Change

It is a new kind of sadness, grieving, despair.
Fear of the future and my ability to support him are gone.
Frustrations at his continued inabilities are left behind.
Anger of how his needs are changing my life do not exist.

At Lieberman Center his needs are being met
Although never as well as I was able to meet them.
I was always there for him when he needed me.
Now he waits, in a wet diaper, for the aide to arrive

I go to visit, to hold his hand, to read aloud
At meals I help him cut his food or manage his fork
I rub his neck and his swollen ankles,
And then an hour or two later, I go home.

He continues to live in the moment there
Seems to be enough, and he is content again.
He has never asked why or when or what or where.
The narrow world that is now his life, his home

The minutes, to me, seem to go so slowly
But his days pass easily and without variation.
The place through my eyes is painful to witness
He doesn't seem to notice the difference.

And then the fall and the eight staples in his head.
And the pain in his back and neck from the fall.
And the Grand Mal Seizure with its hospital stay.
But he doesn't complain, or cry, or need.

And the raised rails on his lowered bed,
And the increased difficulty moving around
And the need for the wheel chair to get around
But he doesn't resent, or anger, or demand.

So, it is a new kind of sadness, grieving, despair.
Fear of the future and my ability to support him are gone.
Frustrations at his continued inabilities are left behind.
Anger of how his needs are changing my life do not exist.

Now, with most of my previous emotions put to rest;
Fear, frustration, anger, resentment,
My sadness and grief and despair
Can be more purely felt and therefore more strongly.

All I can do now is wait, patiently wait.
Wait for the end of life to arrive.
His blessed end,
or mine.

When Will It End?

I hate my life right about now. I am living with tears. I am lonely. I am confused. I am frightened. I am confused. Do I feel better now that I have gotten that out? No.

I have decided to take over making his breakfast completely every morning for a while (maybe forever.) I nicely told him that he would have to stay in bed until I was ready to help, that unfortunately this is where we are with our life as of now, and that it means more loss of independence for him.


Seeing that he was upset, I told him that I need to talk about it with him and that I know it mades him feel bad and that eventually I  will be able to avoid discussing it. I just don't feel comfortable making unilateral decisions without telling him about it. I am sure that one day soon I will be able to do that as well.


He couldn't find the muffins in the refrigerator this morning, didn't know how to use the butter spray, forgot to warm the muffin up in the microwave and then wondered why it was cold. Instead of just sitting at his place at the counter, he was trying (again) to perch himself on the edge of the stool in a very awkward position in front of the drawers with no knee room because that is where he put down his muffin.


Until now he has been making his own breakfast but only at 70-80% success since returning from Mexico. Then I have to intervene or explain with explanations that are not understood. Taking over completely will be easier ... at least for me.


I will also begin to lay out his clothes every day because he not only cannot do this easily but also cannot judge what to wear based on the weather. Yesterday it was 90 out and he said he wanted a light shirt. I put a short sleeved polo out for him. As we were about to leave, he had on a long sleeve shirt and I questioned him about the short sleeve one. He said this was the one he wanted. I come to find out that he had on both shirts, thinking the Polo was an undershirt, however, when I named the "undershirt" he is not able to make an association with the item.

Until now he has been getting dressed on his own but only at 70-80% success. Then I have to intervene, or explain with explanations that are not understood. Taking over completely will be easier ... at least for me.

I have been handing him his night time sleepwear and laying out his morning sweats. Easier for him and for me.

I have decided to take over fully for breakfast and getting dressed because these skills come and go and get scrambled so frequently that it must be proof that he can no longer handle them. I get frustrated with giving instructions that cannot be followed or do no get followed or get followed incorrectly. 


In my life, I am used to telling or asking someone for something and then letting go knowing it will be done. Not so anymore with Gregory. So metaphorically, like the nurse in the old people's home, I will hand him his meds and stand there while he puts them in his mouth and swallows. Hope I do not have to start checking under his tongue to make sure he isn't spitting them out later.


Did I mention that last night at bedtime he was trying to read and again forgot that he needed his glasses.