Although I am now a senior citizen, finding balance continues to be one of the most challenging aspects of being a parent. Parenting my children as they grew up often felt like walking a tightrope, and even though my children are now grown with families of their own, I frequently feel the same way. The funny thing is, as a caregiver for a parent, parent-child roles can become reversed, and you find yourself on that tightrope all over again. I think the article 4 Ways a Caregiver Can Encourage a Loved One’s Independence by Barry J. Jacobs, AARP is a good example.
In this article, Jacobs describes the problem he had finding the balance between doing too much and doing too little for his mother, saying: “If I had done nothing at all for her, then I believe she would have floundered. But I finally realized that by doing too much for her, I trampled her dignity.”
His four recommendations, with my interpretations, follow:
- Powwow and plan: Communicate with your parent early, often, and openly.
- Don’t jump in with help too quickly. It is advantageous to allow your parent to be as self-reliant as they can be. Doing too much, too soon, fosters dependency.
- Focus on what your loved one can still do. No one likes to feel marginalized—as if they no longer have relevance. Build upon your parent’s strengths.
- Frame help as empowering. Sometimes seniors regard “aids” as demeaning; they avoid using them because they think it makes them appear “old”. Discuss how using “aids” can open up more of the world to them: with a hearing aid you won’t miss so many conversations; with a transport chair you will be able to go many more places.
After reading Barry Jacobs article, I identified three examples of when it was difficult for me to find the best level of balance with my mother-in-law, for whom I was the primary caregiver.
The first was when she moved into our home after multiple episodes of falls that resulted in injury, hospitalization, and rehabilitation. For weeks I assisted with her daily morning exercises. After she had mastered them, I asked her doctor if it was safe for her to do them on her own–to which he replied, “Yes.” I suggested she do them at the kitchen island while I was buzzing about with the my household chores. But, she did not take the initiative and I let it drop.
Another task I encouraged her to do independently was to dress herself after I had set out her clothes.
Although it was a slow and difficult process, I expressed to Mom that she would lose all her skills if she didn’t keep working at them.What to Do about Mama? p. 23
Lastly was the task of setting up her medications. I had offered a few times but she always turned me down. My mother-in-law disliked the medication prescribed for congestion because it made her cough, and therefore, she did not take it regularly, as directed. Because of her advanced congestive obstructive pulmonary disease (COPD), it wasn’t long before she became ill and was hospitalized with pneumonia . After she was released from the hospital, her daughter spoke to her mom and insisted she allow me to set up the medications. That did not set well, but the family did not relent.
After the phone call was over, Mom came out, rolling her walker with a vengeance, and said, “Are you happy now?”What to Do about Mama? p 13
Whether or not I made the best decisions, I do not know. But I do know–it can can be tricky!
rosie1 reports that her mother, who has dementia, is being transitioned into a nursing home full time. The director of the facility made the “suggestion” that the family is too “high maintenance.” Because Rosie’s brother reported the remark to Rosie, she is examining her own behaviors and questioning why she may give the impression of being over-bearing. She asks how she can build a positive relationship while continuing to advocate for her mother.
Advocacy is an important part of your responsibilities as a caregiver. It’s a matter of striking the proper balance. I have had experience as a caregiver advocate, and I write about the topic in my book, “What to Do about Mama?”
When my mother-in-law was in a nursing home for rehabilitation after a pelvic fracture, she would press her call button when she had to use the bathroom. (She had not yet been cleared to go to the bathroom alone.) She would then wait and wait and wait, until she could wait no longer, and would then have to urinate or have a bowel movement in her diaper.
I spoke to the social worker about the issue and was told that my mother-in-law was so “quiet.” My point exactly. When a “quiet” person rings the bell because she has to go—you can count on the fact that she has to go. Why should a mentally competent and continent woman have to suffer the degradation of soiling themselves? I was told she would be put on a 15-minute watch, but I replied that was hardly necessary. She just needed to be helped in a timely fashion when she pressed her call button to go to the bathroom (something she did not do often).
The need to be an advocate is not necessarily a criticism of the facility where a parent is placed. It’s just that it is easy for something to slip by or for mistakes to be made, and caregivers must be on guard to prevent problems, misunderstandings, and omissions. To be an effective advocate, you need to educate yourself about different aspects of caregiving, health, care plans, and medication.
One helpful tool is to develop a personal profile to be posted in your loved one’s room that provides information about his or her personality, preferences, and interests. (It’s a nice touch to include a picture.) This gives staff more understanding of their charge as an individual and provides topics for conversation. Personal Profiles personalize the individual to staff and are also great conversation starters.
Also, when placing your loved one in any type of living facility, get to know the staff and establish a positive relationship with them. No matter how good the facility is, there will be situations that require your advocacy. The better the relationship you have established, the better the cooperation you will (hopefully) find.
As one of the caregiver’s stated in my book: “I found that my primary role, once my father was admitted to the nursing home, was to model the behavior my mother and I expected of the staff when we were not there. By that I mean how we spoke with him, how we honored his requests and anticipated his needs, how we treated him with a great measure of kindness and love, respect and dignity. It didn’t take the staff long (all three shifts) to grow to love him and treat him as well as we did every time we were there. It also helped that we recognized the hard work the nursing staff did every minute of their shifts by taking over for them with my father or by bringing them little treats from time to time. Always, every night before we left, we thanked them for their care of him.”
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.