Living With Alzheimer’s: Like Living With a Child?

“Living with someone with dementia is like living with a child.” It’s a common perception. But is it true?

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Children are mimics. They follow adults’ examples (especially the ones you’d rather they didn’t see) and challenge parents to find ways to communicate with them that will encourage them to develop good life skills and protect them from harm. We try to teach them to be aware of their surroundings, to honor the sensibilities of others, to follow the order of law that governs our society, to question and explore. In other words, we strive to raise self-confident, skilled, empathic, honorable, engaged citizens. It’s a tall order. It takes every skill parents possess, plus the skills of the dozens of other ‘teachers’ who influence children along the way.

Unless a child is developmentally challenged, they develop on a continuum. They start out requiring total care and supervision. As they grow, they learn to do things for themselves, to think for themselves, their circle widens, and they may surpass their teachers in skills acquired.

Some believe that as Alzheimer’s disease progresses, the patient reverts to a child-like state and then a baby-like state. Physically, they do require more and more care. But Alzheimer’s patients are not children or babies. They have spent a lifetime acquiring skills and opinions, and have grown into their own ways of doing things. They have been valued members of society. They cannot be solaced by being picked up and carried, or made to laugh by blowing a raspberry on their bellies. (Okay, that one might be up for discussion).

And while children are busy gaining knowledge, learning how to plan, and to imagine possibilities and work toward a result by taking those possibilities into account, Alzheimer’s patients are losing their vast store of knowledge, and the ability to imagine. Like a fire that starts in one corner of a room and burns through a house wiping out a lifetime’s belongings, the storage rooms in Alzheimer’s patients’ brains are destroyed. Some belongings lost in a fire can be replaced, some things cannot. Alzheimer’s is like the things that can’t. When the parts of the brain that govern various skills and bodily functions are destroyed, in an Alzheimer’s patient, those things are gone forever.

What that means in part is that no matter how many times one tries to explain something to an Alzheimer’s patient, the patient will not be able to recall or relearn how to perform a task they have forgotten how to do, or remember what’s been said to them. Nor will they be able to learn new tasks. However, they will often know there is something they should be able to do, but can’t, which leads to incredible frustration. And they will remember how what’s said to them made them feel, which can lead to sadness on their part and regret on the caregiver’s part.

Those things are often hard for a caregiver to understand, and to accept. It’s not stubbornness, a lack of will, or stupidity on the patient’s part that is causing problems. It’s a dying brain.

This is a disease in which the goal posts move. Things can change from month to month, or even hour to hour. Frustration is part of the package. There will be times caregivers as well as patients need to allow ourselves to vent and to cry. But we need to find ways to do this that don’t cause more pain.

In the midst of a difficult situation, taking deep breaths when the volume is rising, stepping away to collect one’s thoughts, can help. Later, it’s important to take time to assess how things have changed, and how one can deal with the changes. Keeping a diary can help. Hearing or reading other people’s stories can also provide valuable insights.

And remember to laugh.

The other night Bill got up to go to the bathroom. For some reason, he put his pillow on the floor. When he returned and got into bed, he looked bewildered.

“Lose something?” I asked.

“Yeah. I think so.” He continued to look around.

“Lie down,” I said.

He did.

“What are you missing?”

His head swivelled. He spied my pillow. “A pillow.” He sat up and started to hunt in his covers for it. Eventually he spotted it on the floor.

“You know you’re fodder for a book someday,” I said, grinning.

He laughed. “Yeah.” His laugh is deep and rolls out of him. It’s infectious.

“Would you be upset if I did write about us?” I asked.


“Good. Because I already have.”

We both laughed. “Consider yourself warned…again.” (I clear it with him every time I write something). “And sleep on your side, not your back.”

“Did you say sleep on my back?”

“No, don’t sleep on your back. Sleep on your side, so you don’t snore.”

“Okay,” he said, rolling onto his side.

Twenty seconds after I snapped out the light he flopped onto his back.

man snoring, woman beside him

I considered how lucky I am. He’s still breathing after all.





Living With Alzheimer’s, Finding Help

Finding Help And Overcoming Fear

 A few days ago, a woman I was acquainted with years ago knocked on my door. She said she had read a piece in the newspaper I wrote about the tremendous help the Adult Care Society program has been for me and my husband, who has Alzheimer’s Disease. The woman, who I’ll call Jane, said she was having some problems with memory and other things, but she didn’t know how or where to get help. We talked, and she told me her symptoms. She said she had not been able to tell anyone because she was embarrassed, and afraid, and no one understood.

Jane’s story is not unique. Nor is her fear. It isn’t easy to tell anyone you are afraid you might have dementia. But the symptoms cannot be treated if they are hidden, and they cannot stay hidden. Continue reading

Living with Alzheimer’s: Little Things That Make Us Laugh

Dec. 17, 2014   Bedtime 11:30 p.m.

I stayed at the computer checking emails one last time for the day, replying to whatever needed a response. Bill got into his pyjamas, had a pee, brushed his teeth and climbed into bed. When I arrived in the bedroom, I picked up his socks and underwear and put them in the hamper; rearranged the rest of his strewn clothing on his side of the chest at the bottom of the bed so he’d know to put them back on in the morning. I brushed my teeth, got into my p.j.s and attempted to roll down my side of the bed covers. The sheet was stuck. He’d forgotten to pull it down again.  Continue reading

Living With Alzheimer’s: Assessing Patients’ Pain

The following is a restructuring of information that may help caregivers living with loved ones with Alzheimer’s recognize the symptoms of pain in an Alzheimer’s patient who is suffering from pain but can no longer describe it, and help them. A link to the online site the information is taken from is provided at the end of this post.


Pain in older adults is very often undertreated, and it may be especially so in older adults with severe dementia.

While Alzheimer’s disease itself does not cause pain, patients may suffer pain from other sources. These sources may include improperly fitting clothes, stomach cramps, constipation, undiscovered sprains or broken bones, arthritis, pressure sores and bruises. Poor hygiene may also lead to pain; for example, sore gums may result from improper oral (teeth/mouth) care.

Changes in a patient’s ability to communicate verbally present special challenges in treating pain, and unrelieved pain can have serious consequences, including declines in physical function and diminished appetite. The Pain Assessment in Advanced Dementia (PAINAD) scale has been designed to assess pain in this population by looking at five specific indicators: breathing, vocalization, facial expression, body language, and consolability. A trained nurse or other health care worker can use the scale in less than five minutes of observation. For an online video showing nurses using the PAINAD scale and other pain-assessment tools, go to

The PAINAD scale is a behavior-observation tool developed for use in patients whose dementia is so advanced that they can’t verbally communicate the fact that they’re in pain. Designed for easy use, it requires a brief training-and-observation period.

* breathing: labored breathing or hyperventilating

* vocalization: moaning or crying

* facial expression: frowning or grimacing

* body language: clenching fists or pushing away caregivers

* consolability: an inability to be comforted

Each item is scored on a scale of 0 to 2. When scores from the five indicators are totaled, the patient’s score can range from 0 (no pain) to 10 (severe pain). The intention was to create a 0-to-10 pain-rating scale for people with advanced dementia that relies on observation and is similar to the commonly used 0-to-10 pain-rating scale that relies on the patient’s own report of pain.


If pain is present: caregivers are advised to evaluate and modify their approach to care. All caregivers are asked to consider the following questions.

* Is the patient handled gently?

* Is s/he given warnings before s/he’s touched or moved?

* Is s/he kept covered and warm while care is given?

* Are you attending to behavioral cues and not rushing through activities?

* Do you stop care activities when s/he resists them?

The creators of the PAINAD scale have given no specific guidance on the treatment of pain according to each score. The soundness of using a 0-to-10 behavioral scale to rate the severity of pain has not been established.5 At the most general level, a score of 1 would indicate mild pain and a score of 10 would indicate severe pain. Mild pain (a total score of 1 or 2) warrants comfort measures (such nonpharmacologic approaches as repositioning or distraction, or a mild analgesic such as acetaminophen); moderate-to-severe pain (a total score of 5 to 10) warrants stronger analgesia, such as an opioid, as well as comfort measures.

CHALLENGES that may arise

It may be difficult to determine whether a particular behavior is related to pain or to something else, such as anxiety or being too cold. Some behaviors may be inconsistent or very subtle; detecting subtle changes may require observing the patient at different times over the course of several days. Often, more pain-related behaviors are seen during movements involved in bathing, getting out of bed, or dressing.

When working with people with advanced dementia, caregivers should remember that it’s impossible to determine whether a person is in pain through behavior alone.9 Thus, the pain indicators in the PAINAD scale (or any other behavioral pain measure) should not be considered definitive. Rather, such a scale should be used within a broader, more comprehensive pain-assessment protocol. This would include trying to obtain the patient’s report of pain, investigating possible causes of pain (such as injury or illness), and possibly starting an analgesic trial.4 It’s also important to talk with family members to ascertain behaviors, or changes in behaviors, that indicated pain when the patient was younger or more cognitively intact.

ONLINE RESOURCES: For more information on the Pain Assessment in Advanced Dementia scale and other geriatric assessment tools and best practices, go to clinical Web site of the Hartford Institute for Geriatric Nursing, New York University College of Nursing, and the Nurses Improving Care for Healthsystem Elders (NICHE) program. The site presents authoritative clinical products, resources, and continuing education opportunities that support individual nurses and practice settings.

Go to and click on the How to Try This link to access all articles and videos in this series.

Living With Alzheimer’s: The Question of Appropriate Therapies

Professionals agree there is currently no treatment that will cure Alzheimer’s because its cause is not known. During the course of our journey, doctors have given us the option of prescription drugs to “possibly help” treat the disease. Many others have suggested remedies, and various testimonials and ads promoting alternative treatments have popped up. It can be overwhelming, and we’ve spent our fair share of time doing what I call, chasing rainbows. Coconut oil, vitamins, and other such things did nothing for Bill.

When he was diagnosed, our question to doctors was: are there any drugs that can slow it down? There are some that, “Might, or might not, have any effect,” the gerontologist said. We chose to try them.

“Aricept,” I was told, “won’t slow it down, but it will let him use everything that he has left.” It did seem to help Bill focus on tasks better than he had been able to after the disease hit. However, it also caused him to have nightmares, terrible muscle cramps, a continually runny nose, and other side effects. When we reported these, his prescription was changed to Ebixa (Memantine).

As his condition continued its downhill course, I couldn’t know whether the drug was really doing anything to help, but he continued to take it because we wouldn’t be able to tell if it was helping unless he stopped taking it. After almost 8 years, I decided to stop it (without his knowledge so the results would be in the realm of ‘placebo’ trials), to try and determine what, if any, effect it was having. Within a few weeks, I noticed Bill was more confused when he woke up. He needed directions to the ensuite bathroom, more help with dressing. Other things he had done himself, or with minimal supervision, now required more involvement from me. He also followed me around the house more closely, as if he was afraid I would disappear if he didn’t keep me in sight. His search for words to describe his needs, or an event, also became more pronounced. So, after three months off it, I put Ebixa back on his daily menu. And after a week or so noticed his descriptive powers improve, his thoughts become clearer than they were, and he could do more things independently again. That said, I don’t know whether it’s the drug that made the difference.

Alzheimer’s is an up and down, winding path, not a straight line, and at various stages in the disease patients do have periods of more confusion, followed by or interspersed with periods of greater cohesion. No one knows why. Added to that are expectations. It’s possible my interactions with him changed in ways I didn’t realize during his time off the drug, and that could have affected him in ways I don’t understand. Or it could have affected my perceptions of what was actually going on. When it comes to ‘scientific testing’, tests like the one I conducted are highly flawed, and I don’t recommend it.

What is known is that everyone’s experience with taking prescription drugs to help cope with the disease is different, and what does seem to work for everyone when it comes to maintaining, or increasing, health are the things we’ve all heard about most of our lives—good food, regular exercise, and social involvement. Laughter also helps. In other words, the same things every human requires to establish and maintain a full and healthy life will also help Alzheimer’s patients (and caregivers).

Fortunately, Bill always was, and still is, a social guy who enjoys a range of activities. And when he loses the ability to do something he likes to do, we work together to find another activity he can do. It does get harder as the disease progresses, but he’s always game to try, and often things work out better than I expect they will. Such as, deciding to take advantage of the Adult Daycare Program, which he now attends one day a week.

I was nervous about signing him up for this, believing that he still had significantly more function than many who attend the program, and that he would not enjoy the activities there. My concerns were immediately dispelled. He fully appreciates the warm and friendly staff, finds people there he can talk to, and though every activity isn’t his cup of tea, he enjoys many others. He often comes home with a tale about something or other they’ve done that he got a special kick out of.

In addition, I am mindful every human needs to feel they are making a valuable contribution to life in order to feel they are living a full life. So, I keep giving Bill tasks to do, even if I have to later finish or redo them. (More often, I find it more beneficial for both of us to just accept the job he does, whatever the level of competence he does it with). As well, I try to recognize changes that are occurring, and create new, helpful strategies for dealing with them.

Living With Alzheimer’s — Like Living With a Child?

“It’s like living with a child.” It’s a common perception when discussion centers around living with someone with Alzheimer’s, and a statement I’ve heard often.

Not really.

Children challenge parents to find ways to communicate with them that will encourage them to develop life skills, to advise them against things that will harm them, and to explore. We try to teach them to be aware of their surroundings, to honor the sensibilities of others, to follow the order of law that governs our society and to question those things that do not fit with a just society. In other words, we try to raise self-confident, skilled, empathic, honorable, engaged citizens. It’s a tall order and it takes every skill parents possess, plus the skills of the dozens of other ‘teachers’ children will be influenced by during their growing up years.

The key here is that, unless they are developmentally challenged, children develop on a continuum. They start out requiring total care and supervision. But as they grow, they learn. They get better at things, they become more independent. They learn to think for themselves. And the circle of those who influence their growth and learning widens as they grow.

Some might think Alzheimer’s works in reverse. That as the patient’s brain slowly dies (Alzheimer’s is Brain Failure) they revert back to a child-like state of requiring supervision, and then a baby-like state of requiring total care and supervision. But Alzheimer’s patients are neither small children, or babies. They are adults, who have lived fully developed lives. They have opinions, and their own ways of doing things. They cannot be solaced by being picked up and carried, or made laugh by blowing a raspberry on their bellies.

If one instructs a child on how to do something, eventually they will be able to perform that task without help. They may even get better at doing a task than the adult who is teaching them is. They store knowledge and can retrieve it when they need it. They learn how to figure things out, how to plan, how to imagine possibilities and work toward a result by taking those possibilities into account.

Eventually, Alzheimer’s patients lose all of that. Eventually, they will not be able to retrieve the vast knowledge they’ve stored because, like a fire that wipes out a lifetime’s belongings, the storage rooms are destroyed. Worse than losing the stored knowledge is that, unlike lost belongings, it cannot be replaced, because the Alzheimer’s patient won’t be able to figure things out, plan or imagine possibilities. So no matter how carefully one tries to explain a task to them, or how many times the instructions are repeated, they will not be able to ‘relearn’ how to perform that task. And that’s the main way an adult Alzheimer’s patient is different from a child.

The deterioration of a patient’s abilities is often very hard for a caregiver to understand, and to accept.

I sometimes find myself repeating instructions to Bill over and over with increasing volume. It might be instructions regarding a task he was able to do just last month, or even two days ago. Meantime, my frustration (and his) has risen, and along with the frustration the harmful ‘juices’ that fuel things like acid indigestion and stress. So I need to keep reminding myself, it’s not his fault. He has no control over what’s happening to him. And to accept that things have changed again. But I also need to take care of myself.

Caregivers need to understand frustration is part of the package, and there will be times we lose patience with the whole thing. We need to allow ourselves to vent and to cry. But we need to find ways to do this that don’t hurt the person we’re caring for, or us. In the midst of a developing stressful situation, taking deep breaths when the volume is rising, stepping away to collect my thoughts, are things that help me.

Later, it’s important that if I find myself feeling resentful, overly frustrated, or depressed, I take time to assess how things have changed, and how I can deal with the changes. Maybe I need to hire someone to do something I can’t, or don’t want to, do myself. Maybe I need to find new ways for Bill and I to have a good time and relieve some of the boredom or sense of restriction that can easily set in. Maybe I need to find a way to have more time for myself. And when I run out of ideas, maybe I need to talk to someone else, who might have a fresh perspective on how I can make things work.

Alzheimer’s and Social Networking

“I’d like to go golfing,” Bill said. The sun was shining, the grass is green and all kinds of flowers are in full bloom, including our spectacular, blood-red, Camelia Roses. Who wouldn’t want to be outside doing something you enjoyed while you soak all that up?  Trouble was, his Alzheimer’s has progressed to where he cannot find his way around the course without a buddy to guide him. He has a buddy who golfs with him, but he lives in New Jersey from September to May. And I can’t golf. So, Bill had to be content with just going outside and weeding flower beds.

When we were young parents and involved in working, raising kids and taking care of our myriad critters, we didn’t think about networking. Our work lives and home lives were quite separate. Outside work-related social events, we didn’t socialize with our work mates. We kept in touch with high school and university friends via letters (the old-fashioned, hand-written kind), cards, and the occasional phone call. If we happened to travel back to our old stomping grounds, we visited with those who were still there, but that was rare. Even rarer, some decided to travel our way during their vacations, and stopped with us for a day or two. New friends tended to be people whose kids were involved in the same activities ours were and, as we moved to new jobs in new locations, we eventually lost touch with them. We still keep in touch with school-days friends, but none of them has ever lived where we lived. Continue reading

Alzheimer’s, The Challenges of Finding Fun

As Alzheimer’s progresses, it gets harder to find fun.  One activity after another, Bill’s world shrinks according to what he (and I) can cope with doing. Last summer, he paddled with the Brave Hearts Dragon Boat Team. He loved being out on the water, and participating with the people on the team. He has always been strong, and has paddled canoes off and on over the years since he was a child. Paddling in unison with anywhere from nine to nineteen other people is a different skill, though, and took some learning. Fortunately, the team coach, Calvin, was always patient and encouraging. The first competitive event of the year was ‘Race the River’ right here in Campbell River. And that was when a whole new set of challenges appeared.

While I watched the event, it became clear to me Bill needed very strong support to participate. He needed someone to help him suit up, and to get to the start line for each and every race. Once when the team was called to the start, he headed off to look for a washroom and then couldn’t find his way back to them. He was rounded up, the team got there in time, and everyone enjoyed the day, but it was challenging. It let me know he would not be able to travel with them to other venues to compete unless I could go with him, and we would have to drive separately because there was no room on the bus for extra passengers. So, he continued to practice on Tuesday and Thursday nights, but he did not go to race meets, and that had other consequences. Sometimes it meant the Brave Hearts didn’t have enough paddlers to compete, and even when they did the dynamics in the boat were changed because he wasn’t in his spot. That presented challenges for them. Continue reading

Alzheimer’s, The Necessity of Education for Caregivers

“Do this,” our instructor, Teepa Snow, said, putting her hands on either side of her head. It was a workshop designed for professional caregivers—those working with dementia patients in facilities. But when I heard it was being offered I called the organizers to ask for permission to attend because I felt like I needed to know as much as the professionals know about looking after someone with dementia, and I believe in education. Permission was given to me without hesitation.

Teepa Snow is one of the top educators and advocates for positive care of people with dementia in the United States. For over 30 years, she has worked as a non-traditional occupational therapist in a wide variety of settings. She has provided direct care, consultation, and leadership in numerous settings and organizations, and has developed a best care practice philosophy reflective of her life-long journey. Continue reading

Chapter 6, Guest Blog

The following story was written by my daughter, Stephanie. It describes one of her first encounters with palliative care in her then-job of Home and Community Care Nurse. Many of the things she learned during her time with this family are the same things caregivers learn in caring for their own loved ones as they travel the Alzheimer’s path. It’s a beautiful story, poignant and sad, and also filled with strength and joy. It’s a true story, but the names have been changed to protect the privacy of those involved.

Dying and Death

It was spring and the flowers were blooming along the walkway. The flagstone path was a gentle curve, with bright green moss between the stones. The heritage home exterior with its columned, wrap-around porch looked grand and was carefully tended with fresh blue and white paint. Together the grounds and house were picturesque and beautiful.

Inside the house, an elderly woman who was a wife and mother was in the process of dying. I am a nurse who travels to homes to support individuals and their families through the process of dying and death.

I rang the bell and was told to, “Come in.” In the hall, I took off my shoes, then walked into the large parlour where my client, Sheila, was on a lounge-turned-bed. She was a small, frail bird, dressed in a light cotton gown. Her long, grey hair was strewn across the pillows, her head propped at an awkward angle. She did not look comfortable. She was grey in colour and her face was slightly tense even though her eyes were closed. Her grown son was sitting across from her on an old Queen Anne’s couch, bent over a laptop computer set on a table in front of the couch. Someone was in the back of the house, doing dishes I assumed. I could hear water running and the clink of dishes in a sink. Continue reading