The path of the caregiver

The path of the caregiver

Caring for others is twofold.  There is of course the work that is needed everyday, what I call the daily ritual.  When I get someone new on the floor it may take a week or so to get a routine down so that things run more or less smoothly.  The actual manual work is the easiest part of helping others for it is a goal that can easily be accomplished.  Feeding, bathing, turning (if needed) take on a rhythm that can be soothing at times.  Though of course there are days, like with any other day to day routine, that has to be done even if there is some inner unrest, or tiredness present or one is simply in a bad mood.  Like in all areas of life patience is needed to really accomplish anything well.

It is the relationships that take up most of the energy.  One reason is that everyday it will be different, especially with those who are elderly and have some level of dementia.  One day things go smoothly, then the next there is a constant struggle to take care of someone who is in a fighting mood and suddenly you’re the enemy.  There can be recrimination, often for something that happen in the far past, or perhaps being accused of stealing from them, etc.  Now that can take up some energy, even if a seasoned caregiver knows what is going on. 

All that can b done is to do the job and help as much as is possible.  Knowing that in a few hours, or moments’ things can change and the mood is different.  What causes some sorrow is the fact that the caregiver can’t get inside the world of the one who is suffering from dementia, though in conversation that can be attempted often with some success.

Our minds are prisons of sorts, for our understanding of life and the world take on the cloak of infallibility, even if it is not seen as that.  That is why even normal people have a hard time communicating.  More often than realized, it is simply impossible.  Add dementia to the mix, and there is rough sailing a great deal of the time.

What helps is the understanding that it is not personal at all, yet the suffering of the one going through it persists. For some, it can last for years; they may never really get out of it.  Or if they do, it is only for a short time.  I do think that the experience of time for those with dementia is of a different kind entirely.  There seems to be no linear time, just the reliving of the past brought to the present, then forgotten about and something new comes to the fore.  I wonder if the mind is actually aware in dementia patients, but can’t speak, sort of like someone trying to drive a car when the steering wheel does not work, or the brakes aren’t working too well.  If that is true, then seeking to be kind and gentle with them takes on a whole new dimension for the caregiver.  I often see an element of real presence, of being, in the eyes of those I take care of. Little instances of awareness that can only be seen if actually looked for.

There is always a person present, no matter the degree of dementia.  Once years ago, as I was taking care of Leo, who had dementia at an advanced level.  He would pretty much just sit quiet all day and reacted when something needed to be done for him, but otherwise did not communicate much.  Then one day, he looked at me and said with urgency, “Mark, I am still here”, then he went back inside.  I have never forgotten that moment and will take it to my grave.  I guess it was a defining moment for me.
Perhaps one day I will find out what it is like having dementia, for none of us knows what awaits us in our last mile of life.  I still believe that old age is the most important part of life, though in our culture of today that is not something thought about much.  It is also important that we can hopefully allow others to take care of us when our time comes with some degree of grace.  Though even that may be taken out of our hands and then we will be at the mercy of those who care for us.

Who is it that looks out at us,
an awareness for sure,
though perhaps now unfamiliar
for the world they inhabit
is not of the same weave
as those who have not dementia.