I wrote this a month before Grandpa died… I had no idea that this would be my last visit with the man who meant so very much to me. Grandpa, I can’t wait to hug you in Heaven!
When I walked into the hospital room, Grandpa was lying in bed with his eyes closed. His mouth was opened and his breathing was labored. An IV dangled from his arm, his elbow had a nasty scrape from a recent fall. His legs, uncovered, were swollen and seeping blood and a clear fluid. Tears welled up in my eyes as I stroked his forehead, gently, trying not to disturb his sleep. He slowly opened his eyes and looked at me, through his pain-medicated haze. Someone in the room asked him, “Do you know who that is?” With a tiny sparkle, he loudly said, “Beckie!” I kissed his forehead as the sparkle began to fade from his eyes. He reached for my hand and squeezed it three times, to say, “I (squeeze) love (squeeze) you (squeeze).” I squeezed back three times. He kissed my hand, holding it tightly, then closed his eyes and drifted back into an uncomfortable sleep. I spoke with the people in his room, and with his nurse, about Grandpa’s condition. I had never seen him that bad. The nurse explained that Grandpa’s congestive heart failure was worsening and that the sores on his legs were caused by edema, a pooling of fluid that settled in his lower extremities. As we were talking, Grandpa started to yell, “Help me!” Esthyr, already shy, startled and began to cry. Patting Essie’s back, and trying to calm her, I stood next to Grandpa and kissed his forehead. For a moment, he relaxed. Over Essie’s crying, I tried to explain to Grandpa that he was at the hospital and that the nurses were trying to help him. He wrinkled his face in pain and yelled, “Help me!” My heart ached and Essie cried harder. His voice was so loud and desperate, it must have sounded scary to my wee girl. I had to excuse myself to take her out of the room. I walked to the nurses desk and asked if Grandpa could have more pain medicine. He was writhing on the bed, and just wanted relief. The nurse got up, immediately, and checked on the orders from his doctor. I followed her to the room and Essie started crying, again, when she saw the unfamiliar faces. I held her close to my chest and whispered in Grandpa’s ear that the nurse would be helping him and that I needed to leave for a while to take care of Baby Esthyr. He took my hand in his, squeezed it three times (to say, “I love you”). I told him that I would be back soon and he yelled, “Please do!” Essie’s bawling reached a new level of loud. I kissed his forehead gently and left the room.
I heard someone talking to the nurse about Grandpa…saying that he said that he was in pain, but with his dementia we really couldn’t know. I could barely breathe. I said, “He is IN the hospital because he is in pain! At the very least, he should be able to be comfortable.” The nurse assured me that she’d make him comfortable.
The story is much longer, really, but this is way bigger than this particular story. This is about Grandpa…my grandpa. Maybe, just maybe, it is also about your grandpa.
I have watched as my sweet grandma slipped away into an Alzheimer’s fog. It was truly merciful, and a blessing, when she was called home to Jesus. As she took her last breath, I thanked God for taking her to Heaven. Though I knew I’d miss seeing her, I had missed “knowing her” for years as Alzheimer’s stole our real grandma from us. I have seen how painful it is for someone to know that they are losing their memories, their ability to control their behavior, their ability to recognize their loved ones… I have seen how painful a lack of empathy and compassion can be on someone who is desperate to escape the terrible pain of Alzheimer’s and dementia. I watched my innocent grandma get mistreated because she was a victim of Alzheimer’s. I heard people question her when she spoke of pain she was feeling. It became clear that Grandma had become “Alzheimer’s” to people…she was no longer “Grandma.” As I stood in that hospital hallway, listening to someone question Grandpa’s pain, I remembered Grandma’s pain…and how abandoned she must have felt when her loved ones didn’t believe that she was in pain.
Yes, Grandpa has dementia. Yes, Grandpa has become lost in his own mind. How scary and awful that must be! His body and his mind are failing him. He tries to stand up and can’t trust his legs. He tries to remember the simplest of things and can’t recall them. He has grown completely dependent on others for his most basic of needs. “He talks so naughty!” … “He is so mean!” … “He is so belligerent.” … “He keeps swearing!”… On and on and on, the people continue to tear him apart. Even in front of him, people have described his “awful” behaviors…behaviors that he cannot control. He clearly understands what is being said. “He will forget what we say,” they say, trying to placate me. In that moment, before he forgets, his heart sinks and he feels embarrassed and ashamed. In that moment, he is being destroyed by the ones who are supposed to love him.
The time came for me to say my final goodbye to Grandpa. (I had to drive home to take care of my family.) I stroked his forehead, then held his hand and kissed him. I told him how much I love him. As I held his hand, I prayed to God that He would be merciful to Grandpa. I prayed for his caregivers, that they would be kind to him. Before I let go of his hand, I squeezed it three times to say “I – love – you.”
As I was driving home, thoughts filled my head… Grandpa is much like Baby Essie. She needs me for everything. If she is uncomfortable or hungry, she cries out. When she wants to leave a hospital room because Grandpa is calling out in pain, and it scares her, she cries. If a stranger talks to her, or she has a dirty diaper, she cries. I respond to those cries with love, trying to find a solution that will make her more comfortable. (If I don’t respond, immediately, Essie’s cries become more desperate and her cries become louder.) Grandpa is completely out of control of everything. He can’t even stand up without help. He needs people to meet every need that he has. When he cries cries out, or yells, it is because he needs something. Just like a baby, it is the only way that he can communicate his needs. When people aren’t meeting his needs, he gets angry and says some pretty horrible things. If Essie could use words, she would surely say terrible things, too. “Get me the hell out of this carseat!” … “Make those stupid people stop talking to me! I hate strangers!” … “My diaper has been poopy for an hour. Stop watching TV and change me!” Would I be as quick to walk away from her as people are to walk away from our elderly grandparents?? Would I blow off her needs and just leave her? Would I leave her with a daycare mom who would just walk away from her, while she cried? Would I tell her daycare provider, “She says she’s poopy, but there is no way to know because she’s just a baby.”?
The definition of dementia is: a chronic or persistent disorder of the mental processes caused by brain disease or injury and marked by memory disorders, personality changes, and impaired reasoning. The definition of grandpa is: the father of one’s father or mother. Grandpa IS NOT dementia. Grandpa is the man who raised my mom, the man who took care of me (and the rest of his grandchildren). He is the man who fought in World War II. He is the man who adored my grandma. He is the man who loved us all, even when we were unlovable…the man who stood up for us when we couldn’t stand for ourselves. Grandpa HAS dementia. He needs his loved ones to love him when he is unlovable … to stand up for him when he can’t stand up for himself. When he is crying out for someone to help him stand up, we need to sit with him and tell him how sorry we are that he can’t stand. We need to pray with him when he is scared. We need to stroke his cheek and tell him how much we love him. We need to tell him that we understand his anger, and that we are so very sorry that we can’t “fix him” and that we will do everything we can to make him as comfortable and happy as we can.
If this story is about your grandpa, your grandma, your mom, your dad… Please remember that you were loved when you were unlovable. This person who needs you, desperately, took care of your needs when you couldn’t. This person calmed your cries, protected you from your fears, kissed away your pain… This person is YOUR person.Proverbs 17:6 Children’s children are the crown of old men, and the glory of children is their father.
Isaiah 46:4 Even to your old age, I am He, and even to gray hairs I will carry you! I have made, and I will bear; Even I will carry, and will deliver you.
Psalm 71:9 Do not cast me off in the time of old age; Do not forsake me when my strength fails.