Monday, July 25, 2011

Better left unsaid?


Over the past week, I've written 4 posts that I just can't bear to publish. Suffice it to say, with as hard a time as my father in law has given us over the past 25 years, I still wouldn't wish what he's going through on my worst enemy.

He's lost his dignity and apparently sometime today, he's entered into a delirious state, and now he's lost his mind, too. I've mentioned it to anyone who will listen, but apparently nobody cares. He's so clearly demonstrating what I know as a hypoactive delirium--just lying quietly in bed going silently mad--and because he's not ripping out lines, not a soul cares. He thinks he's at the "Clover Complex" and that my son has been taking him out in his wheelchair to see "the beautiful grounds on this estate." Neither is true. What is true is he's tucked away in a corner, pissing on himself and suffering pain. Today they took away the one vicodin a day the less than generous staff was allowing him to have for pain that's still present. They say his sodium is low--129--and while they're replacing this, they haven't removed the several glasses of water they stick under his nose to drink everyday. For my nursing friend's who'll get the significance of this, I can only say, WTH? No pain pills because it might make him more somnolent, but here, let us help you drown your sodium levels in water because there's no way in hell that will make him somnolent or confused, right?

Head, meet wall.

Progress is not being made and his physicians refuse to throw in the towel. In 16 days, he's been either without food, or on some variation of a liquid diet. Preoperatively, he was malnourished from the tumor. When he gets solids, he has abdominal problems. Friday they mentioned a feeding tube. The moment I said, "absolutely not," I became the enemy. But friends, these aren't my wishes, they're his. Shockingly, he has an advance directive and it states clearly, no artificial feeding. I'm stalwartly trying to abide by his wishes.

In the middle of all of this, I fear I've lost my objectivity. I'm not cut out to be a designated advocate. I'm really not. To me, I see a dying man and want desperately for him to have comfort and solace at the end of his life...just like it says in his directive.

Also in the middle of all of this, I've finished the shawl. I'm hoping it brings me pleasure some day, because right now, even this brings no satisfaction whatsoever.

Send vodka...I'm running low.

A note on the photo and the shawl: it's in an unfinished state in as much as it's not yet blocked. The photo is from my laptop's photobooth. I used the Nikon, but couldn't find transfer cords. Better photos are coming. I promise.

22 comments:

SkippyMom said...

Your heart is in the right place Rudee. I am so sorry. Honestly. He deserves better and although I am not a nurse/medical professional I see what they are doing having lived through it.

I am so truly sorry but perhaps your husband, his son, should step in and take on his directives - it would be hard to do for you, knowing, but the decisions should be left to them [the kids] and relieve you of the burden.

sorry, none of that sounds right - I hope you know what I mean.

Good thoughts to you my friend.

sue b said...

I am so sorry he is going through that and I would be feeling so angry and helpless, knowing what could and should be done. Saying a prayer for him, and for you.

Ruth said...

Hugs to you. Lots of them.
Its hard being a nurse advocating for patients its even harder being a nurse advocating for family.
If he has the advance directive - what on earth is the use of it if the docs ignore it - head bang.
More hugs and good thoughts coming your way and to your family.

Rose said...

So sorry for all your family is going through. I hope he gets some relief and good medical help and I hope you feel better too.

Rositta said...

I am so terribly sorry for you. I don't understand just one pain pill a day, I get more drugs for arthritis! Why, what are the afraid of? Addiction maybe, for a dying human being who gives a dam if he gets addicted, let him be pain free. I get the feeding tube though, the longer they keep him alive the more money the get. Stick to your guns and get your husband to help you. Thinking of you and sending hugs...:)

Miss 376 said...

It's hard having to fight for what a family member has stated in an advance directive, I went through it with my mum. My thoughts are with you all

Barbara said...

Ghastly situation. You have done and are doing your best. He will finally have peace and so will you but it is a horrible time until then and you should not really be on your own with this.

Mimi said...

Oh Rudee, I'm sorry you're having to go through this.
Comfort and solace are all any of us want at the end of our lives, and the end will come to us all.
It must be very difficult to be the advocate, why can't people listen to the wishes of the patient?
((hugs))

unmitigated me said...

If someone with an advanced directive and a hospice nurse at his side can't get appropriate care, I fear for the end of my life. Please tell me what institution you are at so I can never, ever go there.

unmitigated me said...

If someone with an advanced directive and a hospice nurse at his side can't get appropriate care, I fear for the end of my life. Please tell me what institution you are at so I can never, ever go there.

Mausie1 said...

Rudee, I am so sorry for your father in law but also for you and the family....the only thing I can say is get Hospice on board....They will see to it that he has the pain meds needed for comfort and will abide by his wishes as stated in the Advance Directive....Sending Hugs to you and yours....Birgit

Empress Bee (of the high sea) said...

oh my i hate this, and mostly for you honey. you are a caring dear person and i am truly sorry...

the shaw is lovely!

hugs, bee
oxoxoxoxoxo

Knitty said...

Hugs and vodka, coming right up.

This situation makes no sense at all which is why, sadly, it so believable. I am optimistic, hopeful and happy by nature, but government, insurance companies and medical practices are doing their best to change all of that.

I hope everyone knows that I don't paint all who fall under those categories with that ugly brush, but making sense and often doing what is right is not a strong point within the groups at large. :(

ztoamom said...

Oh my, dear Rudee. You might be wearing too many hats. Mausie1 had a good word - get Hospice on board - you are under too much pressure as advocate without the right help.

Brenda said...

Hugs....I really don't know what to say. I lived through some of this with my own Dad and it left me with such bitter feelings towards other family members and the medical staff where he was. Mostly I am angry at myself for not speaking my mind towards others at the time it was happening.
My heart goes out to you.... and the shawl looks amazing.

Stephanie V said...

I think that being an advocate for a parent (or in-law) is one of the hardest things we ever can be asked to do.
If he has a directive surely his son can force the issue? How your heart must ache. I'm thinking of you...look after yourself.

Finding Pam said...

I don't ever want a doctor that does not have compassion. Don't they know about palliative care?

I'm sorry that this has come to you to enact. No one should have to suffer the pain he is in.

My thoughts and prayers are with you all.

The Bug said...

I have nothing to add - but my prayers. Thinking of you & your family...

(Queenmothermamaw) Peggy said...

This is unbelievable that you are going through this. Maybe nature will step in. No one should have to suffer pain in this day and age. My mom passed the night before the MD was to place a feeding tube. You are an angel going through this with him in light of all that has gone on with his past behavior. Blessings
QMM

sapphireblue said...

That's what advance directives are for. If that's what he said, than you are wonderful for trying to abide by his wishes. Hugs! I witnessed my mom's dementia in her last days. It's awful. I couldn't hide my emotions about it.

linda said...

Does the facility have an ethics committee? Is there an "interventional specialist" or somebody with a big fancy title you can run screaming to??? WHY AREN'T THE NURSES STANDING UP AND YELLING AT THE DOCS THAT HE IS RECEIVING INAPPROPRIATE TREATMENT???? He should be able to receive pain releif without resorting to hospice, unless you truly beleive that he meets the criteria. Bugger to his sodium, he should still have access to sufficient pain control. Sodium shouldn't be a consideration when he needs comfort.
Prayers for Mr. LTL and for you.

bettyjf1 said...

Gosh.. I know I'm reading this later.. but I'm so sorry for what you've been going through.. I completely understand what you're trying to do.. I've seen the end both ways with loved ones.. Thank God they didn't do that to my mother.. They let her go; with Plenty of pain meds