AND THUS, WE GRIEVE

Mom, when the light was still in her eyes.

Ever since my mom began her long slow decline toward her final breath, I began to think what our world would be like when she is ultimately gone. I know that sounds morbid, but bear with me as I explain. I believe there is a reason for this, and I believe it’s a healthy process.  You see, I think this is a beneficial grieving activity, even if one does it unintentionally.

Mom is a ‘tough old broad.’ And yes, I can say that to her face, and I tell her that nearly every day. She overcame childhood illness; nearly two years of her life spent in children’s hospitals; at least 5 surgeries, one ultimately fusing one of her hip joints; crippling disabilities; and all this while her father was dying of tuberculosis thousands of mile away in a sanatorium.  As a ‘disabled’ adult, she gave birth to and raised a daughter alone for many years, helped to raise her youngest sister, working full time, ultimately married and birthed and raised two more children, all the while working a full time job in a sewing factory. She was very active in her church, many years as the person in charge of the kitchen there. She was also very active all her adult life in the Ladies Auxiliary to the local fire department, also holding highest offices in both regional and state organizations related to that group. She was active in the local Chamber of Commerce and was even Citizen of the Year once.  Further health issues in adulthood included scoliosis resulting from years of having one leg shorter than the other; crippling rheumatoid arthritis; psoriatic arthritis; osteoarthritis; a car accident resulting in a femur fracture in her ‘bad’ hip; a winter ice accident in which she broke her neck, shoulder, and clavicle; and these are only the things that I can readily remember! When Mom retired from the Aileen company where she’d worked most of her adult life, she went on to work, caring for her elderly mother in her home for many years, babysitting children, and then finally providing elder care in the community for quite a few people, all up until about age 84 or 85! Up until the second stroke she had, she could still work rings around me! She could often be found in her kitchen on a Friday, preparing for an Auxiliary bake sale, baking 10 or 15 pies!  So, yeah, I’d say tough old broad pretty well sums it up!

Two strokes and a heart attack  (which I still believe was precipitated by mismanaged medications) finally slowed Mom down, and after trying private care in her own home for a while, it became obvious that she was going to need some skilled nursing care. She was moved directly following one of her hospitalizations to this nursing home where she still lives today. It has been a blessing that so much family and so many friends are in close proximity and can visit often.

Most of those first three years, Mom was well cared-for at the nursing home. Even though it was hard to see her requiring care, rather than giving it, it was easy, at least, to walk out of there after a visit, knowing she was safe and that the folks who worked there were, for the most part, caring and compassionate people. Mom had always been a model resident too: always smiling, kind words for everyone, watching out for other residents.

In the last year or so, things changed rather drastically at the nursing home, often with devastating results for my mother, and I’m sure for many of the residents. We’ve had friends and relatives whose loved ones have been in the facility over those months, and have lamented with many of them at the demise of the place.

In recent months, we’ve struggled with :

·      corporate bureaucracy and utter neglect in the nursing home;

·      changes in administration, including management and directors of nursing at the nursing home which resulted, sadly in complete lack of continuity of care;

·      understaffing and overworking the staff who were there;

·      changes in the medical care providers (doctors) three times in as many months, again, negating any continuity of care for these poor patients;

·      antiquated thinking in patient care where medications are basically thrown at symptoms until patients are finally taking multiple drugs to counteract other drugs;

·      arguments and adversarial relationships with nurses and aides who would rather gork these poor patients out to keep them quiet than give them a few moments of reassurance;

·      Mom’s horrible reactions to some of these drugs they’ve had her on….5 pages of them at one time;

·      a bed-bug scare;

·      a scabies scare;

·      the only Hospice nurse I’ve ever seen who has no compassion;

·      lots of miscommunications, lost orders, lost lab results;

Again, these are just the things that I can readily remember!

In the nearly four years that she’s been in this local nursing home, and especially in these past few months, I have had many opportunities for grieving. I have heard myself say a thousand times that I believe we have these days because most of our grieving will be done by the time Mom passes, so that day’s pain will hopefully be eclipsed by relief, and even, hopefully, joy. I recently enlisted Hospice care to enhance the care that Mom receives at the home, and to help us prepare for the end of her life.  Mom’s care, even the lack of care at times, pervades my every day at this point. My days almost always include any number of the following: calls from the attending physician; calls from nurses; calls from Hospice nurses; calls from either of the social workers; calls, emails and text messages from family members and/or friends who are visiting and concerned about whatever happens to be going on at the moment; my own emailing or texting family members to update them on any number of these same things.

The last two weeks or so, Mom seems to have gotten much worse, mentally. Her short-term memory is greatly diminished. As a result, she often finds herself in what, to her, are unfamiliar surroundings, and you can imagine how frightening that must be.  It’s a blessing she still knows us all, and recognizes us immediately, but she usually gets very weepy when any of us appear for a visit. Her speech is now very labored, and processing what she wants to say gets harder for her every day. This just further adds to her fears and frustrations.  When I’m there, she usually asks me several times where she is, why she’s there, and if she’s going home. Then she often tearfully apologizes for being a nuisance, or cries and tells me she hopes she doesn’t wake up one morning, or tells me she sure hopes the Lord’s still looking out for her.

Tonight was one of my usual visits to see her. I sat at home for a while, messing with my phone, and putting off leaving to drive down there as long as I could.  Don’t judge me until you’ve been in this situation yourself.  I finally said goodbye to my wife and the dog, and headed out. As I drive the 20 or 25 minutes to the home, I begin to steel myself, and put on my light happy façade. I have to prepare myself for all her questions, and remind myself to be patient. I have to plan ahead for ways to change the subject and help her to happier thoughts if the situation warrants.

When I got to her room, Mom was sitting in her wheelchair at the foot of her bed, staring at the floor, her eyes dazed-looking and even rather lifeless. When I said hello as I entered the room, she barely even looked at me. It was kind of like she was forcing herself to respond. She always says, “Bless your heart, there you are,” as if she’s been expecting me. But even when I get close and hug and kiss her and look her straight in the eye, I don’t see her light. The one thing that makes me think her end is near is the light that’s gone out of her eyes. It’s just not there anymore, no matter what we do. 

She immediately began to get weepy, and her words, then, were even more difficult to understand. I suggested we go outside to the porch for a breath of fresh air. We could listen to the birds and watch the pretty sunset, I said. She just half-heartedly said ‘OK.’ 

It was a lovely evening, with the sun setting and a gentle comfortable breeze blowing across the porch. I pulled her wheelchair up close so I could hopefully more easily understand her as she tried to talk to me. We talked sunsets, and birds, and weather. I showed her my son’s and his fiancé’s engagement pictures on my phone. In between, she cried and asked, and I answered, those same questions over and over about where she was, why she was there, and whether she was going home. I gently reminded her, when she complained that no one had been to visit, who had actually been there in the past few days.  Then she’d cry some more, looking so frightened, and apologize that she was so ‘crazy,’ and couldn’t remember anything anymore.

So I sat there with her in the gentle evening breeze, looking into her face, holding her poor, bony, withered hand, her fingers pointing in all directions because of the ravages of arthritis. I held it gently because it was obviously painful tonight. I looked into her teary vacant eyes, and fought back my own tears, and I realized that we were both mourning. I was mourning the complete death of her independence, and thus, of her spirit. She was mourning the death of many of her brain cells, and those bits of memories that she’s sure she’ll never recover. 

And thus, we grieved.