Saturday, October 15, 2016

How much do you share?

"managing" wrote: 
 Sounds like he's wanting to just check out. If you knew you only had three more months left with him would there be something you would want to have said to him or ask him to share with you that was previously not shared but you would like to? If I were these guys I would choose to die as fast as I could and not prolong the suffering in some half-way attempt at Beating this thing with surgeries or treatments that just keep your body alive but not getting better. Just not dying right away. And/or actually make your quality of life worse. Ugh! No thanks! I would choose the quickest and less struggling kind of way. I believe I will choose that, but I don't suppose any of us REALLY know until it is our own time. I wish you good things.

We have probably had all of those types of discussions that are possible....and more than just a few times.  We also know that we could move to Oregon where assisted death is possible.  And yes, we've discussed that.

There were moments during his spinal fusion surgeries that we did not know if he would survive.  Afterwards we had long talks about it and about the fact that life could end at any moment.  Then, 4 years ago, when his mom walked around the end of the her bed and dropped dead with a heart attack - we had many, many discussions.  I think that brought it home that either of us could go just as fast.  I think it would be the preference for both of us.

In some ways, I think he is afraid of death.  Yet he is saying he will not do dialysis or transplant.  He has had so many surgeries that I don't blame him.  Yet when that "moment" comes - what will any of us do?

Our current discussions are sad.  How much do we tell our family and friends?  Do we keep quiet about lab results, doctor's visits....and then they are shocked when something happens?  Or do we share with them and then they spend their time worrying.  We don't want to create anxiety and there are some where that would happen (neither of us think his daughter could handle knowing what's going on with him).  He doesn't want attention or sympathy and I do admire him for that.  If we don't tell immediate family - there are some who will be terribly upset that we didn't.  It's such a fine line and we still haven't decided how to balance it out.  We have discussed his current status with a few family members and a couple of friends.  But for the most part, we have decided to remain quiet for now.

And then there is the power of prayer.  He does not want people praying that he stay alive.  And I think that ties back into the above comment.  If the body is not going to get well - why do people pray for the person to stay alive?  Why not pray for a peaceful, painless resolution?  I know of a woman who is about 85 and has been in a nursing home for 5 years.  She has had numerous strokes, is on oxygen, can barely move, lays in bed all day long - yet people pray that she will live.  She has shrunk and faded to near nothing.  90% of the time she is unaware of her surroundings.  I pray for mercy for her sake - not that she live.  But people think you are a horrible person if you don't pray for someone like her to live.  Sigh.

The ultrasound on his kidneys came back clear.  That means there is no growth or access blocking them.  An indication that this is just kidney failure - nothing else.  So now, we wait for the referral to nephrology.

There are days when he says he won't go to another specialist.  And I understand that.  But I try to tell him that it doesn't hurt and perhaps it could help.  I suppose it depends on his mood when they call.

It's not been a particularly good week.  He fell in the back yard.  The gigantic black/purple bruise that covered most of his lower back was horrendous and he refused to go to ER or even call his doc.  Then night before last I heard a gigantic crash in the kitchen.  By the time I got there he was face down on the floor.  He said he had dropped something, it his his foot and when he brought his foot up, he lost his balance and went down.  It took him awhile to get up and once again, we sat and talked about what might happen when he can't get up on his own.  At his weight I can't lift him and I'm not sure I could even roll him over.

Then yesterday - he was just mad at the world.  Yelling and screaming at every little thing.  I understood.  He can't grasp things with his hands anymore - whatever it is just drops out.  He has no feelings in his fingers.  He is in pain for the recent falls.  He is just mad at life.   I made myself as scarce as possible in this tiny little house.  It was an extremely stressful day - but we managed to make it through it.

The fall weather is holding out and I have been busy with my gardens.  Hired a helper and we ripped up flower beds, removed mulch, put in metal borders, ground cloth,  and have put down 1 1/2 tons of river rock.  Probably another ton to go next week.  They are looking lovely, well manicured, and it will be easier to clean the leaves out with a blower.  I've also signed up for 3 art classes this fall.  I had to laugh as all 3 classes gave me homework to do!  Needless to say, I'm keeping busy!  And I think that is the best way to handle a diabetic spouse - you just keep living - doing the things you would do if you had a healthy spouse - to the extent possible.