DEALING WITH DEMENTIA

What I Wish We’d Done at the First Sign Mom Was Losing Her Memory

Nothing makes this road easy but some practical repairs ease the bumps

We first noticed it during Covid lockdowns.

“Is Mom repeating stories when you talk to her?”

“Yup, sometimes the exact same thing multiple times in one phone call.”

Not a good sign, but it was lockdown. Not much happened to talk about.

Then there was Tim’s funeral. Mom got lost returning to her hotel room to get a sweater. We found her wandering around outside the hotel. Concerning but anyone would be disoriented after burying their son.

We all agreed there was a potential problem percolating and began work on getting Mom’s memory tested but there was so much more we could have done to make our lives and, more importantly, Mom’s, better in the difficult years to come.

I recognize that not everyone has a healthy relationship with their parent. Sometimes you can’t or shouldn’t try to be a caregiver in any way. My experience won’t be yours but I share my story in hopes of providing some encouragement and practical advice from one woman’s perspective.

Prepare to help with finances

Just because an older person gets a little repetitive doesn’t mean you should take over their credit cards and cash. The Mayo Clinic suggests “Respect independence as often as is safe.” As long as your parent is able to manage their own money they should. And even when you begin helping your role needs to be honoring their wishes and well-being not safeguarding your inheritance.

Still, a time will come when someone else has to step in and make sure the bills get paid. Prepare now by gathering the information you’ll need.

I took over her finances after my mother was the victim of fraud. I sorted out a complicated mess without having identifying numbers for most of her bills or accounts. My job was particularly challenging since I lived in another country but I have a brother who was local and he wasn’t able to find the information in her house either.

Get legal help

If your parent is facing dementia you’ll want a power of attorney at some point. This will give you the legal power to act on their behalf. Before I had POA, I was spending hours on the phone in three-way calls with Mom and various banks trying to sort out the fraud. This frustrated Mom and agitation made her cognitive decline worse.

POA is not a magic wand. Each institution will want a copy filed and many will try to make you fill out and notarize their own special form. Every state has different guidelines which adds to the confusion.

A POA is potentially very powerful. If you are the senior choose your POA very, very carefully. If you have been given POA, remember that you’re legally obligated to follow the person’s wishes and best interests rather than your own.

A good elder care attorney is worth every penny if you have any pennies to pay. Not only can they help you with setting up a POA, writing a will, or protecting assets, but they’ve seen the many ways families screw up and can help you avoid common pitfalls.

Begin decluttering

A common problem in dementia patients is misplacing items. Reducing clutter makes it easier to find what’s really needed for both patient and caregiver.

Start the process when the person is still able to be highly involved. You might not recognize which items are particularly meaningful and which can be tossed. A sudden hospitalization could leave you having to do the work yourself without much or any input from your parent. This is hard for both sides.

Gather the Grandkids

I organized a big family gathering this spring. Let’s get everyone together while Mom can still enjoy it, I said. I was too late. Mom was there but overwhelmed by the crowd.

“I don’t understand why your sister brought all those friends with her,” Mom said to me. The “friends” were my adult nieces, Mom’s grandkids.

A few years ago, nothing would have made Mom happier than having a bunch of her children and grandchildren in the same place at the same time. Now she does best with one on one visits.

Don’t put off either the big gatherings or the small ones. Meaningful time is running out.

Sort out sibling responsibilities

If you are an only child, you face a heavy burden. Find whatever support networks you can.

But working with siblings isn’t always easy either. It’s often hard for siblings to agree on care plans and horror stories abound. Do whatever possible to be proactive in protecting your sibling relationships.

The classic scenario is all of the day-to-day burden falling on one sibling, often the eldest daughter or whoever lives closest to the parent, while the distant siblings offer up “helpful” suggestions.

Add dysfunctional family patterns and heightened emotional states, and the explosions are imminent.

The more you can be open and respectful of your siblings the better. Each person needs to decide for themselves what they can and can’t contribute in time, money, and involvement. No one gets to choose for anyone else.

I’m finding the experience of working together with my siblings is deepening our love and connection. This is not always the case so be grateful when it occurs and intentional about trying to plan for cooperation, patience, and understanding.

Record family stories

Now is the time to get the family classics written, recorded, or filmed. You don’t need to make a production of this. Asking questions about childhood is a win-win when talking to someone with memory loss. Long-term memories are easier to access than short term and it gives you both a source of connection.

If you care about factual family history, note that as dementia increases even long-term memory can get more and more jumbled. My brother and I were shocked the other day at a family dinner when Mom started telling us how hard it was when her sister was diagnosed with type one diabetes at age three.

Dan and I knew that Mom wasn’t even born yet when her sister was three. Even more importantly, this sister doesn’t have type one diabetes. We recognized the story though. My dad’s younger sister got diabetes at age three. Mom had taken Dad’s story and transplanted it into her own family.

We were able to set the record straight with the grandkids later but the earlier you start clarifying family history the more likely you are to get it right.

Establish helpful habits

Think carefully now about what habits might serve you well in the future. Once the memory loss is advanced new patterns will be hard to establish.

For example, my sister-in-law gave her mother an Apple watch. This was a stroke of absolute genius. It monitors heart rate, gives location, and makes emergency calls.

She had purchased an emergency alert button but never remembered to wear it. Because she was used to putting on a watch every morning, the Apple watch was easier as well as more functional.

The key is she started wearing it while she was still able to manage the various functions and establish the pattern of charging it regularly. A time will come when she’ll no longer enjoy using it to read her texts but hopefully, the habit of having it on her wrist will persist.

Start providing rides or encouraging your parent to use Uber, taxis, and public transit before they need to stop driving. Anything to soften and ease the inevitable blow of giving up the car is good.

Monitor the medical

Is your parent regularly seeing the doctor and faithfully taking all prescribed medications? If your parent is willing, go with them to doctor’s appointments.

Much like helping with finances, this can be a tough area for parents to allow you in. You must be worthy of their trust. No adult likes to be scolded or treated like a child. Tread carefully and recognize you don’t have a right to manage your parent’s health unless they have given you a medical power of attorney. Even with a POA you still need to honor their wishes as much as possible.

Trust but verify

This area was hard for me and my siblings. Mom has always been a rock of honesty and responsibility. If she says she’s taking her medications why would we doubt?

Mom wasn’t lying to us. Even now she always tells the truth as she is experiencing it in the moment. Unfortunately, her perception isn’t reliable.

Asking questions isn’t the answer. Your parent might assure you their finances are fine, their health excellent, and their memory in tip-top shape. Maybe they believe it or maybe they’re deluding themselves. Memory loss is terrifying. Who wouldn’t want to ignore the evidence for as long as possible?

Poke around when you visit. If your parent has a pill pack lying about look to see if the proper days are empty and full. Glance in the fridge to see if it has spoiled food. Are there bills laying about indicating past due or missed payments?

Be kind to yourself and to your parent

When a parent is declining, especially mentally, there is always more you could and maybe even should do. You might be blocked by your parent’s stubbornness or your own job, family, and responsibilities.

It’s easy to wallow in self-pity or self-recrimination. If only I had, if only I could. Dementia is cruel and consuming. Fight to keep it from destroying you all.

Often memory loss has been going on unnoticed until something happens to blow the lid off. It’s easy to look back and say, “How did I miss this? How did things get this bad?”

For years my brother visited our Mom at 7:00 am every weekday. They drank a cup of coffee, read and discussed a Psalm, then prayed together. By 7:15 am, Paul was on his way to work and Mom started her busy day as well. Even during Covid, Paul came with his travel mug and sat on Mom’s porch while she was safely inside.

All of us siblings took comfort in this ritual. We had regular eyes on Mom. Thank God for Paul.

When dealing with fraud and a hospitalization blew the lid off of mom’s cognitive decline we all second-guessed ourselves. How did we miss it? Why weren’t we more proactive?

Turns out discussing a Psalm with a woman who has spent eight decades steeped in scripture isn’t a great memory test. This is blindingly obvious in retrospect.

Still, those daily doses of memory-building and comfort were priceless for Mom and Paul. Even after a diagnosis, everything doesn’t need to be about protecting and guiding your parent. Find time for the sweet spots of sharing.

When I was growing up I was fascinated by my mother’s childhood which was so different than my own. I’d beg her to sit and tell me stories, but she never had time. All I could get were little snippets here and there as we rushed about daily life in a large family.

Guess who has all the time in the world for reminiscing these days? I can and do mourn the loss of the strong, competent woman who raised me but I also cherish the hours sitting with a cup of tea asking questions about her immigrant parents, life on the farm, and education in a one-room schoolhouse.

While there is life, there is the possibility of meaningful connection. If you’re seeing memory loss in your parent, act now so more of your time together is spent sipping tea and less pulling your hair out in frustration.

I’m a middle-aged woman navigating a memory-muddled mom and recently grown and gone children. Click to find all my stories about aging parents, and about empty nesting, and aging.