ALZHEIMERS AND THE EMOTIONS WE HAVE TO COPE WITH
Marietjie Knoetze
When a loved one is diagnosed with Alzheimer's Disease, and the full implications of the diagnosis become apparent, the diagnosed person, as well as those close to him/her has to deal with a whirlpool of emotions.
In our society, where we are not since childhood encouraged to acknowledge and/or show our emotions, this can be, and mostly is a very traumatic and stressful situation, and can be compared to dealing with the death of a relative.
Many people had expected something along the lines of dementia before the diagnosis, but at the pre-diagnostic stage, it is still a bit vague, and other possibilities for the symptoms like forgetfulness, confusion, etc. are also considered. Once the diagnosis is made, however, that 'security blanket' of all kinds of maybes, rationalizations of strange behavior and hope that this too will pass, evaporates into thin air.
At first, a feeling of numbness and apathy may take hold of you. The shock, if you have some knowledge of the prognosis of the disease, can be too much to face, and for a while it may even be ignored in the closed circle of loved ones.
After a while in this void, a feeling of denial appears. All kinds of signs pointing away from the diagnosis may be observed, speculated upon, and believed by all parties involved. In this period, violent reactions can erupt should a well-meaning person try to convince the involved parties of the validity of the diagnosis and the need for pro-active planning.
Once this period of denial has passed, the involved parties may experience an intense anger. This anger may be guided towards the dementia sufferer for leaving them with extra responsibilities, towards the closest person to the affected person, towards the self (for not being able to see it earlier, or preventing it in some way), towards the medical profession, and even towards God for allowing something like this to happen to us. This is normal, and one should not try to negate these feelings, or even hide them, for that will prolong the grieving time, and probably waste valuable time in which something could have been done in slowing down the progress of the disease.
During or after this angry period, one can expect to start negotiating in order to change the situation. Thoughts like,
"I can resign from my job and spend more time with him/her, if You will make this disappear"
"I am willing to change my ways if this situation can be reversed,"
" I'll be the perfect partner/child if this could only turn out to be a nightmare."
Although the order in which these feelings occur, may vary from case to case, all of them mostly appear at some time. Following negotiations with God, or Some-one in control, during which process all kinds of admissions of guilt, or promises of some kind or other may be made, a time will come when acceptance of the situation will take place.
This does not mean that everything will now be hunky dory, and all negative feelings will just disappear. By no means! These emotions may re-occur at any given time, for example while the family is enjoying something that the person with dementia or Alzheimer's can no longer enjoy (guilt), or even when the situation in caring for the Alzheimer sufferer becomes more difficult, and family structures starts to disintegrate (guilt, anger, incompetence, helplessness).
Only after the diagnosis has been accepted, can meaningful and sensible planning take place for the long-term care of the Alzheimer Sufferer, and the adaptation to the situation by loved ones.
Again this does not mean instant tranquility for all concerned. As previously mentioned, people does not grieve according to strict rules. Some of the relatives might already have passed the point of acceptance while others may still be angry, denying or negotiating and blaming. This leads in many cases to discord in the family.
Should the carer, or person responsible for the decision making for the Alzheimer sufferer during such a time of turbulent feelings then decide on institutionalized care, major unhappiness can arise. If not understood and treated with love, understanding and tenderness, this can affect the Alzheimer sufferer very negatively indeed. Although the intellectual, motor and most other functions of the brain deteriorate, it does not happen simultaneous, and sometimes the ability to decode hidden emotions, and detecting friction amongst people in the vicinity can be very acute and accurate for a long time.
The only way we have to cope in these difficult circumstances, is to empower ourselves with as much knowledge about Alzheimer's Disease and research as possible, to acknowledge our own emotions, accept ourselves for who we are, make peace with the diagnosis, and the sufferer, and be as kind and loving towards each other as possible.
