I am so angry I could scream or hit someone. Yesterday afternoon I went to see DH at the Geripsych. This is the place that was supposed to help him stop hitting people. As far as I can tell they are slowly killing him. When he went in there he could walk now he is in some kind of a wheelchair each time I go.
The visiting room is a community one which I don't like because there is no privacy for visitors and loved ones. DH would be mortified if he knew people could see him in the condition he is in.
Yesterday he was slumped over to the right far more than he was. He is so far over the arm of the wheelchair is up in his armpit. He tried to open his eyes and talk but couldn't do either. His eyes are now sunk in his head. There is an area, glassed off where the nurses or whoever they sit. Yesterday it was the same nurse who kept on and on telling DH to open his eyes the last time I was there until I got irritated and told her to leave him alone and take him back to his room. I went and told her he needed to go back to his bed and sleep. She comes out...grabs him under his left arm to pull him up. As soon as she lets go he slumps right back. Again, I told her he needed to go back to his bed and she starts walking down the hall yelling "He slept all day". I yelled after her "Well, he needs more". Of course the visitors are looking at me but no one says anything which is a smart thing to do because I was in no mood for excuses. If you can believe it "Nurse Ratchett" comes back with a pillow, pulls DH up on the left side and is trying to put the pillow on his right side. From the look on DH's face it hurts when she is pulling him up. So AGAIN I tell her to take him back to his bed. Either this woman is dense or she has no business being a nurse.
On Friday when his therapist called me she said DH might go back to the ALF on Monday but the doctor will decide then. There will have to be a miracle between now and then or the are planning on sending him back in this condition. I am thinking the next step just might be Hospice and that might be a blessing. I wouldn't send a dog to this place.
Okay, I'm sorry this long but I think I have gotten if off my chest. Now if I could turn off my memory I would be okay.
Oh boy...I feel your pain. It is so hard to see our loved ones in these various conditions. And, then on top of that to have to deal with what seems like personnel that have little care for them or at the very least just seem to think of them as a number or another one that doesn't need the care we feel they need and deserve. Part of them is still here and we and others need to reach that part to give them comfort and love.
Keep us posted and we do care about you and your dh. Be strong, it's not easy...but, we have to be stronger then we ever thought we would be to make it through this trip we are on.
Oh Jean, I am so very sorry. Have you talked to a doctor there? What medications they put him on? The nurse is unbelievable. Please continue to post, vent, rant and rave - whatever you need to do. We love you, Girl.
This is so scary. You have every right to be angry. It sounds like that nurse has no experience with AD or just doesn't care. Please tell the therapist and his doctor what is going on. You can also report the nurse to the director of the nursing home. If the director is uncooperative, call the Ombudsman - every nursing home has one -it's the person who investigates complaints.
My experience with geripsych units has also been less than stellar. Jean-you have to be very firm about your husband's care or it appears the staff will take the easiest way out. Find out when the next team conference will be and let them know you plan to attend. If you can get your hands on a recorder I would take one along. Make sure you have permission to record. As an intake coordinator I found team comferences to be a real learning experience for the STAFF! Too many times they were so caught up in their piece of the puzzle that they had no idea of the complete picture.
Lighthouse Care Center of Conway… is a 112-bed facility committed to providing quality mental health treatment services for adolescents, adults and seniors. We emphasize family involvement in the treatment process and provide individuals with the opportunity to fully confront and master their problems.
This is taken from the first page of their website. It isn't a nursing home, ALF or hospital per se. A friend's husband was there (he had Lewey Body) and apparently they helped. He has sinced passed away. I don't know if they have an ombudsman and the only thing I know about the doctor is his name. I have never seen him or spoken to him.
I did tell the therapist about "Nurse Ratchett" when she kept telling him to open his eyes, she told me she had spoken to her and everyone else not to heckle my husband. I doubt she will be there today but if she calls tomorrow I will certainly tell her about the latest episode and have her tell that nurse not to come within fifty feet of my husband. I may call and see if the therapist is there today and maybe get some satisfaction. Yeah sure!
Jean, I found this on their website: Requiest to speak to the patient advocate.
21. What if I have a complaint about the treatment I am receiving or a grievance against a member of the Lighthouse staff? The staff is there to listen to what you have to say about anything that you feel is a hindrance to improved mental health. You should make an attempt to resolve any issues with our unit staff, whether it be a mental health tech (MHT), a nurse, your therapist, or even your doctor. If you feel that you have made multiple attempts to resolve an issue and it still persists, there is a patient advocate within the facility that you can then request to talk to. See your patient handbook under the section “Grievance Procedure” for how to request this meeting.
Well, I got to vent a little. I called the facility and when you call you have to give a medical ID number and they put you through to the correct unit. I asked who I was speaking to and she said her name was Lisa. I then asked if she was in the visitor's room yesterday afternoon and she was! I told her to stay away from my husband. She said she wasn't even his nurse so I said "Good, you stay away from him because you know nothing about being a nurse or a dementia patient. She informed me she had been doing it for thirty years so I told her she hadn't learned a damn thing and to stay away from my husband and slammed the phone down. I may have made it worse but she had better not be mean to him and if she is she had better hope and pray I don't find out.
I have not posted our experience with a geripsych center because it was so bad and I didn't want anyone not try one. They have helped so many. My DH went in knowing who I was and managing to do a lot of his dailey care. The first time I visited he was standing in his room completely nude. There were no clothes laying around and it took some searching to find some to put on him. His shoes and cane were missing and were found in another's patient's room. He didn't know who I was. I should have taken him home that day. He was there 2 weeks and they told me I could not manage him at home that he had to go to a NH. I did take him home and he was peeing and pooping every few minutes. That night he fell out of the bed and was scooting around on his butt with no idea how to get up. conti nued...
First of all, the treatment your husband received from that " nurse" was just horrible...and she needs to be reminded that " what goes around comes around" and one day she will " get hers"......grrrrrrrrrr Report her to the highest authority and you might just drop the nugget that you will write a letter to the editor or get press on the treatment this facility dishes out......
Secondly, find out what meds they have given your husband...they seem to be neglecting him.
Third thing, regarding decline, my aunt my marriage finally had to be placed in an ALF because she began to wander at night outside the house and my uncle could no longer take care of her alone. She walked into the facility, which was a very good, clean well run place, by the second week she was in a wheel chair and by the third week she was gone.....the doctors said they had never seen Alz course through a person so fast before and she had no other health issues....from the first dx to her death, it was about 3 years total..very very fast in her case. It could be possible your husband did have a significant decline in spite of the ugly nurses at the facility. Can you demand he be transferred to another facility even if he can't go the ALF?
I had to call 911 to get him back to bed. The next day I took him to the ER and they wanted to take him back to the geripsych center And I refused. After talking to our family doctor who told me to take him off all the new medications and go back to what he had been taking I took him back home. It took about two weeks to get him back to his normal. I could handle his delusions easier than a zombie who zonked out and could not help himself. He lived another 2 years at home until 3 weeks before he died. When he could no longer walk he was admitted to the NH. He lived about 3 weeks before he died and during that time they had to keep him sedated because he fought against anyone moving him. It would take 3 aides to give him a shower or change him. Some of our older DH's cannot handle the medications that are supposed to help them. When new behaviors surface I believe medications should be looked at first.
Bama, The whole idea of DH going to this place was to have his meds adjusted. It seems the have adjusted them the wrong way. I would bring him home in a heart beat but I don't know how I would take care of him if he can't walk or if he fell. If he hasn't lost any more weight in this place he should be 150lbs, he used to weigh 186lbs and he is 5' 10". I am 90lbs and 4' 10" so I would need live in help I would think and they wouldn't have their own room. I just hope he can go back to the ALF, at least I can go see him anytime if he is there. I am just sick of the whole thing!
I'm sorry, Jean. I know what you are saying. I had high hopes when I took him to the geripsych center. So many here had good results and I hoped it would help with his delusions. He was a sweet, kind man even with the delusions and I just learned to accept them. He never reached the bathroom issues during the day and it was only at night that we had to have depends. When he reached the stage that he could not walk I didn't have a choice but to place him. I will be praying that he will be able to return to the ALF but you may find that he cannot tolerate the new medications and that the delusions are the lessor of two evils. Sometimes I think doctors are like auto mechanics and that they tinker with the motor or mind until they find the right solution.
Bama, DH didn't go to this place because of delusions. He hit some of the staff at the ALF, it seems that was okay! It was when he hit another resident that they decided to send him to this facility. If he hits people in this place I might go help him!!!!
Jean...Have you contacted the ALF to see if you could just send him back there since he seems to be totally out of it until you can maybe arrange placement in a nursing home that could take care of him and know how to handle this problem with his drugs.
Or....can you DEMAND that you speak to the doctor. This seems strange that he hasn't at least tried to contact you. Others on here that have more experience with the problems you have certainly can give you better advise then I can. But, my heart goes out to you (hugs). The one thing I do know is your problem with being able to handle/lift your dh. My dh is 5' 9 1/2" tall and now weighs about 129. I am 5' 1" and weigh about 125" and I it takes all I can do to get him out of bed when he is weak or just to get him in a sitting position.
Or...call the Alzheimer's association in your area and ask for help. You certainly need someone to help you.
This is all so awful! Jean I hep you get some kind of help soon, yes DEMAND to see the doctor keep on it until you get a resolution . It is simply all too much.
I am waiting to see what happens tomorrow. I imagine the therapist will call especially if "Nurse Ratchett" tells how nasty I was. If I don't get any satisfactory answers then more than likely the fur will fly.
Jean, your experience sounds like the one we had with the first geripsych hospital DH was admitted to involuntarily. There should be a "care team"-a social worker, a lead nurse and an assigned doctor. I would demand to be present at the next team meeting-they absolutely should allow you to attend that so you can get the status of your DH from the teams viewpoint, a review of the meds he's been put on and why those were selected, do they have a discharge plan and if so what is it and then provide any input you have about changes to his care, objections you may have, etc. I would also bring someone with you who can take notes...you'll probably have to ask permission for someone to attend with you. Also, request copies of his medical file-dr's notes, med logs, activities, etc. If you are not allowed to attend a care meeting, then by all means escalate to the patient advocate asap and demand help and answers. If the advocate's actions don't satisfy you, then escalate to the medical director. If that doesn't satisfy you, contact the Facility director/president/ceo-the highest level. Make sure you wrote everything down (I doubt they will allow you to record conversations) and then send a summary of your notes to all parties documenting the conversations and information. I know it is a lot of work but it is necessary to make sure you have more than just your word that your DH isn't being treated well.
I know how eotional this is for you however now is the time to approach this as objectively as possible so they know you're serious and there could be significant consequences for them. Once they see you're organized and methodical they can no longer dismiss you as an emotional wreck who can't handle her spouses illness. I know, I've been there.
This might be an appropriate time to hire a certified geriatric care manager (not cheap) who can help navigate the system on your behyalf. It was the best investment I made at that time and helped immensley as the advocate for my husband.
I have to get the paperwork out and read it because I don't know if they have team meetings and from googling the doctor's name he runs the whole facility so there may not be a chain of command. I am going to try and get the doctor's phone number and give that a try.
Jean-here is the link to the SC ombudsman program. They may be able to further direct or help you http://aging.sc.gov/seniors/ombudsman/Pages/index.aspx
I am so sorry Jean for the outrageous behavior and disregard towards you and most importantly your husband.
The attitude of this nurse and his care reminds me of the old movies depicting insane asylum. They treat them with no respect. I thought things had changed but evidently this facility and/or nurse did not get the message. It is horror stories like yours and cause people to fear psych wards.
bluedaze* I have added the link to my toolbar. I will see what if anything happens tomorrow. I'm trying to get the doctor's phone number I'm pretty sure he also has a private practice so SOMEONE should have an office number. I hope if I can get to speak with him I am able to do it without crying, he'll think I am just an over emotional wife.
jean - you are a wife who has seen her husband disintegrate right before her eyes and all things point to the treatment he has or has not received while under his care. That would upset anyone.
jean just remember you are advocating for HIM on his behalf and its up to you to make sure they give you the explanations you need for his well being. knowing these poor souls are defenseless gives us strength to move mountains on their behalf.! best of luck divvi
Okay folks, I finally got somewhere. At 10.30 today I am supposed to have a conference call with the doctor and therapist. I have invited a friend to sit in if he wants to. He is an RN and when I had in home help it was from his company. I am hoping he will catch what I might miss. I will let you know how it went.
I can't say I got any real answers with the conference call. I am not impressed with the doctor...in my opinion he is just playing around with pills. He took DH off the Seroquel but is starting again with it! The friend wasn't impressed, it turns out he used to work in a psych hospital so he will go with me on Wednesday to see for himself how DH is. He said heads might roll!!!! He also knows a nurse who works in the same place and called her to see if she knew "Nurse Rachett". She did and said she was fat and lazy and good at delegating! Stay tuned for the next episode on Wednesday.
Jean, sounds like you've got a knowledgeable advocate for you and your DH, so I hope things go well on Wednesday. Perhaps he can document the conversation and non answers with the doctor? I wish you both luck at the meeting on Wednesday.
p.s. don't be surprised if they won't answer your friend's questions since he doesn't have a dpoa. Hopefully he can get some action!
Jean - I haven't read every entry here, maybe you already know, but by Federal law there has to be an ombudsman number posted in the facility for all to see. If not, type your 'state ombudsman program' into Search & info should come up. For example: California Ombudsman Program. You really need some outside help between you & the facility. MY DH was also in a facility to medicate for violence but I felt they did a good job for him. What you've written--we all know--is NOT acceptable. And we are so vulnerable.
Jean, read your other post-did you visit DH at the geripsych or did they move him to the hospital before you got to visit? I would suggest contacting the patient advocate at the geripsych unit ASAP and demand answers as to why he became dehydrated, etc. If they don''t respond, call the ombudsman. Prayers with you.