A note from Jamie:
This blog is part of the new series “Living with a Chronic Illness.” Brittney blogs over at Razorback Britt and I’m honored she’s sharing her story here today.
Living with Alzheimer’s- a Caregiver Story
By Brittney Lee
My dad has Alzheimer’s. He has been diagnosed for a long time, but it’s been progressing faster and faster and we are now in the thick of caregiving.
Dad lives with my mom, but I’m just a few minutes down the road – so I’m involved in his caregiving (and my mom’s sanity). Alzheimer’s, by medical definition from alz.org, is “a type of dementia that causes problems with memory, thinking, and behavior.”
It is a disease, and not a normal part of aging. Sure, people have memory problems when they age, but Alzheimer’s is so much more than memory issues.
It’s progressive, meaning it gets worse over time. It has no current cure. Symptoms include disorientation, mood changes, confusion about time and place, suspicion of family and friends, and difficulty speaking, walking, and swallowing, among other things. It’s caused (they think) from abnormal protein clumps called amyloid plaques and neurofibrillary tangles in the brain that interfere with brain functions.
It’s NOT All-timer’s (as I typically hear it called). It’s named after Dr. Alois Alzheimer who first noticed the brain changes from a patient who died from this disease.
They call Alzheimer’s “the long goodbye” because it is like your family memory is gone long before they die. I know for my dad, he is not the person he was a few years ago. He needs help eating, taking care of himself, and dressing. He will shave his face 10 times in a day because he doesn’t remember doing it earlier.
Dad is aware that something is wrong. He hides it well in front of other people, but to mom, he voices his frustration in his confusion. He has said “It’s sad when a grown man needs help tying his shoes.”
Living with Alzheimer’s means we are always ready for a quick change. What I mean is, Dad may be “fine” one second- happy and calm. But in a moment, he can become confused and agitated. He can become fearful and uneasy. Imagine looking up from your dinner plate and not knowing where you were, how you got there, or how you’re getting home. You’d be uneasy too. We have to be flexible to his needs and sensitive to his condition.
Living with Alzheimer’s means that my dad doesn’t know who we are. I mean, when I call him “Dad” he assumes I’m his daughter. But he hasn’t called me by my name in a long time. And most nights, he knows that my mom is his person, but doesn’t know that she’s his wife. Until recently, mom basically had no breaks from 24 hour caregiving for him.
We’ve recently hired an agency with caregivers to come a couple times a week to give her a break. Everyone needs a break. However, those caregivers come at a very high cost – which isn’t covered by insurance or Medicare. But, it’s a small price to pay to give mom a few hours off.
Living with Alzheimer’s means planning for the future. We know that we likely won’t always be able to care for dad. Alzheimer’s comes with a very special set of challenges that can require expert care. So we’ve been touring facilities, talking with agencies, and looking at budgets to see what we can do for him in the future.
Living with Alzheimer’s is hard. It’s overwhelming. It’s watching your loved one get progressively worse, watching them slip away, watching them struggle more each day – knowing it will never get better. To be honest, the well-meaning question I hate the most is “How’s your dad doing?” because there is never a good answer. There is no “Oh he’s better!” or “Doctor says one more treatment and he’ll be good to go.” It’s with us and it’s not going anywhere. And it’s only getting worse.
There are good things, though. Dad has mellowed out some with his Alzheimer’s. He used to get agitated every time we took him shopping – he hated just thinking about being in a store. Now, we can shop for a long time because he is happy to just be with people he is comfortable with. He NEVER went to the movies- and now he loves going to the movies (he can’t tell you what the movie was about afterwards, but he likes going). Dad is very loving and kind (most of the time) these days – which makes it a bit easier to deal with. And we have to laugh instead of cry – so we find lots of humor in life nowadays.
If you find yourself taking care of a loved one with Alzheimer’s, it’s critical to educate yourself on what is “normal.” We kept trying to fix some of the things that are just part of the disease. Instead of fixing them, we have to adapt and figure out how to live with it. You also need to learn the best way to deal with things.
We tried initially (like most people) to correct Dad every time he had a wrong thing in his mind. If we were eating some where he’s been 10 times, and he said “Oh I’ve never been here” we would fight back, “Yes you have, you’ve been here 10 times!” – which only confused him more since there was no memory of that. Now we just say, “Oh you’ve never been here? That’s ok. The food is good. You’ll like it.”
It’s better for him to go along with what he says, even when it’s wrong. You will also need a huge dose of grace, mercy, humor, patience, and forgiveness. This is a hard disease for him to live with, and it’s hard for us too. But because we love him, we are learning to love him as he lives with Alzheimer’s.
Thanks for writing. A five year journey with my dad’s Lewy Body Dementia ended this fall. Many will learn how to cope with their own by reading your stories. Keep on sharing.
My heart goes out to you. We traveled the Long Goodbye road with my mother-in-law and applaud you on your advice here. I pray you and your mother will always find just the right help at just the right time as you walk with your dad.