It is 4 years later and all I know is…it is hard!
“Mom, just remember you going to have a lot of residents one day. You only have 4 now. You will not be able to love them like you love these!” My son said.
It is 4 years later….and I do!
I’ve counted, and 40 people came into my life at Jura. And with them, their families, I found a place for each one of them in my heart.
But it is hard. It is hard to understand the life living with the sickness. It is hard to make sense of it all! You would think by now I would be fine with all of this! But I am not! I do not want to understand this disease robbing people of a life with their families. I do not want to understand this disease robbing someone of their own being. I do not…
It is hard to see them slipping through your fingers, every day a little bit more. Physically their bodies are changing the way their brains are changing. They become thin. They eat as much as you and I together, but they become thin. You get anxious as you feed them. Almost trying to force feed them just to keep them from slipping away. Maybe if they eat even more, they will still be a little bit more who they were.
But it is hard to see them slipping away, becoming more distant. Getting that faraway look in their eyes, as if the pupils in their eyes become so small, so black, just a little black hole they are slipping into. But just when you think you have lost ….a smile break through, and almost reach the tiny black pin holes, and all you know is, they are still there!
It is hard to take them into my Home. To take them and to hold them and to try and make a difference. Sometimes the difference is so small, only for me to see. Sometimes there is no difference. It is what it is. Sometimes there is a bit of a difference and it is for all to see, and you are so happy. You did it! You achieved something. And for a moment you actually allow yourself to think you are good. Only… for you to loose that again. To see it slipping away! To see it being a no improvement again! The shimmer of hope, that shimmer of something in the black small pin holes are gone again. But you cling to the memory. Your memory, of achievement even if it was just for a moment. Because you need it. You need to know you are doing this to make a difference. Even if it is slight.
It is hard to look family and loved ones in the eye. It is hard to try and gain their trust to care. It is hard to allow yourself to feel their pain of abandonment. It is hard to feel their pain of letting go. It is hard to try and help them through their guilt.
One day someone asked me a question, while frantically busy leaving her Mother in my care. The Mother was fighting and screaming and swearing and refusing to go into the building. She was 87 and was walking up and down, up and down the farm road. Fuming. ” I am not staying here! I want to go home! TAKE ME HOME! “ It was still my first couple of months with only my academical studies behind me, and a bit of practical caring for a few. So the daughter with wide eyes asked: ” So what is the Procedure now?”
There is NO PROCEDURE.
Because it is hard.
It is hard to let that person on their first day into my Home. I did visit them before. I did visit the family before. And I did have numerous communication to try and learn a little bit of this person.
But it is hard to take that persons’ hand. A stranger. And to her …I am that stranger. And to her, this doesn’t even make sense. She does not even know exactly where she is, she does not understand why. She hardly knows the person leaving her here. All she knows, I think, is a familiar feeling with the person ( her daughter) who was with her in the car a short while ago.
My heart is pumping in my chest, because I know the first couple of hours is so important. I have to make sure this person will experience love and safety as soon as possible. But it is hard with someone without trust. Someone I can’t reason with. Someone with minimal communication skills, let alone vocabulary. Someone with very little inhibitions. Someone who will not mind kicking or slapping me or swearing at me.
It is hard to break through the mantle of distrust, to find a soft spot for your hand to slip into. To become the Safety Net. The one to Trust. The one to feel comfortable with. The one who will be recognized by her smile….and the one she will allow into her disrupted life.
There is no procedure.
It is hard.
To care every day is hard. To have to see the destruction of the person, is so hard.
It is hard to see and to hear….
The repetition of sounds. The only way of communication?
The repetition of a movement. A way to let go of frustration? A way to keep a busy brain busy? Or just the only message the brain is still capable of sending?
Laughing out loud for anything and everything. A way to let out emotions? Or is it the beautiful sense of humour that has always been there, that is just overflowing into laughter?
The packing and unpacking. Is it not wanting to move, but to keep this emptiness inside, too busy from realizing the emptiness?
The wandering. Is it to ease the physical pain? And if there is no pain, is it to ease the pain inside of you?
It is hard for me to see…
And then it is hard to take on this responsibility. Sometimes you want me to make them better. Sometimes you want me to keep them from never slipping and falling, or to keep them from getting sick. Sometimes you want me to change them back to who they were. Sometimes you want me to give them the home they were asking for all the time. Sometime you want me to tell you what is the use? And sometimes you want me to tell you…how long still?
And all I know is
it is hard.