The last few weeks have been difficult, and this is partly the reason for a gap in posts. Mom has suddenly lost much of the vision in her “good” eye and is understandably fearful of what is to come. Certainly life is more complicated now. She can’t read her bills, write her checks, dial a phone number, prepare her or Dad’s medicines–can’t even read instructions on microwave foods or recipes from her favorite collection, or enjoy the variety of birds and flowers in the backyard garden she so adores. There is some hope that her vision will improve, although my impression is that the odds are not good.

I’ve bought her a talking watch, a desk magnifier with a built-in light, and we’ll soon be getting an voice-dialer for the telephone. Audio books will have to satisfy her love of reading. But nothing will replace being able to see the faces of her husband and surviving son, or the photos of those loved ones lost to time.

So, this crime of old age, whose thievery has recently taken her first-born son, her husband’s mind, and now a selection of her few and favored small enjoyments from her days, continues on.

But she is a remarkably strong person, more than I had ever suspected.  May the same be said of me one day. I admire her so.

Years ago Dad’s doctor suggested that we contact a local hospice for support. We didn’t feel that Dad was at the end of the road, but we were told that hospice would provide care for someone with a terminal illness even if the end of life was likely distant. A hospice social worker came by and we filled out some forms and she assured us that some of their clients had been with them for 5 years. I was a little surprised to learn that, but in the end we decided to see what it would be like–we wanted some help after all. Later I thought they seemed a little eager to relax guidelines, perhaps more for economic than humanitarian reasons.

In any case, we we weren’t prepared for the onslaught that followed.  I believe we had visits from five different professionals each week. Social worker, nurse, chaplain, administrator, and another I can’t recall. Clearly we were helping keep some people employed!

Mom was overwhelmed by all the coming and going, keeping track of appointments or feeling surprised by unscheduled visits,  keeping the house clean for visitors, and more.  Despite this we kept it up, and tried to deal with what came to feel like intrusions.

All that aside, the real difficulty emerged from the nursing care. Many of our concerns about Dad’s condition were met the response “Well, you have to expect that to happen with this illness. That’s what happens near the end.”  We were told that if Dad had a medical emergency to call hospice rather than 911. I asked if Dad was choking, was it OK to call 911–and was told that would be alright.

My sense was that the hospice workers expected him to die soon, that any symptom he displayed could be chalked up to the main diagnosis of Alzheimer’s and, as a result, meticulous attention to various symptoms was  not really required.

One day, when the nurse had finished her cursory examination of  Dad, I noticed that one of his ankles was markedly more swollen than the other.  She didn’t seem to think much about it, but I was concerned enough to get  him to the doctor the next day, and he confirmed the diagnosis of a blood clot via  MRI. Dad was immediately admitted to the hospital and had a filter placed in the vein in his groin to help reduce the chances of a blood clot getting to his heart or lungs. Whew!  Sometimes it is important to pipe up when it looks like something is going wrong, even if you are not an expert.

Now, don’t get me wrong, I think hospices are great and they are a tremendous help to many, many people.  And the hospice workers have a very tough job, and likely become somewhat inured to suffering and death in the course of their work. My point is that under such circumstances, in the long shadow of death, one’s broader vision may be obscured by a focus on the terminal nature of the diagnosis to the extent that acute, potentially deadly, but treatable,  illnesses become less visible.  So, health care workers and family members should always be on guard against this natural tendency.

Overall our impression was that Dad had entered the hospice program prematurely and that most of the workers saw him as having a relatively short life ahead, as I expect is the case for most of their patients. I think the subtle emotional effect on us was a bit disheartening. We felt more glum and wondered whether we were just not on the right wavelength if we felt otherwise. In the end we dropped hospice care for Dad, but affirmed that in the future, hopefully distant future, we could well call on them again.

We reclaimed our more peaceful home life–uninterrupted by a stampede of  well-meaning caregivers– felt our spirits lift, and resolved to keep a keen eye open to the unexpected and not to be blinded by the expected.

All this about six years ago now.

Years ago, perhaps as many as 15, during one of my visits home, my father took me aside and spoke to me in a quiet and earnest voice. This was a period of considerable turmoil in his relationship with my mentally disturbed brother, who, with his wife, had been forced by lack of money to move into our parents’ house. Dad had been very focused on his own health and was trying hard to keep it by taking vitamin and nutritional supplements, including ginko and others. Arthritis was a painful problem, so much that he walked with awkward lurch to one side. Dad never seemed completely comfortable with himself. He had had a poor relationship with is own father and carried deep scars from that. He once confided to me that he was deformed, and indeed, his hands were slightly oddly-shaped with little fingers that were only 3/4 the size that would have seemed to fit the rest of his hand. But I had never really noticed and was surprised that he seemed to be a bit ashamed of this barely noticeable physical feature. The root of his perception of deformity was, I suspect, more likely to be found in the development of  his personality than in his appearance.

On this occasion, he explained that he wanted to live as long as necessary to take care of Mom until her death, but no longer. After that, he said, he would probably commit suicide. He most definitely did not want to be a burden anyone. He assured me that he would not use one of his many firearms in this act. He was a bit of a gun fanatic, a firm supporter of the Second Amendment and a lifetime member of the NRA. And he didn’t want his suicide connected to something he dearly loved.

Of course, I was a bit shocked by this revelation, but didn’t take it too seriously since Mom was in excellent health and I figured that the circumstances he was waiting for would not arise for many years. I felt sad that he did not think he would be needed or wanted after Mom died, but I did not explore the issue further with him. Such was his disconnection from his sons.

Several year later, when Dad began to have trouble with is memory, he gave me the key to his safe and I did an inventory for myself. It was a large safe, but nearly empty–a fire-proof box with some legal documents, a small toolbox and rack of drawers with small screws and nails, an old carved wooden box with some family memorabilia including a German cross from the war and some type of US military award pin. Dad did not serve in WWII, but I imagined these might have come to him from one of his uncles.

Also, I found a small piece of aluminum  foil, tightly folded  to the size of a large stamp. A small bulge indicated something inside.  I opened the tiny package and to my surprise discovered a small capsule without markings, just one single capsule. Immediately our conversation from years ago came to my mind. Perhaps this small capsule had been carefully obtained and hidden around that time. Dad was a bit of a chemist–made his living at it, in fact, so he knew how to formulate an effective mix of deadly compounds.

I wrapped the capsule in its foil pocket and replaced it in the carved box. Whatever it was or its intended use would never be known for certain. Dad was not capable of getting into the safe any longer and could never lay his hands on the capsule, even if he did somehow recall his intention. Somewhere along the way in his descent into permanent forgetfulness, the moment when he might have reached for it had passed him forever.

And I am grateful for this. We have shared more love in the last few years than we managed in all our prior years. Though I am deeply saddened by his current condition and all the suffering that has come with it, I believe that, in the end, we both have had better lives because the quality of our relationship over the last few years has redeemed so many of our earlier shortcomings.