Where Are The Ghostbusters When We Really Need Them?
Is there a microscope which can help us understand the mind of a loved one with dementia? I feel sometimes as though I am a scientist desperately trying to dissect the condition. Truly, I wonder if others have done the same. I have not researched the question, but know for sure that the observations I am experiencing could not come without living with the patient, nor without hearing the experiences of hundreds of others around the world. It is doubtful that a clinician could experience what we as layman/laywomen do when we live with a loved one for 24 hours a day and experience their fluctuations in behavior.
Like a scientist – which I clearly am not – I observe patterns which evolve once the brain has been damaged by stroke, disease, burst blood vessels, and blockages. There is a distinct pattern of behavior for each individual, but even more fascinating is that others with whom we have no contact, who live elsewhere on the globe, eat different foods, have different lifestyles, experience many of these same behaviors. This is precisely why I write about what I am observing. Because those who have never encountered an unhealthy brain, are entitled to some insight. There is a very real possibility that each of us will be in the company of someone we love, who is forced to experience cognitive decline. There are many foundations and associations devoted exclusively to this same study, but once confronted with it in our own family, very few of us have the time nor the energy to read the data. At best, we use the excellent resources at our finger tips to get answers to our questions about cause, and resolution to different situations. It is our inclination to run to a doctor for help and ask for a medication to reduce the severity of certain reactions from the patient. There are times when this is absolutely the answer, but not always. Each situation needs to be assessed individually. It is however important to realize that many general practitioners may never have had firsthand experience dealing with a patient who has cognitive decline. No doubt they will do their best to assist you, but truly it is crucial that your loved one be under the care of a Gerontologist – a specialist who deals with aging and the ramifications of the decline in brain function. Do not consider this a luxury, it is essential for both the sanity of the caregiver and the proper care of the patient.
In conversations with others caring for a loved one with cognitive decline, I have mentioned a repeating dream which Hubby experiences. He does not see it as a dream, but as something which actually occurred. The story goes as follows: He went to our next-door neighbor’s house. No one was at home, but the door was open. He decided to go inside. There he discovered an apartment identical to our own. He was amazed that everything was the same and wondered how that might be possible. He was tired and considered laying down in their bedroom. Then he decided better of that idea, fearing that the neighbors might return and be upset to find him there. Then he returned home. This experience seems a bit similar to “Goldilocks and the three bears,” a children’s book of my youth. I might not have shared this incident with you except for the discovery that other patients with Hubby’s condition have also had the same dream and have shared it with their family members, and once again, they believed it to be an actual event that took place. There is no point in telling them otherwise. They would get angry at us and think we are delusional.
These experiences are not dissimilar to hallucinations, except that hallucinations take place when they are fully awake and others can be in the room when they are occurring. I would never have believed they even existed if I had not witnessed them on repeated occasions. Hubby saw people who were not there, dogs who were not there, children who were not there. He spoke to them and generally was very irritated when they did not answer him. There are many chapters in this Dementia Diary which deal with specific hallucinations and they can be found in the index at www.thedementiadiary.com.
It does seem that when we realize that there are patterns of behavior among people suffering from cognition decline, it makes it more tolerable to deal with these situations and their ramifications. It takes away the fear that this moment is unique in all of human history, and therefore a crisis which needs resolving. It is not. It does not. It will pass, and we caregivers find that it is far more upsetting for us as onlookers than to the person actually experiencing the confusion. In their minds, there really is no confusion. It is we who are confused.
It is good to find the ability to smile when thinking back on these incidents. They are not at all humorous when they are taking place because our normal inclination is to make sense of that which cannot be explained. That, for the caregiver is emotionally draining. In addition, we may need to keep our loved one calm when they believe they are in harm’s way, or being maltreated by individuals with no such intention, or perhaps by an illusion… a ghost…which is very real to them. That thought brought the memory of the movie Ghostbusters to mind – if only we had a team with magical abilities to disperse the goblins in the minds of someone with dementia.
Understanding the “nature” of dementia may make it a bit easier for those observing it, to process. Being angered or upset about what is occurring is not only worthless, but damaging to the one experiencing the reaction. Caring for this loved one or friend is difficult enough without allowing ourselves the luxury of irritation or anger at that which no one can control. Nothing we can say or do will alter their perception at that moment in time. Accepting this concept makes our own lives easier on this very long road of caregiving.
