Dementia is a cruel disease, robbing the person who has it of their independence, their memories and their personality. What remains is only a vestige of the person known to family and friends – a sad, rather forlorn shell of what used to be.
How then should we view this process that affects more than 30 million people worldwide and will hit 115 million by 2050?
We often find ourselves mourning the loss of a loved one with dementia even before they physically pass into the next world. Coming to terms with their loss of cognitive, and even physical, abilities, and having to move into the role of caregiver is a difficult adjustment.
In order to make this adjustment in a way that is most helpful to both them and ourselves, we need to look at the whole issue of dementia in a new way. It is a huge challenge, both emotionally and physically, but it can be helpful to try to understand dementia from a spiritual perspective.
Firstly, we are assured in the Bahá’í Writings that the soul remains intact despite the loss of mental and physical faculties:
Know thou that the soul of man is exalted above, and is independent of all infirmities of body or mind. That a sick person showeth signs of weakness is due to the hindrances that interpose themselves between his soul and his body, for the soul itself remaineth unaffected by any bodily ailments.Gleanings from the Writings of Baha’u'llah
This is obviously also the case for anyone with a mental or physical impairment, and not just relevant to the elderly. But when dementia or sudden illness strikes and robs our loved ones of their faculties, we are in shock and find it hard to accept that they are now changed forever.
Once again, we turn to the Writings and find that the constant and unchanging nature of the soul has been described as being like the sun, and the mental faculties as rays that emanate from the sun. When the rays fail to emanate, it does not mean the sun has ceased to exist, merely that the mirror that is the temple of man has ceased to be able to reflect its glory. In another passage, Bahá’u’lláh has explained it thus:
Consider … the sun when it is completely hidden behind the clouds. Though the earth is still illumined with its light, yet the measure of light which it receiveth is considerably reduced. Not until the clouds have dispersed, can the sun shine again in the plenitude of its glory. Neither the presence of the cloud nor its absence can, in any way, affect the inherent splendour of the sun. The soul of man is the sun by which his body is illumined, and from which it draweth its sustenance, and should be so regarded.Gleanings from the Writings of Baha’u'llah
So our challenge now is this: how do we relate on the level of soul to soul when all our lives we are used to relating to people through our minds and our intellects?
While this seems difficult, it is actually something that we already know how to do. This is something that comes instinctively when we interact with babies – we smile at them, we touch them, we show that we care for them by being physically present. We know it is possible to communicate on a simpler level, without the use of language.
We also do it to a certain extent with people with whom we do not share a common language – through the touch of a hand, a smile, a kind deed. In other words, we take into account the level of interaction that is possible and we make adjustments and allowances. And so it is with patients with dementia.
It is important to relate to the person with dementia with respect and on a level that acknowledges their feelings and not ours. We are not there to assuage our feelings of loss or guilt or anger or pity, but to walk alongside them in their reality. If they are feeling confused, we acknowledge their confusion. If they are angry, we acknowledge their anger. We let them express their feelings by asking them how things are for them today. If things are fine and they want to talk about the weather, or the food, or someone they knew when they were younger, or an event that occurred only in their imagination, then we talk about that.
If conversation is too difficult and all we can do is offer silence and our own presence, this too can be enough. Physical companionship – with the caregiver just being there in the room can be a source of great joy and happiness.
Bahá’u’lláh assures us that service to our parents is one of the greatest paths of service open to us:
Should anyone give you a choice between the opportunity to render a service to Me and a service to them [parents], choose ye to serve them, and let such a service be a path leading you to Me.
This spiritual aspect of the journey we take when we offer companionship to a parent with dementia cannot be over-emphasised. Even when the parent’s ability to recognize or express appreciation for this service is impossible, we need to understand the importance of our actions, as they do have an effect on the soul – both ours and theirs.
When we perform acts of selfless service, we are in effect assisting in the development of our souls – away from self-centredness and closer to reliance on God and His Will. Understanding that the human soul is immutable despite the veils of illness and declining mental competence helps us develop virtues such as detachment, forbearance , patience and compassion.
Seen in this perspective, we understand that the challenge of caring for a parent with dementia can open us up to developing such attributes. In times of crisis and difficulty, we find opportunities for growth and development.
As Bahá’u’lláh has said:
Verily God hath made adversity as a morning dew upon His green pasture, and a wick for His lamp which lighteth earth and heaven.
His many Writings can offer great consolation when we are afflicted by tests and difficulties:
Merge thy will in His pleasure, for We have, at no time, desired anything whatsoever except His Will, and have welcomed each one of His irrevocable decrees. Let thine heart be patient, and be thou not dismayed.
For us and for our loved ones suffering from dementia, the journey of our souls is the true journey through this physical life. Suffering and tests are the catalysts by which we become purified from the dross of materialism, and through which we attain clarity about the true meaning of our purpose on earth and eventually realise the station of divine happiness.