“Something’s wrong—changed—with your dad,” Tony Bear said. “He’s not as social as he used to be. Not as talkative. And when you ask him a question, he does this thing where he turns it around and asks you the question.”
I’m embarrassed to say, it was my husband—not me, not my mother—who first recognized my father’s cognitive decline.
Tony noticed the difference at Cracker Barrel one night, when our family was out with my folks. I remember the outing, even the way the air smelled—the mingled fragrance of burning autumn leaves and asphalt cooked by summer sun.
“Who are those kids?” Dad asked. I followed his gaze. He meant my kids, his grandchildren. He didn’t know who they were.
How did I miss my father’s slipping-away? Often, he would ask, “What time is it?” four or more times in an hour. A name, or a word, would be on the “tip of his tongue” and he couldn’t retrieve it. But that happens to me sometimes too.
Later, Mom told me Dad sometimes drove the wrong way down one-way streets. Every day he visited the bank because he didn’t remember going the day before. One time he spoke so sharply with Mom in the grocery store, a manager asked if everything was okay.
For the longest time, Mom kept those anecdotes to herself. No doubt they terrified her. By then, my parents had been married almost 50 years. Dad did so much—home maintenance, all the finances, anything automotive—surely she wondered, “How will I manage without his help?”
For your benefit, and your parents,’ here’s everything I learned during my father’s Dementia Days.
Tip #1: Be on the lookout.
Since I’ve been close to a number of individuals as they began to succumb to dementia, I’ve learned what to look for. In my opinion, the sooner you recognize cognitive decline, the sooner action can be taken to possibly slow it.
Here’s a list of signs to watch for (This list is more technical than the observations I’ll make below.).
Tip #2: Appearance is everything.
Occupational therapist Juliana R. mentioned a few warning signs. “If a person who was once really neat starts to become disheveled in appearance,” that can be an indicator. “Wearing the same clothes, being resistant to change them, lack of showering,” are all indications.
Is your parent bathing, washing their hair, shaving? If not, maybe they’re forgetting. Or perhaps they’re afraid.
At 86, my mother is thankfully alert, but a year or so ago, she admitted she wasn’t showering because she was scared of falling. I immediately arranged for someone to assist her in bathing.
Tip #3: Home sweet home.
In your parent’s house, how does the kitchen look? Are the dishes washed? Is the refrigerator stocked?
Juliana suggests you consider the cabinets. “Sometimes they’ll all be open. It’s because the person needs to see items (because they’re losing the processing skills to problem-solve and look) and they may be trying to remember where things go.”
Also, are they cleaning the bathrooms, making their bed, dusting the furniture? If not, maybe they forgot how long it’s been. Or perhaps they started, but didn’t finish, the chore.
Tip #4: Check, please.
If possible, Juliana R. recommends you peek at their checkbook. Is the register up to date? Are they paying their bills? If not, that’s a warning sign, too.
Once Tony’s mother became forgetful, Tony or his sister Maria went through her mail-pile on a weekly basis. And they started paying her bills.
Tip #5: Testing, testing…1,2,3
Soon after Tony first commented on Dad’s condition, my oldest brother, a physician, insisted our mother take Dad for a mental health assessment. Tony had been right. Dad’s dementia decline had indeed begun.
At the initial exam, you can expect your parent’s physician to administer a mini mental status exam, or the more thorough Montreal Cognitive Asssement. The doctor may also prescribe a medication to possibly slow the decline in cognition. Whatever happens, you will have a benchmark of where your parent was at that particular point in time.
My dad’s doctor also gave us an estimate of what stage of dementia Dad was in and what we could expect.
Tip #6: Depressed mode.
Tune in to your parent’s mood. Are you detecting any signs of depression? Juliana says as an individual “realizes their abilities are changing, it can be uncomfortable.” I can only imagine.
According to the Alzheimer’s website, “Depression is very common among people with Alzheimer’s, especially during the early and middle stages. Treatment is available and can make a significant difference in quality of life.”
My mother’s geriatric psychiatrist stressed the importance of dealing with mental health issues since depression and/or anxiety can impair cognition. Often, if those issues are dealt with, you will see an improvement in cognitive function. I witnessed this very thing in my mother, a full recovery of her faculties. Praise God!
Tip #7: Money matters.
While your parent is still alert, ask them to add the name of at least one loved one to their banking accounts. This individual will need to accompany your parent to their bank branch in order to sign the signature card for each account, as well as their safety deposit box, if applicable.
This person should regularly check their parents’ accounts online. In my mother’s situation, I became the second name on all her accounts. That’s how I figured out someone stole four of her checks, wrote them to himself, and cashed them. For hundreds of dollars! I reported the incident to the bank, and I filed a police report. Because my mother was not his only victim, the man went to prison.
Tip #8: Your brother’s keeper.
I actually recommend two siblings being able to view the parent’s online banking. I say this because a good friend of mine and her sister were ripped off by a third sister.
The sister, who was the primary caregiver to their father, arranged to have all of his assets put in her name, unbeknownst to her siblings. Then she spent all of his money.
You may think you know your siblings and what they’re capable of. But you may be wrong.
Tip #9: The Skills to Pay the Bills
If you haven’t done so already, you and your siblings should decide who will pay your parent’s bills. FYI, this task doesn’t have to be the responsibility of the person who is the Durable Power of Attorney.
In fact, nowadays, with online banking capabilities, the person paying the bills doesn’t even have to live in the same town as the parent. In order to decrease the burden on the primary caregiver, this would be a great job to delegate to a trustworthy out-of-town sibling.
Tip #10: Get respite care. Now.
Respite care is the temporary care of an individual (ie. elderly or ill) in order to provide relief for their usual caregiver(s).
In the early days of Dad’s dementia, anytime Mom went to the store or beauty shop, she worried what was happening at home. Sometimes folks with dementia will “run away” from home. I’ve heard of families installing slide bolts at the bottom of doors to prevent this. Great idea! Thankfully, though, my father never roamed.
Soon after Dad was formally diagnosed with dementia, I booked the Visiting Angels to give Mom a break a few times a week.
Alas, it was too late.
Tip #11: In a person with dementia, change can accelerate their decline.
To a person with dementia, stability and routine are very important. Strive to maintain predictability in your loved one’s day-to-day schedule, their home environment, the people they see, etc..
Two or three days in to our respite care experience, my father slapped one of his caregivers, hard. He was then taken to the psychiatric ward. Then he was moved to a personal care home. Then he went back to the psych ward. Then he… Okay, I’ll stop.
Tip #12: Insult to Injury
Change is not the only thing that can accelerate dementia. I’m sorry to say, a lot of things will.
- Delirium: a state of worse-than-usual confusion brought on by illness or some kind of stress on the body or mind. It is especially common during hospitalization.
- Certain medications: We experienced this with my mother. A few years back, she began to exhibit symptoms of Parkinson’s Disease. Her doctor researched her medications and found that one of them can induce Parkinson’s-like behavior. Within a month of discontinuing the med, the worrisome symptoms disappeared. Whew!
- Head injury
- Certain Foods: White breads, pasta, processed meats and cheeses, all of these have been linked to Alzheimer’s disease.
- The approach of dusk, (aka “sundowning”)
- Heavy alcohol use
- Cardiovascular risk factors
- Sleep apnea
Tip #13: Help is on the way.
Once your family determines they need outside help, you have a choice: agency or private pay.
The benefit of agency caregivers is that they tend to be better trained. They know how to safely lift a client, bathe them, and help with their toileting activities.
Agency individuals are also typically bonded, meaning a third party will be responsible for covering any financial losses. So if something “goes missing,” there is recourse.
The main benefit of private care providers is cost. The going rate last time I checked was $10/hour. In my experience, agency care costs $18-21 per hour.
Though you may prefer agency caregivers, if your parent requires 24-7 supervision, you may need to consider private care. Or, you can cobble together a schedule utilizing both. Perhaps you can schedule agency caregivers during the day. Then at night, as your parent (mostly) sleeps, a private care individual could keep watch.
Tip #14: Days and nights mixed up.
Juliana R. says individuals with dementia sometimes get their days and nights confused. Tony’s paternal grandmother experienced this. More than once, she’d wake up in the middle of the night and make breakfast, but instead of frying the egg in a skillet on the stove burner, she’d break the egg directly onto the lit burner.
In later stages of dementia Nana would put garbage down the toilet. She’d take meat out the freezer to thaw and forget about it. Family members would have to follow the smell of rotting meat to the pantry or her breadbox.
Tip #15: Better safe than sorry.
Once you hire outside help, consider removing all valuables from your parent’s home. Valuables are not just jewelry. Think:
- Credit cards
- Check book(s)
- Social security cards (and paperwork with your parent’s social security number)
- Investment paperwork
- Original copies of stocks and bonds
- Last will and testament
- Deed to the house
- Title to the car
- Banking statements
- Sterling flatware
- Valuable collectibles
Tip #16: Patience is a virtue.
Logistics aside, as your parent’s cognition declines, there will be changes to their behavior, changes you will no doubt find trying. Some will make you sad. Some will make you mad.
As I mentioned above, for months if not years, my father constantly asked the time. Tony’s mother, on the other hand, didn’t ask questions. She told stories, usually the same ones, over and over.
Her repetition wore on me. Tony Bear though, was always gracious to listen. “They are great storytellers,” he advises. “Listen and enjoy. Don’t get frustrated when they tell you the same story over and over. You’ll miss those stories one day.”
Recently I viewed a profound video on dementia. A courageous woman with early onset dementia describes how she feels with the condition. I wish I’d known these things during my father’s final years.
Tip #17: Be gentle but firm.
“Be firm with them when necessary. They can act like a child at times and need you to discipline them.” This counsel is also from Tony.
More than once Tony had to be firm with his mother, like when he and his sisters hired a contractor to update her main bathroom. The door opened inward so if she fell against it, emergency crews would have to crawl through the window to rescue her. A sliding door was the solution.
The presence of contractors in her house—a change, albeit temporary, in her environment and the faces she was used to seeing—infuriated her. As did the use of her funds to finance the work. There may have been a noisy fit pitched in a crowded restaurant. The family proceeded anyway, for her safety.
More than once, Tony was firm with my mother, usually because she bullied me. “Don’t take it personally,” Mom’s psychiatrist advised me. Remember that line. You’ll need it.
Tip #18: A picture is worth a thousand words.
If your parent still remembers the faces of their loved ones, help them maintain that ability. Show them pictures in photo albums or on your cell phone. Watch family videos together. Bring your iPad so they can see pictures and videos of their children, grandchildren, and great grandchildren via Facebook. My mom loves this!
Tip #19: Baby come back.
Commit to and carry out a consistent schedule of visits or phone calls with your parent. Mom knows I’ll visit her at least every other week. Plus I call every few days or so.
When my dad was in a nursing home, we visited him once a month. I always took a Burger King Happy Meal and a Baby-Ruth candy bar. To satisfy his sweet tooth and craving for salty food.
The kids drew colorful pictures to display in his room. I made Dad a “Linus blanket” embroidered with his name.
We always spoke to Dad as if he was 100% alert.
Tip #20: The Power of Music
During every visit we played music for Dad. We wheeled him into the sunny dining room where I played piano, Josy played flute, and Cody Brook, her violin.
One time, Dad astounded us by singing “Amazing Grace” as we played it. Another time, he started keeping time like a conductor as I played a portion of Franz Liszt’s Hungarian Rhapsody No. 2. Obviously, my Daddy, a lover of classical music, knew the piece well.
There is amazing research around cognitively-impaired seniors and music. Music from their youth can make them come alive! Watch this fantastic 2-minute video to see what I’m talking about.
Tip #21: Call me anytime.
Because they live far away, some family members can’t visit often, but they can call. Encourage them to call once a week, preferably on the same day of the week. That gives your parent something to look forward to.
Tip #22: Please, Mr. Postman.
Another wonderful way to stay in touch is via mail. Birthday cards, Christmas cards, letters. Who doesn’t love receiving “real” mail? With news of loved ones far away? Maybe even photos.
Whenever I write a newspaper column or blog post I think Mom will love, I mail her a copy. She loved both of my posts about Scotland.
As long as people are calling, visiting, or sending cards and letters, your parent will feel loved, not forgotten.
Tip #23: Let’s blow this popcorn stand.
When you visit your parent, take them out of the house (or senior-living facility) for a change of pace. Just like you, they can experience cabin fever.
My mom loves to go out to eat. She also enjoys simply driving around. To see things like:
- Spring flowers
- Fall foliage
- Fancy neighborhoods
- Christmas lights
Tip #24: You’ve got a friend in me.
Because I know community, hope, and purpose are important to seniors, I love that my mom plays cards with her buddies for three hours every afternoon, seven days a week.
Socializing isn’t just fun. It’s important! Mom’s geriatric psychiatrist informed us social interaction is one of the best ways to maintain brain vitality.
Tip #25: Supervised Med Pass
In early 2017, my mother’s psychiatrist took me out in the hall. “Your mother can no longer manage her medications. I insist she be moved to a facility with a supervised med pass.”
Thankfully for Mom, all we needed to do was move her to the assisted-living side of her senior-living community. A relatively simple task, but oh, what a difference!
The key is the supervised med pass. Now that Mom is taking all her prescriptions as directed, she is a completely different person. In the best of ways. Seeing how happy and functional (and rational!) she is these days, for her sake, I wish we’d figured out a way to supervise her medications years ago.
Actually, some pharmacies provide such a service. They package a patient’s medications—morning, afternoon, and night—in individual, labelled pouches. If a similar service is available near your parent, I highly recommend you sign up your mom or dad as soon as possible.
Tip #26: Listen up.
This final bit of counsel comes from my mother’s favorite Interim HealthCare companion, Heather. At 21, Heather is wise beyond her years.
“One big thing I learned from your mom and from my other clients, is to listen. Open up your ears and let them blow you away. They have so much wisdom and stories to give. This generation and generations to come need to absorb everything we can, and maybe, just maybe, this world would be better for it.”
Bravo, Heather, bravo!
My prayer for you (and your aging parents) … Serenity
All this to say, I know this path is hard and will often break your heart or drive you to chocolate. Please know if you need me, I’m here for you. Shoot me an email and we’ll have a cyber-chat.
In the meantime, I’ll be praying this for you:
God, grant my friend the serenity
to accept the things she cannot change;
courage to change the things she can;
and wisdom to know the difference.
What about you? Do you have any wisdom on the topic of a parent’s dementia you can share? I’d love to hear all your tips. Because I’m pretty sure this won’t be the last time I write on this topic.
To read the first post in this series, click here.
To read the second post in this series, click here.