View unanswered posts | View active topics It is currently Fri Oct 24, 2014 6:32 am



Reply to topic  [ 23 posts ]  Go to page Previous  1, 2
 Are we doing the right thing?? 
Author Message

Joined: Tue Apr 24, 2012 5:00 pm
Posts: 78
Location: Fayetteville, NC
Post Re: Are we doing the right thing??
I've just come from the hospital. Ted has been there since Wed night when the NH had called me saying he'd been having troubles swallowing and they had started crushing some of his pills and giving them to him in pudding/applesauce. They'd also switched him to a soft diet (he was able to eat pudding and soup that night with me there). They told he was having more troubles moving, and were not sure I'd be able to take him the next day for his scheduled MRI. Additionally, they said he was having more troubles with his speech. And, I knew from the weekend, Ted has been having some problems with stomach cramping and loose stools--which is still a problem now. After more conversation, I asked if the nurse thought he should go to the hospital, and she said well, he fought the last time and wouldn't go in the ambulance. I told her I'd come to help. We went to the local hospital. We are now back on hospice. Previously, I had been concerned about Ted's decline over the past 3 weeks, but the NH doctor never called me back. I repeatedly voiced my concerns and requests for a discussion with the doctor to the nursing staff, but the doctor merely wrote that Ted did not meet hospice status in his opinion. It is VERY frustrating. I am glad we came to the hospital. Even though there was no evidence of pneumonia or UTI, Ted was obviously in deteriorated condition. They are giving him morphine, which is also helping. I'm not sure where we are in this, but will keep fighting to keep Ted as comfortable as I can. We made the decision a long time ago when he was first diagnosed and have a DNR in place. We will not do a feeding tube, and yes, this is difficult. These decisions are wrenching, no matter when or which way you decide to go. My heart also goes out to you and I wish you the best in whatever decisions you make because I know you are also doing the best you can with only the best intentions. Keep on fighting in your own way for them.


Fri Oct 26, 2012 8:28 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3396
Location: Vermont
Post Re: Are we doing the right thing??
Hi - I'm not clear on why there seems to be reluctance about putting your LO on hospice care. Hospice is a wonderful, supportive community of people who know what the patient and the family members are going through and extra hands to care for your LO as well. If I were in my final months, I'd want to be on hospice as soon as possible. It is a wonderful organization with very knowledgeable, caring people. Take care, Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Oct 26, 2012 10:10 pm
Profile

Joined: Tue Apr 24, 2012 5:00 pm
Posts: 78
Location: Fayetteville, NC
Post Re: Are we doing the right thing??
I don't know if it's because he's young (only 57) and really has nothing else wrong with him besides the old back fracture and knee and shoulder injuries from his days in Special Forces. But, the hospice company at that NH facility said that Medicare rules are stricter and I guess that had a play in it. But, mostly I believe it was a failure on the physician's part there to take the time to really listen to us. in NH they see a lot of patients in varying conditions, so perhaps he just didn't see what I was seeing. I'm glad I got a second opinion.


Sat Oct 27, 2012 5:53 am
Profile

Joined: Tue Apr 24, 2012 5:00 pm
Posts: 78
Location: Fayetteville, NC
Post Re: Are we doing the right thing??
And, maybe this'll make it a little clearer. The NH home doc wouldn't write the order to request hospice to come re-evaluate him. Thus, the hospice company could not come in to see him to even begin that process until that was done. I believe if I'd had better communication lines with the doctor, I would not have been in this position.


Sat Oct 27, 2012 6:00 am
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3396
Location: Vermont
Post Re: Are we doing the right thing??
I can certainly empathize with not having good communications with drs. It makes an already difficult situation even harder for the CG. I wish you all the best. It is very difficult when drs. won't return calls, don't listen to the CG, etc. despite our best efforts at clear communication. Can you switch drs. or are you in an area where there is very limited health care? Big hug, Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sat Oct 27, 2012 10:08 am
Profile

Joined: Tue Apr 24, 2012 5:00 pm
Posts: 78
Location: Fayetteville, NC
Post Re: Are we doing the right thing??
I'm in an area where there are limited doctors, and the facility I was at was one of two that we qualified for (VA-wise and condition-wise) because of the limited # of facilities having the ward capabilities to manage wandering patients. Now that Ted is more bed-bound, I hope we can get that eased a little. But, it is and was for his and the other patients' safety. Just another tough rock to have to climb in this journey. On a lighter note, tonight Ted wanted coffee and was able to drink it, but he informed me somehow I was in Alaska but he couldn't go. I just went with it...


Sat Oct 27, 2012 7:56 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3396
Location: Vermont
Post Re: Are we doing the right thing??
Sending you positive thoughts, Jean. I had a similar situation with my dad - very limited health care choices, both with drs. and with facilities. It sure made the CGing role very challenging, especially with the provincial attitudes that drs. were gods, CNPs were gods and the POA family members were idiots and not acting in the best interest of their LO. I hope your experience improves... Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Nov 02, 2012 8:23 am
Profile

Joined: Fri Apr 06, 2012 10:19 pm
Posts: 27
Post Re: Are we doing the right thing??
So sorry that things have got so confusing. It really is a difficult illness to understand as there is no standard answer to anything.
Val


Sat Nov 03, 2012 1:38 pm
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 23 posts ]  Go to page Previous  1, 2

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by Maël Soucaze © 2010 phpBB.fr