Caregiving Decisions: Acting Out of Love, Not Fear
Recently my friend Mary helped her elderly mother move from a neighboring state to an independent living community located near where Mary and her husband live. In an e-mail exchange about the challenges of caregiving, Mary noted, “I worried very much about taking on this responsibility, but I have to say I am glad we did, for many reasons. When we were talking about moving her here, and I was expressing my anxiety about it, my sister-in-law, who nursed her mom to the end with cancer, said to me, ‘Just remember to act out of love, not fear.’ For me, that was a really important thing to hear.”
The sister-in-law’s statement made me stop and think. How much of what we do in caregiving involves acting out of fear, instead of as an expression of love? In analyzing my own family’s situation, I can come up with several examples of how fear at times has influenced our decisions.
Fear of Physical Decline – In my family’s situation, we had difficulty getting to a loving state in order to even address Mom’s physical decline. For instance, when we would bring up an issue related to Mom’s memory loss, Mom would get defensive (“Everyone at my age has memory problems!”) while Dad would get critical in his comments, verbally picking at Mom about what she was forgetting. This turned into a vicious cycle fed by fear on the part of both of my parents that something was wrong with Mom’s mind. The situation got so bad that Mom refused for a long time to go to a neurologist to find out why her memory was fading.
We finally were able to get her to agree to a screening during an emotional conversation in a hotel room at 4:30 a.m. in Fall 2004. The reason why we succeeded: I approached the conversation with Mom out of love. I kept reminding her that Dad and I loved her, that I knew that she too was worried about her mental decline, and that we didn’t know what was causing her memory loss. Affirming that I knew she was afraid, I told her that it was her call as to whether she completed this doctor’s visit. I also noted that even if we went to the appointment, if Mom didn’t like the doctor, she didn’t have to complete additional tests.
Mom agreed to go to the doctor that day, and eventually agreed to schedule a battery of tests the following month. I encouraged my brother to come down in order to be present for these tests, figuring that the two of us could keep Mom feeling loved as she faced her ultimate fear of dementia. After those tests were completed, the diagnosis was mild cognitive impairment, which relieved Mom’s mind greatly. And it was a good lesson for me to learn about how grounding a difficulty conversation in a foundation of love could help Mom deal with the fear and challenges of what might be ahead.
Fear of the Nursing Home – The major fear that I personally had to deal with was placing Mom in a nursing home. That was something Mom never wanted to happen, but it became inevitable as her lungs and her mind failed her at the same time. In fact, her health deterioriated at an alarming rate because she refused to allow anyone to help her with her breathing medications, which she promptly forgot to give herself at the recommended times or in the recommended dosages. This turned into a vicious cycle as her lungs couldn’t deliver oxygen to her brain, thus dimming her already diminishing memory. Things got so bad that Mom would start calling 911 to help her when she experienced breathing distress, only to head via ambulance to the emergency room, arrive there, and forget why she was there. These visits to the emergency room were happening at least once or twice a week by August 2005.
In September 2005, we had the tumultous month during which Mom finally was recommended for a geriatric psychiatric evaluation, which confirmed the diagnosis of Alzheimer’s. It became evident that Mom couldn’t live on her own, and no family member’s situation was conducive to having Mom live with them. Therefore, we asked for Mom to be considered for placement in an assisted living facility, but the evaluation by the facility’s administrator came back negative due to Mom’s need for skilled nursing care as well as the strong possibility that she would wander away from the facility.
So the dreaded placement in a nursing home became a reality. At first, I had to deal with Mom’s temper, which struck fear into my heart and placed that emotion squarely in the middle of my interactions with her. I got very defensive and felt the extreme mental stress that this placement brought not only to Mom, but also to me.
But, the more I thought about it, I began to realize that as much as Mom didn’t like being in the nursing home, her placement there was the right thing to do because of our love for her. Her medications were correctly administered, which meant that her health stabilized. I now had a chance to be with her regularly, trying to help her through this transition. And Dad had a chance to recover emotionally from the verbal pounding administered by Mom during the years prior to the diagnosis.
Using an approach that was focused on love, I also figured out how to tell Mom why she was living in a nursing home. “Why am I here?” Mom demanded as we sat down for one of our visits. “Well, Mom, that’s a good and fair question,” I said. “The doctors recommended that you come here for two reasons – your breathing problems and your memory.” Mom quickly snapped, “There’s nothing wrong with my memory!” I reached over to grasp Mom’s hand, leaned over, and asked, “Mom, do you realize that I come everyday to visit you?” Mom looked startled, “You do?” Replying yes, I told Mom what time I generally came, where we sat, and some of the topics we often talked about. I asked an aide standing near by to vouch for what I was saying; she quickly nodded. Quietly, Mom said, “Well, I guess my memory is worse than I thought it was.”
Believe me, I was scared to death about that conversation (which I had to go through for three consecutive days due to Mom’s memory loss), but by coming at it from a basis love, I was able to reason with Mom, to reinforce my close reationship with her, and to ease her fears so that she knew she wouldn’t be left alone during the difficult time ahead as her health declined.
Fear of What Others Will Think – I believe the outside world doesn’t understand what dementia causes a loved one to do. Thus, I’ve been in situations where Mom has said some pretty rude things to strangers or acted in uncharacteristic ways in public. Early on, I worried about what others would think about Mom’s actions (and what they would think about me), but I’ve finally accepted the fact that I can’t control Mom. And if other people don’t wish to go the extra mile to understand what is going on with Mom (especially as it relates to Alzheimer’s disease), then I am not going to worry about what these people are thinking about her or me.
Secondly, I must admit that at times I’ve feared what family members and friends would think about Mom’s placement in a nursing home. But as I mentioned earlier, I have come to terms with the reality that Mom is in the right place. These relatives and friends don’t see Mom on a daily basis, so they don’t have a good foundation on which to judge Mom’s situation. Often when these family members and friends have visited, Mom has had a “good” day, which made the visitors think that Mom shouldn’t be in the care facility. However, these visitors didn’t see Mom the next day when she was disoriented and emotionally lashing out. Having experienced Mom’s reactions on these days just reinforces the need for Mom to remain in the nursing home where she is kept safe and healthy.
Fear of Mom’s Death – Some relatives also have been stunned to see Mom’s weakened state. More often then not, they come for one visit to the nursing home and don’t return for follow-up visits. I’ve come to believe that these relatives are used to seeing Mom as the strong, vital person that she was during most of her life, and they are facing their own fear of end-of-life issues by watching her decline.
My family also is dealing with these fears. I find that my father’s visits are limited periodically as to the amount of time he spends with Mom; it has to be hard to watch a loved one who you’ve been married to for over 50 years succumb to Alzheimer’s disease and Chronic Obstructive Pulmonary Disease. My brother also is having trouble dealing with the pain of Mom’s future prognosis when he already is dealing with the emotional scars from his own wife’s death in 2005. And I’m trying to figure out how to deal with the fear of living in a world without Mom, who has always been my best friend.
One of the best ways to sum up the challenges of facing our fears as caregivers was stated by Lauren Kessler, author of Dancing With Rose, who was interviewed for the June 2007 issue of More magazine about her time spent working in an Alzheimer’s care facility: “When I was younger, I thought that if you were afraid, then you weren’t brave. That’s completely changed. Everybody is afraid, and the brave people are the ones who face it.”
All of the fears experienced by caregivers are real. Knowing this, the best way to care for a loved one is to acknowledge the fear and then make the decision related to a love one’s needs from a basis of love. I believe that by taking this approach, Mom is assured of our trying to make decisions in her best interest, and we can come through this difficult situation with a clear conscience that we’ve done the best for Mom.
Published On: June 11, 2007