This is a tough, tough year for our family. Thank God we had the foresight to come back stateside a couple of years ago, to be with our aging parents and ease their transitions. Thank God we had the resources and will for me to be able to take off work, to support, physically, emotionally, logistically, our parents in a time of need, this year.
Arlee's dad passed away in May, after a bout with cancer and a few weeks on hospice. My own mom went on hospice, with a whole soup of health issues, on the same day. She passed away last October, thankfully peacefully after her own set of struggles.
With Arlee and I both as only children, we have carried all aspects of those care transitions: advising and managing hospice care, making final arrangements, and working to learn about and sort out the legal and financial details that accompany departing from this planet. It turns out, if you have never done that, that these things can be quiet complex, and very time consuming, at the same time as being very emotional.
But the biggest, hardest piece of all this turned out to be caring for Arlee's mom, diagnosed with Alzheimer's and vascular dementia. Arlee's father, before he got sick, had done an outstanding job, misguided though his approach was, at hiding the progression of his wife's disease from her, from us, from friends, neighbors and doctors. We knew mom was a bit forgetful, but only when dad took to his sickbed did we learn she was forgetful of things like, what happened five minutes ago; did I eat breakfast this morning; which way is my bedroom again?
Arlee moved in with them in their home, some fifty miles from our own home, during her dad's illness, and for some time thereafter, but we concluded that an assisted living setup was going to be necessary for her mom. Arlee had her own family to care for. Staying there in her parent's home was not tenable, nor was the thought of moving her mom in with us at our house--the stairs were an obstacle, as was her literally constant demand for attention and reassurance.
We ended up moving her to a very nice, upscale assisted living facility about twenty minutes from our home. It was really nice; upon touring it, my question was--when can I move in (the director said I would be old enough in about five years--I'm not quite sure how I feel about that). Sadly, she did not take to the place. We visited almost daily, but she would not remember our visits. She called us scores of times (literally) each day, sometimes pleasant, more often fearful or angry or agitated. Sometimes she wanted to be picked up from "this hotel." Sometimes someone had stolen her money (it was in the locked drawer we would remind her). Sometimes her husband had left her for another woman. Sometimes we had stolen her driver's license (we were holding it for her, at her request), or her car (she had not driven in years). Or someone had taken her ironing board (the facility did her laundry for her). Or all her clothes (she had closets full of them). We ached for her, and it smarted when she said cruel and hurtful things to and about us, as well, as paranoia is part of the disease. We learned about the Thirty-Six Hour Day. We tried to make happy interactions and activities, taking joy in a passing smile, a foot tapping to music, a piece placed in a jigsaw puzzle on the card table. She had happy moments, but sad, anxious, angry, and frightened hours, and days, despite our and the staff's best efforts. The worst was the hundreds of times she had to experience the grief anew, realizing her beloved husband of sixty-two years, was dead. Had been dead for months, and she had forgotten that again. "How could I forget that?" she would lament.
It became apparent by November that the staff at that facility, geared toward a different clientele, were not able to meet her needs; she moved at their impetus to an associated memory care facility. The good news was it was only five minutes from our home, and the staff there were geared especially towards her specific kind of needs. The bad news was she never took to the place, isolating herself in her room, grieving, eating less and less, and becoming weaker physically as well as cognitively. She was in and out of the hospital, and towards the end did seem happier and more at peace in many ways, but was progressively less present with us--she recognized us less, forgot our names more, began to call Arlee by her long-deceased aunt's name (Lorraine saw herself as the little sister, being cared for by her big sis). She entered hospice in late January, and left us for good on Groundhog Day. That is, she died on Groundhog Day. She had actually left us much earlier.
Bless the caregivers at these places, and the hospice workers--they were wonderful to her, and to us. It did not make any of it easy at all, for any of us.
Now, we are sorting through our own grief and loss, some guilt, some self-pity, financial and legal affairs, estates, probate, and so forth. It is complex and time consuming, and seems to involve interminable waiting on hold, endless recitation of social security numbers and birth dates, a few "catch-22s" and a lot of just plodding forward one step at a time.
We keep telling each other it will be over soon. But, it won't. In a way, the process, especially working through all the artifacts that make up a life, is a way of saying goodbye. It is a reminder about what is really important in the end: it's our relationships and the difference we make for and to one another.
Now, our Faith tells us our loved ones are in a better place, a better state. Their suffering is over. But nonetheless, it hurts. Loss hurts. Alzheimer's hurts.
But, we'll take the lessons, and we will take the fond memories that are mixed in, and the blessing it has been to be able to be present, to help Arlee's parents, and my mom, transition from this life. One day, we'll need that kind of help, too.
Onward.
