“People should know that this is a physical disease. I’m no less smart than I ever was—I just have trouble accessing information. Sometimes I get words mixed up. Sometimes I forget. I’m no less a person because of Alzheimer disease. When I was diagnosed, I told everybody I knew that I had the disease. Why? If you know about it, you can do something about it.” Fred West
How do you take a difficult diagnosis and stay positive? Just ask Fred and Ann West of Halifax. You see, Fred was told he had Alzheimer disease in 2000. Immediately, this high-energy, take-action couple began their quest for answers and information. Today, Fred has become the first Alzheimer patient to be on the Board of the Alzheimer Society chapter in Nova Scotia, and Ann also serves as a committee member. When asked if their work with the society has been of personal benefit, Fred chimes in, “absolutely, our time with the society has been a terrific learning experience and a place to seek knowledge and support.”

How times have changed

Still in the early stages, Fred is planning and finding out as much as possible for the future—notably how long they will be able to live in their current home and what condominium or other housing options will be practical. For now, Fred is still extremely healthy and active. (He’s still able to drive.) He continues to be amazed at how much treatment and medications (he’s helped by Exelon) have improved since his father-in-law had the disease 30 years ago.

Family ties

Fred and Ann’s most important support system is a closely knit extended family who share a meal together at least once a week and discuss issues regularly and openly. Both Fred and Ann are actively involved in their grandchildren’s lives (they have three grandchildren, ages 15, 15, and 17) which is a great source of strength and enjoyment for them.

Watchful care

Ann stresses the value of family involvement and awareness. She cites the example of her mother who, just prior to her own diagnosis of the disease, showed minor telltale signs. “My mother was confused. She wrote incorrect cheques to the phone company, and took the same watch or record player in twice for the same repair mistakenly. While these are small things, we noticed because we were visiting regularly and were able to take action to help.”

A look ahead

What’s next for Fred and Ann? Taking things each day as they come, they’ve promised themselves that they’ll continue to enjoy every minute they have with each other and those they love. And, of course, they’ll stay involved in their own, small way in helping to find answers to the Alzheimer puzzle.
I always knew I would care for my mother in her senior years. She would be moving into my home. Moving day arrived and, much to my surprise, it did not go smoothly. My happiness at finally being able to look after her was dashed. The move plans had been wonderful, but on moving day, mother somehow did not understand what was happening, and she became very irritable and upset. What I did not realize at the time was that she had brought along an uninvited guest: Alzheimer disease.

Never the same

My days would never be the same. I was face-to-face with something I did not understand. Why was she asking me the same questions over and over? Why did she keep asking me to call our dad, who had been dead for 15 years? I watched her fold and refold clothes out of the closet. One day she sat in her favourite chair waiting for someone to take her home to Ireland. I kept trying to get through to her. Each day became another day of trial and error. One day, mother fell in my garden. Still ignorant of her disease, I allowed her to put off going to the hospital until several days later. The doctor I met with at the hospital told me she had a broken pelvis and explained why she had not been able to walk. I then met with a hospital assessment team, who sensed mother had more than physical health concerns. Their diagnosis confirmed her illness: Alzheimer disease.

Words of encouragement

Thankfully, someone introduced me to the local Alzheimer Society. If there are angels on this earth, they are the people at the Alzheimer Society. Whenever I called, however I was feeling (crying or shouting, angry or calm), they listened. They offered words of encouragement and taught me about this disease. It has been five years since my mother passed on. Ever since her death, I have volunteered for the Alzheimer Society, learning all I could about this devastating disease in order to give back to someone else what I was so unconditionally given.
In September 2002, I came home from work with a tremor in my right hand. While I frequently had had a minor shake in my hands through most of my adult life and developed the shakes from drinking some kinds of coffee, this tremor was different.

Lots of questions

Many thoughts went through my mind, so I went to see my family physician, Dr. Tina Squires. She ordered a series of tests, including a CAT scan of my head. Everything checked out okay.

Carrying on with life

During the next two months, the tremor was clearly not going away. I eventually saw Dr. Alan Goodridge, a neurologist at the Movement Disorder Clinic in St. John’s. After a thorough examination, he confirmed that I had Parkinson’s disease.

Moving ahead

During the next few months, I tried different medications. Each impacted the tremor differently, and each had unwanted side effects. With my current medication, there seems to be some management of the tremor. And although there’s still a sleepiness that comes after taking the medication, I’m able to deal with it.

A new path

Through my first year with Parkinson’s, I’ve learned new things about myself. Parkinson’s disease has created a new path in my life; one that, I’m sure, will be just as interesting and challenging as earlier ones.

Adapted with permission from the Summer 2004 issue of Parkinson Post.
I am in the process of arranging respite care for my father, Donald, with his trust officer. Respite care three of four times a year is important to me so I can get away without worrying.

Dad is quite comfortable in his own home, despite a number of medical problems, but I don’t feel good about leaving for more than a day without making some extra plans. In the past, I’ve asked my daughter to stay at his home with his paid caregiver for the weekend. But now that she’s accepted a promotion and is moving to Calgary, there’s no one but me.

Thankfully, dad is okay with the concept of respite and is treating it as a little vacation for himself. We’ve picked a nice care facility about 10 minutes from his home. While I’m away, he’ll stay there with professional care around the clock.

He’ll also have the chance to catch up with a number of his friends who now live there on a permanent basis. I’m looking forward to the break, and I’ve promised my husband that I’ll only call in every second day to check up on dad.

The home’s administrator jokingly told me about another family who found that their mom was too busy to chat with them because she was having so much fun. I hope it’ll be the same for dad.

Hilda, 91-years-old, can’t see as well as she used to, but nothing got by her, until she stumbled at home. During a routine follow-up, her doctor found that Hilda had diabetes. Hilda was hospitalized to help stabilize her blood sugar. She was used to being active and looking after herself; now for a whole week, she was cooped up in a hospital bed with nothing to do. And there was so much information to learn on her new condition and so many changes to make. The situation was overwhelming.

A daughter’s help

Fortunately, her daughter Mary helped to get things on track. She found a home health care service in the community that would help Hilda make a safe transition home. And Hilda and Mary created a step-by-step dietary plan, which covered the foods she should eat as well as how much and how often, and an exercise plan, which included walking, stretching and strength-training. The home care nurse taught Hilda how to give herself insulin and arranged for the pharmacist to preload the insulin and deliver the syringes to the house.

Home care to the rescue

Hilda has decided to continue to use the home care service that supervised her return home. Twice each week, she is visited by a personal support worker who ensures that the refrigerator is stocked, that Hilda keeps track of medical appointments, that she showers safely, and that she is generally “on track.” The nurse supervisor visits regularly, reviews the blood sugar record, and stays in touch by telephone.
Best of all, Hilda’s daughter’s visits are no longer spent on keeping mom safe and tidy. Now, they can use that time to talk, shop, or enjoy a walk around the neighbourhood.