Being a Primary Carer for a relative with Alzheimer’s disease – The Long Goodbye

“I am a Carer”. There you go, “straight off the bat” as they say, I write this article (the first in a series) in my role as a Primary Carer first and author second. At present I am the primary carer for my elderly mother who is suffering from the advance stages of Alzheimer’s disease. It is desperately cruel disease (most are, I know) in that it robs people (by and large) of their dignity and their independence at a stage in life when they need it most.

In the United Kingdom, the Alzheimer’s Society claimed in a recent survey that over 750,000 people suffered from Alzheimer’s and related dementia problems. In the United States it is calculated that an estimated 4.5 million people suffer from Alzheimer’s and that this figure has doubled since 1980.

Further alarming statistics highlight the fact that it is possible that in the US alone, the number of people suffering from Alzheimer’s could more than double to between 11.5 and 13 million sufferers by 2050.

Alzheimer’s disease is what is described as a progressive disorder of the brain that gradually destroys a persons’ memory, ability to learn, reason, make judgements, communicate and carry out daily activities. As the disease progresses, sufferers may also experience changes in their personality and display such behavioural changes ranging from anxiety, agitation or suspicion right up to and / or including delusions and hallucinations

Although there is currently no cure for Alzheimer’s, new treatments are on the horizon as a result of accelerating insight into the biology of the disease. Research has also shown that effective care and support can improve quality of life for individuals and their caregivers over the course of the disease from diagnosis to the end of life.

Considering the long term implications for Alzheimer’s sufferers, the hidden sociological impact will in reality be born on the shoulders of those who will be caring for the sufferers for it is indeed a bittersweet irony that those who care for the sufferers in reality suffer more than the sufferers do themselves.

This fact in itself has been largely responsible for another survey finding recently and that was the fact that Americans are equally afraid of caring for someone who has Alzheimer’s as much as they are of developing the disease themselves. Approximately 1 in 2 American adults are more apprehensive of caring for partner or loved one who has developed Alzheimer’s. Just less than 1 in 5 American adults have indicated that they are more afraid of getting the disease themselves (17%).

The real problem from a carer’s perspective is that no two people experience Alzheimer’s disease in the same way. As a result, there's no one approach to care giving. Your care giving responsibilities can range from making financial decisions, managing changes in behaviour, to helping a loved one get dressed in the morning.

Handling these duties is hard work. But by learning care giving skills, you can make sure that your loved one feels supported and is living a full life. You can also ensure that you are taking steps to preserve your own well-being.

Caring for someone who has Alzheimer's disease or another illness involving dementia can be very difficult, time-consuming, and stressful – (serious understatement here). Here are some more things a care giver can do to help the person with Alzheimer's disease while also reducing the substantial burden that comes with care giving:

    * Stay Informed - Knowledge equals power. The more you know about Alzheimer's disease or any other signs of dementia, the better you can prepare yourself to deal with problems that may arise.

    * Share concerns with the person - A person who is mildly to moderately impaired can assist in his/her own care. Memory aides and other strategies can be created by the person with dementia and the caregiver together. This is easier said than done I know but you have to give it a try. But, and this is a big but (no laughs here please) it is essential that you realise that you are probably dealing with a person who if they have any cognisance at all, will be in denial.

    * Solve problems one at a time - A multitude of problems may occur that may seem insurmountable at the time. Work on one specific problem at a time -- you do not have to solve every problem all at once. As the saying goes “Success by the inch is a cinch, by the yard it’s hard” and in this case this has never been more true.

    * Use your imagination - One of the keys to handling this disease is your ability to adapt. If something can't be done one way, try another. For example, if the person only uses his or her fingers for eating, do not keep fighting; just serve as many finger foods as possible!

    * Establish an environment that encourages freedom and activity within limits Try to create a stable, balanced schedule for meals, medication, etc. but also encourage activities that the patient can handle such as taking a walk or visiting an old friend. Remember, the person with AD is not the only one whose needs must be taken into consideration. You as a caregiver have needs and desires that must also be met. First, try and find some time for yourself. Even though this suggestion may seem like an impossibility, find some time during the week where you can have someone else watch the patient -- be it a relative, friend, or neighbour -- and do something for yourself.

    * Avoid social isolation - Keep up contacts with friends and relatives. It’s easy to get burned out when it seems like you have no one to turn to. Another way to establish contacts is by joining the Alzheimer's Association or other such support groups. Talking with other families who share many of the very same problems can be reassuring as it helps you know you are not alone in your round-the-clock struggles.