Pam's back....as in hospital

[abnorm]

My PALS wife Pam is back in the hospital....this time it's serious....Remember we were here 18 months ago with an ALS diagnosis....thread titled "Admission Charge Too High"
I've been lurking for a few weeks..... expected to post on here and talk about an Outdoor/Shower Spa I built Pam....damn!!!!!...... altered state/lowHemo/low salt.....all of a sudden she's taken on the Hawkins look all crunched up......she's been in bed for 2 years now

Her regular GP is on vacation (naturally)....so I've never met his replacement.....He tells me his name ...I say what?Repeat please ( I 'm 62 yrs old I CANT HEAR.....)....I ask him to show me his badge he gets -like-insulted.....I'm a visual guy.......DAMN....his first name had so many "s"'s

So the regular GP has the DNR.....I have to repeat those F**king details....several different times........and they don't hear her words just mine...
Oh the preparations we did not make ...""we've got time""

The ? Floor Nurse come in......she questions me about her staff and I give a glowing report....(even tho I 've done most of the care)......."Oh that's how you do it......"
She keeps yapping....You're in the healthfield ?.....No the scrubs top was clearance $10 and a FatMan's 5X size......But I do care for Pam 24/7...........

I KNOW SHE MEANT WELL but she adds....."Well this will be a Vacation for you"
I threw-up-in-my-mouth....................................

Well it's midnite and I'm headed back...The nite nurse was wide eyed when I said I was leaving........thanks for listening dougandpam

 

[scaredwifetx]

So sorry to hear this Doug. Stay strong and my thoughts are with uou.

 

[affected]

Sorry Doug, why is Pam in hospital? pneumonia?

 

[lgelb]

Sorry to hear about Pam, Doug. Let us know if there is anything we can help with. (Unfortunately, our powers do not extend to new brains for the clueless--)

Best,
Laurie

 

[abnorm]

Thanks Scared and Laurie...................

Tillie she was "altered".....a fast blood draw revealed very low Hemo (7) and a critical sodium level.......and a UTI detected at the hospital

She hasn't been eating good for a couple weeks......sometimes only supplements or a little smoothie

She's had her blood.....antibiotics......fluids.......more "fluids and electrolytes tonite then I expect them to kick us out

We'll be coming home with Hospice care....first arrangements made today

Both shift nurses sincerely thanked me for working with them and educating them on Pam's normal care and ALS in general

Please God, give me strength.....................dougandpam

 

[Nuts]

Doug, I'm sorry. You were right, the admission price is too high. Praying for you and Pam.
Becky

 

[affected]

Thanks for updating us Doug, I've been wondering how you are both doing.

It's so tough, and each thing like a UTI can really be a tipper.

I remember the exhaustion of having Chris in a hospital. I would be dumbfounded when 'friends' would comment to me, oh well at least you will get a little break. Clueless indeed. As CALS we work harder, and in more difficult circumstances when trying to care for our PALS in a hospital ward where we don't have all our own things in place, and all the staff buzzing around that don't know how to care for a PALS.

I hope that hospice really give you the kind of support you need now, they should truly bring comfort to you both xx

 

[abnorm]

We're home now with Vitas Hospice care.....intake nurse this AM

We aren't prepared........we thought we had so much time ?

oh God......She won't last long.......she hasn't "eaten" in a week......no PEG/NG

Hospice replaced everything (equipment).....supplied morphine etc


This DAMN disease..........It takes EVERYTHING....and scares everyone...She was so loved at work with many friends........now everyone runs and hides from us and our calls.....My sister and my business partner/friend are her only visitors in two years........'ole Lou Gehrig could have kept this one to himself!

dougandpam

 

[lgelb]

I am sorry, Doug. So often we think there is more time and there is not.

You might reach out to anyone she might want to see and give that person the opportunity. Sometimes they come 'round. But you are with her and that is what really matters to her.

Best,
Laurie

 

[affected]

Sorry to hear this Doug.

Concentrate now on giving really good palliative care and all your love to your wife as it is obvious she deserves that.

It all stinks and ALS SUCKS doesn't even begin to cut how we feel xx

 

[GilWest]

........now everyone runs and hides from us and our calls.....My sister and my business partner/friend are her only visitors in two years........'ole Lou Gehrig could have kept this one to himself!

dougandpam

You are 100% correct there. We have had only 2-3 people visit in 2 nearly 2 years. None on a regular basis...

 

[scaredwifetx]

It's so hard when loved ones are not coming to visit. I guess it's to hard for them to see what is happening so they do not know what to say or how to act so they avoid us. At least that what I choose to believe so I can try to understand. Steve's children do not visit him and my friends now avoid asking me how he is.

I am praying for peace and comfort to you in the days ahead and wish we all could be there for each other and I know most of us could use the hugs of understanding. I so hope the thoughts and support from each of us can be felt across the miles between us.

 

[abnorm]

She's resting quietly tonite.....without the Morphine yet....she has bad dreams with it in the past

Thanks Tillie for the perspective you offer the forum

I reached out on her Face book account.....to a big response.........Thank you Laurie for the suggestion

This ALS is just so scary.....your "handle' is most appropriate wifetx............ThankYou for the Virtual Hugs

dougandpam

 

[abnorm]

Boy today was a day !!!!.............she's back to resting quietly w/morphine on board

She slept most of the day....didn't want any care/moving/covers......The worst is she can't/won't "purse"/pucker her lips to drink/sip.....and having trouble sucking....and clinching her teeth

Wound nurse Candy arrives for first real visit......edema around arms/wounds

Hospice Dr. arrives at end of nurses session......she stays and asks HOW to give tablet meds if Pam's NOT drinking??.....Dr gets BP then starts in on eating and ways to eat....

I guess I imploded.....I interrupt him......"did you read her chart".....after I "mentioned" she hasn't eaten in 8 days and "you act as tho she'll get better"........he packed up his stuff and left without a word OH SHIT

Nurse Candy stayed and suggested finely crushing the Ativan and mixing it with the .25 ml of Morphine..........that's where I'm headed Now.....wish me luck......

I did call back the hotline and apologized........dougandpam





Mod : I paid my money where's my contributor status and banish these ads??

 

[Nuts]

Doug, it sounds to me like the doctor should do some appologising. On top of everything else, he needs a thicker skin. I wish that I had the right words. Wishing you and Pam peace. This is so hard...
Becky