“Now faith is the substance of things hoped for, the evidence of things not seen.”  -Hebrews 11:1

Dementia caregiving is a difficult journey. The days can be long. The situations can be confusing. The outcomes can be less than desired. How do we continue this journey with any hope of success?

Dementia is the inability to think clearly that affects the activities of daily living. First, let’s look at what the “activities of daily living” (often referred to as ADLs) means. We all are different. We may work in the same office, but we probably do different tasks. We may live in the same house, but we have different roles. No two people are identical in their activities of daily living. To simplify things, the medical community has broken down these activities into five categories. You can remember them by the acronym BEAD. But wait… BEAD only has four letters and there are five categories.  That is correct. The fifth letter is “T”— and it messes up the acronym, and it messes up life!

  • B – BATHING – Failure to bathe regularly or the inability to recall the processes involved in bathing.
  • E – EATING – Forgetting to eat or no longer recognizing food causes the individual to cease eating, or the individual may forget they just ate and, therefore, request more food.
  • A – AMBULATING – Walking turns to shuffling or “skiing,” and falls become more likely. Individuals begin to use furniture to allow them to move about. They walk from one piece of furniture to another.
  • D – DRESSING – The inability to choose seasonally appropriate or occasion appropriate clothing. It is not uncommon to seen an individual wear multiple layers of clothing. They might choose shorts and t-shirt to wear to Sunday morning worship.
  • T – TOILETING – Bowel and bladder incontinence becomes a problem. Individuals have difficulty remembering where the bathroom is located and how to recognize their need to void.

We all participate in these activities of daily living. Whether we bathe in the shower or the bathtub, eat grits in the southern states, walk with a cane or a walker, dress preppy or hippy, have indoor plumbing or prefer “nature”, we all experience bathing, eating, ambulating, dressing and toileting.

When we can no longer think clearly, and at least two of these five activities of daily living become affected, the doctor will diagnose the individual with dementia.

Dementia can be reversible, and it is wonderful to experience our loved one’s return to life without cognitive issues.  However, the majority of individuals are caregiving for a loved one or client with an irreversible dementia. The inability to participate in those activities of daily living makes the caregiving experience more difficult.

The hallmark symptom of dementia is memory loss. Memories are lost in the reverse order in which they were gained. Recognizing your loved ones abilities and inabilities will make the journey more rewarding. However, what happens when you just can’t help your loved one understand the life situation, respond to the question, or participate in a way that is desired? How do you keep pushing forward? Where does that hope come from?

Scriptures teach us that faith is hope. Hope is a word misused in our modern language.  We hope we will win the lottery. We hope we will be skinny one day. We hope we won’t get Alzheimer’s. Hope seems to be something over which we have absolutely no control.

In Scripture, however, hope is more of a certainty. As Christians, our hope is placed in Christ Jesus, and in him alone can we find the comfort that comes with that hope. That hope produces faith. As Hebrews reminds us, “Now faith is the substance of things hoped for, the evidence of things not seen”  (Hebrews 11:1). Without hope,  there is no faith. The question then is “in whom have we placed our hope?”

Let’s look at the words of the old hymn My Hope Is Built On Nothing Less (written by Edward Mote):

My hope is built on nothing less
Than Jesus’ blood and righteousness;
I dare not trust the sweetest frame,
But wholly lean on Jesus’ name.
On Christ, the solid Rock, I stand;
All other ground is sinking sand.

The last line says, “all other ground is sinking sand.” Dementia causes us to experience “sinking sand” in various ways each day. Whether we can’t understand our loved one’s needs, are tired of answering the same question repeatedly, or are facing anger from them or anger within ourselves, the ground begins to sink. It is only through that hope we have in Christ Jesus that we can successfully continue the journey.

The song goes on to say:

When darkness veils His lovely face,
I rest on His unchanging grace;
In every high and stormy gale
My anchor holds within the veil.
On Christ, the solid Rock, I stand;
All other ground is sinking sand.

My anchor holds. What beautiful words of comfort. Dementia causes life to feel like a roller coaster ride that never ends. Life might feel like a horror movie that repeats itself. It might feel like the depths of darkness. But the Christian’s anchor holds. That anchor is Christ–the Solid Rock.

Traveling the journey of dementia without knowledge of what to except, without a support system, and without a good medical team is a recipe for failure. However, traveling the journey of dementia with all these things in place, and capping them off with a strong hope and faith in the one true source, Jesus Christ, will make the bumps less bumpy and the turns less treacherous.

His oath, His covenant, and blood
Support me in the whelming flood;
When every earthly prop gives way,
He then is all my Hope and Stay.
On Christ, the solid Rock, I stand;
All other ground is sinking sand.

Dementia caregiving is difficult, but just like life, it is made better when we are trusting in the Solid Rock.