Loving Mom Is Not Enough
(Part II)
After last week’s chapter, titled “Loving Mom Is Not Enough, Part I,” it feels as though I have opened the gates of hell to unexpected family wrath. Not my family of course, but the family of “Mom,” my good friend, whose dilemma as to whether or not to keep the excellent caregiver who was taking care of her husband, after a serious incident of his poor judgement, was enough to inflame her entire family. It became apparent that I was advising Mom and listening to her concerns. I have done that for years. Now that her husband has dementia, I have become the one confidant that she can come to, who actually understands what she is experiencing. It was never my intention to tell her what to do. No one wants that responsibility for another’s family.
Still, phone calls from multiple family members came with accusations that somehow I was causing harm while standing by Mom’s side. They needed me to show her the error of her ways. I have a strong back and was willing to try to explain some of what the family was missing from their analysis. Ultimately, Mom made her own decision. She gave the substitute caregiver provided by her adult-children, a test run; a ten-day period to see how a transition to this individual as a full-time care-giver might be. She discovered that subtle benefits of the two-year relationship she had developed with aide #1 were missing. Aide #2 was willing to do whatever was asked of him, but was unable to think out of the box. Mom had become accustomed to someone who would remind her that it was time to order new medicines for “Dad” when they were running low. He was able to anticipate Dad’s needs and prepare ahead of time to make for smooth transitions throughout the day. He was able to get Dad to eat food when he was refusing, take pills when they were denied access, to play games with Dad which required a large English vocabulary, to cajole and make life better for Dad, and by extension for Mom. When Dad began making comments that he wanted “the other guy” to come back, there was no doubt in Mom’s mind what she must conclude.
When “Daughter” asked Mom to make a decision at the end of the trial period, Mom tried to explain why she would keep aide #1 in spite of his gross error in behavior, for which he was now incredibly apologetic. She tried to explain that at the age of 90, she could not take the additional stress of training a new person, watching their every move and checking on their accuracy. With aide #1 that was no longer necessary. Her daughter’s response was indicative of the entire family disconnect. “This is NOT about you Mom! This is about Dad!” she responded. The family, after hours and hours of discussions and tears, still did not understand that the full-time caregiver is in truth, hired to make life more bearable for both the spouse and the patient. It is precisely because the spouse can no longer manage the stress (both physical and emotional) of full-time caregiving, that an aide is required. Daughter was furious that Mom made a decision which went against the family’s desires.
Mom was and is, compos mentis, very clear thinking, and very bright. At the end of this experiment, she made the decision which would allow her to return to a reasonable quality of her own life, as Dad was declining further and further into his dementia and age-related issues. She has committed to keeping her husband at home, and with the best possible care that can be provided. Clear new red-lines were established for aide #1’s responsibilities and behavior. There were changes to be made and adhered to if he was to return.
This entire process was exhausting for Mom. There were times she had panic attacks, depression and stresses that I feared might bring on a stroke. She survived it all, but never should have suffered so greatly, at this point in her life. I do suspect that her family never read any of my Dementia Diary chapters, even though Mom was an avid fan and had learned much from them along the way.
The very people I had hoped would benefit from my own experiences, did not. These chapters are intended for the families of loved ones with Dementia. My father of blessed memory used to have a favorite saying; “You can lead a horse to water, but you cannot make it drink.”
Only those committed to understanding deeply what is happening behind the closed-doors in the home of a patient with dementia, will ever be able to navigate the required decisions with insight. I must commend you, my reader, for possibly being among the millions of family members suffering through this experience, who actually wish to face the complexities of this life experience. It is of course my deepest hope, that these chapters will ease your own personal journey along the way.
Believe it or not, there is one more chapter to share on this topic. Next week… the conclusion – Loving Mom Is Not Enough, Part III!
