the long goodbye

After my parents visit this fall, I needed to take some time to let things soak in. I posted about the first day with my dad in this post - Alzheimer's Grandpa, but that was just the first day. Then I saw into what my mom has been experiencing over the last few years. I saw his confused stares, his stiffened hands, his fading spatial awareness. I saw that most of my papa has already gone.

One day we were driving to go on a nature walk and see the fall foliage in the Adirondacks. My mom was in the car in front of us, so it was just me, my dad, and Matilda sleeping in the backseat. Every 10 minutes we had the same conversation. Who is in the car in front of us, do we know them? I would explain that it was his wife Mary, my husband Tyler, and my 6-year-old son Parker. How long have you been married? I would explain that I have been married for 10 years and he would chit chat about how marriage is a good thing, that it is good we have each other. Then he would notice Matilda in the back. Who was she? How did she get back there? Are we taking care of her? I would explain everything and finish by mentioning how beautiful the leaves were. That is when he would notice the car in front of us and ask again: Who is in the car in front of us, do we know them?

Each night after the kids went to bed, my dad would become more disoriented than usual. He would walk around putting things in his pockets before announcing his farewell. It took us a few days, but then we realized that he thought he was in a hotel or bed and breakfast and was taking things from the lobby like apples, towels, magazines, and snacks for later. One night, he was sure that he was at a car repair shop and kept complaining about the long wait.

My kids knew that Grandpa was forgetful, and it started making them feel uncomfortable. Parker became impatient explaining who he was over and over, but the worst was when my dad would snap at him, accuse him of not knowing something, or get upset when Parker would call him Grandpa.

Matilda just began avoiding him. My dad thought Matilda was so adorable and would watch her, stand close to her, or try and feed her. He had a hard time understanding how old Matilda is and that she is capable of doing things herself. One time he was holding her for a photo and by the time I was done taking photos he had forgotten she could stand and was confused when I asked him to set her down.

And then there was the time when my dad thought I was a "teen mom" when I told him that Matilda was mine. He got so uncomfortable and started talking to me about how sometimes accidents happen and lots of men are jerks. That's when I realized he forgot about Tyler, forgot that I am in my thirties, and forgot that he was staying at my house. On most days, he thought we were babysitting Matilda and, on most days, I let him think that.

A caregiver's work is never ending. My mom needs to be with him at all times, she has to help him remember to eat, how to eat, what to eat. One night my dad forgot how to use silverware and was so embarrassed. He would chew his pills instead of swallowing them with water. He would get upset with my mom when she tried to help him get in his pajamas or brush his teeth. And nights were the worst. He was up often needing to go to the bathroom, but he wouldn't know where to go. And even when he found the bathroom, he would sometimes get stuck inside with the lights off. By the end of their stay, I was exhausted from all the nights up listening, waiting to help if he needed someone, hoping he wouldn't go into the kids rooms.

Alzheimer's is such a horrible and sad way to go. My dad is only 66 and his life has been drastically cut short. My mom's retirement is now a full time job without any benefits. It is a long and heartbreaking goodbye on all fronts.

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