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 A move that will live in infamy 
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post A move that will live in infamy
I've been pretty silent lately, which is not my way but this month has been challenging.

Mom is now in a dementia unit at a facility with a very good reputation. I thought I could relax, but I should have known better.

She started in their rehab unit, as that was the only bed. (Mom went straight there from the hospital.) A week or so into it, I noticed the signs of a UTI and asked the staff to look into it. That was a Thursday. That was also a day after the therapy staff, both speech and occupational, informed me that Mom was being uncooperative and that Medicare would no longer cover her. Mom is pretty much broke, so I'm working on the Medicaid application now. As government program applications go, it isn't bad so far. But it still takes a lot of time and organization.

When I suspected the UTI, I told the therapy staff that I was sure that was why Mom was uncooperative, but no one took me seriously. At that point, I appealed the Medicare decision, but without a positive UTI culture, had no leg to stand on. I found out on Sunday that a culture hadn't even been done. The CNP, who didn't even look at Mom, decided to wait through the weekend to see what happened. Mom cried through the whole weekend from the pain. On Sunday, my sister and I found out that a culture hadn't been done and insisted that one be done immediately. They complied, the CNP grudging it, but for whatever reason the results weren't significant. We had it! We took Mom to the doctor she's seen for 20 years and trusted. That culture was significant and the doctor saw right away that there were several kinds of bacteria in it.

To top it off, Mom was delusional and thought her roommate was a man. The roommate had brain surgery, with her head shaved, and was tall and slender. I had to admit that she did look a bit masculine. But then Mom was seeing all kinds of evil things going on in her room and eventually on the whole unit. We found out, late in the game, that she had been sitting at the nurses' station until she was so exhausted that she fell asleep - then she was put in bed. We used this to push the move to the dementia unit up two days.

Now, Mom's a tiny bit more peaceful, but I'm not sure the delusions will go away. She's still refusing medications and we're partly tempted to let her. Maybe she thinks the meds are what's keeping her alive and she doesn't want to live. If she's ready, so are we. We love her and don't want her to live through this any longer than is necessary.

The people working on the dementia unit are lovely, as are most of the patients. If Mom can see them as they really are, maybe she can adjust. I hope.

And that's the news from Lake Wobegon...


Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]

Tue Nov 30, 2010 3:05 pm

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: A move that will live in infamy
Kate, I'm sorry things have been so stressful. It's a fact that placing our LOs doesn't result in less stress but stress of a different kind [I realized that when my husband was in a dementia facility in summer of 2009]. I wasn't clear about her UTI: Is she receiving antibiotics for it? Did the culture indicate what antibiotics the bacteria were sensitive to?

Hard as it is to do, sometimes we do have to let go of control over situations. If she is refusing meds and doesn't want to be kept alive, maybe it's time. It's easy enough for me to say that, I know, and harder for you. I'll be thinking of you and hoping for better days. Hugs!!

Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Tue Nov 30, 2010 5:13 pm

Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: A move that will live in infamy
If I have learned anything since I started reading in this forum, it is that if you don't fit into the cookie cutter mold in a nursing home, you don't fit in at all. Two years ago my husband spent two terrible weeks in a nursing home. It was difficult to get a bath for him, and they never had his meds on time., His meds were only effective if given so far away from mealtimes, but they couldn't get it right. They couldn't get his food orders right....they had scheduled activities that never took place. It was a nightmare. The place looked good, but it was a disaster.

I hope your mom's care in the dementia unit will be more satisfactory.


Tue Nov 30, 2010 5:16 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: A move that will live in infamy
Sorry to hear about this.

I think the rule of thumb has to be "document - document - document." Put everything in writing, in faxes or emails to the RN in charge of patient care.

Tue Nov 30, 2010 5:17 pm

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: A move that will live in infamy
Nan, I hear you--my husband was a whole month in a SNF between hospitalizations in 2008 and they couldn't handle him. He was refused readmittance due to 'behavioral issues'. However, the dementia facility he was in during our 2009 move was much better, staffed with people who were specifically trained in dementia care and attuned to individual behaviors and needs. It was excellent but I was still constantly stressed because he would often wait until I was there to ask for help with something, not tell the staff that his pants needed changing, etc. Plus, they let him sleep through the evening meal. He lost twenty pounds while he was there, which he gained back quickly once he was home. So..vigilance is still in order, the situation is still stressful but at least you can usually get some sleep at night and sometimes that, alone, makes it worthwhile. :P

Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Tue Nov 30, 2010 5:43 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: A move that will live in infamy
Overall, I think we were very lucky that my dad was in the ALF he was in. He had been at NH level for many months, but they never asked me to move him to an NH, and they gave him a lot of extra attention. The nurses they have on staff now seem really good, and most of his CGs there were excellent. I just called a couple of them tonight to see if they were ok, because I know how much they loved my father. They are heartbroken that he is gone. Some of these folks who have such a hard job to do have become good friends of mine and I will miss seeing them. 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.

Tue Nov 30, 2010 10:44 pm
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