Requisit Respite

Sunday, January 18, 2009

When I Die

One of the residents of the memory care facility where I work wrote this request of her family. After working in memory care, and seeing those fragile people take on a world that is incomprehensible to them, I have to agree that I would not want to be kept alive to live in a state that is less than being human anymore. The human-ness has been taken away. There is no more communication and understanding. Thank goodness for the ever-vigilant caregivers that love them so much. I do worship them.

Here is what 'Fran' had to write, when she was still in her pre-dementia mind:

"If the time comes when I can no longer actively take part in decisions for my own future, I wish this statement to stand as testament of my wishes.
"If there is no reasonable expectation of my recovery from illness or disability, I request that I be allowed to die and not be kept alive by artificial means or heroic measures. I ask also that drugs be mercifully administered to me for terminal suffering even if in relieving pain they may hasten the moment of death. I value life and the dignity of life, so that I am not asking that my life be directly taken, but that my dying not be unreasonably prolonged; not the dignity of life destroyed.
"This request is made, after careful reflection, while I am in good health and spirits. Although this document is not legally binding, you who care for me will, I hope, feel morally bound to take it into account. I recognize that it places a heavy burden of responsibility upon you, and it is with the intention of sharing this responsibility that this statement is made."

I have asked my Heavenly Father why dementia and Alzheimer's disease exists and have tried to reason it out in my mind. Since my mind cannot reason it out, I must just accept that it does exist and must be for a purpose. That's the only thing that can make sense to me.
I do know that the caregivers where I work are amazing people. I never knew that people cared so much until I worked there. Bless all those nurses and nurse-types. I look up to them. I know I am not one of them in the same way they are. I care and love those residents, but I am not a caregiver-type, per se.
I hope my children will know that my wishes are the same as Fran's. Before I worked there, I felt that if I was in a state where there might be no hope, I would want to be kept alive in case I came back perfectly whole and mentally sentient.
But I realize it is not desirable to have a functioning body without a functioning mind.
Although my body is quite imperfect, I can still walk and talk and communicate. Some of our residents are higher functioning mentally, but their bodies do not work (like Lewy body dementia). That would be a living hell to me.
Likewise, having a functioning body without a mind would be equally unappealing and undesirable.
Some of our residents have no idea about what is going on around them, but they have bodies that still function, meaning their lives will be prolonged in that demented state for many years.
We have a man on hospice right now and I may go back to work tomorrow to learn that his spirit has crossed through the veil. Many of the caregivers are keeping vigil and one in particular has cried many tears because she will miss him so much.
Sometimes I feel like I am the only one who rejoices when they die. I know that they are now in a much better place, seeing their long dead relatives and friends and are released from that imperfect mind to once again 'know' what is going on around them.
That is what is scary to me -- not knowing what is happening around me.
I feel it a little because I am hard of hearing. When I can't participate in a conversation, I feel so left out and disheartened. If I feel that way being hard of hearing, I can't imagine not being able to communicate at all.
To describe it a little, it's like I want to communicate, and I think I am, but what I am saying is non-intelligible to others. If I want to say, "I am hungry. When's lunch?" I might say, "Hand. Travel. Calendar" and think I am communicating what I want.
I have no idea what they are thinking when someone just redirects them to do something else and there is no communication or understanding.

It is so hard to put into words how I feel about where I work. I love the residents. They are so dear; like little children. But they are adults, so we need to help them preserve their dignity. Because they are adults, I respect them and treat them like my elders, but it is so hard to not think of them as little children.
I look at them all and remember the words of Christ -- unless you become as little children you cannot enter into the kingdom of heaven.
These people are literally becoming "as little children."
I guess their reward is sure.
Perhaps this is the reason their reward is sure....