Saying 'Goodbye'

How do you say ‘goodbye’ to a loved one with Alzheimer’s? I’m not talking about the final goodbye at this moment, but the daily goodbyes when you have to leave your loved one.

I usually spend a few hours with my mom each day. She really doesn’t like to see me leave and, much like it may have been when I was a toddler and she left me with a babysitter, she can get a bit sulky and fussy. I’m discovering there is an art to making those daily goodbyes a little less stressful.

The number one thing I have learned is never say, “I have to go home now.” Saying the word “home” is an involuntary trigger for her to feel unsettled, as she constantly wants to “go home” too.

I have discovered that it’s really important to give her a reassuring hug and tell her that I love her, but sometimes that’s not enough. Here are a few other tactics which help make daily goodbyes less stressful for my mom:

  • I don’t mention how long I’m going to be gone. Instead of “I’ll see you tomorrow,” I say, “I’ll see you a little later.” Even if I’m going to be gone for a few days, it’s really important to offer her the hope that I will be back soon.
  • If she asks where I’m going, I sometimes say, “I’m going to work, but I’ll be back later.” While I don’t really go to a job, I am not straying far from the truth because I really DO need to go home and get some laundry and housework done.
  • If at all possible, I try to leave when she is resting comfortably in her bed. She may look for her family when she wakes up, but she will be looking for me expectantly, rather than feeling like I have abandoned her.
  • Momma’s comfort item is her dolly. I try to make sure she has it in her lap and is occupied with “Dolly” when I slip away.
  • Snacks help. I sometimes leave a cookie on mom’s windowsill. Even if she sees me walking to my car (her window faces the parking lot), the next thing she will see is her special treat and then all is well.
  • Loving and gentle touches help her relax. You know how it feels when someone plays with your hair, or runs a brush through it? It’s an amazing feeling. I try to be there when mom finishes her twice weekly shower, as she is usually not a particularly willing participant in that activity. The minute she sees me after she is wheeled out of the shower room, she looks SO relieved. I take those post-shower moments to blow-dry her hair and gently brush it.

Aphasia: Word Salad

Momma still likes to exercise her own independence when moving about. It is her right to do so, but it does sometimes result in a fall. Momma had a “doozy” of a fall a few months ago. No one is exactly sure what happened; they just heard her calling “help me” and found her lying on the floor on her side, trying her best to right herself. Thankfully, with a little help, she was able to get back into bed without emergency intervention. In the days following, she was sore and showing signs of having bruised or fractured her tailbone and ribs. I opted not to have her x-rayed, as the results might give us a diagnosis, but would not change the treatment plan. At this stage in her illness, Momma’s plan is for comfort measures only.

Momma (and Dolly) sleep quite a lot these days.

Mom was in a considerable amount of pain following the incident. Hospice recommended we start giving her some stronger medication to help manage the discomfort and quiet her anxiousness. A low dose of morphine was started, but wasn’t particularly effective; plus, mom seemed to have an allergic reaction. Once switched to hydromorphone, she was very sleepy, but pain was much better managed. Before long, Momma was back to tooling around in her wheelchair visiting with the other residents and “borrowing” seemingly abandoned baby-dolls and stuffed animals to care for in her room. That was the “upside” of administering narcotics.

The “downside” is that narcotic medications cause constipation. With an injured tailbone, constipation can become a formidable and painful foe.

Another “downside” is that the medication also makes her more confused – so much so that her speech comes out in an incoherent, rambling, jumble of meaningless words and random thoughts. This confused speech is a condition known in the world of dementia as aphasia and is often referred to as “word salad.” Usually a symptom first noticed in earlier stages of the disease, aphasia makes finding the right word very difficult. It grows progressively worse as the disease marches on, complicating oral and written communication, making interpreting someone else’s words in a conversation or reading a sign frustratingly difficult.

The most frustrating “downside” is non-stop chatter. Usually fairly quiet and non-conversational at the dinner table, the medication caused Momma to talk non-stop. She barely came up for air between one string of jumbled words and another. Mom’s usual table mates at lunch grew very weary of her nonsensical babbling, with one of them growing impatient enough to take a frustrated swipe at mom then slam her fist down on the table demanding, “Please! Someone just make her be quiet!” Thankfully, the impatient neighbor (not the one pictured below) missed in her effort to lash out at her too-gabby neighbor, and I was able to move mom out of arm’s reach and help her focus on eating her lunch.

It makes me happy that mom still enjoys eating and can (most days) accomplish it without help.

Narcotic medications were not necessary to bring on the word salad of aphasia, as it was already rearing its ugly head along with other symptoms which signaled the progression of Alzheimer’s. The medication just tossed the salad, so to speak. If you would like to learn more about aphasia (and 3 other A’s: amnesia, apraxia and agnosia), I highly recommend reading the article “The 4 A’s of Alzheimer’s Disease.

 

Alzheimer’s – Sensitive Topics

Sometimes I wrestle with whether or not I should write about something related to caring for a loved one with dementia. Some things just feel too private, too personal. In writing about an especially sensitive topic, I wonder if I will dishonor my mother in some way. I’ve wrestled earnestly with today’s topic for these reasons and more. However, as I speak with others who are caring for a loved one suffering from memory loss, many of them are dealing with the same thing. So, for the sake of those who need to know they’re not alone, here’s the topic:

Swearing.

As Mom’s battle with Alzheimer’s dementia intensifies, so does the bad language and harshness of the tongue. Those who help provide her care each day assure me she is still incredibly sweet – they love, love, LOVE her to pieces. They tell me that when her tongue gets sharp, she almost immediately apologizes and layers on the salve of kindness.

Before Alzheimer’s, Momma would never swear at someone. In a moment of frustration, she may think a curse word in response to a frustrating situation, but she would never say it out loud. She would quickly reign in her frustration and replace it with graciousness.

With Alzheimer’s, the filter on the tongue is missing. My sweet mother’s ability to reign in her emotions and frustrations is broken. With arms flailing, out come the curse words when her caregiver tries (sometimes in vain) to help her shower or get dressed. She’ll even blurt out curse words at me, the one who provides daily love and care for her.

It hurts my heart to hear her swear and say ugly, mean-spirited things.

Before Alzheimer’s Momma’s tongue held kind words, not critical and harsh ones. Her tongue reflected her actions and her love for her Savior; she was gracious and benevolent with both. She’d never blurt out what she thinks. She’d just smile and keep her thoughts to herself.

I know it’s the result of this disease. But, I also see very clearly that the curse of the sinful nature we are all born with is uncovered and revealed by this relentless and wicked disease. I know in my heart how much my mother loves Jesus. And I know how immersed she was in the Scriptures and what a prayer warrior she was before this disease stripped her mind of the ability to recall the things she has learned.

I always hoped that she would defy the odds of this disease and never forget the Scriptures she has learned. But now, it seems, she cannot understand what she is reading and tells me that the Bible I keep on her nightstand isn’t hers, even though it is filled with her own handwritten notes, prayers and thoughts.

I always hoped that music and the great hymns of the faith would be a help and stronghold for her in her later years. But she is usually quite ambivalent to it – although her poor hearing might play a role in that.

I always hoped she wouldn’t forget that she is a child of the King. On this last unfulfilled hope – she has forgotten, but God has not. She is His child and He knows it. He remembers her and will never forget – never forsake.

Someday, when all is made new, music will be restored and she will sing a new song in heaven. Best of all, she will meet the One she read about in Scriptures and has trusted by faith – Jesus – the living Word.

Sharing is Hard!

Each day after lunch, Mom and I usually sit quietly together in her room watching all the goings-on outside of her window. There is so much to see: cars and trucks as they drive in and out, people who come and go, the construction happening next door and (best of all) the birds at the feeders just a few feet away.

Today sweet Carol stopped by for a little after lunch visit. Without a word, Carol took me by the hand, urging me to rise from my chair and take a walk with her. I have taken many such walks with Carol, so gave Momma a quick hug and told her I’d be right back. Carol gave my hand another insistent tug and off we strolled hand-in-hand. As I left the room Momma suddenly addressed our friend Carol in an obviously jealous tone of voice blurting, “Hey! That’s MY Momma!”

Here’s a photo of a sweeter moment for Momma and her friend Carol.

Photo credit: Kathleen Zelinski