Need some advice please????

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Red_34
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Date Joined Apr 2004
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   Posted 10/1/2008 5:20 AM (GMT -7)   
My Gma has been in the assisted living center now for about a month and a half.  I knew that moving her to a different location would make her more confused then she already was.  Well it seems she is getting worse.  They are still waiting for authorization from her insurance company to start her on Namenda.  She has a nephrostomy tube - this is a tube that goes directly into her kidney and has a bag attached to her leg, much like a catheter bag.  95% of her urine goes directly into this bag.  Without the bag, her urine goes thru her bladder, which by now is about the size of a walnut and she has no control over her bladder.  Urine just pours out of her bladder which is why she has a nephrostomy bag - well that and her kidneys were shutting down.  So here comes why I need some advice.  She seems to keep forgetting why she has this bag attached to her leg.  She has already twisted the bag so much by tying in up and whatnot that it keeps getting leaks and I've had to replace the bag twice already - these bags are not easy to get btw.  I even got a phone call from the center that one time she took the bag off (it unscrews from the tube) and refused to put it back on.  So of course I had to talk her into putting it back on.  Well this morning I got a call again but this time she cut the tube!  So now she has no way of connecting the bag because there is no way to screw the bag back on.  Does anyone have any insight as to how I can get her to leave her bag alone??  Her tube can get capped off so she doesn't have a bag, but then all her urine goes thru her bladder and she will go thru about 6 adult diapers in an hour.


 @--->--SHERRY--<---@
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SnowyLynne
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Date Joined Apr 2004
Total Posts : 1539
   Posted 10/1/2008 9:29 AM (GMT -7)   
Get her the diapers or pull ups double or tripple them & go on.She'll never leave the tubing or bag alone.......
SnowyLynne


Howlyncat
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Date Joined Jan 2005
Total Posts : 24909
   Posted 10/1/2008 11:28 AM (GMT -7)   
I am so sorry that she is going thru this as are you
I agree with snowy that maybe its best to double or triple her depends
I am hoping you get this straightened out asap...........

Take care
Lyn
  DX With Crohns,Pyoderma Gangrenosum,Anxiety/Panic,Fibro & Other DD
                                    Donate at  www.healingwell.com
 
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Red_34
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Date Joined Apr 2004
Total Posts : 23418
   Posted 10/1/2008 11:47 AM (GMT -7)   
Thanks Snowy and Lyn. Well I went to check out the damage and luckily she only cut the tube for the bag and not the nephrostomy tube. So a new bag can be screwed back on-when it comes in from the pharmacy. I took all the scissors and clippers out of her room so she can't do it again. I told the manager that they may have to go in and check in on her every hour to be sure she isn't messing with the tubing again and to help her change her depends. When I went to see her, I asked her why she cut her tube and she doesn't remember doing it. Sooooo we are going to play it by ear for now. I'm just glad that she didn't cut the nephrostomy tube because that would mean I would have had to schedule surgery for her to have it replaced.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis(?)~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3rd epidural injection 9/4, Neurontin and Skelaxin
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Howlyncat
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Date Joined Jan 2005
Total Posts : 24909
   Posted 10/1/2008 1:24 PM (GMT -7)   
YOU are doing a wonderful job with her and I am so glad you are on top of everything
I know it can be hard at times
I know all too well ..........

I am glad the damage did not cause reason for surgery and I DO hope they will check on her as you requested

Good idea about taking out scissors and anything she can cut it with

Luvs
LYN
  DX With Crohns,Pyoderma Gangrenosum,Anxiety/Panic,Fibro & Other DD
                                    Donate at  www.healingwell.com
 
Moderator @ Alzheimer's,Co Mod @ Anxiety/ Panic,Co Mod @ Crohns 
 
                                    FIGHT the FIGHT with all YOU HAVE
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     Listen To Your Heart,Look Inside Yourself,Understand You
 
 
 
                    


Aurora60
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Date Joined Jul 2006
Total Posts : 1249
   Posted 10/5/2008 11:25 AM (GMT -7)   

Hi Red, I don't know much about your situation but is it possibe for your Gma to have a catheter put directly into her urethra that attaches to a bag and then all the urine goes directly into the bag and just has to be emptied.  I took care of my Mother for 10 yrs. and she was completely incontinent.  Her urethra was like a sieve, no more muscle control so urine just leaked out of her all the time.  She eventually started to get UT infections so we had to switch to diapers.  I had special adult diapers which I orderd from a medical supply co. and they are much better than what you buy in the store.  I also got serenity pads, the maximum strength and put 2 of those inside the diaper and then double diapered her.  I got the extra large size even though she was tiny and that way the diaper wrapped around her completely.  I also had to limit her intake of fluids. That is not to say she didn't have enough fluid but given her way she would have drunk the ocean if she could.  I am sorry you are having such a difficult time.  I just wanted to share my experience and see if it might possibly help you.  It is true caring and love and commitment when you care for an elderly person.  It requires such devotion and knowing how it is all I can say is God love you and bless you. And do take the scissors away.  My Mom had some scissors hidden and I found her cutting the diapers off!

Gentle hugs,

Aurora

 


Red_34
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Date Joined Apr 2004
Total Posts : 23418
   Posted 10/5/2008 12:26 PM (GMT -7)   
She has to have the nephrostomy tube and bag because her kidneys were shutting down. She also has a stent. Before she had these surgically inserted, she did have a catheter bag but she was getting uerospepsis and would end up in the hospital with massive infections. So far, since she has had the nephrostomy bag and tube inserted, she has managed to stay out of the hospital. And unfortunately, gma doesn't have the choice of limiting her fluid intake. Her kidneys need it unfortunately. Thanks for the ideas though.

Btw, I got a call a couple days ago that they had to take her Depends away (of course they bring 1-2 every hour to her) because she was tearing the stuffing out of them as well as throwing away unused ones. But I got the new bags for her and placed one on her. I made sure to emphasize the importance to her that she has to leave it alone. Though, I am not sure she will remember by the next time I see her. :(
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis(?)~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3rd epidural injection 9/4, Neurontin and Skelaxin
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Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 10/7/2008 2:12 PM (GMT -7)   
Red you are doing ALL and more than you possibly can
YOU are truly a wonderful GD

Luvs
LYN
  DX With Crohns,Pyoderma Gangrenosum,Anxiety/Panic,Fibro & Other DD
                                    Donate at  www.healingwell.com
 
Moderator @ Alzheimer's,Co Mod @ Anxiety/ Panic,Co Mod @ Crohns 
 
                                    FIGHT the FIGHT with all YOU HAVE
               Look For The GOOD,Even At Your Lowest
 
     Listen To Your Heart,Look Inside Yourself,Understand You
 
 
 
                    


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 10/12/2008 5:27 PM (GMT -7)   
Hey Red . . . *sigh*

Do you sew?? I wonder if you could make a wide, stretchy band to go around her waist. Put a good wide amount of velcro on there and make it so she can't get to the belly. I think they sell something like this to slim your waist. It just goes around the body, you don't need to step into it. If you bought it a size or two too large, it just might work. They have them at Walmart.

They sure do find ways to get into trouble!! Just like 5 foot kids!!

Hang in there sis!! LOL . . . your gma is a real stitch!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

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tyno3
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Date Joined May 2008
Total Posts : 1081
   Posted 10/15/2008 9:00 AM (GMT -7)   
Dear Red 34. you've been so helpful and supportive to me in my plight with my farther, I feel the need to try and help you trouble shoot this problem. If her kidneys are shutting down, is she a candidate for dialysis, or is that premature? My stepmother is in a nursing home because her kidneys shut down, she and I were trained in peritoneal dialysis, we tried to manage her at home, then she started having strokes and since I also had to try and care for my father, there was no way I could take care of them both. Plus the house was falling down around us. Now my stepmother has a "cycler" machine which runs all night when she sleeps, it does the job of the kidneys and she has maybe 1/2 cup of urine output daily. This other bag you speak of, could it be wrapped in place with say an elastoplast bandage, and tell her she has a sore (leg, or belly, or whatever) and it has to stay there till it gets better. Or perhaps those back support belts that people use when they have to lift heavy objects, or perhaps a pair of pantyhose (extra large or leggings, maybe in cotton so skin breathes. Or even a pair of old fashioned çombinations (long underwear) For my Gram I found one piece pajammas, because she wouldn't leave her diaper on. I know how much adult diapers cost and feel your pain when you find them torn up or thrown away. I also know the insurance company's are more intent on taking care of their "bottom lines" than of caring for people. Love and lot's of luck, to you. I also cared for both my paternal Grandad (non-alzheimers), and paternal gramma, and she did have alzheimers. I used to get so upset by the way she was handled. It's so very, very hard, this road we're all on. Speedbunps at every turn and when things just begin to seem to stabilize, it seems another, worse, unanticipated, obstacle to our efforts, pops up. Some days I feel like throwing in the towel, but, that's not really an option, is it? 

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23418
   Posted 10/20/2008 11:18 AM (GMT -7)   
:) I didn't see I had other replies to my post until now - sorry. Very great ideas - thank you! For the past 2 weeks, my Gma has been on Namenda and so far I can tell a big difference in her. I took her out to lunch today and shopping and she was actually able to remember my MIL's name - which she couldn't do for the past year. She seemed more lucid and not as emotional. So I believe the medicine is working for her. And if that is the case then hopefully she will leave her bags alone now :)
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis(?)~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3rd epidural injection 9/4, Neurontin and Skelaxin
To help Healingwell - click here: DONATE
 
 
 
 

 
 


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 10/22/2008 4:08 AM (GMT -7)   
Red

How are things with GMA going now??
Has she had a better time of this and YOU too
of course
I pray both are doing better

Keep us doing what you do
It shows all others it truly comes from the heart

LYN
  DX With Crohns,Pyoderma Gangrenosum,Anxiety/Panic,Fibro & Other DD
                                    Donate at  www.healingwell.com
 
Moderator @ Alzheimer's,Co Mod @ Anxiety/ Panic,Co Mod @ Crohns 
 
                                    FIGHT the FIGHT with all YOU HAVE
               Look For The GOOD,Even At Your Lowest
 
     Listen To Your Heart,Look Inside Yourself,Understand You
 
 
 
                    

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