Living With Alzheimer’s, Continuing the Journey

No matter what I think I know about Alzheimer’s Disease, changes in Bill’s status and abilities can still blindside me. And when emotion fills me up to where thoughtful reaction/action is all but snuffed out, strategies go out the window.

The usual response when someone asks how we’re doing is, “Fine, thanks.” There are days I’m not ‘fine’. But I can do something about my state of mind. Imagine what it must be like when you can’t.

More and more often, in a fit of frustration and hopelessness, Bill grabs his head, curls up, and with tears sliding down his cheeks, cries, “I can’t do anything, I don’t know anything, I don’t know where I am or what I’m doing. I can’t…I can’t…do this! Every single time it breaks my heart.

A few weeks ago, I handed him his socks. On that day he looked at the socks, then at me, then at the socks. “What is this?” he said. I’ve been helping him dress for a couple of years, but that was a first. I had to pause and breathe to keep my response calm. “Socks,” I replied. “Sit there.” Then I slid them onto his feet one at a time, and waited for him to pull them up.

A few days ago, he repeated a refrain he’s uttered often in the past year or so. “I want to go home.” I asked him where he thought he was.  He said, “I don’t know.” I asked him if we lived together. He said, “No, we don’t live together.” I asked him if we were married. He said, “No.” I asked him who he thought I was. He said, “A friend.” That was another first for us, and I didn’t know how to respond. Eventually, I said, “I’m your wife. We do live together, here. And we’re also friends.” I don’t know if he took it in.

No matter how many workshops I attend, no matter how much research I do, or how many times I’ve heard others report similar milestones in their journeys looking after someone they love, nothing blunts the pain and grief I feel when the milestones hit us. And nothing blunts the pain and grief Bill feels when total awareness of his state hits him again.

Imagine living with that knowledge for 14 years, and not being able to do a single thing to change it. For those of us who aren’t living it, I don’t think it’s imaginable. The fact that he continues to live, to walk, to talk and to laugh makes him the bravest person I know.

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.

“Nope.”

“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: The Caregivers’ Dilemma

On the first Thursday of every month, I attend the Alzheimer’s Support Group for Caregivers that meets in the Sunshine Wellness Centre at the Campbell River Hospital from 7:00-8:30 p.m. It is an open group. Anyone dealing with someone with dementia is welcome to attend. Participants share information about coping strategies that help them, supports that are available, or simply relay what’s happening in their particular journeys. Or they may choose to just listen.

Over the years, dozens of caregivers have come and gone from the group. The common denominator for all is that we want to help those in our care live the fullest life possible. To aid us in achieving that, research has shown there are some important factors to keep in mind.

•Facilitating relationships: Having someone to talk to and maintaining relationships was rated the #1 factor in improving a patient’s quality of life in a research project entitled “My Name Is Not Dementia,” conducted by the Alzheimer’s society in the U.K.

•Providing meaningful activities—past interests can meld into new hobbies.

Bill loved carving figures from wood. When he lost the ability to ‘see’ 3-dimensional figures, he retained his love of design and colour. I signed him up for a beginner watercolour class at the C.R. Art Gallery, taught by Caren Heine. The work shown is a result of that class. Now he explores his innate creativity doing sidewalk art alongside our youngest granddaughter. Competitions between them to see who can draw the wildest shapes brings hours of joy and laughter.

•Physical exercise improves physical and cognitive health. Anything that keeps them moving is good.

•Relaxing diet restrictions. Decreasing restrictions can improve quality of life and improve nutrition. Maybe that dish of ice cream isn’t so bad after all.

•Touch. We all need to be touched. Massage, hugs, pats on the shoulder all count. Pets often help fill this need.

•An unhurried approach. The ability to slow down in providing care takes a conscious effort, especially when there is an agenda. But it is always worth it.

•A sense of humour. Laughter is as appreciated by dementia patients as it is by anyone, and is clinically proven to be good medicine.

When our youngest granddaughter asked Bill how old he was, he teased, “I’m not sure.” She replied, “Look in your underwear, Grandpa. Mine says I’m four to six.”

•Encourage communication. Being listened to, and understood, are important for quality of life.

Over the years, I’ve learned another common denominator is that while caregivers recognize the importance of facilitating the best life possible for those in our care, we often neglect to give ourselves the same consideration. It is a well-documented problem. In a workshop I attended by educator, Teepa Snow, the following stats were given: 5 of 10 caregivers will develop clinical depression; 1of 5 will seek treatment; 50% will develop dementia from depression. This is caregiver burnout big time. So what causes it, and how might it be avoided?

•Changing roles. It can be hard to separate long-time roles as a spouse, child, or friend, from new responsibilities as a caregiver. Struggling to sort it out can lead to stress and confusion.

Education is paramount to reducing the stress of handling this new role. Books such as Still Alice and Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias: 101 Stories of Caregiving, Coping, and Compassion; websites that offer in-depth information, such as the Alzheimer Society of B.C. at http://www.alzheimer.ca/en/bc.; workshops and support groups, can help.

•Unrealistic expectations. Alzheimer’s is a progressive disease with no cure, and expectations that a caregiver should be able to help the patient get better will lead to frustration.

Sharing one’s feelings with someone trusted (family, friend or professional); support groups, and grief counselling can help. In Campbell River, workshops on dealing with grief and grief counselling are offered by the Hospice Society. Go to http://www.crhospice.org/ or call 250- 286 – 1121 for more information.

•Lack of control. It can be difficult to manage one’s own life while taking care of another. A few key elements are:

Sorting out the financial end of things—obtaining Power of Attorney, a Representation Agreement, and possible disability tax reductions are important aspects. Talk to an accountant.

Maintaining one’s own social contacts, interests, and physical well-being are crucial. Take time to MAKE TIME FOR YOURSELF. This might involve talking to family members about sharing the responsibilities and/or talking to one’s Case Manager about accessing more supports.

•Unreasonable demands. Caregivers, families, or even the person being cared for, might be placing more responsibility on a caregiver’s shoulders than he or she can handle alone.

Talk to the Case Manager about respite and/or increased home care, discover free services such as the new Better At Home program whose trained volunteers can provide companionship and transportation assistance (250-287-2421 or email Brenda.wagman@crfs.ca); attend support groups, talk to a counsellor, talk to your doctor, talk to family members.

Caregivers taking care of themselves is not a luxury. It’s a necessity. Only when a caregiver is strong and prepared can they provide good care for others.

 

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 — Tears

Bill and I are in year 13 of living with Alzheimer’s Disease. Not for the first time, last night I lay in bed, in the dark, with my body turned away from Bill, crying. Trying not to make any noise.

I was crying tears of frustration.

How, I asked the firmament, do I find my own space, follow my own pursuits, live my own dreams while I’m caught in the ever-increasing needs of my love, who is unable to share in any of it or to pursue anything on his own without direct supervision or help?

I was crying tears of great sadness. Continue reading

On Writing: A. Putting it on paper B. What rate should you charge

Recently, the Federation of B.C. Writers asked members to respond to the following two questions.

A. Do you write on a computer? Typewriter? Using pen and paper? Why do you prefer the mode of writing you use? What are the problems you experience when you try to write any other way?

AND

B. “I wonder if the federation offers any resources that help freelancers get an idea of price recommendations for various services,” wrote the member. “There’s a lot of confusing information out there and aside from the going per word rate for local publications it’s hard to know how to charge for things like white papers, newsletter and annual reports etc. Do you have any idea where I might find that sort of guidance?”  Continue reading

On Writing-Why Write Fiction At All?

In fiction, we create characters, places, and events, or rearrange real-life things to fit a pattern we want to create, to explore an idea we want to explore, or to tell a story we think needs to be told.

In life, certain people, places and events grab and hold our imagination. Some events change the course of history. Some people bring about change that affects the whole human race. Life is full of memorable, horrifying and inspiring people and events that teach us things and stories that need to be told.

It’s all already there. So what makes writing fiction a relevant thing to pursue? 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

On Writing – Constructive Feedback

The following is a guest post by Scribes instructor, Annette Yourk. To see more from Annette, visit The Scribes, Comprehensive Writing Services at www.thescribes.ca

Peer Review and Feedback – What’s it all about?

Writing powerful well-crafted stories is a life’s work. Like any demanding job with high standards, sometimes we need some help from the side. Guided peer review can provide that helping hand. However, trepidation around receiving perceived criticism can prevent writers from participating in peer review.

Sandra Doran, Tim Murray, Lee Ann Weigold, Wendy Burke review each other's writing.

Some students cannot let go of their original words. Others never feel ready:
“One more rewrite of chapter three…” “The ending still needs work…”
Writer trepidation is sometimes rooted in a past critique experience that was painful, embarrassing and damaging to the writer’s confidence. When peer review and feedback is unguided people can and do get hurt. Grizzled veterans of the process might say, “Suck it up, buttercup. If you wanna to be a writer you gotta take the flack.”
But “flack” isn’t a necessary ingredient in solid, honest, constructive feedback. Continue reading

On Writing: An Irresistible Query Letter

Every year at tax time, we face an uncomfortable question. No, not, “If I’m a presenter, are nose-hair trimmers a legitimate business expense?” I’m talking about, “When can I write off everything I’ve spent learning to be a writer?”

And the answer, of course, is: “When your writing turns from a hobby into a business.” (Answer not certified by CPA.)

In the interests of helping you get there sooner, this blog is devoted to your handiest sales tool: the query letter.  Continue reading