it on their own. They have to see for themselves that they cannot do it on their own. If they have a fall, or they miss a meal, be there to support them; when they are ready, they will be ready on their terms. Your biggest problem is your family. Unless, the whole family can agree to step back, the grandparents cannot ever figure it out. Why should they, as long as they are the center of attention, and being waited on for every need, I wouldn’t be in a hurry to change either.

WTDAM (me again) comment:

Great example, “lostfamily” of using the approach I outlined above. And as I said on p. 50 of “What to Do about Mama?”: Of primary importance is the individual who needs the assistance and care. If that person’s values and wishes are not respected and taken into consideration, you are bound to run into resistance and conflict. Who doesn’t want to remain in the driver’s seat of life? It is imperative to respect your loved one’s independence and dignity—it is, after all, that person’s right to make choices and decisions.

Barbara Matthews

 

Caregiver Stress Webinar

Click on http://youtu.be/GfKS98UTjB4 to view a UCLA Health Webinar on “Surviving Caregiver Stress” by Linda Ercoli, PhD.

Young Man with His Hand on His Forehead

ALL STRESSED OUT

Every caregiver who watches the webinar will find something that resonates with their own unique caregiving situation.

Some of the points that resonate with me are:

  1. Caregiving stress is impacted by the length and the load of the caregiving experience.
    I was caregiver of my mother-in-law for seven years, four in my home. The last two years were characterized by escalating physical decline in conjunction with increased caregiving needs. What had been an overall positive caregiving experience became unmanageable.
  2. Caregiver stress is increased when there are fewer uplifts (positive perceptions).
    I had assumed my caregiving role as a means to “give back” and show my appreciation.  When I sensed my mother-in-law’s air of resentment, the positive perceptions of the arrangement eroded.
  3. Caregiver stress is impacted by role changes.
    My mother-in-law was fiercely independent. She could not accept what she perceived as a “relinquishment” of control, such as when I began to set up her medications.
  4. Caregiver stress is greater when there are perceived problems relating to the family, as well as the care receiver.
    We called a family meeting to discuss our need for increased support relative to increasing needs.  My husband’s siblings were defensive.  As relationships diminished, stress increased.  As noted above, when my mother-in-law felt her “autonomy” decreased, her “animosity” increased.
  5. Coping strategies include “doing for self” through exercise, nutrition, activities, etc.
    When I took time for myself or looked for ways to meet increasing needs, I was accused of being selfish. My mother-in-law stated, “Everything is for your convenience.”
  6. Coping strategies include availing yourself of opportunities for respite.
    When I utilized hospice respite, I was again labeled as “selfish.”
  7. Coping strategies include finding support.
    I joined to a support group; it was instrumental to maintaining my sanity and making difficult choices.
  8. Coping strategies include setting limits.
    When my sister-in-law said she could not have Mom for Christmas because there would be three dogs and a grandchild there, my husband told her we would have one dog and seven grandchildren—our “request” was not negotiable.
  9. Caregivers should be aware of escalating caregiver burden:  exhaustion, medical problems, unrealistic expectations, poor relationships, the need to control an uncontrollable situation.
    Providing my mother-in-law with ambulatory support became unsafe since I was now in need of bilateral knee replacements.
  10. Caregivers should plan and prepare to transition to other care models when the burden becomes too great.
    Although she did not want to leave our home, my mother-in-law moved to her daughter’s home when I could no longer care for her safely.

Barbara Matthews

Autonomy

As Laura said in her blog, “The Selfish Caregiver:”

“I’ve often pondered if I regret not telling her to shove it and just moving back and forcing her to deal with it. But as much as I believe in caring for your loved ones when they need you, I also believe that a person doesn’t give up their autonomy just because they get sick. And I’m pretty sure that me, moving back into her house and giving up the stuff she knew I loved, wouldn’t have been selfless–it would have been me, assuaging my own guilt and pissing her off by treating this incredibly stubborn, independent woman like a child. So I respected her wishes, even though it killed me.”

Autonomy is a really important value to consider in making caregiving decisions. It was a big factor in my own caregiving experience—one that I revisit several times in “What to Do about Mama?”

• Talk about what is most important to all of you—autonomy or safety. (WTDAM p.54)
• We would like to emphasize again, however, how important it is to respect care receivers’ autonomy by seeking their opinions and preferences throughout the care-planning process. Promoting the independence of care receivers is key to helping them maintain their dignity. (WTDAM p.189)
• Still, we did a lot of things wrong: We did not include Mom in our initial discussions. Ultimately the decision was hers, but she was strongly pressured. We did not discuss our values or explore other options to moving north. What took precedence? Autonomy or safety? (WTDAM p.32)
• I had the expectation that when you moved here that our relationship, which I always considered to be good, would become even closer and warmer. I felt that living in the safety of our home would allow you to be more independent and active for a longer period of time. I think our first two years were really quite good, but there was always an undercurrent that somehow you perceived me as a threat to your autonomy. (WTDAM p.27)
• Caregiver Experience: Respect for care receiver autonomy. See Nathan’s Story (WTDAM p.190)

And by the way, I really enjoy Laura’s blog. She is a young woman wise beyond her years, having lived through the loss of both of her parents (as well as a good friend) in a short period of time. Also, she doesn’t mince words.

I think that young adults often feel that caregiving doesn’t apply to them. Two of my three children have reacted to my book noting that has a negative tone, but that it is probably helpful “those who need it.” My response? As I stated in my March 9th blog “Long-Distance Caregiving:”

“As much as I support being ‘positive,’ the truth is, who would ever choose to lose their health and abilities on the end-of-life path that we will all travel? And what caregiver would choose this debilitating journey for their loved one? It is never easy.”

Unfortunately, that lesson is now hitting home. My daughter-in-law’s mother had a recent and sudden diagnosis of stage four colon and liver cancer with a very poor prognosis. Caregiving has now become more relevant.

Barbara Matthews

The Selfish Caregiver

So, I named this blog “The Selfish Caregiver.” Now, I am finally going to explain why.

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