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Caregiving for the Person who Doesn’t Want your Help

Recently, a coworker commented on how over whelming her caregiver duties had become – not that she wanted to disown those responsibilities.  Things were even easier in some regard now that she had succeeded in moving her mother out of her own home, over 3 hours away, where she had been living alone.  Her mother is now in a safer environment nearby with available services and supports.

The problem had become that her mother was becoming increasingly uncooperative and at times argumentative.  She would respond negatively to anything that resembled being overseen.  After all, she had lived on her own all these years; she certainly did not need a daughter telling her what to do.  Maybe she was resenting her daughter’s involvement, believing that she did not need her help.  In turn, her daughter started experiencing some resentment or at least disappointment.  She, after all, is only doing her best to be there for her parent and to feel at times unappreciated can only add to the frustrations of a caregiver.

If someone does not want to accept help, there are not always easy solutions for the caregiver.  In the case of a person having dementia, it is understandable that someone may be unable to judge his or her need for assistance.  Resistance in this case makes sense.  However, what do we do when we are trying to be a caregiver to someone who rejects our involvement?  What do we do when we can see that person making poor decisions that may result in unsafe consequences?

My siblings and I experienced many frustrations when acting as care providers to our mother.

She had become so adept at compensating for her eyesight loss that she refused to be labelled with the words, “legally blind.”  It would have provided her with access to more services but she did not see herself in need of those services.  That help was for someone else in her opinion.  She accepted a white can that she could fold up and hide in her purse, which apparently was preferable to actually using the cane in public.

One time we stopped at a food kiosk in the mall and ordered a drink.  My mother asked the young girl behind the counter for a straw and she answered, “Oh, they are right there,” while pointing in the direction.

My mother commented to me, “It kills me when people point to something.  I can’t see where they are pointing.”

I could hit that one out of the ballpark.  I actually took a level of pleasure in these opportunities to awaken her to some reality.  Maybe playing that game was what preserved my own sanity!  It was never cruel but I did love being right!

“And how would that young lady know you can’t see mom? Now if you were using your white can however, maybe she would have picked up on that.”

Minor victory for me in making what I thought was a valid point.  In the end, she still did not intend to use that white cane so my comments had no real influence.

She insisted on managing her own medications, even though it was a service the retirement home provided for a fee.  When we all started finding pills on the floor and down the sides of chairs, it became a concern.  It was time to intervene.  She very reluctantly allowed her pharmacy to organize her meds in a pill package, which the pharmacy delivered weekly.  It seemed like a simple solution.

However, she did not like the loss of independence in organizing her own meds.  She was still fumbling the pills and was continuously frustrated with the difficulty she had opening the blister packs.  The alternative of the facility being in charge however was so unappealing to her that she continued with this practice.

Mom was finding it difficult to do her own laundry with limited eyesight.  An easy solution was having the retirement home do the laundry for a fee.  She agreed but cancelled after one time because she could “do it herself just fine thank you.”

Now I laugh at many of the stories, which demonstrate her strong will.  I understood – maybe not at the time – that she did not want to make our lives more difficult.  She simply wanted to carry on making her own decisions and being responsible for those decisions.

She was so determined to figure thigs out and not let her disability interfere.  I admire her resourcefulness and her courage.

As a caregiver, it became a little easier to not fight the little battles.  I cringed when she would take public transit or even a taxi without any regard to her safety.  I would express my concerns to her but then I would let her know that she had the right to make her own decisions.  It became less contentious.  She started fighting us on less things and we knew what to leave be.

I wanted to keep her safe.  I was worried about falls – justifiably so.  When after I had put in all the safe guards I could, I backed off.  I took a deep breath, understanding I could not stop her from falling.  I knew and accepted that “something” would happen given her insistence on doing things her way.

Is that the best method to deal with the person who insists on not needing help or doing things their way?  There probably is not a best method but it is a way for the caregiver of not getting overwhelmed.  For me, choosing my battles and letting others go released me of some pressure and stress.

One other way I discovered, quite by accident, was having an outside person intervene.  Best if that person were someone looked upon as having some expertise.  Thankfully, there was a professional staff member at the retirement village that “walked on water” in my mother’s opinion.

Despite my protests about the risk factors of the bathroom scatter rugs, my mom insisted that she liked them and she was not getting rid of them.

It was my father’s fall in the bathroom that brought the staff member to their room to help him off the floor.  She promptly said, “This rug has to go,” and with that she lifted it up and left the room with it.

My mother barely mentioned the incident.  She simply accepted that Kathleen had made the best decision.  That was not how it would have played out had it been me taking that action.

Going forward, I learned to rely on anyone I felt my mother trusted making the best decisions on her behalf.  I never took it personally.  It was not that she did not trust her own children.  I think it simply felt easier removing emotion from the decisions.  It was easier than slipping into our roles of parent and child.

 

 

My coworker came to a similar conclusion.  “I am shifting my focus to what is possible and making the effort to let go of what I cannot control.  It is important to savor the shared love and connection, however infrequent it might be.”

Starting September 10, North Shore Elder Services will be holding a six part series called Powerful Tools for Caregivers.  This is a great opportunity to learn proven methods for communicating effectively with someone you are caring for and to learn methods to reduce stress and guilt and anger.  Visit our website at https://nselder.org/event/powerful-tools-for-caregivers-training-2/ to learn more.  You can also email Kathy Perrella at kperrella@nselder.org  or call her at 978-624-2214 to register for the program.

 

 

Author Info

Jayne Girodat

Jayne Girodat is the Communications Specialist at North Shore Elder Services. Along with ten years in the position of Caregiver Support Specialist at another ASAP, Jayne was a long-distance caregiver to parents for the same amount of time. That experience serves as motivation to better understand the issues of aging and to engage people in conversations about those issues. Jayne's background in teaching contributes to her appreciation of social media as a tool to educate readers on aging concerns. "I love asking people questions. Everyone likes to be heard. When you ask and then listen, you'll find everyone has a story and some of those stories are gems. I think it is particularly important to hear the voices of our older adults. Those are the stories I really connect to and hope to bring to North Shore Elder Services' audience."

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