The Decline: Eyes Closed to Her World

Mom has been closing her eyes to her world a lot lately. From what I read, it is further evidence that she is entering the last stage of this disease. Mom can’t hear real well, so I think that it is also her retreat – a safe and quiet space – closed off from the sights and sounds of the world around her which grows less familiar each and every day.

Mom shutting her eyes to her world when she is talking to me.

I believe this may be mom’s final winter of life trapped in a body and mind afflicted with Alzheimer’s. This stage morphs wildly from good to bad daily – sometimes several times a day. Mom will take a huge downward step one day, then surprisingly recover the next day – sometimes all within a day.

One day she’ll see me arrive and clap her hands together in joy while announcing to anyone within earshot, “Oh, good! My mother is here!” and the next day (sometimes that same afternoon) there will be a vacant look and not even a glimmer of recognition or joy in her eyes.

One day she’ll be sitting at a table with two of her friends enjoying her lunch in the dining room (and maybe sneaking things off of a nearby plate of a table mate too), and then the next several days she will only eat her meals from her bedside. On those days, she usually eats with her eyes closed. These steps downward are more frequent these days, and times of recovery are increasingly brief.

This may sound crazy. My heart hurts at seeing this happen to my mom, but is strangely comforted by the fact that it is happening too.

Sadness mingled with joy: that is what I feel. Sadness in knowing that she is going through so much pain and confusion, yet I know full well there are harder days ahead. Joy in knowing that her long journey is coming to an end here on earth and that the beautiful and long-awaited day is drawing near when she opens her eyes in Heaven.

The Decline: Getting 'Home' Before Dark

The indignities of the later stages of Alzheimer’s are many, and it is hard to watch my mother wrestle with them. As I sit with her on her rough days, I pray for her and ask God to “take her gently Home” in His perfect time. I confess praying too that God would somehow spare me from this oftentimes familial disease.

A few days ago, Momma was having a very rough day. It broke my heart to see her in such pain and mental anguish. As I sat with her and tried to be of comfort, I thought about something my sweet mother-in-law used to pray. Quoting from a poem that was dear to her heart, her prayer was, “God, in your time, please let me get home before dark.”

By God’s providence, I came upon the prayerful poem that Shirley had typed out and prayed by faith for herself. Today, I make this my prayer as well.

Let Me Get Home by Dark

by J. Robertson McQuilkin

It’s sundown, Lord.
The shadows of my life stretch back
into the dimness of the years long spent.
I fear not death, for that grim foe betrays himself at last,
thrusting me forever into life:
Life with you, unsoiled and free.
But I do fear.
I fear the Dark Spectre may come too soon –
or do I mean, too late?
That I should end before I finish or
finish, but not well.
That I should stain your honor, shame your name,
grieve your loving heart.
Few, they tell me, finish well…
Lord, let me get home before dark.The darkness of a spirit
grown mean and small, fruit shriveled on the vine,
bitter to the taste of my companions,
burden to be borne by those brave few who love me still.
No, Lord. Let the fruit grow lush and sweet,
A joy to all who taste:
Spirit-sign of God at work,
stronger, fuller, brighter at the end.
Lord let me get home before dark.The darkness of tattered gifts,
rust-locked, half-spent or ill-spent.
A life that once was used of God
now set aside.
Grief for glories gone or
Fretting for a task God never gave.
Mourning in the hollow chambers of memory.
Gazing on the faded banners of victories long gone.
Cannot I run well unto the end?
Lord, let me get home before dark.The outer me decays –
I do not fret or ask reprieve.
The ebbing strength but weans me from mother earth
and grows me up for heaven.
I do not cling to shadows cast by immortality.
I do not patch the scaffold lent to build the real, eternal me.
I do not clutch about me my cocoon,
vainly struggling to hold hostage
a free spirit pressing to be born.But will I reach the gate
in lingering pain, body distorted, grotesque?
Or will it be a mind
wandering untethered among light phantasies or
grim terrors?
Of your grace, Father, I humbly ask…
Let me get home before dark.

The Decline: When God's timing seems slow

I’m a little behind in my posts concerning my journey alongside momma and her traveling companion: Alzheimer’s. I wrote this a few weeks ago, so am posting today in hopes of helping interested friends and family catch up on how things are going.

I guess my sweet momma has been not-so-sweet in the evenings lately. When I arrived for a recent visit, two of her nurses were glad to see me, as they were discussing “what to do about Charlotte.” They shared with me that, around 8 pm, anxiety sets in and momma becomes a different person – extremely hard to handle, won’t sleep, wanders into other residents’ rooms, won’t stay seated in her wheelchair, gets down on the floor and plays with wires on her alarm mat, talks incessantly and loudly, and demands attention if she feels you’re not paying attention to her.

Cries of “Help me! Help me!” are common now. When help comes, she doesn’t have enough language to be able to articulate what she needs. The staff do their best to guess what she needs, but she sometimes aggressively resists those attempts to help her. She really needs help with all matters related to personal care and getting dressed, but often gets angry and combative when staff try to assist.

I have noticed hints of similar behavior when I am there for lunch. Staff will tell me she refused care in the morning and preferred to sleep over coming out for breakfast. I am usually able to get her up for lunch (we sometimes have to make it a double-team effort), and she’ll sometimes show up in her pajamas, but she will usually eat a hearty lunch (the caregivers put extra food on her plate knowing she won’t ask for more and that it may be her only meal that day).

Some abilities are pretty much gone for good; others seem intermittently absent. On any given day, she may not have a clue as to how to eat what is on her plate. By the following day, she may be eating with relish, including snitching from the plate of a nearby resident who wasn’t interested in their food. One particularly difficult day, mom ate her lunch, but needed coaching for each item on her plate. Some days there was no way she was going to take a shower; then there was the recent rare day when she was super cooperative and blessed her shower attendant with profuse thanks for helping her.

The staff has been busy trying to find the best routine for her. Sometimes it’s tweaking which medications she takes, other times it’s adjusting the timing of medications to see if that will help. The two-fold goal is to keep her as pain-free as possible and help her relax and get some sleep in the evenings without making her too groggy in the mornings.

As hard as all this is, I need my readers to know that I am concerned, but not anxious about this. In fact, my heart is overwhelmingly thankful for the good care she receives from some pretty amazing caregivers. God is at work, even in the hard times.

Not long ago, I spent time in the old testament book of Habakkuk in preparation for teaching from that book in Sunday School. Now, I know I’ve read that book before whenever I came upon it in a “Through the Bible in a year” reading plan checklist. I have probably breezed through its three chapters in this way a handful of times, but I don’t think I’ve ever spent much time pondering it,; and I don’t think I have ever taught from it. This time I listened to it via my Bible app. Next, I read it. Then I listened to it again as I followed the words in my own copy of Scriptures – I always tend to pick up on more of the nuances of a passage when I use more than one sense. Finally, I read what Ray C. Stedman had to say about it in my favorite Bible commentary, Adventuring Through the Bible.

Habakkuk had some complaints for God. I found it comforting to realize that God listened to those complaints, and He answered. Habakkuk shared how hard it was for him to fathom why God allowed such bad things to happen in the world around him; it seemed that God did not care, that He was idly watching all the evil happening, that He was without mercy. The Lord didn’t chide Habakkuk for being a complainer; instead, He answered his complaints by assuring Habakkuk that He was working in the background on things which Habakkuk could not see or understand.

I identified with Habakkuk in his wondering what God is up to and wasn’t afraid to ask the “why” question. I look at what my mother is going through and I sometimes feel as though God is not answering my cries on her behalf…or her own cries for release. While it is not the same context or circumstance, I am reminded that Habakkuk’s God is my God too – and He works today in much the same way as He did when these words were penned: “If it seems slow, wait for it; it will surely come: it will not delay.”

Photo credit: https://biblia.com/bible/esv/Hab2.3

I find myself in deep admiration of the prophet Habakkuk. He asks the questions I wish I was bold enough to ask. He then takes a good look at the perplexing things of life and compares them with what he knows about God, then applies his knowledge of those truths to the problem.

This process of walking alongside Momma on this final leg of her sojourn toward her heavenly home only seems slow to me. But I am confident that God is at work. He is “doing something in the background” of life. Based on what I already know of God, I know that whatever it is, it is good and His timing is perfect.

Making Memories

BeeHive is the name of the wonderful assisted living memory care where my mom lives. On Thursday evening BeeHive certainly lived up to its name with the buzz of excitement as families and friends of the residents and staff gathered at the hive for a Christmas party.

The gathering had all the makings of beautiful affair with great food, fantastic music, a little dancing, and opportunities to meet and greet the loved ones of the 16 residents I have come to love.

Momma couldn’t hear the fantastic music because she is really hard of hearing, but she had her fill of snacks and pleasant conversations. I think she and Dolly enjoyed themselves. They retired early, as crowds aren’t their thing. As is the way with Alzheimer’s, Momma won’t remember a thing about the party in the morning.

Sometimes there is only joy in the moment for our loved one, and memories we make together are ours alone to cherish and remember.

[Please watch this video if you’d like to learn more about BeeHive Homes of Oregon, WI.]

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.

 

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