- Mom can’t bear to wear her lace nightgown.
- Dad wanders off in the middle of the night.
- Aunt Sue won’t use the wallpapered bathroom.
- Grandma doesn’t eat.
Why is Everything SO Hard?
1 – Alzheimer’s Is About Connections – and Short Circuits.
Connections determine how we experience the environment:
- Connections to and within the brain.
- Sensory connections linked to sight, hearing, taste, smell, touch and balance.
- Connections within and among the body’s systems.
- Connections to other people.
Alzheimer’s short-circuits connections, beginning with the body’s electrical panel: the brain. It tangles and frays the wiring of the central nervous system. It blows fuses in the digestive and neuromuscular systems. In time, it can disconnect a person from everyday routines and relationships.
As caregivers, we can’t stop or reverse short circuits. But we can “rewire” our relationship with a loved one, attempting to
- Understand how Alzheimer’s distorts his or her perception of the world,
- Realize how frightening that is,
- Comfort and protect against real and imagined threats,
- Prevent isolation and loneliness by preserving important social connections.
(For a closer look at how disconnections cause Alzheimer’s symptoms, check out the Alzheimer’s Association’s Brain Tour.)
2 – Alzheimer’s Is Not Just Memory Loss.
Alzheimer’s strikes the wrinkled outer layer of the brain – our “gray matter” – called the cortex. It spreads in a fairly predictable pattern.
First it strikes at areas that control learning and memory. With Alzheimer’s, the earliest symptom may be forgetting recent events. Not just the details, either. You don’t remember a conversation you had just 20 minutes ago.
Damage spreads to areas of the brain responsible for thinking, planning and problem solving, or “executive function.” A telltale symptom of Alzheimer’s is new trouble handling finances.
Symptoms continue intruding on daily life during Alzheimer’s’ middle stages. Plaques and tangles spread to affect
- Speech – the ability to speak and understand the spoken word, and
- A sense of where you are in relation to the environment – or where other objects are in relation to each other (visuospatial dysgnosia). That makes it challenging to
- Copy a drawing,
- Find your way home,
- Reach for and grasp a glass of water,
- Follow a moving object with your eyes without turning your head, or
- Figure out how to fit clothing over body parts while dressing.
Struggling to follow conversations and find the words to join in, many people living with Alzheimer’s avoid social gatherings. They might seem to change personalities. As reasoning and understanding the environment become more difficult, most need help with basic, daily activities. It’s no longer safe for them to live alone.
The brain’s cortex suffers increasing damage in later stages. Strange symptoms pop up. The room seems too hot or too cold. Imaginary strangers visit. Your loved one avoids the swirling pattern of the rug, fearful of “snakes.” Sometimes he or she has problems distinguishing food from the plate.
The symptoms of Alzheimer’s aren’t quite so bizarre if you know something about the brain’s cortex. Plaques and tangles reach areas that process messages from the sensory system. A broken “receiver” distorts what we see, hear, smell, taste and feel. A broken “speaker” makes it hard to explain what’s going on.
3 – Alzheimer’s Is Hard to Swallow.
Early symptoms of Alzheimer’s show at the tip of the tongue – with trouble finding the right word.
Eventually, damage to the brain affects the mouth’s other important functions: tasting and swallowing.
Everyone’s taste buds dull as we age. They don’t detect subtle flavors, so foods don’t taste the same. That’s why so many seniors prefer sugary dishes.
People with dementia also seem to have trouble identifying flavors. They may not recognize favorite foods on their plate. They might forget how those foods are supposed to taste.
Some drastically change food preferences – or lose interest in eating. A fading sense of smell makes meals less appealing. So does the struggle to raise food and drink to the lips. It may be hard to chew.
You might notice that your loved one drools and coughs or clears the throat. Is Dad plagued by hoarseness or shortness of breath? Does Mom complain that food sticks in her throat or chest – or is coming back up? He or she may be having trouble swallowing.
Swallowing problems are dangerous. They can
- Lead to poor nutrition and weight loss – aggravating confusion or weakness and increasing risk of infection.
- Cause choking.
- Result in aspiration pneumonia. (Caused by food or liquid entering the windpipe instead of the esophagus. This is the most common cause of death among people with Alzheimer’s disease.)
Make mealtime easier (and safer) by taking it easy:
- Allow plenty of time – an hour or more – and go slow.
- Avoid noise and distractions that make it difficult to concentrate on eating.
- Simplify the table setting. Serve just one or two foods at a time.
- Serve old favorites – but be flexible as food preferences change.
- Prepare foods that are easy to eat. Choose finger foods to avoid struggles with silverware.
- Gently remind your loved one to chew and swallow.
- Be certain he or she is sitting up straight, chin tucked slightly to assist swallowing.
- Be alert to signs of choking.
(For more advice about the dinner hour, visit the Alzheimer’s Association’s Caregiver Center.)
4 – Alzheimer’s Is Not Just in Your Head.
Long before Alzheimer’s’ forgetfulness appears, a person’s muscles start to weaken. Scientists aren’t sure how or why. They believe a single degenerative process attacks cognitive function AND muscle strength.
People with Alzheimer’s may shuffle or easily lose their balance. Eventually, they may not be able to walk. Some experience uncontrolled muscle movements, such as rigidity or spasms. Some find it difficult to sit up in a chair, hold up their heads or smile.
There are bowel and bladder issues, too. In the beginning, accidents and toileting problems are not caused directly by Alzheimer’s, but by
- Other medical conditions
- Medication side effects
- Mobility issues, or physical obstacles that slow the trip to the bathroom
- Difficulty removing clothing
- Confusion about where the toilet is, or how to use it
- Distraction – or depression and apathy
- Poor communication skills
- Embarrassment at needing help
Caregivers use continence management strategies to address these problems.
In the very late stages of Alzheimer’s, plaques and tangles spread to areas that control the bowel and bladder. The brain no longer relays signals that regulate continence. Caregivers then must rely heavily on the use of disposable garments.
5 – With Alzheimer’s, Life Is Best Lived in the Moment.
Our loved ones with Alzheimer’s increasingly live in the moment.
We grow frustrated and fearful as they lose the memories of a past we once shared, the abilities we once took for granted. We try to prod them back to their old selves.
- “Look at the picture and think hard. You can’t forget your best friend!”
- “I’ve answered that question a million times, Mom. This time, listen more carefully.”
- “I won’t help you make that sandwich. Practice doing it yourself. Use It or Lose It!”
Is this the best approach?
Alzheimer’s is a progressive disease. We can’t stop its forward march with correction or criticism.
We can, however, join our loved ones in their moment.
We do that with mindfulness – concentrating on the here and now, accepting circumstances for what they are, without judging them. We’re better caregivers when we respond to confusion, stress and pain by carefully focusing our resources – attention, compassion, patience and kindness – on the person and situation in front of us.
Mindfulness makes the moment safe and comforting if we
- See difficult behavior as a response to dementia’s symptoms.
- Remain calm, refusing to take things personally.
- Look past our loved ones’ actions to their feelings.
- Keep everything simple, quiet and relaxed (explanations, routines, activities, dress, etc.)
- Acknowledge small successes and simple pleasures.
- Join our loved ones in their current reality – even if today they seem to be living in the distant past.
Most importantly, we can forget about judging abilities or behaviors and value our loved ones for being who they are – cherished members of our family.
Of course, there’s much more to learn about the stages and symptoms of Alzheimer’s. With luck, and continued research, there will be more every day.
Many online resources can keep you abreast of current findings and practices. (That includes many of the links above, to this article’s sources.) We especially recommend the National Institute on Aging’s Education and Referral Center for information that’s thorough, concise and easy to understand.
Check back for our next “Big Picture” post, with its summary info graphic: “5 Things You Need to Know About Alzheimer’s.”