Snapshots of Dementia: It’s Complicated
That brief phrase might be my best answer to the question I hear most often about my husband: How’s he doing? I doubt those who ask have time or desire to hear the long version of my response. So “it’s complicated” works well.
Before I had the privilege of carrying a child, I thought pregnancy meant you gained weight, your abdomen grew larger, and in nine months, you had a baby. I had no idea that so many areas of my body, from hair to fingernails to feet, would change as I journeyed through those months.
That’s how dementia is. Before it struck our family, I pictured it as a primarily a memory problem. For Tom (but not for all people living with dementia) memory loss plays a big part, but dementia affects so much more than memory.
The best way I can think of to explain “it’s complicated” is to compare how he was two years ago (just after we moved to our home in South Carolina) to now in several key areas.
2020
SPEECH: Has become increasingly halting.
VISION: Poor depth perception.
MEMORY: Remembers many people but not dates and events; needs daily reminders to take medication.
DIET: Normal, some food and drink obsessions. Has lost his sense of smell, which has begun to affect his sense of taste; likes and dislikes are changing.
HOUSEHOLD TASKS: Little initiative to help on his own but vacuums, mops with reminders, and does occasional other chores.
FINANCES: Can no longer manage bank accounts or personal finances; still has a debit card and one credit card that I monitor.
EMPLOYMENT: Retired after losing three successive jobs in late 2018/early 2019, all dementia-related but has no benefits.
DRIVING: Our family asked him to give up driving in April 2019 after minor accidents plus observation of his driving; still wants to transfer his Florida driver’s license to South Carolina “just in case.”
PERSONAL CARE: Normal except that he stopped going to the dentist a few years ago and needs treatment.
BALANCE: Diagnosed with a balance problem in late 2019 and had a few weeks of physical therapy.
SWALLOWING: No known issues; coughs (a lot) and chokes (sometimes).
SLEEP: Normal; was acting out his dreams and had restless nights until one neurologist prescribed an antidepressant.
INTERESTS: Decreasing; still engages with family with encouragement, enjoys church, music, movies, TV, reading, golf, and has obsession with an online golf game. Will often choose this game over engaging with family. A former professional trumpet player, he has not practiced consistently since May 2017.
2022
SPEECH: Much slower with frequent pauses, often gives up.
VISION: Narrowing field, misses many objects.
MEMORY: Remembers people but often forgets names; rarely knows what day it is; I now dispense all medication.
DIET: Appetite control seems “broken,” can consume huge quantities or very little without seeming to notice. Obsessed with sweets, pepper, and very hot food. .
HOUSEHOLD TASKS: Willing to help but rarely follows through; still helps when we work together.
FINANCES: No longer has any bank or credit cards. I tried a children’s debit card with controls, but he lost it.
EMPLOYMENT: The Social Security Administration declared him fully disabled in February 2021.
DRIVING: No longer has a desire to drive but sometimes calls out that I need to turn, stop, or go when to do so would be unsafe. Surrendered his license for ID card without complaint.
PERSONAL CARE: Needs reminders to shower and change clothes. Can still manage most personal care tasks with less proficiency. Dental problems resolved.
BALANCE: Fell and broke two ribs in late 2021; has fallen four times since without injuries. .
SWALLOWING: His new PCP discovered he had lost his gag reflex; a swallowing test showed issues, so we take precautions.
SLEEP: In acting out his dreams, he tried to choke me one night (he remained asleep). Now takes an additional prescription and Melatonin with good results.
INTERESTS: He has the same interests, but it is increasingly harder to pull him out of one activity and into another. He would happily sit and play on his iPad all day, so I try harder to keep him engaged. He still reads and watches TV or movies, enjoying them largely in the moment without true understanding. He has played his trumpet with our son a few times and practiced a bit on his own.
This list seems lengthy, but I could have written much more. The declines all add to the silent grief our children and I hold in our hearts. We thank God that, although Tom knows he struggles at times, he doesn’t realize how much.
What changes have you noticed in your friend or family member who is living with dementia? Do some of the concerns I’ve noted here surprise you? Did you think dementia related mostly to memory loss? Feel free to share your thoughts here or on social media. Our story matters, and so does yours.
Nothing you have said here surprises me. I could write the next year for you and be surprisingly accurate. Its not a journey any family wants to embark upon. God gives us the strength to carry on….
You are so right in that no one would willingly choose this path. Thank you for your prayers and your faithful care for your husband. Hugs and prayers!
As I wrote on your FB post, such a difficult journey of intertwined love and sorrow – impossible without intense dependence on the One who loves you both!
Praying for you and Tom daily, my friend!
<3
So many of those journeys in our lives. Grateful for a firm foundation of faith and for friends like you!
Prayers for you and family and of course for Tom. Rex is going trough the same thing but we were given more time. Can’t imagine going through this and still trying to work. May God give you strength. Love
You, Rex, and your family are in my prayers. It’s hard no matter when it hits. Hugs!
Marti, I am so sorry. I will never forget the first time my dad looked at me and said “What is your name?” I calmly just said “Leslie”. His personality changed from being rather gruff to soft and worrisome. I’m thankful that I believe he accepted the Lord before he died. He was 69. But we might expect to experience this with a parent. Not our spouse. You are in my prayers friend. I love you dearly.
You’re so kind, and I love you much too! It is an additional challenge when the person is younger, but I am grateful we didn’t face this as early as some. Grace abounds.