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    •  
      CommentAuthorNikki
    • CommentTimeApr 2nd 2013
     
    Julia, isn't it amazing the things we do that we never thought we were capable of. I am the middle child, always the peacekeeper. I really dislike any confrontation. Now I am a warrior! As are you dear ((Julia))

    It is tiring work, the mind always thinking, the heart breaking, no peace and little sleep. As hard as I know it is, I still feel the need to remind you that you must take care of you during this trying time. You will need to keep your strength up so you can help improve the situation for your DH.

    A thought, do you have social workers? Someone you could call to be not only your DH's advocate, but YOUR advocate as well. They could also help you through the medical legalities. That could be a big help to you! Someone else on your side, and often they will go to the care plan meetings with you.

    I do understand the need to keep everyone safe, BUT, that also includes your husband! There are many things in your posts that trouble, the food in his mouth is not only inexcusable, it is putting your husbands life at risk. Someone needs to be held accountable for this neglect. That he wet through all of his clothes and bed is troubling as well! I pray he doesn't get skin breakdown.

    Another thing I find disturbing is "I know this can't be right, the ward is like a prison, they just check him through a little trap door on the door, if he's sleeping they leave him." OMG!! Are you frigging kidding me, a trap door!!! Wow, that breaks my heart.....This is a human being, someone's loved one! Not a wild animal needing to be caged.

    I know you said this is a new ward, with only 4 patients, and they all have Alzheimer's. Why then are they kept in their room and checked on through a little trap door? Where is the socialization? The activities? The stimulation? Prisoners get better care than this!

    I KNOW you are fighting for all you are worth! And I also know how very overwhelming it can be. I pray you can find the right people to call to bring relief and help to you both. Even though it is a government agency, they still must report to someone, they are the people you need to contact.

    Do ask them to call you when they feel the aggressive behavior is starting, ask them to wait to add yet more medication until you can get there. 10 minutes is not an unreasonable amount of time. Perhaps you will be able to soothe him enough to not require more medication. Maybe that way you can get him out of there quicker!!

    You are both in my thoughts and prayer tonight. ♥♥
  1.  
    Thank you so much Nikki.
    that's exactly like it is...a prison. At the moment he's not capable of any activities
    They are either in their room or all together on the lounge, where they can watch them all together.

    I'm going to ring around and see where I can get more help. There's got to be more help.
    Again thank you...♥
    •  
      CommentAuthorNikki
    • CommentTimeApr 2nd 2013
     
    Julia, read through the information on this site.....http://www.safetyandquality.gov.au/
    If they can't help you I believe they can point you in the right direction.

    It's late here, 2:30 am, so I must try for some sleep. I will check in tomorrow to see how you are doing. ((extra hugs))
  2.  
    your an angel Nikki...there's so much information on there.

    Sleep tight.♥
  3.  
    I thought I'd try and ring the Nh again and speak to the Admin....they can not take DH back until the hospital feel he is safe enough to discharge. The meds take a couple of days to kick back. They said he's better there where it's quieter and has one on one monitoring... in the meantime it's a wait and see.
    I'm going to see if i can get hold of a social worker at the hospital tomorrow, also sit with Dh and and see if he eats anything...surely there should be some improvment. I'll stay all day if I have to.

    Thank you so much
    •  
      CommentAuthorNikki
    • CommentTimeApr 3rd 2013
     
    So glad you found the site helpful. Keep calling people, eventually they will put you in contact with the proper people.

    Yes it is very tiring but often needed to stay with our spouse during these difficult times. If you think you can do it, sitting through 2 meals in the same day would give you a good read on how he truly is eating and drinking.

    Many thought went through my mind, one I think that could be of help is to ask for your husband to have a swallowing test. Keep hounding them until speech theary visit him.

    My night was filled with nightmares imagining Lynn in such a place.......bless your heart, this has to be so very difficult..... ((more hugs))
    •  
      CommentAuthorNikki
    • CommentTimeApr 3rd 2013 edited
     
    Hi Julia, I just read an email from my sister. She said you do have Ombudsman's there, theirs is the number you want to look for. She gave me these two additional sites that she feels will help you.... (contact numbers are on the site)

    http://www.humanrights.gov.au/

    http://australia.gov.au/topics/law-and-justice/complaints

    Also I am not sure if it is the same there? But here (at least in my state) every hospital HAS to have a social worker. They would be a good starting point too.

    I pray for a speedy end to this tragic situation. ((hugs))
    • CommentAuthorLFL
    • CommentTimeApr 3rd 2013
     
    Julia, I just did a search on "hospital Ombudsman in Australia" and got the following link (hopefully it will work for you):

    www.abc.net.au/health/consumerguides/stories/2003/02/20/1837237.htm
  4.  
    You girls are amazing...thank you so much.
    In the state I was in with worry, I couldn't think straight.

    Nikki, I will look these site up...of course there has to be a social worker at the hospital. I remember talking with one there when he was in with a UTI, back early last year before he was placed...it was there that was suggested it was time for placment.
    It was mentioned the other day about him having a speech therapist look at him when he is more alert...Hugs to you and your sister.♥

    LFL, I did not even think about the Ombudsman, yes I will look this up too.
    I didn't go in to see DH yesterday...just could not handle it, plus I thought it would give him time to get through the drug cut back.
    I'll go in early this morning and stay there for his meals.
    praying things will be better today....Hugs ♥
    •  
      CommentAuthorNikki
    • CommentTimeApr 3rd 2013
     
    Julia, that is it right there, when you are in the midst of a crisis like this, it is very hard to think straight!! With all the emotions you must be feeling it is understandable! This is where a social worker will come in very handy. A level head (and a heart not breaking because it isn't their loved one) to help you through the process.

    I do hope today shows signs he is recovering some from being so overmedicated. I too am praying things will be better today, for you both ♥♥
  5.  
    All our arms are around you, Julia. Wish I could do something, but I can pray and think of both of you.
  6.  
    Thank you..I will post later today after seeing DH..
  7.  
    OMG..what a difference a couple of days make. Jumping up and down (so to speak) making a fuss paid off.
    First thing this morning I had a call from the hospital, to say how well Dh was today, they would love me to go in and see him...which I was going to do anyway.
    There he was sitting up playing with pieces of plumbing PVC pipes, threading/ screwing them together. They said he ate all his breakfast, had a high calorie Resource drink and drank a glass of apple juice while I was there. He tried to talk a little , smiled when he saw DS and partner...joked & smiled that he wasn't his son
    i stayed to see if he'll eat his lunch...that was a bit of a struggle, there were times when he wouldn't swallow each mouth full, but he ate at least half the lunch....loves ice cream!
    I think he still needs his throat looked at
    I was told they cut back his morning Clonazapm back to .25 yesterday morning,still had .5 at 8pm, but didn't have any at all this morning, they are seeing how he goes without that. They hope he will sustain this level of alertness and calmness, but not pormising anything, as things could change, and meds may need tweaking a little more.

    I found a social worker at the hospital that was happy and offered to act as go between on my behalf with the Nh and hospital...there just was not any communication between them, no one bothered to keep the other informed of his situation, and keep me informed!

    i'm feeling much better and happy now that things will get done to help Dh have a better quality of life, not in such a comotosed state.

    Without your support here, I don't think I would have had the courage and strength to push, get angry and make it clear I was not going to stand having DH in that state.
    Thank you so much...hugs all around...♥♥

    Edit to say...I do have photos.
  8.  
    Oh, I will keep all the links that you Nikki and LFL left me....I'll have them to look up and fall back on should things go that way again..
    •  
      CommentAuthorNikki
    • CommentTimeApr 4th 2013
     
    I am so glad to hear this! You must be so relieved..whew! Now they know not to tangle with you and hopefully they will not overmedicate to that degree again.

    I hope they will be able to manage the meds now and continue to improve your DH's quality of life. It must have made you so happy to see him interact and the smiles, they mean so very much don't they :)

    Job well done Julia!! ((Hugs))
    • CommentAuthorcassie*
    • CommentTimeApr 4th 2013
     
    So happy to read this, Julia.
  9.  
    Yes, I'm so relieved....I know the diesease will take hold more as time goes by, but I'll fight with all my being to have him managed better.
    Thank you.
    Hugs all around..♥
    • CommentAuthorLFL
    • CommentTimeApr 4th 2013
     
    Great news Julia! I'm glad you had the strength to fight for your husband. It paid off!
    • CommentAuthorJanet
    • CommentTimeApr 4th 2013
     
    So glad to hear the good news, Julia! You did a great job.
  10.  
    And this, peeps, is how a really good support group works!

    Julia, everyone is smiling for you because you were/are able to get the whole team organized for the benefit of your DH.
  11.  
    Julia this makes my day reading this, I am so relieved for you and your hubby. YES YES we have to STAND UP AND BE HEARD, be FORCEFUL!! I too am going through some struggles but not as bad as yours, and if I did not force the issue, it would not get resolved.

    Love you dear Julia.
  12.  
    marche....this group is a blessing, at times the only support we have.

    Coco...good on you, I have watched you take care of Dado, and fought on his behalf to make sure he got the best care.
    Keep fighting for him / both of you....geez, I didn't think I had it in me, I sure am stronger for all of this.
    •  
      CommentAuthorNikki
    • CommentTimeApr 4th 2013
     
    We are caregivers, HEAR US ROAR!! :D

    It shouldn't be, but it is a constant battle to see that our dear spouses get the care they need and deserve. It isn't always MAJOR things like you have been dealing with Julia, but we do need to be ever vigilant. A facility is only as good as the staff currently working there.

    Kudos to you both Julia and Coco!! ((hugs))
    • CommentAuthordivvi*
    • CommentTimeApr 7th 2013
     
    very good news julia.! it takes alot of fussing to get the care they need. now you know you are up to the task!
    my best,
    divvi
  13.  
    Julia, for some reason I just started reading this thread. It is quite amazing how taking care of our poor LO's with dementia can be a hellish nightmare, but can bring out strength we never knew we had. Keep on fighting for your hubby.
  14.  
    Thank you MarilninMD....it was worth all that fighting and stress, he is doing much better now. Meds seem to be sorted...for now!
    Yesterday he had put back on some weight, eating by himself, talking and walking again...a bit shakey, but better.
    It's got to be good when as I was leaving he said, "make sure you lock the door"....just can't help himself...lol!

    Now if they can just find all his own clothes, that seem to always all be in the laundry...yesterday day he was wearing a ladies blouse and the same pants for the last 3 days...really!
    •  
      CommentAuthorNikki
    • CommentTimeApr 8th 2013
     
    Such wonderful news Julia!!! You must be delighted, and relieved! I pray the improvements continue and he get the heck out of there. ((hugs))
    •  
      CommentAuthorNikki
    • CommentTimeApr 12th 2013
     
    Julia, how goes the war? I have been keeping you both in my thoughts and prayers ((hugs))
  15.  
    Hi Nikki,
    Thank you so much.
    Finally, Dh was dicharged back to the Nh on Thursday, so far so good. They were shocked to see how much weight he lost, his decline and how unsteady he is now walking.
    They were so lovely, hugs all around and he actually said he missed them..who knows!....and all of a sudden all his clothes turned up with him...amazing!
    The first day back all he did was sleep, he had only just had his fortnighly Physc needle....they said it takes a couple of days after the needle to settle.
    Still having a bit of trouble swallowing, so the food is cut very fine or pureed now, doesn't seem to like it that way as much. He now needs a bit of help feeding, but they are keeping up the high calorie drinks every 2 hours to supplement.
    His colour is good and he seems to be holding his head up more than before. At times he gets a little angry with frustration, I've told them if he gets difficult and aggressive again to ring me. I would go and sit with him all day if I need to...I don't want him back in hospital and have to go through all this stuff again.
    Today it took me longer to get away, didn't matter what excuse I tried to pass on...so that's a sign he's more his old self and alert...

    Edit...while DH was away, 3 new ladies are now in there...one chatty biddy tries to help, going around telling the carers how to do their work and telling everyone to "eat up dear"...I warned them, if she gets right in his face he may strilke out at her...That's all he needs to set him off again!
  16.  
    Julia I sure hope that new biddy stays out of your guys way!

    Thanks to Nikki for asking about you. Sometimes we get so wrapped up we almost...forget about what is happening with ALL OF US. Julia we love you so, and on my other thread you said you had nothing to offer as you are in a different country.

    Of course you know you have so much to offer, I have come to love you here. And, we are kind of close in a way, being out in the wild Pacific.
    • CommentAuthorElaineH
    • CommentTimeApr 14th 2013
     
    Julia, I'm so glad that your DH is back at the NH. I have been following your story & I'm sorry I never posted anything to you. I'm sorry that you had to go through all the heartache at the hospital. It's hard enough dealing with this disease & then you have to deal with hospital staff who aren't doing their job. I don't remember if I posted anything about this, but my DH was also transferred to a hospital an hour & a half away because his aggression became to hard for the staff at the Veterans Home to handle. He was there for 2 months (January & February). I couldn't go & see him the first 2 weeks he was there because I was sick & after that I only went once a week. He did get good care there, but he also lost weight (I don't think he ever ate breakfast because they brought it to his room & I'm sure he didn't know what it was). He is back at the Veterans Home, but he has declined quite a bit. I know part of it is the medications he is on, but a lot of it is that he is declining & the staff can see it too. Your DH sounds more aware of things then mine is. When I want to leave I get a staff member to distract him & I leave & he doesn't seem to even remember that I was there.
    Hopefully now you will be able to get back to some kind of routine.
    Hugs to you!
  17.  
    ElaineH...I do remember reading your post about your DH. I hope your Dh is settled now too..as your Dh was leaving the hospital, mine was just going in. It was a 2 month nightmare, I had to threaten to take him home and demand the meds cut back

    Yes, he's back at the Nh, only just a week ago. The staff were shocked to see how much weight he lost and a huge decline
    He's still not eating much, seems to have trouble swallowing. I sat with him yesterday and feed him .
    You wouldn't believe it, just as i thought he was settling. last night I got a call at 8pm to say DH had an "incident" with another resident, it was her duty to let me know...so here we go again!
    He is his own worst enemy. I'll go in first thing this morning to find out what happened.

    P.S. maybe I should start another thread called..."here we go again"
    •  
      CommentAuthorNikki
    • CommentTimeApr 14th 2013
     
    Ahhhh Julia, so happy to hear he is back at the nursing home, but very sorry to hear of this latest incident. Sadly no, he isn't his own worst enemy, Alzheimer's is. Poor bugger, he has no control over it or how he behaves. Does make me wonder what they are doing to avoid these situations.

    We have a man where Lynn is who has a hairline trigger to aggression. It is the staff's job to be on top of ALL residents and to do all in their power to avoid these bad interactions. I have noticed at Lynn's facility these types of situations always seem to happen around meal time, when staff is busiest feeding the residents. With known "problematic" residents, they keep them close to an aide at these times. If need be he eats in his room, with an aide right there or nearby. I hope they are doing this with your DH.

    I know this sounds a bit twisted, but I am thankful Lynn's aggression never went beyond inflicting it on me. That was hard enough... I truly don't know how I would have handled the situation you and some of the others have had to face. It must be beyond frustrating! You are doing all you can to keep them safe, yet you can't count on the staff you have entrusted his care to. It is hard enough dealing with the heartache of placement..... So sorry you are dealing with this ((hugs))

    In your DH's cocktail of medicine, is there an appetite stimulant? Also have they given him the swallowing test yet?
  18.  
    Hi Nikki.
    I'm just back from the Nh. Your right it's not his fault...I warned them to keep others away from him.
    The speak theraphist was there this morning, and she thinks he has trouble swallowing so a pureed diet is in place now. He hates it, yesterday and today while I was there, I mashed up the normal meal with a fork and feed it to him, at times he was able to feed himself, but they won't take responsibity if he chokes.
    As far as I know, he is not an appetite stimulate, just extra high calorie drinks....I think he has put some weight on, he's looking much better.
    They don't like them to eat in their room, only if they are too sick...There's 3 carers to 16 residents where DH is, more women than men. I guess it's easier to have them all together to keep a close watch on the lot at the same time.
    He does seem to be more alert and talking better.

    What happened was...Dh and another man were trying to get through a door at the same time, both being very slow, Dh hit the other man in the chest to get him out of the way...oh dear, just thinking about it seems quite funny really. On Saturday DH hit one of the new ladies in the face when she got up close and personal....everyone is fine, but of course that's not acceptable.

    Thanks Nikki...trying to take it one day at a time, that's all I can do.
    •  
      CommentAuthorNikki
    • CommentTimeApr 14th 2013
     
    Julia, I am delighted to hear your DH is looking better and has gained back some weight, whew! Wonderful too to hear he was able at times to feed himself. Lynn is on all pureed foods as well, it DOES take time for them to adjust to the different textures and flavors. There are foods that Lynn use to love that he now does not like only because he doesn't like how it tastes pureed. And there are foods he now enjoys that he never ever would have eaten before! Just one more crazy aspect of the disease.

    I have found for Lynn he now will spit out any food that has lumps in it. Goodness! Nothing like having your spouse spit out a lump of potato clear across the room. It isn't funny, but we just have to find some humor don't we :) Another thing I noticed is that the vegetable and some of the beefs are bitter when pureed. What I do to help with this is put some brown sugar in his veggies, and with foods like bland potato, I add a bit of ice cream to the spoon. Lynn has a sweet tooth so this works great.

    I was thinking about what it must be like to get a call about your DH having an incident, I imagine it must be much like the principal calling to tell you your child has misbehaved. But of course there is a difference because our poor buggers don't know any better. There are two really cranky old ladies at the nursing home, when their paths cross it is always a guarantee for at least a verbal battle. I know it is not funny, but I can not help but laugh when they start spewing get out of my way you old battle-axe! (and much much worse)

    No it isn't acceptable, but again I say it is the staff's responsibility to keep the lady out of his face and to run interference when there are two people trying to go through the doorway. I know they can't be everywhere at once, but ... hire more staff!

    I hope your DH continues to improve. ((Hugs)) and encouragement ♥
  19.  
    Thanks so much Nikki....gosh it must be so late into the night there now.

    Yes getting a call from the Nh late at night scars me a little, I know there must be something wrong... I keep thinking and dreading it might be THAT call, my heart starts pounding, So far this year 4 have passed away already.

    I'll take on board your tips on adding a little sugar to the beef and vegetables if they taste bitter...now I would not have thought that to be, and I sure haven't tasted the pureed food yet. The staff should taste it, I wonder what they would think!
    Dh will also spit out what he can't chew after it's gone around and around in his mouth.

    Government keeps cutting back on funding, we just got letters to say we have to pay for their daily living things that were included in the fee, like toothpaste, combs, razors etc...and pads at cost price. There's no way they will hire more staff...less profit!

    Thanks again Nikki..sleep tight.
    •  
      CommentAuthorNikki
    • CommentTimeApr 15th 2013
     
    Yes it's 3:30 am here. I gave up fighting sleep and took my Benadryl so sleep should come soon :)

    That is too bad about the cost cuts, all these little things add up as I am sure you well know. Here there is no federal law regulating aide to resident ratios. It is sooooo frustrating! Some days they can have 11 or more people each, impossible!! I am working to get a law passed but it takes a lot of time grrrrrr

    *yawn*......please do keep us posted! ((hugs))
  20.  
    Nikki I have been wondering and hoping that your recovery from your surgery has been healing, my goodness what a trauma! You have such a nice head, and heart, here is to perfect health for you.

    Julia I am just so empathetic to what you and your man are going through. Just don't know what to say except hoping for a better day.
    • CommentAuthorCharlotte
    • CommentTimeApr 18th 2013
     
    Keep an eye on the personal things they will now be charging you for, especially if they share a room. I have seen aides needing a dry pad or diaper and instead of getting more will grab from the roommate.

    Many here in the states require the family to supply many of the personal items
  21.  
    Thanks Charlotte, I will watch.
    I have told them I will supply his personal items, but the pads have to come from the Nh...luckly he is in a single room with his own bathroom.
    With the pads I will have no way of knowing how many pads they use, but they are at cost price...if it seems excessive I will say something.
    •  
      CommentAuthorNikki
    • CommentTimeMay 31st 2013
     
    Julia, I am wondering how you and your DH are doing? ((hugs))
  22.  
    Hi Nikki, thank you for thinking of me.
    I have started a new thread on my update..
    it's all been too much, I have been having counseling, but really it doesn't help much. I've been reading the posts, but find it hard to put into words what I want to say.