Memories have always fascinated me. If two people take part in the same event and then describe it, they will emphasize different aspects, based on their perspective. Over time, our tendency to edit out the bad and highlight the good (or vice versa) comes into play. After the passage of many years, if you ask the same two people to recall the memory, you may think you’re hearing about two separate events.
When I was a teenager and my grandmother was in her sixties, she developed Alzheimer’s, although that term wasn’t used much at that time. I loved to hear her tell stories about her childhood as a child of German immigrants in rural Pennsylvania with laser-sharp focus. However, it was scary when she forgot things in the present, like turning off the gas on the stove or the water in the chicken house. I’ll never forget the weekend the whole family had to don our hip boots and throw the bodies of the drowned chickens in the incinerator.
My parents are now a couple decades older than Grandmom was, and I find myself traveling down the same path. This time feels harder. Perhaps that’s because the relationships are closer and I’m the local caregiver. Or because there are two of them.** (Disclaimer at the end)
About ten years ago, my dad had a small stroke followed by a whopper. Apparently he had another small one just before Christmas that immediately caused a form of dementia called Vascular Dementia. Only certain brain functions have been affected. He is never sure where he is, and it’s very disorienting and frightening to him. Most days he thinks he’s in his childhood home in Pennsylvania. The geriatrics doctor described it like a Christmas tree with lots of lights and a few bulbs go out. The bulbs can never be re-lit.
Every time I see him (every day unless he’s napping), he asks how I got there. He thinks he’s in Prospect Park, but I’m not sure where he thinks I’m coming from.
“Did you come by railroad today?”
My house is a nine-minute drive away.
“No, I decided to drive.”
“You did? How long did that take you?”
“It was quicker than you’d think.”
“How was the traffic?”
“Not too bad today.”
His sense of humor is still intact, though. The geriatrician asked him, “When did you first notice you had memory issues?”
“I forget,” he said.
My mom, on the other hand, has struggled with recalling words—especially nouns and names—for several years, gradually getting worse. Sometimes she confuses who is doing the action in a memory—herself, my aunt, or me. Filling out forms and dealing with the horrible people who prey on the elderly with their scam phone calls and letters paralyzes her.
When my dad returned from the doctor, he talked her into going. He told her how nice the doctors were and how much he enjoyed taking the cognitive tests. I love how the geriatricians take their time with their patients (each appointment was well over two hours), really listen, and never point out when they get a question wrong. They try to include the whole family, but in the days of Covid, that was just me.
My mom did very well with many of the questions, but it was heartbreaking to watch her–the woman who has always excelled with words and art–try to draw a clock and name animals. Caring for my dad has taken its toll. I’ve known for years that something was wrong, but I hoped it would be what’s called Benign Senescent Forgetfulness, but it is not. Her case is much milder than my dad’s—Mild Cognitive Impairment—but it will keep gradually progressing.
There is no cure.
My brother and I are still reeling.
We have a long journey ahead. I’m so thankful it’s a journey God will walk with us.
If you are walking the same path as us, I want you to know about an excellent book I just read, recommended to me by a friend: Finding Grace in the Face of Dementia, by Dr. John T. Dunlop. He writes about how we can honor God by treating the patient with dignity. It’s a must-read.
** If you know my parents, please, there is no need to call them and report that you read something that Taryn wrote about them in a blog. That would not be helpful. I do have their permission to tell people, and this is a story that affects me and, I hope, may help a reader. But I do not want to hurt their feelings.
I thank God for you, Taryn, and Steve, Kurt & Susie as well, knowing that you will always do what is best for my Forever Friend and her husband. They couldn’t ask for a better team of God abiding people to handle their problems.
With people living much longer these days, it just seems normal to me that they would develop MCI due to old age. Of course, now they have put name tags on these symptoms. I often say to Patti, “Who ever thought we would live to be this old.”. In any case, the best we can do is live each day to the fullest knowing that God has had a plan for our lives ever since we were born and that, ultimately, He is in charge. Each morning I pray as I start my day, “Guide me, dear God, as I go about my day. Impart your thoughts, order my steps, guide my path. Amen.”.
Patti and I talk often on the phone and go on and on chatting just like we did as teenagers. We reminisce, laughing over experiences we shared and recalling the friendship that our mothers shared. We give each other needed support and pray for each other daily. This is a gift to us from God❣️
As you have often heard quoted, “old age isn’t for sissies”, but we will survive!
You can rest assured that I will not discuss this blog with anyone.
Thank you so much, Elaine. You are a loyal and lifelong friend of my Mom’s and I’m so grateful she has you. I hope this post didn’t seem inappropriate to you. I know my parents will never see it, but I don’t want to disrespect them. By the way, Dad keeps talking about a seafood restaurant by the railroad tracks. Does that sound like something in Prospect Park?
Not that I can recall, Taryn. There was a butcher shop very close to the railroad station and tracks and Adele and my mother, Eleanor, shopped there. I remember getting a pickle out of a big jar on the counter! The railroad station was MOORE ~ a property owner named Moore donated the property for this station. He did so, with the “condition” that the station should carry his family name for as long as it exists.
Thanks for putting into words so well what you are experiencing, Taryn. I walked through 5 years with my Dad who needed in home care as he began to lose his short term memory. We could live in the moment and the long ago stories. I have sweet memories of our times together. He remembered my voice a few hours before he died as I assumed I would not get to TN in time to tell him goodbye in person. Now I offer to help others who are caring for family members. These can be hard days as there is no actual roadmap, only guidelines. Each person is different, and you don’t know how long and how far the road is to the end.
Blessings and daily grace to you all the way from Austin!
Thank you so much, Teresa! We will all need that daily grace and strength. Good to hear you have sweet memories from those years with your Dad. One thing I read is that there can still be joy in the moment: tasting food they love, looking at a beautiful scene, hearing music they love, feeling love from a visitor even if they don’t recognize the person.
Your words brought back many memories of my paternal grandmother who also had vascular dementia. She was also German and always worried about feeding the chickens during her hospitalizations. We always reassured her that we would take care of them when she couldn’t. Yet she still climbed out of the hospital bed and restraints trying to get to them after visiting hours. It was so hard to watch her decline, and I loved her so much.
Your responses to your Dad and your thoughts on double caregiving are spot on. It can feel like a long, lonely journey. My past work taught me that family support, a good physician, a sense of humor, and a strong faith were ingredients that made caregiving a little easier. Extend grace to yourself on the hard days. God is with you on the journey. And as a wise physician once said to me, “Our family members may forget but God does not forget!”
Oh, Chris, your words are so helpful. I love your tips and perspective from your work, especially that God does not forget!