It is 12:39 am and I just got home after a 1 hr drive from the hospital. I am so angry, I can spit but I know I probably added to this problem. When my husband was placed in the nh by the VA 1 month ago, I realized they did not have his updated meds list. You see, I have had my husband treated at Yale for 8 years. He is used to those surrondings and only in the last 2 years did I apply for help thru the VA. I did this mainly because my husband is young (61) and I would have no way of paying for his long term care. Since he is 100% service connected disabled (PTSD with symptoms of dementia), I knew they would provide the long term care necessary. The only problem is, I went to the VA for all his necessary appts but in Jan when my dh had a violent outburst, I called 911 and they took him to Yale ER and then, he was admitted to a psych unit in a different facility for meds adjustment. Unfortunately, they placed him on depekote and I had not yet updated the VA with this info. We were due to see the VA shortly so I was just going to update then. Anyway, when he was admitted to this private nh, I told them about the meds adjustment and had Yale fax the info to both the VA and to the nh. I thought all was taken care of. A few days later when I visited in the afternoon, he was agitated and screaming. I checked with the head nurse and he told me the psych was due in in a few days and he would have to place the change order! I was upset. I knew my dh was abruptly taken off depakote which is very bad. He also was placed on seroquel 100 mg at 1 pm and 4 pm. He wasn't getting that dose either. I did not understand how a nh with a dedicated dementia unit had no ft psych on duty. I contacted the nurse liasion at the VA who is the patient advocate for the VA at nh. She was appauled and tried to get things straightened out. The psych at the nh would not agree to give these meds and required my dh see the psych at the VA. Problem is, he doesn't see him till 05/14!! It has now been 1 whole month going round and round between both facilities and I am totally aggrivated. They are cruel to allow my husband to spend much of his day agitated and screaming. I guess they are used to the noise with their 42 bed unit. I took my dad today for his first round of chemo and once I got him settled, I had to meet my mom at a dr appt . She was transported from her nh with an aide. After squaring her away, the plan was to return to Dad and take him home after his chemo. In between I got a call from my dh's nh stating he became combative, was kicking the walls and had actually stood up while belted to his wheelchair!!! They called the VA and asked what they wanted to do and the VA told them to take him to the nearest hospital. I quickly made arrangements for my sister to leave work ( 1 hr away from me) to come meet me with Dad so I could go to the hosp. THe nh sent this man to the hosp without an aide or advocate for him!!!! He is classified as severe dementia and cannot advocate for himself. I was furious. He was at the hosp since 2:00 and I got there at 5:30. He was in a "soft sided (netted) crib)! I had not seen this before and I was taken back. After the nurse saw my face, she explained that they placed him there so he would be safe and so would they. He was still screaming. When he gets like this, his PTSD comes out big time. I asked who his dr was and was told no dr had seen him yet!! Other critical cases had come in and he was "last on the list". I insisted they give him something to help calm him down and soon after thet came in with haladrol, benadryl and atavan- all in small doses. I told her that he might respond for a short time but the doses were so small that it would wear off quickly. It took 1/2 hr to kick in and 1 hr later, he was ranting!! I waited and waited. At 11:15, after I pestered them enough, change of shift happened and the dr said he would have to draw blood, get a urine sample ,etc and the talk to the VA, in house psych and Yale and decide what to do. He said I could go home and he would call me with all results. As I knew this was not going to be a quick process and the nurse was seated at his doorway, I reluctantly agreed to go home. I am tired. I hope he is ok. But more than this I am furious. I have been trying to get him placed closer to me but am still fighting for this to happen. When oh when does the fighting stop and when does the world start to act compassionate to people? Is this just me or does everyone have the same problem? I need some help about how to proceed to be the most effective with the least amount of energy expended. HELP!!
Does the VA has a psych facility there or an ER? I would have him transported there is nothing is done by morning. I am outraged at the way they are treating him (or rather not treating). You are caught between two providers with the VA seeming to not be ready. I can't believe they took him off the meds cold turkey. Once things settle down, contact the VFW and get them to complain. My sister found out they can raise a stink that gets attention if they want to.
I called the VA er and they told me the only way I can get him there is for the er doc to call the VA er doc to transfer. The liasion nurse left a message for the nurse to continue to follow up on this. If I don't get some pretty good answers by am, I am going to call the director of the VA and find out why nothing is being done. Then I'm going to call my local tv station and tell them. Maybe then I'll get the help I need for him. Thanks for your imput. The VFW is also on my list.
1) Call your U.S. Senator or Representative. Ask for the VA liaison. Explain the situation and what you want to have happen.
2) Call your local newspaper.
EIther path is a good way to get immediate attention and help.
Your comment that "It has now been 1 whole month going round and round between both facilities...They are cruel to allow my husband to spend much of his day agitated and screaming" will really hit home.
Kathyrn, this is appalling. Your BP must be sky-rocketing. No matter how hard you've tried, you've been frustrated. What you're doing, and plan to do, all makes sense. Can't offer anything, though, but my prayers. You have them.
Thanks. Today, they finally transferred him to the psych unit and they placed him back on his meds. He finally is better. Agitation gone. Isn't it cruel what that Dr did to him? I probably will file a complaint with the Dept of Health against the Dr. I want him to justify what he did to my husband. He should not be allowed to treat dementia patients who cannot advocate for themselves. I just get frustrated just thinking about it. What has happened to these Drs? I thought the first rule was" first do no harm"? How does this action meet that requirement? I need answers and I will get them. In Jan, my dh was placed into a psych unit for meds adjustment (they are the ones that placed him on depakote) and his care there (other than the dr) was horriffic. No bath for 11 days. Not shaved. Eyelashes stuck shut from the fluid drying on them!! I advocated and advocated and it was as if I was talking to the walls. I ended up cleaning him myself. 29 people in this unit. All were put in depends (whether or not they were continent ) and johnny coats. Most were men exposed to the world (thats how I know about the depends). My dh was continent upon arrival and incontinent when he left!! He needs total help with dressing, feeding, toileting and many times I would go there and find a tray of cold food sitting in front of him while 3 aides were talking on the sideline!! I find this whole area of care quite exhasperating. I don't know if other states have this problem but I for one will not tolerate watching these helpless people be mistreated. I filed complaints with our State Health Dept and State Attorneys office. I may end up being the biggest pest in Ct but I can not sit by and watch. Maybe this will be my destiny-cleaning up these nursing homes and drs that don't care about the patients, only the bottom line-$$$. Only time will tell.
To begin with, there is no JUSTIFICATION the doctor can come up with that would satisfy me. I can tell you one thing. You have taught me a lesson. IF my DH goes to the hospital, I'm taking his meds with me in my purse and I'll give them to him if I have reason to believe they aren't.
What state are you in? You have an incredible case to tell. Write it out, so you can leave it with the people you meet. Make a lot of copies!!!!!! Have them sign that they received a copy. Excellent for follow up.
That is a horrible story! We're all as angry as you are. We should ALL march in on them!!
File a complaint with the Hospital too. They all have an Ombudsperson for issues between patients and the hospital, and the hospital is just as responsible, if not more so, because it's their personnel providing the hands-on care (not). They will investigate and address issues.
Kathryn, I live in CT also and have not had your experiences to that extent. He has been in Masonicare, Mid-State, Hartford Hospitol, UConn, and New Britain General. The care he gets in the facility he is now in is fabulous. You walk in there (at any time of day) and it always passes the "sniff" test, he is always clean, shaven and dressed.
I have had to do quite a bit of advocating on occassion but usually got the desired results. Where was he - I don't want mine to end up in the same places.
My dh was admitted to Bridgeport Manor because I fell and broke 3 ribs and could not care for him at that time. The VA has him classified as 100% service connected disabled (PTSD w/ symptoms of dementia). I could never pay for nh care so they decide where to send him. I had dh in the Masonicare Jan3 2009. He was there for a meds adjustment. The dr was fabulous-put him on depekote and dh was much better. However, the care he got while there was horriffic. He had no bath for 11 days (no matter how much I requested one. He was unshaven and his eyelashes had stuck together because his face was not washed. I tried to complain (diplomatically) but that did not work. He entered Masonic walking and was locked into a wheel chair and not walked. When he left, he was not continent and had his chin firmely planted on his chin. I was furious. I spoke twice to the dean of nursing trying to advocate for him but lost the battle. I enden up filing a complaint with The State Health Dept. and States Attny office. Bridgeport Manor had to transport him to the hosp 10 minutes after I left because he was left un attended and he fell (after I spent a great deal of time explaining he was a fall risk). He had a 3 inch gash in his forhead that required staples and stitches. The facility is old but immaculate and the direct caregivers are fabulous. I did not appreciate them dropping him off at the hosp Wed. without an aide. He cannot talk or advocate for himself. I live in Clinton and it is 1 hr away. Bridgeport Hosp has been fabulous. I am going there tmrw to see how he is. They placed him back on depakote and said it really helped. Where in Ct do you live? My sister is a surgical coordinator at UCONN and I have been there a few times for treatment. It is a wonderful place with very capable drs. It is too bad that they always run in a deficite because they are the only st2te hospital and many of their patients are medicare, medicaid and non insured. What facility do you have him in? What stage is he in?
Saw dh yesterday and he was still having meds adjustment. Caregivers are wonderful in this psych unit-calm and compassionate. Dh still in need of soma bed so social worker indicates he will probably be there all week. It took me over 1 1/2 hrs to get there yesterday and more than that to get home. It really makes it hard to visit as often as I normally would. Every dr has a different opinion about what meds to use and in what combo. After seeing tonights alz segment on research, I want to get him into the trials for that drug that reduces the amalyoid. Doesn't everyone? I just want his suffering to end and for him to be at peace. He has been through so much for the past 7 years and I want it to be done. As long as they are hopeful for a reversal and/or help with this disease, I want to participate. DH participated in some research at Yale for early onset. Maybe they can help me find out some more info. I'm not certain if VA has trials to participate in. VA has now changed positions and realizes what a bad decision was made to keep him so far away and they are pushing to get dh out of the nh. In fact the hurse at VA told me she believed that the VA was not going to place him back at the nh so I'm waiting t hear about their plan.
therrja,Thanks for the email. I'll send an email back probably tmrw.
Remember that trials come with costs: lots of testing, possibility of getting the placebo, etc. My impression has been that most of the trials need the person to be in fair physical shape before they will use them. My husband was not okayed to take some of them, and I just gave up. If brain tissue is destroyed, no trial's going to bring it back from what I can see..