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 Locking my dad's door after mealtime to keep him up 
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Locking my dad's door after mealtime to keep him up
One more thing. If a CNA or the nurse says that something is "policy," and you feel it's wrong, go to the nursing director or the clinical coordinator. A nurse that we respect a great deal once told me that something was policy. I asked the nursing director about it and she said what I was told was absolutely not policy, and that the "policy" was just the opposite. You might want to do your questioning away from your Dad, too. It can be upsetting, as I found out to my dismay.
Even in the best of facilities, policies and practices might not be clear to even the best staff members, so it does pay to question anything that doesn't seem right.

Kate

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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 Aug 30, 2011 1:17 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3378
Location: Vermont
Post Re: Locking my dad's door after mealtime to keep him up
Such a good point, Kate. When my dad had his first gout attack after moving to the ALF on a Sat. morning I was told by the med tech on duty that it was policy that on Mon. morning the ALF would contact the CNP to get him some gout meds.

He was in excruciating pain and he had some meds at his house an hour away but no way for me to get there (I was 500 mi. away). I know they don't like you taking meds into a facility, but come on, they were going to make him wait 48 hr. just to contact the CNP and then who knows how long before he was given any meds? I spent that whole Sat. trying to locate another person at the ALF. By the time I got ahold of the dir. at her house she said she'd get someone right on it. It was the next morning by the time my dad finally had his meds but she told me that the person on duty was totally wrong. The policy is to take care of the person IMMEDIATELY when they have something like this over a night or weekend and that I should call her if we ever have a problem like that again.

So, if a policy sounds crazy, or for whatever reason isn't working for your LO, by all means go higher up till you get your person taken care of. Lynn

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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 Aug 30, 2011 4:12 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Locking my dad's door after mealtime to keep him up
You are so right, Lynn! When Derek has needed an antibiotic on a weekend or at night, it was ordered and delivered right away. And pain medication is even more urgent. I'm so glad that most facilities nowadays treat pain promptly. Pain control is considered a very high priority issue now in all medical facilities. I always worry about our Lewies, that they are often unable to express their pain and that staff may not always recognize the signs. :cry:

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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 Aug 30, 2011 4:53 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3378
Location: Vermont
Post Re: Locking my dad's door after mealtime to keep him up
Yes, if this had happened a few months later, when my dad could no longer use the phone, I wouldn't have known he was in such pain. He called me and I tried to call several people at the ALF. When I finally got the director on the phone and she told me what the policy really was, I asked that she please reiterate that with the staff so this never happens again to another resident. My poor dad.
I had called some of his friends to have them get the meds off his dresser in his house and take them down to the ALF but I couldn't reach anyone. It was one of those "perfect storm" situations, and my driving 540 mi. (one way) to take care of this didn't make sense!!! The director told me that I could take his gout meds to him next time I was in MD, leave them in his drawer for future use even though that's against policy. She was upset that the person didn't take care of him ASAP when he complained of terrible pain in his glowing red toe. :x Lynn

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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 Aug 30, 2011 5:47 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Locking my dad's door after mealtime to keep him up
Thanks for sharing that story, Lynn. Many of us don't have lots of role models for being advocates. Good that we've got each other!

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Tue Aug 30, 2011 6:29 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3378
Location: Vermont
Post Re: Locking my dad's door after mealtime to keep him up
I felt like I was a gladiator sometimes, being thrust into an untenable situation where I had to fight like h*!! to get him what he needed. Getting him the medical care he needed in the hospital, in the rehab center and with the CNPs became a battle. I could write a book about all the discussions, requests, and then finally arguments about his care I had over the last few years.
People on this forum told me to move him to VT and I wish I'd done that when he first became ill. But he wanted to stay near the community where he'd lived almost all of his 89 years so he could still see his friends. He and I paid dearly for that decision. 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 Aug 30, 2011 8:36 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Locking my dad's door after mealtime to keep him up
Initially, I also had a lot of advocacy to do. The staff there clearly was not prepared for the extent to which I was willing to go to get the right care for Derek. Once they took me seriously, things got better. Yes, advocacy is hard work but for me it's just a quick drive to the facility and I see him and the staff twice a day. For Lynn, it was long distance. How frustrating that must have been!

_________________
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 Aug 30, 2011 9:04 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3378
Location: Vermont
Post Re: Locking my dad's door after mealtime to keep him up
Advocacy can be very hard work indeed, but absolutely necessary to make sure our LOs get the care they need and deserve. If you tend to not be the assertive type, either learn how to be more assertive or make sure some family member or friend can advocate for your LO!

_________________
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 Aug 30, 2011 9:21 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Locking my dad's door after mealtime to keep him up
LTCVT wrote:
Advocacy can be very hard work indeed, but absolutely necessary to make sure our LOs get the care they need and deserve. If you tend to not be the assertive type, either learn how to be more assertive or make sure some family member or friend can advocate for your LO!

Yep!

_________________
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 Aug 30, 2011 9:22 pm
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