A Helpless Voice

Today I shall remain nameless, but my emotions shall not. If you are like me, a caregiver of someone diagnosed with probable Alzheimer’s Disease, these emotions will seem very familiar. Today, I am speaking on behalf of all husbands, wives, daughters, sons, relatives and friends of someone suffering from Alzheimer’s Disease. Today I am speaking on behalf of all members of an often secret fraternity/sorority called Alzheimer’s Caregivers.

Members of this secret club are not medical practitioners – not psychologists or psychiatrists – not professionally trained to deal with the effects of watching someone say the last “The Long Goodbye”. Members have been dealt an unfair card in this great poker game called life – and are forced do their best with the cards left in their hands.

Life of a Member becomes split into two parts – before diagnosis and after.

Before diagnosis there is confusion, resentment, frustration and worry.

  • Resentful of the unexplained change in personality and perceived irrational decisions or actions that were taken by our loved one in previous times. Our reaction, which is natural, is to avoid contact with them – to limit interaction with the individual who we perceive to be miserable or fussy. The change in the relationship may be subtle, and start as early as 10 years prior to diagnosis – 10 years before you realise that the personality changed because of the disease. It is only closer to diagnosis that you become more and more convinced that something is not right.
  • Confused by an increased level of forgetfulness; bewildered by some apparent instances of getting lost on roads they were once very familiar with; confused by the fact that they repeat the same thing multiple times in the same conversation; confused by the fact that they do not seem to recall some recent event(s).
  • Frustrated by inappropriate behaviour (even though those outside of the family sometimes are oblivious to it); and closer to diagnosis frustrated by their stubborn insistence that there is nothing wrong and it is a normal part aging.
  • Worried about the future and the increasing number of strange events that you can no longer explain away – worried and scared enough to go straight into the doctor’s office to ask for help for your loved one.

Depending on how “early” they are in the disease, your loved one may be first diagnosed with Mild Cognitive Impairment (MCI). Technically, though, as a caregiver you still feel as though you are in “no man’s land”… at least for a while….Then the paranoia steps in and the frequency of accusations (which were initially sporadic) become an everyday affair. Out of desperation you reach out to your doctor once again and your loved one is eventually diagnosed with probable Alzheimer’s Disease.

Sounds familiar, doesn’t it?

I told you, I am speaking on your behalf. You will admit however that I have grocely oversimplified this process. The diagnostic process is far more involved. Also, at the time, you don’t naturally identify the emotions that you feel. There are weeks, months and even years between events. Many times you believe yourself to be imagining things until you sit down and compare notes with other family members or family friends. Then….reality hits like a sledgehammer.

After diagnosis, you are faced very much with the same emotions but for different reasons.

  • Confusion remains. Confusion over the diagnosis and what it means. Confusion over the plethora of theories circulating and terms like PiB, ameloydes, plaque, tangles… For members of this secret club, those terms are foreign, complicated and scary.
  • Frustration remains. Frustration that all the medicine in the world will not bring back the lost memories. Frustration that there is no cure and no play – by – play guide book. Frustration that there is still so little known about the disease in general and moreso, in the Caribbean.
  • Worry remains. Worry over what the future will hold at the various stages. Worry about the financial toll that it is and will continue to take. Worry over whether insurance will cover it. Worry about whether you can get Alzheimer’s – or pass it on to your children. Worry about the little things that they no longer do – read, watch television, run, swim, do crossword puzzles, garden, play golf,…use the telephone. Worry over whether or not to keep it a secret.

But new emotion – the one that replaces resentment is – GUILT. Guilt over the many years lost. Over the arguments, over the silent resentment of you loved one, only to later learn that they were unwilling victims of a disease that many still don’t know exists. Guilt over the inner-voice you ignored when you first sensed that something was wrong. And eventually, guilt over making the decision to seek the help of a daycare environment and guilt over feeling inadequate – that you couldn’t do it alone.

If you are lucky, there is another emotion to come – ACCEPTANCE. Acceptance of the fact your loved one is simply not the same person. They are now a new version of themselves, and you are greedily cherishing whatever is left…fighting desperately with time – which as you know – takes no prisoners.

Many caregivers take a while to master this emotion….sadly, some never do. Some try not to think of the disease too often and avoid remembering (in those quiet moments). They try to forget that overnight, precious memories get erased – like the hard-drive of a computer being wiped clean. But caregivers, you should celebrate and cherish every remaining day that your loved one is with you. Take lots of pictures!!! Even if they do not remember the moment, try to focus on the fact that at least they were happy in it.

So for us caregivers, it is in short an emotional roll coaster and later on more emotions will present as your loved one approaches the need for palliative care. The “Long Goodbye” is a delicate balancing act between pharmacologist and non-pharmacologist treatments. At any given time you are filled with one or more of the following: confusion, resentment, frustration, worry and guilt…. as well as the feeling of being overwhelmed and helplessness….

…but if you are lucky, also ….ACCEPTANCE.