I've been here a good while now, even know some of the good people here, too, so I hope that anybody who responds to this thread will be kind.

The last couple of weeks have been something of a trial, not for me, but for the two sets of parents of two 100% disabled 'children'. I say children, although they were both in their late 30's, and by 100% disabled, I mean just that.

No speech.

No real interaction.

Fed by tube.

Emptied by another tube.

Needing 24/7/365 hands-on care.

And medical intervention, many, many times, to keep them alive.

The parents of one of these children separated when it became obvious that this was going to a be lifetime commitment for them both. The mother did 95% of the necessary for the last 37 years.

The other child had both parents, who were, needless to say, not in the best of health themselves over the years.

So what is it all about?

Quality of life?

There was no perceptible appreciation from either, except what could be interpreted as rage on occasions.

No hugs, no cuddles, no holding hands for comfort.

No real interaction, as I noted at the first part of the post.

In the USA, just keeping them alive over the years would have run into the many millions of dollars, possibly tens of millions. Here in UK it cost the parents very little, if anything at all, except their entire lives as care-givers.

I'm sorry if this sounds like a ramble, and I guess it is - just me trying to get my head around the facts that even their poor lives had to be saved, at any cost, when they each became grievously ill over the years.

Would you have 'let them go'?

Could you have 'let them go'?

Our own daughter is severely handicapped, but is rational and lucid, AND married, and has a 12-y/o daughter who is a living wonder, like most granddaughters are to their doting GPs.

I only know what it must have been like for the last 37 and 39 years for the other parents by being close to them as dear friends, but I find it hard to see what kept them going with a total lack of any hope or good outcome for their children, neither of whom showed only the slightest hint that they were actually here at all.

This is not a religiously-inspired post, none of us here are religious or even Christian. Just ordinary folks trying to do the best we can for our kids, and I guess that's the right answer, eh?

tac

That is the right answer. I know a couple in a similar situation here in the states. Fortunately the system here does have programs for people in their situation. Tac, you are correct. Even though it doesn't "cost" them much they pay with their entire lives.

The consideration to do anything other than what they have chosen never even entered into their thoughts.

Excellent post Sir. I've spent a moment appreciating the things that I "worry" over.

Life is more than having a heart beat and doing well for your kid isn’t to not let go if that’s best.
Your situation isn’t even close in any way.
I’m sorry for them they couldn’t let go, for a lot of reasons.

I wouldn’t begin to know the answer to that until I had to step into their shoes.

It’s unfathomable to me. I am so grateful for what I have, and still spend so much time worrying over what if’s and could bes.

I do have a dear friend with a child who has severe disabilities, and every move he makes has to be considered based on her medical needs, compounded by the fact he’s a widow and has another healthy child- so he simply can’t devote himself entirely to one child’s care. I can’t imagine what he shields us from seeing, but I also believe, and know in a small way, that people have a tendency to build caregiving into their every day, and “make” it normal- when your child or parent or pet breaks a bone, for example, you adjust. You accommodate. You fit it in.

If there was even the slightest hope of improvement, once you had the caregiving built into your routine, how hard would it be to play God? To get up one day, and say, “well, we’re done here”? I’d struggle with it, I’m sure. I think I’d feel very selfish taking that option away when I had the routine of care already built into the fabric of my life. But maybe I’d feel differently if those shoes were on my feet.

I’m so sorry for your friends’ losses. They obviously felt their children were worth their lives’ work. My heart goes out to them.

When I lived in New Jersey I worked in the fire protection industry.
Part of my job was to do inspection of building fire protection systems.
Several customers I inspected were facility's that treated people with severe disability's.
These facility's were state of the art with the best care possible. The staff were top notch, caring and professional.
The patients always seemed happy and well taken care of.
I had the utmost respect for the staff who took care of their patients. I don't think I could have done that type of work.
I would see people of all ages with severe disability's but the kids were the ones would make me the most upset.
Several time I would leave after doing my work in the facility almost in tears.

I don't know the answer, tac. It would seem that the proper thing to do, is to do that which is most merciful, but I'm not sure I could even answer that part.

Tac,

My family has been involved in the medical community in the USA for multiple generations. What you describe is a sad state of affairs and in my humble opinion could have been avoided with the proper planning. Over here there legal documents that you can have drafted up that express your wishes in cases such as this. It is something my wife and I had setup several years ago. Why someone would have a loved one brought back from the brink of death to continue to suffer in such a manner is beyond my comprehension. However, I would never intentionally put a loved one down as that duty falls to the Almighty Himself.

My grandmother suffered for nearly a year with cancer, bed ridden for about six of those months. While she did suffer, it did bring our family closer together than we had been in a very long time. Those are moments I will cherish for the rest of my life.

Thank you all for your caring and thoughtful posts. They really are appreciated.

Let's close it now.

tac