For the last 3 years, I have known my dad was dying. He was diagnosed with Alzheimer’s, which we all know is incurable and ultimately terminal. But I had hopes that he would be around for a long time – there are stories of people living with Alzheimer’s for 10+ years. The thing is, he probably had it for much longer and we never knew. Or maybe we knew, but didn’t want to face it.
For a long time leading up to the diagnosis, we knew something was wrong. He would repeat questions or forget appointments or get into fender benders that he should have been able to avoid. He would get angry for no apparent reason – he was basically a kind, gentle man, so that was very out of character for him. At first, I chalked it up to his work-a-holic tendencies that left him out of sorts after retirement. He didn’t have any hobbies, so he didn’t know what to do with himself when he wasn’t working a full-time job. But then it became clear that it was more than that.
We originally referred to it as “dementia” – which covers a whole host of disorders and can be caused by a wide variety of problems, ranging from vitamin deficiency to strokes to the dreaded Alzheimer’s. I think the hope was that he would get better. But he just kept getting worse. And then the doctor said what we had all been doing our best to deny.
Mom did her best to manage with him at home, but with my brother and me each about 800-900 miles away, she had a hard time being the sole care-giver. About 6 months after the official diagnosis, the family decided that it would be best if Dad moved into assisted living. That was almost exactly 2 years ago. He moved in on November 1st, 2010. On November 4th, he fell and broke his hip. Surgery was necessary, but as we had heard, the anesthesia accelerated the dementia, and he never really got back on his feet.
His first assisted living arrangement was near me. This eased the responsibility on Mom, but she had to travel by plane to see him – something she did about once a month for a year. I enjoyed being able to see him frequently, though. I would often stop by on my way home from work, sometimes just to say hi and check on him, others to actually have dinner with him and visit for a while.
At the end of that first year, she decided that she wanted him back closer to her – a decision that was very hard for me to accept, but ultimately was the right one, since his new residence was in a facility that could better care for him as his medical needs grew. He was there about 4 months when they moved him from the assisted living memory unit to the skilled nursing floor.
I was able to visit him 4 times during the past year. The first visit was in January – about 2 months after he moved back East. I was discouraged for the first two days because he didn’t seem to know me, but the last day I was there, he knew exactly who I was – he even introduced me to a staff member by name and as his daughter. The next time I saw him was in May. I only had a couple of hours with him – I was on my way to my 30th high school reunion. Fortunately, he was having a pretty good day that day as well.
In August of this past summer, I was able to go again – this time for several days. He still lit up when he saw me, recognizing me as someone he knew and loved, but was confused about which family member I was. I spent time with him during the day, and even took him to the main dining room for a couple of meals. It was hard to see the decline, but I was glad to have some time to just be with him.
Last month, Mom was scheduled for surgery – she arranged to have it at the hospital closest to Dad and to do her rehab in the same nursing unit. I took the week off work to be with her – something I am now incredibly glad I did.
I noticed the decline in Dad almost right away. He was much less able to communicate – rarely talking, mumbling when he did, and dozing off frequently (if he was awake at all). I arrived on a Saturday and stayed until Friday, seeing Dad each day except Monday, when I was at the hospital with Mom all day. Most of the time I spent with him was in silence – he was either sleeping or unable to respond to anything I said. Occasionally I would get a nod or even a slurred yes or no, but that was about it.
At the end of the week, I had to return home – I had a job waiting, and my mother was being cared for by the nursing staff. My brother’s wife was due to arrive 4 days later to help out when Mom was discharged. I had plans to fly back for Thanksgiving – which was only 4 weeks away. When it was time to go, I stopped by Dad’s room to say goodbye, but he was sleeping. I told him I loved him, that I would be back and to do whatever the nurses told him.
That night, the nursing staff decided he needed to go to the hospital because he was severely dehydrated and needed IV fluids. He hadn’t eaten much all week, and had had even less to drink. They kept him overnight, and may have kept him longer to administer more fluid, but Hurricane Sandy was due to hit within a couple of days and Mom was concerned he would get stuck at the hospital. He was there alone, because she was less than a week out of surgery and couldn’t go with him, so she arranged to get him discharged and brought back to his room. But we all knew that his condition was of grave concern. So my brother decided to go out with his wife, and together they decided to fly out a couple of days early to beat the storm.
They got there Sunday, the storm hit Monday, and by Tuesday it was clear that Dad’s time was running out. He rallied a bit that afternoon, but was unresponsive again the next day. On that Thursday, my brother texted me in the afternoon that Dad was close to passing. His breathing was very shallow and slow, although his pulse remained strong. The doctor put him on morphine that evening, since he seemed to be in some distress.
Several days went by with little change – on Sunday, my brother and I both commented that we were surprised he was hanging on. We knew it was just a matter of time, though. Between him, his wife, and my mother, Dad had someone sitting with him almost all day. From what they have told me, Dad seemed peaceful – the morphine helped him rest comfortably, so that eased my mind. On Monday, my brother stayed with him almost all day long – he had to leave the next day, and was hopeful that Dad would pass before he had to leave. But in his stubborn way, Dad hung on almost 2 more days.
They left the morning of Tuesday, November 6th and Dad passed Wednesday evening. I know my brother has some guilt over that – he probably has that refrain running through his head. “If only…” But as his wife has said, Dad was probably waiting for him to leave – he always liked to do things in his own way. I am just disappointed that I didn’t realize how close the end was when I was there – if only…
The night that Mom called to say dad was gone was one of the worst of my life. Even though I knew that day would come, and over the 10 days leading up to it, I had been expecting it any day, it still felt like a blow to the gut. My dad – my hero – was gone. Really gone. Not just locked away in his deteriorating mind, but gone from this earth.
I have lost my dad again. I lost him the day he was diagnosed. I lost him the day he fell and had to have surgery. I lost him the day he moved to Delaware. And I lost him on November 7th at 10:30 at night. I guess the thing I can hold on to now is that I will never lose him again – he will remain in my heart forever.