Alzheimer’s has been described as an enduring form of living bereavement. The caregiver can only watch as the personality and intellect of their loved one disintegrates.

At first Joseph Yard’s family attributed his occasional forgetfulness to ageing. After all, it’s widely accepted that as we age, our memory tend to fade, and we’re sometimes not as “sharp” as

we were in our younger days. But as time passed and Joseph started to misplace important things such as cheques, and would forget where he was driving to, his wife of 41 years, Brenda, knew something was terribly wrong.

As she recalls the early stages of what was eventually diagnosed as Alzheimer’s disease, Brenda describes some of the events of the past six years which have ultimately robbed her and her daughter of their husband and father.

There were many incidents which back then seemed amusing, but she as since learned that they were early indications that all was not well – seemingly insignificant signs so easy to miss or dismiss, like when Joseph would wear non-matching socks, or when there would be a noticeable change in his energy levels.

As the disease progressed, Joseph increasingly lost the ability to manage everyday tasks such as feeding and caring for himself, or being able to have a coherent conversation. Eventually, he would be confused about where he was and would fail to recognise family and friends.

In addition to the changes in his cognitive abilities, Joseph suffered with several physical problems which, coupled with the symptoms of Alzheimer’s, made caring for him more and more challenging. As she was still working, Brenda found it increasingly difficult to care for Joseph on her own. It got to the point where leaving Joseph alone in the house was not an option, as he was prone to wander off, a typical symptom of the disease.

Eventually Brenda realised she had little choice but to stop working in order to care for her husband full time. At this point he was still mobile, but required round the clock supervision to ensure his safety and the safety of others.

Alzheimer’s patients are known to unwittingly put themselves and others at risk by doing things such as leaving the stove on, or turning on the gas without lighting the burners. Taking this and many other such concerns into consideration, Brenda Yard eventually came to the realisation that if for no other reason than to ensure her beloved husband’s safety and well being, he needed the

constant supervision that only a residential nursing home could provide.

She explains the difficult process of coming to such a heartbreaking decision. “It was very stressful to care for him, but I had to do it, I felt it was my calling,” she recalls. “But in the end, I became trapped. I couldn’t go out, even if he needed something, I couldn’t leave him alone. It was an impossible situation.”

Once a robust man who used to “attend to the affairs of many” Joseph, now 76 years old, is living full-time in a nursing home, no longer able to do anything for himself. In an expression of true love, Brenda faithfully visits her husband almost every day, caring for him and keeping him

company, even if he doesn’t recognise her. For Brenda, one of the hardest aspects of Alzheimer’s is watching her loved one deteriorate. “This is a man I have known and loved for over 40 years. A sensible man, a man who travelled extensively, and suddenly he is an invalid, he can’t

communicate. It’s very distressing,” she admits quietly.

It is estimated that 3,500 Barbadians suffer with Alzheimer’s, a disease that affects the cells of the brain, altering its chemistry. It is classified as one of the dementias and the early symptoms often mimic those of the ageing process, prompting family members to conclude that their loved one is simply growing old.

Psychiatrist Dr. Sharon Harvey points out that Alzheimer’s is the most common of the dementias, but is difficult to diagnose. There is no known cause or cure, but medication can slow the progress of the disease which, while not fatal in itself, can lead to various life-threatening secondary complications.

Although there is no known cause, age is a major contributing factor, with most diagnosed falling into the fifty-plus age group, with the majority over age 65. There is also a genetic link, but no other real factors have been associated with developing Alzheimer’s.

Patients often display initial short-term memory loss and mild confusion and, as the disease progresses, sufferers become increasingly forgetful, disoriented, and develop physical

symptoms. As the brain deteriorates, patients lose the ability to speak, walk and control bodily functions, eventually becoming bed-ridden and uncommunicative.

Before they reach that stage, many family members report that their loved ones’ personalities have drastically changed; a once happy person may experience mood swings and become sad, or aggressive. Those who once had a razor sharp memory tend to forget the present, but may remember things from their past. People suffering from Alzheimer’s can become repetitive, forgetting that they have said the same thing a few minutes before. ¨They gradually lose their

cognitive abilities, no longer able to tell the time or understand the concept of money and numbers. Most agonising of all, they will eventually fail to recognise those around them, which

can be extremely distressing to caregivers, family and friends.

Dr. Harvey says it is particularly traumatic for family and friends to watch someone they know and love transform into someone unrecognisable and often caregivers too need intervention and support to cope, as the physical and mental toll on them can be unbearable.

Pamelia Brereton, President of the Barbados Chapter of the Alzheimer’s Association, points out that Alzheimer’s is not just a challenge for the immediate family of the patient, but the

challenge extends to include the nurses, psychiatrists, occupational, speech and language therapists, social workers, doctors and dentists, all of whom play a major role in helping to keep the Alzheimer’s patient as healthy as possible.

Brereton, who has watched first-hand as members of her own family have suffered with the disease, adds, “caring isn’t just feeding, bathing and toileting, it requires creativity, it’s like dealing with a child; one minute they can be fine, the next sad.”

To illustrate what she means, she recalls an incident with her father. She was on her way home when she noticed him hurriedly walking away from their house in the opposite direction. When she caught up with him and asked where he was going, he replied that he was going to meet his brother because they had to get to school. Pamelia realised how confused her father was and to quickly get the situation under control, she said “I just saw your brother sitting on the step

waiting for you at home. Let’s go back there and see him.”

This is an example of the kind of quick thinking that is often required by carers of those suffering from Alzheimer’s. It was Pamelia’s way of calmly getting her father to go back home without agitating him or upsetting herself.

Explaining that caring for Alzheimer’s patients often requires a sense of humour as well as extraordinary patience, she says: “They can make you laugh and cry within the space of a

few minutes.”

If you are planning to visit a relative or friend suffering from Alzheimer’s you should always check with their primary caregiver whether it is a good time. As the disease progresses, you should not expect too much. Some days can be better (or worse) than others. If the person seems confused when you arrive, say who you are, “Hello Uncle Edward, it’s your nephew George. I’ve come to see you.” Never quiz the person or try and force them to remember who you are.

Take your time when communicating and be patient. They may or may not respond, and their response may not make any sense. Don’t ask for clarification, just carry on chatting.

If you have shared amusing experiences in the past, recall them, but don’t challenge them to remember too. When they are happy, smiling or laughing, stay in that moment with

them, because a moment later, it will be gone forever.

Holding their hand, or smiling while you are talking can be very comforting, especially to someone who is having difficulty understanding what you are saying.

Its is also important to recognise that living with Alzheimer’s can be even more traumatic for the loved ones and caregivers than for the sufferer. Loved ones and caregivers often feel alone and cut off from the outside world. They may desperately need help and support, but don’t think others will understand what they are going through. As a result, they are often unable to attend to

their normal household chores and can become highly stressed and exhausted, causing serious health problems. They also need regular breaks. If you have never been in the situation, you cannot possibly understand how challenging it can be.

If you feel unable to help directly by offering to give the caregiver a much needed break, at least offer to chat with them and listen to their worries and concerns. You may also be able to offer to pick something up from the pharmacy or supermarket that will savethe carer having to worry about how or when they will get out. You might even suggest arranging an hour or so at the beach or at a park, for both carer and sufferer, if that is possible. Just keeping in touch can help ease the sense of isolation felt by so many carers. Call or even drop them an email.

And remember, Alzheimer’s is a disease that affects the entire family, including young children, who will often have difficulty understanding why the person with Alzheimer’s looks and

behaves the way they do. It is a long, arduous and tiring journey for families and caregivers. Any support you can provide along the way will be much appreciated.

As our ageing population continues to grow, the incidence of Alzheimer’s will certainly increase. Both Government and the private sector must waste no time in planning for the care of

Alzheimer’s sufferers. More specialist nursing homes are a necessity, as are provisions for respite care, for both sufferers and their caregivers.

WHEN MIGHT IT BE ALZHEIMER’S?

10 WARNING SIGNS

1. Memory loss that affects day-to-day function

It's normal to occasionally forget appointments, colleagues'

names or a friend's phone number and remember them later.

A person with Alzheimer's disease may forget things more

often and not remember them later, especially things that

have happened more recently.

2. Difficulty performing familiar tasks

Busy people can be so distracted from time to time that they

may leave the carrots on the stove and only remember to

serve them at the end of a meal. A person with Alzheimer's

disease may have trouble with tasks that have been familiar

to them all their lives, such as preparing a meal.

3. Problems with language

Everyone has trouble finding the right word sometimes,

but a person with Alzheimer's disease may forget simple

words or substitute words, making her sentences difficult to

understand.

4. Disorientation of time and place

It's normal to forget the day of the week or your destination

for a moment. But a person with Alzheimer's disease can

become lost on their own street, not knowing how they got

there or how to get home.

5. Poor or decreased judgment

People may sometimes put off going to a doctor if they have

an infection, but eventually seek medical attention. A person

with Alzheimer's disease may have decreased judgment, for

example not recognizing a medical problem that needs

attention or wearing heavy clothing on a hot day.

6. Problems with abstract thinking

From time to time, people may have difficulty with tasks that

require abstract thinking, such as balancing a cheque book.

Someone with Alzheimer's disease may have significant difficulties

with such tasks, for example not recognizing what the

numbers in the cheque book mean.

7. Misplacing things

Anyone can temporarily misplace a wallet or keys. A person

with Alzheimer's disease may put things in inappropriate

places: an iron in the freezer or a wristwatch in the sugar bowl.

8. Changes in mood and behaviour

Everyone becomes sad or moody from time to time. Someone

with Alzheimer's disease can exhibit varied mood swings

- from calm to tears to anger - for no apparent reason.

9. Changes in personality

People's personalities can change somewhat with age.

But a person with Alzheimer's disease can become confused,

suspicious or withdrawn. Changes may also include apathy,

fearfulness or acting out of character.

10. Loss of initiative

It's normal to tire of housework, business activities or social

obligations, but most people regain their initiative. A person

with Alzheimer's disease may become very passive, and

require cues and prompting to become involved.

If you have questions about any of these warning signs, the
Alzheimer’s Association recommends consulting a physician.
Early diagnosis provides the best opportunities for treatment,
support and future planning.

Please note that this list is for information only and not a
substitute for a consultation with a qualified professional.

10 Warning Signs of Alzheimer’s reproduced by kind
permission of The Alzheimer Society of Canada.

For more information go to www.alzheimer.ca or contact
the Barbados Alzheimer’s Association on 438 7111.

This article first appeared in Fifty Plus, Winter 2009/10 issue
All rights reserved © 2009 Barbados Association of Retired Persons