did you expect to last so long?

[irismarie]

I keep thinking I have reached the end of this, that or the other ability. And then go on and on with that ability somehow or other.
Keep thinking cannot possibly last long like this, but of course I do and I do and I do.
The body is amazing how it fights back even when my spirit has not really wanted to join in.

 

[pjm220]

I was just sharing with my priest and husband that I want to be careful in making decisions about things like feeding tubes. I don't want my feelings of "enough already" to influence my decisions. I am just starting the tough parts, and already thankful that there is a time limit. It's hard to watch the pain in my loved one's faces and see my husband work so hard.

 

[bythesea]

I am not on feeding tube (which is a biggy) yet, but the bipap is in the works. Today we are getting the stair climber adjusted to stop at a higher elevation, bought a chair on craigs list to self stand me when I want to get up, getting a hospital bed in two days, my first hospice aide pooped out and got a new one yesterday but between her poor english and my poor speech it was interesting, got a visit from the hospice social worker, and yesterday sitting on thed I fell down flat on the bed. No big deal right, wrong. My trunk weakness is so not there, I couldn't move, I was lke a bug on it's pack., almost called 911 but I couldn't reach my cell. Finally using my graber stick I got hold of the half rail on the bed.

My wife has been unbelievably tolerant of all these changes (emotionally). Though it all I agree irismarie, that to be in a certain frame of denial or acceptance is normal. We all knows what eventually lies at he end. I keep remembering where I was a year ago or even three months ago. Talk about watching time fly! It likes learning about time and relativity, you know when the train passes by you faster than the speed of....

Keep peeing in thw corner

 

[halfin]

I feel the same, Iris, it amazes me how much I can still do. I do almost everything still, I shower and dress myself, feed myself, go to the bathroom. But everything is so, so hard. And so slow. It takes all my strength and patience to get things done. It takes probably five times longer to do things than it used to. Meanwhile my wife buzzes around me like a hummingbird, in fast motion, as I plod along with my glacial slowness.

A few minutes ago I was putting away a box of cereal. The work of a moment, before, not even worth thinking about. But now a chore requiring planning and effort, taking the better part of a minute. I had got my WC positioned in front of the cupboard, the door open, shelves in reach, when my wife zooms over to also put something away. She waits for me, impatiently, rocking from foot to foot, for about five seconds, which is how long it takes me to transfer the cereal box from one hand to the other in preparation for reaching out to the cupboard. "Oh, well, I'll do it later," she says, and zip, she's back in the kitchen, then zap, she's in the other room getting ready to go out. Meanwhile I'm still reaching out to the shelves, my arm straining with the weight of the cereal, struggling to put it in place.

Still I know how lucky I am, to have my wife, my son. I will have all kinds of help when I need it. I don't know when that will be, but the help is here. I hope you are able to get the help you need to make things easier.

 

[abbas child]

I also feel that life is flying by at the speed of light, bythesea, which is so odd because like Hal, it takes me forever to do the smallest thing. I'm not talking about the changes coming along quickly, but the hours in a day fly by. My world is shrinking (no more cabinets above the kitchen counter; put those things I eat right at the front edge of the counter). Hal, I learned to stay out of the kitchen when Phil's working in it. My chair and I are always in his way.

Iris, losing the abilities is usually a slow, off and on process for me in the early stages. I suppose at some point there's no more compensating going on, and then the loss speeds up. I'm fortunate to have even a small amount of ability at the end, just as the loss was infrequent at the beginning. I hope your spirit can get onto the same page as your body... less arguing between them that way.
Love you and many hugs,
Ann

 

[bythesea]

Well put Hal, it's somehow comforting to know your present experiences seem to mirror my own

Stay thirst my friends

 

[Judith]

I too experience the days flying by. I think it is because the process to do one small thing takes an enormous amount of time and effort. As the funnel gets narrower, so do the tasks, so I have less and less to encumber me which leaves most of my time for reading which lifts my spirit to “press on.”

Ann and Hal, I also stay out of the way of Steve when he is working “kitchen duty.”

I cannot do much on my own but read, type with one hand, eat and drink. I am thankful that the loss is gradual and that I can still sit up in my power chair and still brush my teeth. I make the most out of my days while here, but I am looking forward to being released.