It had been a suddenly stressful couple of days that began with a simple change in what was typical. If my father was anything in his later years he was predictable. I knew when dad was riding his bike, when he was grocery shopping, when he was eating lunch or dinner and when he was getting ready for bed. I knew when I could call and predictably get ahold of him.
Dad had mentioned in passing the day before that he didn’t feel great. Nothing serious but the fact that he mentioned it made it noteworthy. He was never sick. So on Monday morning I tried to call to check up on him. No one answered so I called his cell phone. No answer there either. That wasn’t all that unusual since he wasn’t adept at using the cell phone. Much of the time he ended up calling back. But he didn’t. So I practiced patience and I proceeded to put my head down and work in my office, all the while with a bit of an uneasy feeling. I tried to call a couple more times during the afternoon.
Finally the phone rings
It was about 6 pm that my cell started to ring and with a big sigh of relief looking at the inbound number, I answered happily expecting to hear dad’s voice. But it was a man’s voice asking if this was Nancy. Uh oh. I suddenly had a huge pit in my stomach, responded affirmatively and waited. The man introduced himself as Deputy Mancusi and said that he supposed that he had my mother with him. I could tell he was trying to be calming in the way he spoke to me but he proceeded to tell me that he picked my mother up from the local bridge. She had been lost.
My reasoning kicked in and I immediately thought that maybe she had wandered away and dad was now out looking for her. But as the conversation unfolded, the situation became much more alarming. The attendant on the draw bridge had noticed her wandering about by herself for a while and called the sheriff. So she was clearly by herself and she had dad’s cell phone and her handbag on her. The Deputy asked if the address on her license was the correct one and we agreed that he should take her to the house. I wasn’t actually sure if she would recognize the house given the situation. She didn’t. But she had a key on her and he took her inside. At that point we spoke again because no one was home.
My mind was racing with so many questions. Where was dad? Why did mom have her bag and his cell phone? Why was she on the bridge? Should I believe this man who claims he is a deputy? Is my mother really in danger with him? What should I do from 1500 miles away?
Evaluating the situation
I asked the Deputy to tell me if there were cars in the driveway and the garage. Well, there was a Cadillac in the garage. That means dad is somewhere in the Hyundai. Maybe he’s looking for mom. At this point the Deputy called in to the office to find out if there were any accidents reported with a blue Hyundai involved. None. Then he asked me what hospitals dad would use. He had given mom a glass of juice and she was sitting calmly next to him in the dining room.
Then the Deputy asked me if there was a friend or relative in the area that could look after mom. I said mom had a sister living at a local condo complex but I couldn’t call her. Laura had her own problems and was good at avoiding helping her family. People helped her not the other way around. The Deputy said that he would call the hospitals and Laura and give me a call back.
While I waited, I knew I had to get down there as quickly as possible. So I pulled up the Southwest website and booked the earliest flight out in the morning. It would put me in to the house by 10 am. That was the best I could do given that it was already 7 pm.
Dad was at a hospital.
Deputy Mancusi called me back in about 20 minutes. He found my father at one of the hospitals and had Laura coming over to the house to stay with my mother. At that moment I just wanted to give him a huge hug and fall on the floor sobbing. We still didn’t know why my mother was on the bridge and I needed to talk to my father to find out. I hoped he was able to talk. So we signed off with me thanking the Deputy sincerely. This scenario is what happens when the caregiver gets sick.
Two seconds later I dialed the number of the hospital that the deputy had given me. When I was connected I asked for the nurses’ station and introduced myself as the daughter. I got an update from his nurse and then they connected me to dad. That moment that he answered I felt such a deep sense of gratitude and relief.
First we talked about his condition and medical tests then I asked him about mom. He said simply that she went home. He had no idea that his wife had been hopelessly wandering for what I then estimated to be about 6.5 hours. After they admitted him from the ER and sent him up to a room, he had given her instructions to go home. The last he knew he had given her some cash and his cell phone and told her to take a cab home. Unfortunately he failed to recognize that she no longer had the skills to do this. This was the battle I had been fighting.
Dad overestimated my mother’s abilities to care for herself.
I’m sharing this story because it illustrates what happened when he didn’t acknowledge that if the caregiver gets sick, the dementia patient is alone and vulnerable. At that point in time, my father was still not facing the current mental decline of his wife. He overestimated her abilities and assumed that she could still care for herself. Even though she was in the “early stages” of Alzheimer’s disease, she was impaired beyond the point of caring for herself and being safe.
So when a loved one reaches this point, what do we do? Many people are in a situation where they have other family or close friends who would jump right in and help in the short term. This was not the case with my family. As my mother “progressed”, my father became more protective and reclusive. No one knew what was happening and he certainly wasn’t advertising it. He had withdrawn from friends and never even acknowledged to his closest friends that anything was wrong. The most he would say is that his wife had some minor memory issues.
As a result of this episode, I registered my mother for life alert and ordered a bracelet and necklace for her to wear. If she wandered and was found, then there was a number to call and I would be notified. I made sure I would be first to be notified and then my father. If ever the caregiver gets sick again, we would be notified of mom’s whereabouts. But then what? I never got past that question because life got busy and things returned to normal…for a while anyway.
(As a side note, dad never put the bracelet or necklace on my mother. I found them neatly in the package in the drawer, when I was cleaning out the house 3 years later.)
Devise a plan if the caregiver gets sick.
So in hindsight, what would I recommend? I would recommend formulating a fall back plan in case the primary caregiver gets sick. The dementia patient needs a plan that can be put into action immediately because it is a life and death safety issue. Friends or family are the usual backup plan. My parents had retreated socially so there was no one nearby who could help quickly. Many of their close friends had reached an age where they had moved closer to adult children. Family nearby, as I said earlier, consisted only of my mother’s sister and only sibling, who was unwilling to help.
Identify respite care
So what would I have formulated as a fall back plan? After learning all that I have learned the past 10 years, I would have identified a short term respite location for my mother. There are many ALFs that actually do have respite programs for dementia patients and their families. Find one and talk to them. Know who to call.
Engage a geriatric care manager if distance is an issue.
The other component of this fall back plan needs to be “boots on the ground” so to speak. I was living hours away by commercial air travel and about 24 hours by car. I wish that I had engaged a geriatric care manager much earlier than I did to represent my father and me in case of emergency. That person or agency could have taken immediate custody of my mother so that she would be safe. There are professional companies that can be hired and the arrangement can be customized. Typically you are only billed when services are rendered.
It’s not that I hadn’t ever thought about what would happen if dad, the caregiver, gets sick. It’s that I never opened my eyes to the possibility of it being imminent. In this daughter’s eyes, he was still invincible. He was still an “athlete” and still did 100 sit ups every day. I had in my mind that he would live to 100. But I was blind to the impact of stress on him. The thing is, no one is invincible and the prudent thing would be to devise a fall back plan. Don’t wait.
Comments are closed, but trackbacks and pingbacks are open.