Here We Go Again

I’ve not been as active as I might wish here and I see this group has not been too active but here I am again, where I was when this group first started.  My FIL died Nov 2007.  My MIL has done well until the last week or so and the decline has been alarming.  I’m not sure who will read this but I’m glad for the place to write it.
 
 
 
We have been first coping with debiliatating pain.  The damned if you do and damned if you don’t world of narcotic pain relievers.  I did ask about the Tens machine to no avail.  Dr wanted hospital, MIL wanted otherwise and so here we are on 10 mg Oxycotin twice a day and 5/325 Percocets as needed (3-5 times daily and which we will try to cut back).  She can’t stay awake at the moment or assist due to the degree of pain meds. 
 
 
 
She has Stage 4 Multiple Myeloma and we now know its everywhere and has spread significantly in the area of the most pain.  We consult with a radiation dr next week.  Twice before this has provided prolonged (4-6 mos) pain relief with no need for narcotics (just some Tylenol here and there).
 
 
 
There is a hellacious yeast infection in her genital area of which I only became aware on Thurs night.  Went into diaper rash treatment mode and called the dr Fri morning.  By Fri afternoon, the nurse in his office drew off 1100 ml of urine.  We are not getting much urine output now but some is going in uncollectible places at the moment.  If it seems dire, we will be in ER for draining by Sun morning.  She’s on oral meds and ointment for this and the yeast infection seems already to be responding.  We have done 2 grueling shower sitz baths last night and this morning but it’s worth it.
 
 
 
She’s unable to use the phone and will call for me, during the night, though I’m not there and wonder why I don’t come.  She’s minimally, in the strictest sense of the word, communicable.  Our goals for the day - more time awake, less pain meds, more food, more movement.  Her strength is declining at a rapid rate.
 
 
 
She is seeing things or hallucinating, whichever definition works for you.  She’s seeing “people” who aren’t there - vaguely.  As a spiritual person, to me this is not good news for her prognosis but I search my heart, are we at that point where she goes not to return?  I don’t feel it yet, and that is not over-optimism on my part but hope only.  We are definitely at a serious point, a crisis point, a balance point - where it can go either way and I’ve not a clear feeling for which way we’re tilting - perhaps towards the no return, at the moment.  Our will for her to live is the bolster, though she has not lost hers, it is not actively engaged either.
 
 
 
More later - I’m sure.
 
 
 
Deborah

Re: Here We Go Again

Debs, with you in spirit, be reassured you are doing your best for your MIL.
Are there McMillan or terminal care nurses over there, they could be a support, to you both and maybe give some night cover ? Thrush can affect the mouth too so check that for white spots.  the sleepiness is worse when first on the meds, and should ease as the pain balances it.  How is your other half coping?
If you have a moment read the lovely post above yours. Much love and a big hug
and get a bit of rest if you can, this is a bit of a marathon with what has gone before and you have had it tough lately. You will all be in my prayers. Message me if you need to let off steam, be gentle on yourself
                                                           love from Gael

Re: Here We Go Again

Thank you Gael.
 
 
 
We’ve accomplished a big step.  We had to rush her to the ER a week ago.  Her sodium levels were 118 (130s are normal) and she was not outputting urine at an adequate rate.  She improved for 2 or 3 days, plateaued for 2 days perhaps and then began to worsen there. 
 
 
 
She never wanted to end like that in an institution with tubes everywhere.  She had made that plainly clear to us over and over.  Once in an institution, getting her back out proved an ordeal.  Thankfully, she chose her power of attorney well in the unswerving clarity of my husband regarding her wishes.  My BIL arrived Friday morning and it is hard for him to give up any tiny hope of recovery and he would pursue much that is invasive or intrusive, if hope were extended by the medical staff.
 
 
 
We were able to become hospice clients yesterday (Sat, almost one week after she had entered the hospital).  We were able to get her home.  It required a 40 min ride by ambulance.  Her agitation at being in the hospital and active resistance to the various tubes there has ceased entirely. 
 
 
 
She looked around her familiar surrounding almost in a state of awe, as though she did not expect to see them again.  The IV is gone but the oxygen and catheter remain.  Now, she seems not to mind.  Though it was difficult for her to speak clearly enough last night for us to understand, she managed to get out plainly “I am glad to be home”.  That made it all worth it.  What a loving Valentine’s Day gift my husband gave her.
 
 
 
Now, she need not wait on drs orders or her turn from the nurses when in pain.  Now the whole focus shifts to her comfort.  We are told not to expect more than 3 days to a week.  Time will tell.  Thanks for being there.
 
 
 
Deb

Re: Here We Go Again

So glad they are focusing on her comfort, that is the important thing, with poor urinary output chances are she will drift into a peaceful deep sleep content in her own surroundings, thinking of you all and sending love.

Re: Here We Go Again

I can think of no more comforting thought than the image you provide.  I can think of no better way to let go of this physical life, given what she has been through.
 
 
 
Thank you for this …
 
Deb

Re: Here We Go Again

Hi, folks - Deb’s MIL Jeanie died on Sunday.  Deb posted a beautiful eulogy to her in the Passing Pod.


To celebrate Jeanie’s life - and her relationship with Deb:

Re: Here We Go Again

Sylvia, thank you for kindly letting uS know, I have sent Deb a personal message, she is in my thoughts too.

Re: Here We Go Again

Hi, Zephyr - you’re welcome.  Remembering to notify everyone can be hard - and finding the right wording is challenging, too.



peace and blessings -



Sylvia