No one knows how much better Leo will get, but today he seemed to show some improvement. He was also able to talk coherently upon awakening, for a longer period of time than what had up to that point been the norm for him. He got restless about mid-morning, and it was decided to try to take him for a longer walk than usual. So he was prepared, and we went for a stroll together. A belt was placed around his waist, something to hold on to in case he should lose his balance while walking, and needed to be steadied. Took him down stairs to see the garden, which he seemed to delight in, also around to the gold fish pond, which is near the center of the garden. For him it was like the first time, since his memory is pretty much gone south. So I guess he lives in a world where everything is for the most part, new. He seemed to be able to get glimmers of memories past, and when that happened he became very excited, and tried to tell me that he remembered something about the area that we walked around in for awhile. He would point, and then try to say something, expressing to me about how he has seen this before. He had a strong memory for some reason, for one of the trees that was in the corner of the garden, and for him it seemed like a revelation.
As the walked continued, my thoughts went back to just a few months ago when he was able to walk around on his own, and he could be taken out to a restaurant to eat. He has slid fast in the last few months. Perhaps he will slowly gain back some ground, but there is doubt he will be able to get back where he was before.
He is slowly getting stronger, which can be a two edge sword if he starts to try leaving the unit here. William is already doing that, and it can be a full time job just explaining to him why he can’t go home. Or trying to convince him that he is not in New Jersey anymore; and finally that his parents, who have been dead over 30 years, are not downstairs waiting for him. When your short term memory is about 45 seconds in duration you need a lot of explaining, over and over again. Having two patients on the floor who need that kind of attention could get just a tad frustrating. However it would be good for him to get better and we all would be happy about that. Frustration is part of the job, so it would be worth it if he did get better.
One of the great things about being a caregiver, who takes care of people long term, is that the humanity of those taken care of is never lost. The gradual decline into dementia does not lessen the essential relationship that develops over long years of care. There is a bond that is formed that is very deep, sometimes frustrating, but is based on a deep acceptance of the one being taken care of. We see our charges at their best and worst, and this brings about a closeness that is rewarding, just as much as it can be trying.
Sometimes people approach caregivers and state how they could never do their job. I think if these people would visit nursing homes, and strike up a friendship with a resident that is on going, they would start to understand. The humanity of the one being taken care of is never lost, no matter how long the journey, the bond lasts. That is why for many caregivers, is a real blessing when they can be with the one they have spent years taking of care finally breath their last. Sitting with them, holding their hand and praying is a way to have closure, being able to say goodbye, and simply letting them go.
Some people think the role caregivers have is parental, but I don’t believe that. I think that is true for children taken care of their parents, since there is a role reversal. For me I think it is a form of friendship where the one taken care of, can be them selves, no matter how that is manifested, and they are accepted with compassion and understanding, it goes with the job. There are parental elements of course, but I don’t think that is central, at least from the limited experience that I have had.
Of course caregivers can also at times not be in top form, and then it is time for those being taken care to be understanding, which happens more often than many would think.
There is always a give and take on both sides.