Telling a person with dementia about the death of a family member
Letting them know
The ability to disclose without repeated harm.
We thought to have the talk regarding no longer driving was hard with our parents or the one to move into a structured living situation. Unlike any other article, the conversation that develops surrounding a family member's death does require each of us to search our own heart and soul to determine not only our values but also those of others involved in the discussion. And to complicate the situation knowing the individual has dementia.
Emotions are running high when in this situation and can make the situation more difficult. When we consider how difficult this truth is for everyone and then, the possibility of having to relive this situation over and over. Please understand I believe in the Patient's Bill of Rights. This documentation was first brought to my attention just as HIPAA (Health Insurance Portability and Accountability Act of 1996) came into the public eye. I certainly do believe everyone has the right to know not only what the current diagnosis is, and also, the path this will take in the future, and today.
Armed with the latest information necessary to prepare and convey the information of the death of a family member or close family friend; telling a person must be approached utilizing all important details at our discretion for the individual who may pass or has passed. Just as important is the diagnosis of the person who will be receiving the news. There are so many different variables; we must think through the consequences from manner and wording as well as the amount of information we will pass on.
The type of dementia this person may have must be at the forefront of the message, as well as the relationship between this person and the person who is deceased or soon, will be dead. We must consider who will be present not only at the time of the conversation but also in the immediate future. When we talk of telling a person with Alzheimer's type dementia, we need to consider the effect this information will create when the person with dementia forgets and must hear it again. Each time we inform the person again of the passing, we set into motion the grieving again. Knowing a person can and often does pass on of a broken heart after the death of a loved one, how do we address this situation? Not providing the information to the person with the dementia is not being honest with that person or the others involved in the case. Every person has the right to be told of the impending death or death of a significant person in their life.
Another type of dementia may require a different strategy. One of the most speculative is when a person is in the process of Korsakov's Dementia. This dementia is one organic in nature and although physical damage has already occurred. The mode of the disclosure may cause more physical and emotional harm. This particular dementia is not only due to a chemical change within the body but also compounded by the social circles the person travels in person. Korsakov's Dementia is according to research directly related to the long-term abuse of alcohol and drugs. A life of social networking, life patterns, and friends build a circle of destructive behaviors. Even when a person has been sober for many years and is now suffering from Korsakov's, the old patterns frequently start again. Thus allowing for the person to begin the past practice of using the drug of choice. And people within that circle to propitiate the situation.
Above listed two very different type of situations, there are more, which will have a direct bearing on how, when and outcome of the distribution of information regarding a death of someone close to a person with dementia. The one constant to keep in mind is the importance of at least once the person with dementia should bee told the information. The reason is that for all of us, as we are in the dying process not having all the information on those close to us will make our passing more difficult. When a child of a person with dementia has passed, it is entirely possible the person will ask for or about the child many times in the future. The subject of future conversations will no doubt be 'where is _________?' or those with dementia may become agitated at hearing the person passed on. After all, this is not the natural order of things. This scenario often is present for many different reasons, whether the death/dementia is between spouse/spouse, child/parent, clergy/patron and so on.
When faced with this situation enlisting the aid of other family members, clergy, close friends of the person with dementia are all vital to having the best outcome possible in a no win situation. We must participate in this conversation with great compassion. We need to be acutely aware of the emotional state of the person.