Thursday 16 October 2008

Caregiver's Story - "Lost World" - The Effects of Alzheimer's Disease in the Later Stages are Devastating as the Afflicted Person Slips into Oblivion

Hi, Dear Members,

 

I just came across this Article "LOST WORLD", written by our Member & Caregiver, Catherine Siow, published in the Star Newspaper on 17 September in conjunction with the World Alzheimer's Day.  Would like to share with you all as some of you may have missed this article earlier with another write-up of her entitled "FADING MEMORIES".

 

We look forward to your feedbacks and sharing of your personal care-giving experiences.

 

Warm regards,

Jenny

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Lost world

(By Catherine Siow, NACON Member & Caregiver)

 

The effects of Alzheimer's disease in the later stages are devastating as the afflicted person slips into oblivion.

 

INEVITABLE is the progressive deterioration in the health of an Alzheimer's disease (AD) patient as the years pass by. The emotional and physical toll on both the afflicted person and their family caregivers are tremendous, especially when the patients do not recognise their nearest and dearest anymore – a condition referred to as agnosia. Distressing though it may be, the caregivers can still help to maintain the dignity and quality of life of their loved ones by managing the symptoms.

 

Dr Yau Weng Keong, Consultant Physician and Geriatrician at Hospital Kuala Lumpur, visiting Consultant Physician and Geriatrician at Hospital Tuanku Jaafar, Seremban, and member of Alzheimer's Disease Foundation Malaysia (ADFM) Advisory Panel of Medical Specialists, gives the low-down on agnosia and related symptoms of sundowning and wandering in AD patients.

 

What is agnosia?

 

Agnosia is the inability to recognise close ones or objects. The affected person is unable to make meaning out of one or more of their senses despite intact sensory abilities. For example, the person may have good vision but is unable to identify a lamp.

 

Agnosia can lead to the inability to recognise family members and even one's own reflection in the mirror. There are multiple other causes besides AD.

 

What about Sundowning? Why does it occur?

 

Sundowning is a phenomenon unique to AD whereby the person becomes more confused, agitated, restless and insecure in the late afternoon and early evening. The patient may become more demanding, suspicious or disoriented.

 

No one is sure what causes sundowning, but most likely it is from progressive deterioration of the brain. As the AD progresses and the person understands less about what is happening around them, they become more frantic in trying to restore their sense of familiarity or security.

 

Sundowning may relate to lack of sensory stimulation after dark. At night, there are fewer cues in the environment, with the dim lights and absence of noises from routine daytime activity. It can be worse after a move or change in the person's routines. Also, AD patients tire more easily, even with very few demands on their thinking ability. This makes them more restless and difficult to manage when they are tired.

 

How can one deal with such a problem?

 

Strategies for handling sundowning include the following:

 

·            Keep the person active in the morning and encourage him/her to have a rest after lunch. If    tiredness worsens sundowning, an early afternoon rest may help.

·             Don't physically restrain the person. Let them pace where they are safe. A walk outdoors can help reduce restlessness.

·            Some people are comforted by soft toy animals, pets, hearing familiar tunes or an opportunity to carry out a favourite pastime.

·            Try not to arrange baths or showers for the late afternoon if these are upsetting.

·             Nightlights or a radio playing softly may help the person sleep.

·             Some people find warm milk, a back rub or music calming.

·             Some may need medication. Discuss with the doctor.

·             Avoid arguing or asking for explanations.

·             As caregiver, remember to have adequate rest yourself.

 

Why do they wander?

 

AD patients wander for multiple reasons. Some of them may be searching for something, such as the bathroom, or trying to get away from a noisy or confusing environment. A few may even be trying to fulfil tasks from their former occupations or reliving the past.

If they've recently moved to a new environment, wanderers may be searching for something or someone familiar. They may also be trying to satisfy a basic need, such as hunger or thirst, but can't remember what to do or where the kitchen is located.

AD sufferers often lose the ability to vocalise pain. Instead, they may become restless or try to escape their pain by wandering.

If wandering occurs at the same time every day, it may be linked to a lifelong routine. For instance, a woman who tries to leave the nursing home every day at 5pm may believe she's going home from work. This belief could be reinforced if she sees the nursing home staff leaving at that time. Having an activity at that hour could distract her urge to wander. Another option might be to have staff exit through a different door.

 

How best can the family caregiver deal with such episodes of non-recognition, sundowning and wandering?

 

The most important element is the person caring for the patient. There is a need for the caregiver to have inner strength and a cheerful spirit to give their loved one tender loving care. Caregivers must try and get more information (through reading and talking to others), and ventilate their problems and feelings. Otherwise, their emotions may have a negative impact on their loved ones. This is especially so with agnosia.

Seeking help from doctors, nurses and others is also important.

 

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Fading memories

(By Catherine Siow, NACON Member & Caregiver)

In conjunction with World Alzheimer's Day on Sunday, a caregiver shares her roller-coaster ride as her mother enters a more severe stage of the illness often referred to as The Long Goodbye.

DEALING with losses is an everyday affair in my life as sole caregiver to my mother who was diagnosed with Alzheimer's disease in 1998 at age 66. In the early days when mum lost her cooking skills, I removed her wok and gas stove from the kitchen. When she started misplacing money and other possessions, I took over her finances and removed clutter from our home environment.

My fellow caregivers from the support group and I used to brainstorm on how best to care for our loved ones, making things as safe and secure as possible for them. But none of what we had discussed since our group started in 1998 was of any help to me on the day when mum lost recognition of me.

 

 

 It was the usual weekend at home and mum and I had just finished dinner. She had bathed earlier and was in her pyjamas. I was at the dining table preparing the weekly marketing list. Mum came up, looked at me and asked (in Hakka): "Why has Li Moi (my Chinese name) not come to take me home yet?" After my second or two of shock, I stared at her and demanded: "Then who am I, who am I?" Mum looked at me for a while, then walked away – she had no answer. I ran upstairs, hot tears streaming down my cheeks, and cried for a couple of minutes. Then I went downstairs, put on her favourite Karaoke VCD and distracted her back into sorting her box of coloured beans (her occupational therapy).

The following weekend, the non-recognition episode repeated. After this second incident, I started mum on day-care seven days a week.

It has been one-and-a-half years since that fateful day which signalled the start of a more severe stage in mum's illness and the start of another roller-coaster ride for me in dealing with the emotional stress of care-giving for her.

For several months, I was overwhelmed with guilt for my confrontational reaction. I slipped into depression as I could not accept that mum could forget me. There's just the two of us at home and I have been her sole caregiver for the past 10 years, giving her the best care even as I struggled with the role reversal in our mother-daughter relationship.

In three months, I lost 10kg. My support group friends did their best to help me but to no avail. Ironically, I snapped out of depression when I was assailed with various health problems. I had to make myself well so that I could take care of mum.

And so, mum and I adjusted again to another new routine. I am extra vigilant of the way I talk and behave with her. Every day, I make peace with the fact that mum is gradually withdrawing into a world of her own, one which is increasingly out of my reach.

But since mum went for day-care seven days a week, she has not failed to recognise me. Every evening, when I pick her up (it is a nursing home 10 minutes' drive from our house), she would happily announce: "My daughter is here. Thank you. Bye-bye." In the car, she would go into her usual tirade: "Why so late from work? I am very hungry. The people here don't give me food," even if she had just eaten.

Mum still has quite a bit of her social skills intact. She is ever the cheerful and gracious "hostess" and my pride and joy. Some of the elderly at the home are wheelchair-bound and mum would sit beside them and "entertain" them. Seeing mum chatting away happily is rather gratifying for me and helps mitigate my guilt for putting her there. They close the gate at 8pm, which allows me time to get through the evening traffic on work days. On weekends, I pick mum up at six. I usually send her at 10am after we've had breakfast together and she has had her bath. Mum can still bathe herself but I run a strict "quality control" check.

Though I wrestle with constant adjustments in care-giving for mum as the illness strips away more and more of her memory, it is not always downtime as we do have fun escapades together, especially when we holiday abroad.

We toured Sydney-Melbourne in 1998, London-Paris in 2000, the French Alps-Lake Geneva in 2004 and Perth, Australia, in 2006. I always opt for the two-seater row near the washroom and let mum have the window seat. On take-off, I'd hold her hand and tell her to "swallow saliva". When the plane is still in mid-flight, mum would ask: "Why is the bus not moving?" and I'd answer: "It's picking up passengers." When there's turbulence, mum would remark: "Why doesn't the bus driver know how to drive?" and I'd say: "Oh, the road has many potholes." The best part of the flight is when the plane is about to land on a clear day. Mum would be in awe of the sight below: "Wah, so many cars and houses, all so tiny!"

The Perth trip was the first time I used the wheelchair service for mum. At Perth airport, I had to queue up at the immigration checkpoint while mum was wheeled away by an airport attendant. When I rejoined mum, she waved to the pretty blonde attendant and said: "Terima kasih banyak banyak."

Last December, when my elder brother (my only sibling) and his three teenage children took mum for a weekend stay at Awana, Genting Highlands, mum had a similar non-recognition episode after dinner. She went up to him and asked: "Who are you?" After his initial shock, my brother answered gently: "I am Fah Chai" (his childhood name). Mum looked at him and retorted: "Fah Chai where got so fat?" (My brother has doubled in size since his schooldays.)

That night and the following night, my brother and his kids played mahjong with mum till bedtime. Mum can still play mahjong well and that's what we did this Chinese New Year when I spent two whole days with her at home.

I am blessed that mum still listens to me when I tell her to do things. Every night, after she has had her snack and bath, I'd prepare her for bed at 9.30. Then it's lights off except for the little lamp in her room. I'd go upstairs and listen to her for about five minutes. Then I'd have my quiet time till 11 before calling it a day. I'd be up by 5.30am and would be all freshened up before I go downstairs to see to mum who gets up around seven.

Lately, mum has started wandering at night so I removed even more "clutter" from the area downstairs, where she is queen of the territory. Mum has never climbed upstairs, where I reign over my sanctuary.

I am grateful that mum is still independent enough to allow me this private space but I constantly make sure that she feels safe and loved in her current space so that she does not retreat too quickly into her distant world where I would be forgotten.

 

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