We had a family meeting with Dr's at the Phys (spell) hospital today...where they are trying to adjust his meds due to increased agression I was shocked to see Dh looking like he did, slumped in a chair head down oblivious to everything around him...like a zombie. It was 1.30pm and when I tried to wake him, he still had food in his mouth fom lunch time 12.00...each time he tried to talk some food fell out, I thought he was being sick. Nurses and staff just walking around / by him....no one checking on him. We called the nurse who was going to try to get the food out with a spoon...now really! DD got so angry and and asked for some water where she gently gave him to help swallow the food. I was so upset and could not stop crying! At the meeting they told us he's been taken off all meds and now are trying Zuclopenthixol monthly injections....trouble is he still has Repiredome in his system and the two drugs are making him like he is, untill the respiredome works it's way out of his system....they are trying this for two weeks, if it doesn't help they will try another drug..
Has anyone's dear spouse been on this drug or have you heard of it being used....I googled it " not siuitable for dementia"....Please I would love to know if anyone has any knowledge of this drug... I am beside myeslf with worry... thank you so much...
Dear Julia, I haven't had any experience with this drug, but I've read on this site that it takes time to get our loved ones on the right meds. Plus, it takes time to get the old ones out of the system. I'm glad that you have your daughter there to observe and help. With the two of you there and time working on your side, I think you'll find that your dear husband will improve. It's hard, I know, to wait, but we're all rooting for you. Love and hugs from Canada to Aussie.
Thank you mary75*. The waiting is so hard, I'm so haunted by the image of him yesterday, I couldn't sleep last night. I tried asking him if he knew who I was yesterday, but he just mumbled something and kissed my hand, I'm taking that as he does....he did mange to softly say.." I wish, I wish I was gone.". That broke my heart, I think he's had enough. I'll not go in today, give him time to perhaps get settle a bit more with this new drug, I visit tomorrow when weekend visiting hours are all day.
So sorry to read all this , Julia. The drug you mentioned, zuclopenthixol (also known as clopixol) is used in dementia in Australia and is an anti psychcotic similar to risperdone. If it works it will take a few weeks to kick in. Hope that you were able to rest last night. Will your daughter check on your DH today? The nursing staff sound dreadful, the spoon incident made me cry. Take care and please update when you have time.
Thanks Cassie*. I could not believe how he was, Such a big change from Sunday to yesterday. Dh is an hours drive away from all of us, DD single Mum, works in Bunnings and can't afford to take too many days off work, I'll ring up the hospital later today. Week days visit hours are 3-5 pm, then 6-8, which is a bad time in peak hour freeway traffic. I go up first thing tomorrow, my best friend a retired nurse will come with me.
julia your story made me very angry. insist that they give your DH some softer or pureed foods if this med is not allowing him to chew normal food. there is no excuse for them leaving him with food in his mouth! he could choke. these meds they use are super power drugs and can cause them to be completely out of it til it kicks in and tolerate it or not.
dont accept excuse, make sure your DH has the attention he NEEDS while adjusting to this new regime of meds. it could be said that it is a form of restraint if the poor dear cant hold his head up and has unchewed food in his mouth. just terrible.
make your voice heard and that you will be checking to see he is being cared for adequately while adjusting his medicines. if you must file a complaint. they will know you are on top of it and will give him more attention. divvi
Divvi...that was my first thought,I said that to my daughterI that he would choke. I was in such an upset state, it all seems surreal now...I think my daughter did mention about mashing his food up. Until then he was eating normally. I heard the nurse say to him " didn't you like the sausage". Divvi, I will be heard, I'll be making sure they know I'm watching everything. I will not tolerate bad care. thank you so much.
Julia, does the hospital adhere to the visiting hours? My DH was in hospital only a few times but I stayed right by his bed and no-one really cared. Or could you stay somewhere close by while he is there? You could say that you are there to supervise because of the inappropriate care that you have seen and if they object tell them that you will make a formal complaint about the food episode.
I did complain about the visiting hours Cassie*, They said they would make an exception for me seeing it's hard for me to get there in their times, so i will go a couple of times during the week days, to make sure dh is getting cared for properly... they said mornings are taken up with Dr's and tests, to bad, they will have to work around me! They said Dh gets quite fiesty...I think I will have to do the same...can you tell my anger is coming out now!
Visited Dh today....what a difference a couple of days make.I had not stopped crying since Thursday, but seeing him today I feel so much better. It seems the Respiredome is working itself out of his system and the Zulclop... has settled him a bit. They said he's still a little agressive, and they really think it's his abusive childhood that he may be going back to causing this behaviour. I'm hoping he'll be just that little bit better still tomorrow! There's even talk there might be a bed in the hospital near me, that he can be transferred to...they just need to make sure he has no adverse side effects from this needle....so far so good.
That is so good to hear, Julia. And if they move him closer to you, that will be even better. Maybe they have a point about your DH's traumatic childhood? When you wrote about him hitting out at an aide I did wonder if it was just a response, to an invasion of his personal space.The NH staff do tend to get in close, pulling at clothes or touching when it is not wanted. There has been so much for you to worry about lately, Julia so hope that this is the start of better things for you and your DH.
Thank you Coco, Cassie*....I so hope he continues to settle. Family and I know what sets him off, we have told them about his childhood and it's written in his medical file, I'm having to repeat it over and over, and he hates being told what to do., I know that can't be helped, he now needs to be told what to do. They don't seem to read the files...it's all on computers now that can be looked up at any Government. facility patients get transferred to. Anyway today's another day, lets see how he is today. I'm hoping to know about the hospital move on Monday...
That's exactly right Charlotte...it's all in how you say something, and the tone of voice. Thanks Divvi....today he was about the same as yesterday, at least it's better than before, just very tried and sleepy.
Dh has now been moved closer to me, just 10 minutes away....so much easier for me. He's in a new facility just opened last week, funded by our government. This place is part of our local hospital, and where DH will be till he adjusts to new meds. Beautiful new secure place, just 4 patients, with one on one care....what a big difference from the last place. What really gets to me is, I'm having again to relay all about his childhood background, and what might set him off, but I guess it's better they know what to watch for He's refusing to take simple pain relief for his neck, I managed to get him to take Panadol crushed in ice cream, folowed by a glass of water . I really think he's had enough, and doesn't want to be here anymore
Julia, you must feel so much better to have your DH close. And now that you have (again!) explained his issues perhaps his care will be of a higher standard. Sad that he is so down but no wonder, after all that he has been through lately. Maybe they could throw an anti-depressant into the the new med mix?
I've brought this thread up again to update on DH.. Well, it's been nearly 5 weeks now that Dh has been in hospital near me, to have his meds adjusted. Yesterday I visited him at 10.30am, he was still in PJ's asleep on the bed. I went to wake him he was soaked right through all his clothes and bedding..I called the nurse they showered and changed him. He had not had breakfast, so they brought him breakfast and a Resource protien drink , he is so medicated, hed had nothing of it...all he wanted to do was sleep. That's it, I've had enough, he's not eating, he has lost so much weight. I told them I want him back at the nursing home and the meds cut back. They can't get him any calmer than he is now, next step would be right out! Well being easter weekend, everything has to wait till next Tuesday...argh! He is now on Sodium Valportate, Clorazapam and that Zuclopenthixol fornightly needle of which has now the dosage upped a bit more. He can hardly walk now and when eating he just keeps the food in his mouth without swallowing, till he can't breath and nearly chokes on the food....not happy, so much for quiality visits i was promosed, it been anything but... He really can't take much more, I feel so sad for him. He was calling out for our daughter yesterday...
Julia, please call for backup and make your views heard and heeded. If your DH remains in that over -drugged state he will,either choke or fall out of bed and injure himself. You must be distraught, to see him like that and the mongrels, to leave him soaking wet in his bed. It really suits the hospital staff at times,to have the patients "compliant" which translates as "over sedated and quiet!" Don't worry what they think of you Julia, just start "barging" until you have acheived the required result. Good luck Julia, (hope that I haven't said too much) and sending you strength and courage.
Mary75*...thank you, I'm beside myself, with worry, not happy at all.
Cassie I was waiting for your comment...you have not said too much at all. 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. I forgot to add that the other day I got a call that DH fell out of bed, they heard a loud bang and when they checked him he was sitting on the floor by the bed. They checked him over, everything was fine, no bruises or cuts...I can't work it out, they don't know what happened. The ward is new, just 4 Ad / Alz patients....all they do is sit around observing them, they do nothing! I'm going back there later today...to see how he is. They keep changing his meds, they said to shower him, they give him a sedative...surely he can't be that bad, he doesn't have the strength to swat a fly.... poor dear is so out of it..
Julia, when you go back today ask to speak to someone in charge and say that you wish to make a complaint about his over sedation (which caused the fall out of bed, no doubt) also for allowing food to sit in his mouth, leaving him soaking wet in the bed....... and I am sure that you will have lots more to say! But please speak to someone today and let them know that you are going to make an official complaint. I spoke to someone who works in a dementia unit yesterday and she said that there are so many new guidelines now that as soon as a patients' spouse complains the admin and staff do everything possible to pacify the spouse and thus help the patient. Those without an advocate are left like your poor dear DH. The time for politeness has long passed! Good luck Julia, wish that I could come with you today, for moral support .
Thank you Cassie, I wish you could have been with me too, I think you would pretty much know how the system works here. I'm just back from seeing Dh again,today he is even worse than yesterday. Not only he can barely walk, but now he can't talk....struggling really hard to say something but nothing comes out. I feel like he is trying to tell me something. My DIL came with me today...I made sure they knew I meant business, the carers even agreed with me that he is over medicated, but they said they are just following the Dr's orders and nothing can be done till Tuesday when his Dr returns from the holiday. He had been showered and shaved, they said he's eating well, but I don't believe them, he can't stay awake long enough to eat and he's lost so much weight! Another carer said when came he back from some days off, he was surprised to still see him there. He said I was too nice not to have said something sooner..
My daughter is coming down to go with me tomorrow again, she will have her say, she's not to be messed with either....Tuesday no matter what he's out of there and back in the nursing home. I am so angry now, Dh is only a little man, it doesn't take much to knock him out.
Oh Julia, how dreadful for you. It must be breaking your heart to see your dh like that. Stay angry until tomorrow and between you and your daughter it will get sorted. Perhaps you could have a few glasses of a good red,with your dinner tonight?? You will need a proper sleep to give you strength for tomorrows' battles! All the best.
Julia: If I remember correctly you live in Australia, so protocol may be different than the States. But that said, you should ask, in an I-mean-business sort of way, to speak to an administrator. They may tell you it's a holiday, but that facility is their responsibility, and someone is on call. That goes for the doctor too. "He will be back after holiday" is not acceptable. There should be someone covering for him who could do a medicine adjustment. Leaving without call coverage is abandonment and malpractice here. If you get excuses, or even if you don't get excuses, get your camera out and start taking pictures. Document everything. Take a picture of the medication sheet, if you can. If they say your DH is eating, then tell them to feed him, that you want to see it. Nothing makes facilities squirm like photographing the evidence.
There also might be a governmental agency that oversees these facilities (and the doctors practicing at them). They need to be contacted and you may insistent on an investigation. Your DH may be a difficult case to manage but that is why there are professionals with lots of training. If it were easy, your DH wouldn't be there. Figuring out what meds work IS THEIR JOB!
Before you start this, though, you might want to sweet talk with some of the staff and find out if that doctor is the only doctor on staff, and if they had a LO in such a situation, what doctor would they want. You might also ask if they see this sort of thing often and if they worry about the patient choking on his food or his own saliva.
Good for you for taking other family members with you. The more people who witness this, the better. Do know, too, that if DH is on a ton of medication, he will need to be weaned slowing, so merely removing him at this point might not see an immediate improvement. Good luck to you.
julia, so sorry to hear of your poor DH condition. yes it takes a very savvy team of folks to get this medication to work just right in a blend to keep them 'compliant', which in my own opinion does not suggest total oblivion but the 'just right' cocktail to keep them in the functioning zone where they are easier to handle and without alot of aggitation. i hope your message comes across to his care team loud and clear. best wishes for a good outcome. divvi
Hope that you have managed to have some sleep, Julia. marche has made some good points, hope that they will give you some extra strength and guidance. Had forgotten about the camera! Perhaps your daughter could do that? There would be some very telling shots. Good luck today and stay strong. (And as Divvi said, compliant "and functioning" should be their aim.)
Thank you so much everyone, it's good to know I can come here and pour my heart out, there's always someone there with compassion and good advice. I do carry a camera and have taken photos as he progressed on new medication. Just that yesterday I was so upset to see him at this worst condition, I was concentrating more on getting my message through to them. I made it very clear that I want him back at the Nh and meds cut back, the carers agreed with me that he was too medicated. Also,I'm not sure if there will be anyone in Admin at the Nh because of the Easter Monday holiday here to accept DH back, the paper work, handover etc..it's like everyone goes on holiday no matter what....I will ring and inquire, if there is, I'm back at the hospital demanding something be done. Of course there has to be a Dr on call at the hospital, but they tell me because he is in a special mental health ward, he has to be seen by the specialist Physc Dr who is away till Tuesday. Marche...I don't think I'll be able to see the med sheet, they barely tell me what meds he's on, but I'll try, I have seen him trying to eat, when he plays with the food, moving it around the plate, I have seen a carer come and take it off him and give him a small tub of ice cream...as if that's enough nutrition to keep him going....no, not good enough for my liking!
DD can't come down today, it's over an hours drive for her to come, but I'll see if DS #2 who is 10 mins away, and has just had a Rota Cuff shoulder op can come with me for back up...
it just 6.45 am here, so as soon as it's 9am, I'll be on the move...
Here medical records are the patients property - at least that is what the doctor I saw the other day told me when I asked for a copy to take with me for the next doctor. I was shocked at his reply. If you have his medical power of attorney you should be able to get a copy of all his medical files. I always wonder what they are hiding when they fight us seeing our own files or our loved ones.
I don't know if I really achieved much today...I'd like to think so, we have a family meeting with Dh's specialist physc Dr tomorrow. DSon was in a lot of pain with his Rota Cuff op, so my best friend a retired nurse came with me instead.
Dh was pretty much the same as yesterday, all he wanted to do was sleep. I managed to pin down the nurse looking after him long enough to tell her I want his meds looked at again and cut back....his condition is not good enough for me. I was not happy and I would take him home if the Nh doesn't take him back. She agreed and also says he's too medicated....said she will have everything in writing for our meeting with the Dr tomorrow, she said Dh is still agressive and resisiting to shower etc...so they doubled his Clonazapam med to .5mg twice a day. She feels they could cut it back to .2.5 in the morning so he could be not so sleepy, keep the .5 for night time,they also upped the needle med and they just need to work out which to decrease or increase. The nurse said he would have to stay longer to monitor him as they cut back the meds. He tried so hard to eat today, he was putting the food in his mouth, spoonfull after soonful, but now swallowing, trying to breath thru his nose...than he finally had to spit it all out again, not getting any nutrition. He knows he's not well, he knows more then we give him credit for....he still can't talk, but he did mange to whisper to me, "Help me, help me"....OMG, my heart just was torn apart, his words to me is all I can think of now, over and over...I looked over to my friend and she started to cry...now she has worked with dementia patients, seen it all. My friend took over from me trying to wipe his mouth, with food coming out...I had to go outside, I just could not handle it any longer... Something has to be done and soon... Thank you....I just had to post this tonight before I go to bed..
oh julia, i do hope you can sit with the drs/nurses, and director of this facility and work out a decent care program for him. it would break my heart to hear those words as well. not acceptable. ask that his foods be pureed or on a soft diet for him while they have him so medicated. it will help to have someone to feed him as well just so you make sure hes getting nutrition while they work out his meds. boost, ensure, or the likes if yall have something similar over there too mixed in an icecream shake that he can suck down is much easier on him than trying to use a fork and chew difficult foods. soo sorry to hear of this i know you are livid and so very concerned. make your notes of what will be done at the meeting and keep details of their input. and those pictures surely help. best of luck! divvi
Julia, you've been given great advice by all, particularly marche. Yes complain, complain, complain. And keep complaining. Keep going up the chain of command and by all means, take a 1000 pictures. Since you have a POA and guardianship, make sure the hospital has a copy of both documents in your hb's file and demand to see his records and request copies of them immediately. You might be surprised what's written in them. By all means you should have copies either before the meeting on Tuesday or they should give you them at the meeting. Bring all your notes and picture to the meeting. Also make sure you bring someone with you who can takes notes on what's being said and deciided. This way you can fight the battle without having to worry about who said what and what decisions are being made. What I found very helpful when dh was in a similar situation, I sent a copy of my notes of the meeting to the treating physcian as well as the hospital administrator that attended the meeting and notified them that this was an official and permanent record of the meeting and if they had no changes to the documentation then it would be considered he approved documentation. divvi is right-require they give him pureed foods and that there is always someone there to feed and monitor him. I would also demand he be evaluated by a speech therapist for a swallowing evaluation. I truly know how difficult this is because I went through this almost 5 years ago and had to be a warrior; thankfully it worked out for us. Good luck.
Julia, you are very determined to help your dh and you will so don't despair. Today is a new day and good things can happen when you persist. Divvi suggested Ensure and yes, it is available here,vanilla & chocolate so quite palatable. You can buy it at the chemist and if you could help him drink that whilst you were there, at least you would be certain of some nutrition. Best wishes, Julia.
Today's another day, I'm feeling a bit better today....this morning at 11am we are meeting with his specialist physc Dr and care team, I'm ready with my "list"....questions to what I want answered.
That nurse yesterday was the only one that explained things in detail to me...helped me understand, he may need to stay a bit longer now to monitor him as they cut back his meds. She was very sympathetic to my concerns and agreed he was too medicated, at least I have her on my side, she will be at the meeting today with us.
Dh is already on soft food, and even the Resource high enery drink they gave him, he still kept most of it in his mouth without swallowing till he could not hold it in anymore. LFL...That nurse did say she will ask for a speech therapist evaluation, so I glad that you mentioned it, I will make sure it is done.
We'll see how things pan out today. Thank you all for your support and best wishes...
When we arrived at the hospital this morning DH was right out of it, alseep in a chair, no movement, no response to us talking to him trying to wake him. He had not had any breakfast, and the way he looked I doubt that he would have any lunch. We had the meeting with the Dr, and this morning they have cut back the dosage of Clonazapam by half, hoping that he will be more alert during the day, and be able to eat his meals....if anything, to me he seemed a lot worse than yesterday. They said it could up to 72 hours before the med wears off a little and they see a change / improvment on his condition....they still say he is agressive when they try to change him, punching even biting the carer, it's so hard to believe that, he has no fight or energy in him. DS#2 had not seen him for a couple of weeks and was very sad and visably upset to see him like this...DS#1 just doesn't go to visit him...upsets me, but I have to let it go. It's just so hard, not being able to do anything but watch and hope he'll start eating again soon.
Julia, I have been typing and deleting for the past 50 minutes. You have at least had his medication reduced by half so that is one up for you, well done. The Clonazapam will take a little while to get out of your dh's system so perhaps the 72hrs will show an improvement? Perhaps they need to reduce the injections as well? What about fluids? And how can a comotose man be aggressive? Can't they change their approach to him when changing or showering him? So many questions but not many answers for you. You must be exhausted so hopefully things will improve over the next few days and you will be able to get dh back to the nursing home.
Cassie, thank you. They actually upped the injection from .5 to .75....i just don't understand them, he's just a little man weighing only 53 kilos now, it doesn't take much to knock him out. As I'm not there all the time, I don't know what fluids he's taking. They said he gets 100ml bottle of Resource energy drink 5 times a day...I can only take their word for that, but I'm thinking he needs more than that. Yes, he's so out ot it, how agressive can he be...really! I asked if staff are trained to handle a little agression, they they have to keep everyone safe...no direct answers. They said they will keep him as long as it takes, it could take longer than just a few days. Yes, not enough answers to my liking....but what can I do, besides bringing him home, which I have threatened to do...and they said they would not recommended that as i wouldn't last more than a few days caring for him. I'm tired Cassie...also having to run Ds with shoulder op around, his partner is here on a visa to marry, and doesn't have an Aussie license to drive yet. Tomorrow is another day....thank you.
Julia, forgive me if I'm out of line, but I think your son and partner should be told,"I'm tired. Do you think you could find another way to get around?" Having been as tired as you are (similar situation dealing with poor and negligent care), I know that you need help and mustn't drain yourself with any extra errands for anyone else. I'm sure your son and partner will understand. Right now they are so caught up in their own lives - and that's understandable - that's all they can see. You're the king pin for your husband, and you need to conserve your energy as much as possible.
Listen to Mary, you cannot possibly be taking care of anyone else at this time. As she said, Julia, you must look try to look after yourself or you will crash and burn. You deserve more answers from the drs and I would keep pushing if I was you as the situation is still most unsatisfactory. Do you think that you could park yourself by dh's bed for a day, to give you a more informed view of his treatment? Could you also contact someone in aged care, to give you some insight as to what to expect in situations like this? Emily and MarilynMD have both been in your situation Julia so hopefully they will be back on the board today with some good advice. And Nikki where are you? Best wishes to you Julia.
mary75*....Thank you, no your not out of line. Yes, I told DS that I'm taking today off for myself, they will have to bus it to where ever they need to go. Today his lady has English lessons to attend, there is a bus stop for them just a few minutes away from their place. I'll go and have a talk to the nurse in charge at the Nh...surely she must have some connection to the hospital. she did tell me if Dh gets very sick to have hime brought back to the NH and they would look after him.
cassie*....I seem to get the same answers to my questions....it takes time, there a fine line to getting the meds perfect. One tells me he was good that morning, another tells me he had trouble changing his pad and getting him to shower...so what does it matter if he doesn't shower for a day. I think I stay away today and go back tomorrow see if there any improvment by then....I'll will sit there all day Cassie if I have to!
Just have to tell you...late last night I had a phone call, my first thought was "hospital, what's happened"....but it was DIL, Ds#1 wife...asking how dh is, son is away down south till today. Well I could not contain myself any longer I had to ask why son doesn't go see his father, if perhaps he can't handle it. How can he come see me but not his father , just 10 minutes down the road...she didn't say anything for a few seconds, then said , it's up to him, if he wants to go she would go with him. I said if he can't handle it, just say so, I will understand and respect that. It's like they think it will go away if they egnore the situation...(spellings not good today) I said we will need tohave a family meeting just so we know everyone's opinion and wishes should things get worse So, now he needs to pass by my area on the way home, I'm wondering if he calls in...I'm sure she would ring to tell him what I said. I'm tired of being nice!
Good for you Julia, keep on speaking out. Perhaps it is time to let ds1 know that he must step up now as you need him. Could you ask him to call on dh today as you are unable to go? It might just give him the needed push or at least open up the lines of communication between you? As you said, the time has passed for "nice" so start demanding what you need now to help you and your dh. It is an intolerable situation and all hands must be on deck, you cannot keep doing this alone.
Cassie, Ds will have a 4 hour drive, 3 hours to my place and the other hour to home, depending if he comes and at what time, I'll see if he'll go visit his dad. I think he needs to put in a bit more effort of support it's early in the day yet, so we'll see what happens. Thank you for taking the time to post and reply to my concerns.
Julia, I have tried to type a reply to you for over an hour....... I don't read all of the posts, because frankly it is just overwhelming to me. So I read the ones that the titles capture my attention, the ones I think I can help someone. I ask your forgiveness as I thought yours was a post on another new medicine.
I rarely cry anymore, oh the eyes tear up, but few tears fall. As I read through your story the tears fell freely, when I got to the part where your dear husband said "help me, help me" I let out a sob so loud my sister came to check on me. Truly, you have no idea how very sorry I am for both you and your poor DH. :( Damn! I don't know how you have lasted as long as you have without causing bodily harm to the doctor and staff.
If you lived here in the states I could have spent this last hour looking up number after number of people you could and should call to report these bastards. I am so sorry for both of you, but I also feel immense anger. Anger is my friend, it gives me the strength I need to get through these kinds of difficult situations. Use your anger Julia! Let it be the fuel you need to fight and win this war.
My sister moved to Australia a few years ago now, always she is telling me how wonderful your government system is. How much better the pay is, how it is equal for everyone, human resources is priority and that healthcare is optimal... ect ect....... So you can imagine I was a bit more than shocked to read your posts.
What you are describing is nothing short of barbaric cruelty! Here I could see to it that the facility would be closed and I could sue the doctor. I truly don't know what recourse you have there??? But there HAS to be an agency you can report them to, there just has to be! I did write my sister whose significant other works in the human welfare industry there. If she can give me any helpful information I will be sure to pass it on.
I have been a fierce advocate for Lynn, our spouse deserve quality care, respect and to be treated with dignity. I have filed reports with the Ombudsman (our first contact for official complaints) and with our State department. I did not like to and the first time was a bit overwhelming. But I used my anger to give me strength to fight for justice.
Other than taking pictures I would also suggest capturing some of this on video. Getting on video for example the food in his mouth would hold up well in court if it ever went that far. If you think taking pictures gets attention, trust me when staff sees you capturing video of the care, it gets the attention of the big wigs!
Also, please keep in mind you have every right to fire that jerk of a doctor! I fired Lynn's. I know the weight of advocacy is a heavy one, we have to be the voice for our loved ones. What a privilege to be trusted with, but man, what a burden it can be also!! If it were me Julia, I would call for an emergency care plan meeting. Not with just the staff nurse and doctor, but with ALL administrators and even the owner. Let them know you mean business!!!
I don't know anything about where you live, but is there not another facility you can transfer him to? Could they not send him back to the nursing home to adjust to his medications? Staff there SHOULD be able to handle a swat or two. I am not saying it is right, but it IS expected with some dementia patients. My Lynn was bloody awful! Never once did they have to send him out of the facility.
Could you perhaps be there on shower day? I showered Lynn for the first few months he was there, it was his major trigger of aggression. Oddly enough once placed he wanted my help, perhaps having you there would make it unnecessary to overmedicate for the shower. If you don't mind my asking, how often are they showering him? IF the jerks would change him and keep him clean the need for showers should not be that great!! 1 or 2 a week is more than enough.
I have so much rattling around in my head, sympathy for you and your DH is first, but I am really angry, outraged! To think this kind of care can even be allowed is something I just can't wrap my head around.
Please come here often and let it all out, you must be so very overwhelmed!!!! My heart goes out to you ((hugs, lots and lots of hugs!))
Edited to add, and bring a tape recorder with you! You will have everything said on record that way.
Hi Nikki, thank for taking the time to post. Oh I am angry, I'm normally a very quiet, not make a fuss type of person, but seeing Dh suffering like this has got me seething!
We have had 3 family meetings in the last 5 weeks, but still it's the same answers to my questions...it takes time, they have a duty of care to make sure everyone is safe! There's no where else he can go here, he's in our local government mental health hospital, there are 3 gov.hospitals in different areas and they are all connected together. Already he's been moved from one further away to this one closer to me now.
They shower him as they think is needed, like if he messes real bad, but like you say, surely they can take a swat, how hard could he possibly hit, they are bigger and stronger than Dh. I am making notes and taking photos, the NH doesn't have the right quailified (Dr) staff to adjust meds, not enough carers with the time they should have to give to each person. There is the odd one that will go out of her way to make the time and patience for their care.
If they call me when he's being difficult, I would go in and stay as long as is needed to calm him down, even shower him.
I stayed away today, I'll go tomorrow and see if the med cut back has made any difference...
Thank you so much Nikki for your compassion and input...i will remember and hold everything you wrote to heart..