In prior posts I have tried to emphasize how important Dad's residence is to his survival. Knowing that he has a profound emotional attachment to his house, specifically because it was designed by my mother, it is the general consensus of all of his caregivers that his lifespan at this point hinges on how long we can safely keep him in his house with his best friend, Buddy. Because of the strong opinions of my two oldest sisters I have been hesitant to bring up two ideas. The first: a Daddy Cam (like a nanny cam) that we could check online to make sure he is safe during the night. The second: an Autoalert pendant in case of a fall. In light of his escalating memory issues I felt it was finally time to present these two ideas.
At first I sent it to Tom after asking him to exchange a shift. He agreed to the shift change but no answer about the Daddy Cam. Then I sent it to Hillary. She was sick with an eye infection so I didn't expect a reaction immediately.
Finally I sent it to Paula. I truly thought she would be resistant but was surprised when she replied back about the Daddy Cam, "Great idea, Erin!" This was surprising and encouraging and I decided to spitball the AutoAlert as well...what she replied stunned me. For years Paula has been Dad's primary caregiver, the captain of our ship guiding us through his care and ultimately prolonging his life since Mom's death. Of all people, Dad owes his survival to Paula. So what he asked her shocked me beyond belief.
Paula's text to me read: "Today he asked me 'How do we know each other?'"
I was devastated for her. My response was probably the dumbest thing I could have said, "Awww, I'm so sorry! If it makes you feel any better he has only called me by name once in the last year."
Of course it didn't make her feel better! It wouldn't have made me feel better in her position, either...actually it probably made it worse. What I really thought after letting it sink in was "I wish he had said it to me or Tom...any one but Paula". She had been not only his daughter but his right hand for years and today he didn't know how he knew her...only that she was familiar. For the rest of the day I felt like I had a piece of lead hanging in my chest...this weight, heaviness that I couldn't fully comprehend.
It finally dawned on me: a part of Dad died today. That is why Paula was so receptive to the Daddy Cam idea. If he doesn't remember his own daughter eventually he won't recognize any of us, he won't know that he is in his own home, he could wander off. The revelation of not recognizing Paula implies a very dangerous future if safe guards are not put in place. I fear this journey is about to get very difficult.
I finally heard from Hillary. She said she had also thought about the Daddy Cam and as long as it didn't include audio (for privacy reasons that I can understand) she was also for the idea. Apparently there is even a night vision cam available so we can keep an eye on him when he sleeps or wakes up in the middle of the night.
In just a few hours time I have thought a lot about the loss Paula experienced today and the implications for Dad's future. Mike asked me a tough question: what is worse, losing Mom over the course of approximately ten weeks or losing Dad over years. Truthfully, losing Mom was excruciating for us but I think far kinder to her than her fate could have been. God's kindness to her was putting irresponsible medical staff in charge of her airway. That tragedy probably saved her years of pain. Dad is in no actual pain but is directly witnessing his own brain death; He has to actually watch his most prized possession, his extreme intellect, slowly leak away starting with a little forgetfulness and culminating in the inability to feed, wash or speak for himself, and the more advanced his condition, the fewer people he will recognize leaving him utterly alone. I told Paula, "It is so sad, I know. We will just have to love him through it". My mission today changed; This disease is unforgiving, relentless and at the time of this post, incurable. If a miracle happens I will embrace it with every fiber of my being but if not I will hold his hand to the end, just as will Paula, Hillary and Tom. That is our duty and our honor to the man who has loved and cared for us all of our lives. He may not recognize us but he will know he is loved.
I will continue my research, recipes, and approaches that will ease his journey but ultimately I have to figure out how to save my daughters this pain. Given that this is in my family genetics, that I believe that my father's mother had Alzheimer's and knowing the burden we all share caring for Dad, I don't want my children to have to care for me in this manner. They will not have to endure this illness or or the slow loss of a love one if I have anything to do with it. The only acceptable solution is prevention. However long we have to cherish and protect Dad will not be the the entire journey. This journey isn't over without a cure for Alzheimer's.
No comments:
Post a Comment