The long, long goodbye: caring for those with Alzheimer’s

It was Nancy Reagan who likened Alzheimer’s to “a truly long, long goodbye”. Mrs Reagan knew first hand what it was like to care for someone suffering the devastating disease after nursing her husband, former President and Alzheimer’s sufferer Ronald Reagan, up until his death.

Alzheimer’s is a progressive disease that slowly damages the brain. It impairs thinking, memory and behaviour. Alzheimer’s is the most common form of dementia with up to 70% of dementia patients suffering the disease.

Over time, the brain slowly degenerates, and short-term memory is impaired. As the disease advances, symptoms include problems with speech, disorientation, mood swings, self-care and behavioural issues. Finally, bodily functions are lost, and the body eventually shuts down and dies.

For someone that has just been told that their loved one has Alzheimer’s, this is an awful lot to take in. It’s devastating news – for both the carer and the patient. The carer not only has to watch their loved one slowly decline but decline in a way that can be emotionally painful to watch, infuriating, disruptive and sometimes deeply uncharacteristic of the person they have sometimes known and loved for a very long time.

The Alzheimer’s patient also has the misfortune of first knowing what’s to come, then later, as their brain function deteriorates, suffering bouts of confusion, anxiety, fear and even psychosis as the world changes in a maze of twists and turns around them.

Understanding the condition and knowing what lies ahead is very important. Planning for change, and planning practical ways of adapting to the changes is essential.

Limiting the challenges of Alzheimer’s

Here are some tips that can help the carer to maintain a sense of calm and help the patient to maintain her or his independence and dignity.

Take your time – rushing will be a futile exercise. Everything will take longer than it used to, so schedule more time to avoid the carer and patient getting distressed.

Limit choices – with fewer decisions, life is easier. For example, don’t open the wardrobe and ask your patient what they want to wear. Instead, offer just two choices. Keep things simple.

Schedule wisely – try to establish a routine so that life is predictable and not confusing. Also, try to do the more difficult tasks when the patient is at their calmest and most capable.

Involve the patient – if Alzheimer’s sufferer is still capable of dressing themselves, or eating a meal, let them do it themselves. This will allow some independence and dignity.

Reduce distractions – Alzheimer’s patients get easily distracted and stressed, so limit noise and confusion from the television and radio when eating or conversing to make it easier to focus.

Keeping a person with Alzheimer’s safe

Safety is a big issue for those suffering from Alzheimer’s disease. To reduce stress and unwanted incidents, there are some basic measures to implement.

  • Use locks – locking doors and cabinets is sensible to avoid your patient wandering out on their own or venturing to access cabinets full of dangerous items such as sharp tools or medications.
  • Check the water temperature – you may wish to adjust the thermostat on the hot water system to prevent burns from hot water.
  • Keep matches and cigarette lighters away – for obvious reasons, and it’s sensible to also have a fire extinguisher nearby.
  • Protect from fraud and scams – as ugly as it may sound, Alzheimer’s suffers are far more at risk from scams and fraudulent behaviour than other elderly people. Ensure that your patient is not left alone with an unfamiliar “friend” or ex-colleague who might talk them into some scam. This can happen via email, telephone or in person. Examples include ‘get rich quick’ schemes, prizes, insurance scams, changes to wills and identity theft.
  • Remove obstacles that could create a fall – keep the home as free as possible of rugs, power cords and clutter. Adding handrails or grab bars in critical areas is also a good idea.

Communication: Be clear and specific

Life will become more confusing for someone suffering from Alzheimer’s, so make sure you are clear with your communication. Using clear, direct statements and questions that support a single topic can help:

  • I’m going to the shops now. Is there anything that you need that I can buy for you?
  • Your hair is looking longer. Would you like someone to come in and cut it for you?
  • You haven’t eaten in four hours. Would you like a sandwich now?

The long goodbye: dealing with Alzheimers - Sage Institute of Aged CareAlzheimer’s care can undoubtedly be challenging, if not overwhelming. Above all, it is important that, as an Alzheimer’s care giver, you look after yourself. Give yourself as many breaks and access to as much support as possible. Remember, you are not alone. Reaching out and connecting with others who understand what you are experiencing can be very valuable.

Sage Institute of Aged Care – it’s more than a job, it’s a rewarding career.

Vicki Tuchtan

Vicki Tuchtan

Vicki Tuchtan is the Academic Director at Sage Institute of Education. She oversees learning processes, teaching outcomes, resources and course development. A passionate advocate for bettering standards of training in Australia, she is currently writing her PhD thesis on defining quality training in the Australian vocational education sector.
Vicki Tuchtan

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