Loving Mom Is Not Enough
Watching your beloved mother bear the brunt of your equally loved father’s decline, does not mean that you understand what she is experiencing. It does however require great wisdom on your part before attempting to usurp one parent’s choices regarding the care of the other. Allow me to elucidate!
A lovely woman – brilliant, elegant, accomplished, committed to her family and social causes, a bundle of energy for a female in her eighties – caught my attention when we first met many years ago. We adopted one another. She did not need me. She had four amazing, accomplished adult children and more grandchildren than either of us could list from memory. I suppose that I needed her. Having no surviving parents left a hole in my life even with a devoted husband.
Our friendship grew in leaps and bounds. When both of our husbands were in good form (pre-dementia) we all celebrated birthdays together, attended concerts, ballets, films and endless lectures of mutual interest to both couples. She was often my sounding board as Hubby went into decline. She and her husband printed each chapter of my intended book: The Dementia Diary…a Chronicle of Caring, as it arrived in their inbox. She had a file with the printed chapters arranged in the order they were released. She deeply cared about my journey caring for Hubby.
Now, I deeply care about her journey.
I must give my friend a name, and as such will call her “Mom.” Not because she is my mother, but because it is the only title which will help my readers to connect with the universality of her gut-wrenching dilemma. I realize that I must also rename her husband, so henceforth I will refer to him as “Dad.”
For a lifetime, Dad was a brilliant surgeon, published and admired around the world. Interested in politics, medicine, people, he loved deep conversations and participated fully in their life together. In recent years Mom began to see signs of his decline, first physically and then cognitively. As always, Mom was at his side, researching the best possible care to each of his co-existing conditions. We spoke, sometimes daily, about each of the challenges and crises as they occurred. When Mom finally accepted that her husband’s care was more than she could manage (she has just recently turned 90 years of age) two critical decisions were made to improve their quality of life.
First, Mom had been so impressed with Dr. S., whom I had brought into our home to care for Hubby when taking him to multiple doctors was no longer possible, that she asked me to introduce them. He has been caring for her Husband, in their home, with total dedication. Her second decision was to bring a male caregiver into her home who would be able to give her loved one the moment-to-moment attention he required. He was able to lift him, bathe him, address his specific needs and provide the in-home medical care which his many conditions required from moment to moment.
Life for Mom improved. The aide was competent, intelligent, committed to his work, and connected well with Dad. He rarely took a day off, but went out in the evening with his friends for a bite to eat and a bit of alcoholic entertainment. If one is to be fair, full-time caregiving of a person with dementia is exhausting and emotionally draining even if you are being paid for your services. Needing time off to recharge your batteries is essential. Those who do not take time for themselves, will look for a release of stress. Alcohol is legal, social and readily available. Foreign workers have many limitations on their options. They are not likely to sign into a health spa or take a quick trip to Europe for a break. Remembering that they have needs, is essential to a good relationship.
On a few occasions, the aide returned home, a bit “tipsy” to quote Mom, but with no serious repercussions. A week ago, the aide did not return home until the next morning, causing Mom tremendous concern and stress as she was unable to reach him by telephone and did not know what had occurred. A panicked Mom called her trusted daughter who arrived like an angel at 2 a.m. to be with Mom and Dad. The aide returned in the morning, ashamed of himself, having somehow blacked-out, and waking that next morning. It would be a fair analysis to say that all-hell-broke-loose. The immediate reaction of the adult children of Mom and Dad was that the aide must be replaced. It seems simple enough. Someone lets you down, and you replace them. They don’t deserve the position. The family depending on them needs to be able to do exactly that.
On the other hand, this same person who had let the family down had also served them valiantly for two full years. Rarely taking a day off, being available for every possible situation, keeping abreast of very complicated medical instructions and ever-changing ointments and medications… essentially at times keeping Dad alive. Managing Dad’s full time Oxygen supply was an art unto itself. Mom was ever present during the caregiving, but it had all become too much for her. She was too weak to physically perform many of the tasks required, even though she was mentally competent to handle it all. Caregiving is exhausting when executed by young and middle-aged adults. For someone older, it is totally draining and too demanding to manage on one’s own.
Fast-forward to the family intervention where the siblings demanded that Mom get rid of her trusted (although fallible) aide, and start with someone new. I watched this drama from afar, although Mom’s phone calls were heart-wrenching and my offers to become involved in-person, were declined. I was listening to my wonderful friend sobbing at the very thought that she would have to train a new person to administer the many required procedures for her husband, 24-hours a day. Her life had finally become orderly, and her husband’s survival depended less and less on her, and more on the aide.
The siblings had never spent a 24 hour-period with Dad consecutively, and had no idea what was involved in his care. They were using their common sense, which told them that Dad was not getting the best care. They however did not seem to have the time to live with Mom and Dad to get the full picture of that which they were judging.
Loving Mom and Dad is not sufficient. Loving them enough to spend real time to assess this problem might have been the real measure of their commitment to what might be best for both of their parents.
The siblings are now demanding that another caregiver of their choosing, be brought in to the home. This caregiver however has no experience with oxygen, and other very personal requirements which I shall not enumerate. Mom is rightly terrified that: a) this person will not be up to the task and b) that this newbie may find the work unpleasant, too difficult, or too demanding. In that case, another person would need to be hired and the process would begin once again. All much too much for Mom on both a physical and emotional level.
The one ingredient not mentioned thus far is the aide himself. No one debates his poor judgement, or that he let Mom down by drinking to excess. However, even so, the aide has been a devoted employee for a full two years. He has family he is supporting in India, and if the siblings have their way, he will be deported as an unfit caregiver. Dependent on his earnings, which go much further in India than they do here, he took a loan to build a home. This is a loan which, if deported, he will be unable to pay back. It is easy to say (and most of us would be likely to…) that he should have considered all of that before he drank too much. Yes, in a perfect world, he should have. On the other hand, he should not have been working such long hours on behalf of the family either. The pendulum of justice swings both ways.
The family has demanded that the aide take a week of paid leave. They will try their substitute candidate for the week. Essentially, all the work falls on Mom’s shoulders as she is the only one who can keep an eye on the new candidate, and know whether he is on top of her husband’s care. She has expressed to me, that if she is not absolutely happy with the substitute, that she will refuse to hire him and retain the original aide. She is a strong woman, and I am hoping that she will be able to do as she has promised.
The bottom line to all of this is judging what is best for a parent is not a matter of simply loving them and wanting what is best for them. In order to assess the needs of both the patient and the spouse, one must truly place themselves into the thick of it. Spend time and energy with the loved one and come to understand their care needs, before attempting to impose your vision of a solution on an extremely complicated set of circumstances.
As you will discover in Chapters 2 and 3 of “Loving Mom is not enough…”, one never knows what is around the corner, and rushing to judgement may not be the best choice after all!
