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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: 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: 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

On Writing: Putting it on Paper; What Rate To 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. 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, newsletters and annual reports etc. Does the fed offer any resources that help freelancers get an idea of price recommendations for various services?

painting cover for Kittens and Stars, sm

For illustrations, I prefer watercolour, or watercolour and ink. Watercolour gives me the range of colours and edges I want, and sometimes happy surprises when I use wet in wet. Ink gives me precise drawings when those are called for, such as in this simple drawing of a blue heron.

Heron

Sometimes I write text by hand. Things such as poetry, a short descriptive piece, blocking out elements such as character traits or possible story lines. I also tend to write by hand when I’m doing research, because it seems to help me retain the material better. However, when I start to write a story or a novel, I park myself at the computer. The ease of typing, correcting typos, and editing blocks of text allows my thoughts to flow and lets me get much more done than when I write by hand, not to mention it saves me from hand cramps. A welcome side effect of using the computer is that I don’t smudge the work the way I do in handwriting. I’m left-handed, and in North America we write from left to right. Words get smudged and smeared as my hand and arm move across the paper. No matter the angle I might turn the page at, the copy is never clean.

To set rates for contracted work, one really needs a handle on:

Click for preview

• exactly what work is required

•how long the task will take

•what expenses will be incurred to complete it

•what do your competitors charge for the same work

•what is your time worth to you

•what is it worth to the client

•how experienced are you at doing this particular job

For instance: a prospective client approaches you to do a brochure for their business. This will entail graphics, text, set-up/design, printing, folding and delivering the finished brochures. Rates will differ if you are required to supply the graphics, design and text, or just some of these elements. They’ll differ again depending on whether you’re also contracting to print, fold, cut and deliver the finished product, and whether you choose and supply the paper for said printing, or the client does.

If you’ve years of experience under your belt, chances are you will be much faster at it, and there likely won’t be the ‘practice’ failures that sometimes accompany the learning curve that occurs when one is doing a job for the first time. Experience should equal a much faster turn-over time with a quality result. ‘Should’ but it isn’t always the case (something prospective clients might want to keep in mind). Checking the rates and results (quality of product, satisfaction of customers) of those who offer the same services is beneficial for both a potential service provider, and potential customers.