I am desparate. DH has been in the hosp for 9 days. Before entering, he was 184 and yesterday, he was 168!!! He was 206 before entering hosp in Jan- never had a weight loss problem before. When I saw him Mon, he was doing better. He had lost weight but they told me he was eating. When I saw him Wed, he was overmedicated. Did not recognize me (first time) and when I tried to give him a drink, he could barely swallow. When I began to feed him lunch, I had to keep tapping him on the shoulder to alert him to open his mouth-and then it was barely open. It took me an hour to feed him. When I asked the Dr, he told me dh was "fine a few hrs ago" that he had said a few words to him. Well, on Mon, he said more than a few words to me. He was responsive and somewhat interactive. When I brought my concerns to the Dr., he said"well this is a progressive disease (dah!)" and I reminded him that I lived with this disease for 8 years and underestood the progression. He then informed me that his insurance only approved him till Fri (today) and that they were working on getting him out of the soma bed (crib like bed with netting all around). This bed is used to portect the patient and caregivers. I was told by the social worker that unless he was out of the soma bed, the hosp. could not release him. When I asked the dr. about his meds, he told me they took him off Namenda, increased his depakote (which the psychiatrist at the nh had stopped all together cold turkey)and increased his seroquel to 300 in the pm and he was on 200 am-that did not change. They are giving him way more than I ever needed to and at different times. I never had a problem with him sleeping. I know he has been terribly confused with the abrupt placement in the nh since mid April and the complete changes in his meds but I do not want to leave him there any more. I am terrified for his well being. I am ready to take him home. I know I need to put a plan in place but I cannot stand by and watch him starve to death!!! They tell me he is eating 50% or 75% of his food yet when I go there and feed him, he eats everything on his plate- and I do mean everything. Even things that he normally would not eat, he ate. I have lost all faith in the care and do not want him to become a statistic when someone later says, where was the family. I have been advocating for him but I am caught between the VA, our insurance co and the hosp. I called yesterday to speak to the patient advocate-but they were all away for the day in a conference. Everyone at the VA tells me they are doing their best but there is no bed avail-only 28 beds there for the entire stste of Ct! I am worn out between the long drive (Wed it took me 1 1/2 hrs to get there and 2 1/2 hrs to get home because of a major accident where I-95 was closed for 7 hours) and the advocating. I spent all day yesterday calling people-social worker, nurse,patient advocate. I finally called the directors office and was promised a call back this am. I need all of you imput. I don't want him to die!! I went to bed crying and woke up the same way. Lack of sleep is not helping me either. Please, what do I do? I don't know if I can do it here but I am going to try. At least I know he'll be fed. Will I make it worse?

Kathryn,

I understand your situation, two weeks ago I brought my DW home from the stroke rehab center, they told me she was a huge fall risk and needed 24/7 care. We hired a sitter for her, we are now finding out they were right and we are unable to give her the level of care and observation that she needs. We are now faced with placing her in a nursing or rehab facility.

Unfortunately they get to the place where we can not longer care for them and we must turn the care over to someone else. If you feel you are unable to care for him at home tell the people at the VA hospital that you are unable to care for him at home and there is no way you can take him home. They will have to find a place for him or keep him in the hospital for a few more days.

I know you want to take him back home and try to take care of him, I wanted to do the same for my DW, I wanted to know that I had tried my best and done everything in my power to keep her out of a nursing facility. This is the normal reaction of a loving spouse. I know now that I can't take care of her and there is no other option but to place her. I have to call her Neurologist this morning and talk with him about her condition and see if he can give me any help with the situation.

I hope you can find someone at the hospital who can help you with your DH and will act as his advocate. Please know that you are not alone, I'm sure some of the others will be along this morning with some good advice and kind words for you. Hang in there.

The hardest part for me to deal with is that April 9 when I placed him in the nh because of my broken ribs, he walked in the door. The first 10 minutes after I left, he was rushed to the hosp with a 3"' gash in his forehead because he fell. I had just said to them, watch him closely as he is a fall risk. The dr there made a decision to cold turkey take him off his depakote. He was agitated form day 1. I kept asking and asking about it. I even involved the VA liasion nurse and coordinator. The dr insisted he see a va doc so he could order the meds-that wasn't supposed to happen till 5/11. He ended up combative last Wed. Right up till then, he knew me and my daughter and family. Once he got to the hosp, he has been over drugged and loosing weight. I cannot believe it is the progression of the disease that is causing this. He is not being fed. Because he is so drugged, it takes time to feed him and I do not believe they have the staff to do this so they feed him 1/2 of his meal and stop. I feel guilty. If I did not fall, he would still be home with me. At least if he started to progress, I would know that he had his proper meds and was fed. I will not be satisfied till I know for certain he is properly cared for. I just spoke to the VA and "they are doing everything possible" to help- but there still is no answer. I told her I needed to hear their plan by 12:00 or I would have to go to plan B. That means I call my Senators office, the Attny Generals office and our local news program. They do alot of investigative reporting and I'm certain that they would be interested. Maybe if they just contact the hosp or VA it would be enough to get him transferred. This is a nightmare. What happens to these people who have no advocate? I am exhausted from crying and getting nowhere.

Kathryn, I am keeping you and your husband in my thoughts and prayers. I hope that you can get him the help he needs quickly.

I am so sorry for all you are going through ((Kathryn)). I agree with the others, call in hospice. I would also ask to speak to the head of the hospital, forget the doctor, go to the top. I know everyone at the nursing home, and believe me they all know me. I am very vocal. Advocating is hard work, but not nearly as stressful as trying to keep him at home. I hope things improve for you when you are able to get him out of the hospital. At least where Lynn is, the nursing homes do have people to spend the quality time each patient needs, unlike most hospitals. Best of luck, keeping you both in my thoughts. Nikki

((Kathy)) Having him close will make all the difference for you. I go see Lynn every day. I can not imagine if I wasn't able to. I couldn't do it. accccck. I am glad the VA nurse and social worker went with you today. The declines are so hard to take.... I know... ((BIG HUGS))

I am surprised they took him off Namenda. My FIL who is in the VA Alzheimer unit in Bedford, MA is still on it. I believe it is the reason he is still hanging on where he is at in the disease. He was diagnosed over 25 years ago. I wish they would take him off it but my BIL will not agree. He does get good care and has not lost any weight the last time w saw him. According to the nurses he has a healthy appetite still and occasionally feeds himself.

Taking him off the Namenda could account for the rapid decline. It has been said many times here that removing them from the medicine will cause them to quickly slide down to where they would have been. I would work to get him back on it ASAP. Too bad you are not closer to Bedford, MA - it is a very nice place. During the summer they have concerts on the fenced in grounds, tables and chairs for the families to visit - really beautiful setting.

how can the facility speak with yale and you not know about it,? wouldnt they need papers signed for HIPPA laws on behalf of disclosure for DH>? divvi

Kathryn - it is my father-in-law in the Bedford Center. He lived in Wilmington, which is north of Boston. When my mother-in-law died he was beyond the care of any of us cause he was a runner - an escape artist you might say. Since he had not used the VA at all previously, the doctor went in the 'back door' via the psych ward labeling him a danger to himself - which he was. He has been in the Bedford VA Center since 2001.

In 2006 we got Workamper jobs in NH so we could visit him and my husband's sister who had been diagnosed in 2005 with EOAD. It was hard seeing him since he knows no one - just a walking shell. What is amazing is he still walks the hallways with a smile on his face. A couple month ago while talking with the nurse I asked what meds his was on. He is on Namenda, an anti-depressant, seroquel (I think that was it), and vitamins with additional B12. She also said occasionally he will feed himself which is a big surprise. Art wants to go back there again, but we can't afford it. We live 3200 miles away.

I know it would be a distance for you, but it is a very nice facility. They remodeled the first floor where my FIL was. When they finished my brother-in-law requested they leave him on the 2nd floor as to not traumatize him again by moving, so he stays there. When we would visit in 2006, they tried to get as many as possible in the common room. Some would be doing puzzles, looking at magazines, walking around, or nothing. The wives were usually sitting around the perimeter visiting. They knew each other well and were very welcoming to us. They would point out what each had done as work occupation which should that this disease is a respecter of no one, no matter how little or how much education or activity they were in. The hallways would have activities on the walls for them to do (we had a lot of fun doing the one with the magnet. You had to use the magnet to move the mouse through the maze.)

The grounds around the VA complex is wooded - sort of park like. Outside the Dementia center is a fenced yard where they will hold concerts on weekends and weekdays. They sing songs that the men would have grown up with. Some you will see smiles or sing along, others not. There is a concrete 'trail' that goes around the area to walk if they/you want to walk. All I can say is - it is nice. From the pictures of the one Art will go to if we stay here looks just as nice. It is a relative new one compared to the one in Bedford, but sits with a view of the Columbia Gorge.

briegull - the Bedford facility is VA. But I agree it is a long drive. Many of the spouses there only visited once or twice a week due to them living farther away.

My dh is only 61- too young for medicare and because he was a fireman for 28 years, they never paid into ss so no disability ss available. The Va placed him into the nh. When he became combative, the nh called the va for direction and they told them to bring him to the nearest hospital. I signed no forms with either the nh or hosp. Last Fri I got a call from Yale indicating the hosp called to get info. Should they release it? I agreed-send everything they need. They made it seem like they had been in contact with Yale this week. When I called the case mgr at Yale, she indicated the only communication was last Fri.
Briegull,
I thought this was a VA facility in Bedford? Am I mistaken?

I had a medical power of attny that I gave to the nh. No other info was given. I know how strict they are about HIPPA but maybe because the nh "dropped" him at the hosp ALL ALONE that they needed info in order to treat him. I spoke a long time on the phone last Fri with the psych at the hosp. She was lovely and seemed to have my dh best interest at heart. Unfortunately when I visited this week, she was not there and th dr I spoke to was not very forthcoming. I was quite surprized that the VA people would go to a private hosp to intervene as they did today. Maybe because it was on their direction that he be taken there. I don't know. The Va coordinator of nh placement has been extremely difficult. She was the one who originally fluffed me off when I said he was too far away. She was quite dismissive until I called the directors office. Within 1/2 hr, she called me much more cooperative . Today , I called her and had to leave a message. I called the directors office and within a few minutes they connected me to her. She was not very
sympathetic and kept insisting "I'm doing the best I can" to which I responded your best is not good enough. I told her I needed to have something done today and that I needed answers. All of this, of course, was in between sobs. She finally told me that they were going to visit the hosp and the nurse would call me. Why couldn't she tell me that instead of being such a hard a--?? She told me she could not promise me a time frame for her to get back to me but it would be "as soon as I can". I told her I didn't need to know her time frame but she should know mine. I said it is 10:00 and If I didn't hear something difinitive by noon then I would have to do what I needed to do- including calling any and all people in authority. She said-don't let me stop you from calling now! Can you imagine the nerve! My response was you would never prevent me from doing all I need to do to see that my dh had proper care. I never needed you permission before and It would not start now. Within an hour, she called to say they had hopes of moving my dh to the nh 10 minutes from me by the beginning of next week. What I don't understand is why she feels it necessary to challenge me at every corner. After I get dh settled, I WILL have answers from the VA as to why she is allowed to do this to people that are particularly vulnerable. It is hard enough to go through this journey without her being such a ^%$)(U*T&R^(*).
I worked in a government job for 20 years and would never think to talk to anyone that way, let alone someone as upset as I was. I will see dh tomorrow am amd hope things are better. The psych told the VA that they were not pushing him out the door by overdrugging him to satisfy the insurance co. I'll be the judge of that tomorrow. This afternoon I finally got a call back from the patient advocate from the hosp. She has a 20 year background in psych nursing so fully understood my concerns. She indicated if I went there tmrw, she does not work the weekend but I could ask for the head nurse supervisor and her job is to advocate for the patient in her absence. Sounds a little like the hen watching the hen house but I don't have much else I can do. I am praying he is ok tomorrow. Thanks to all of you for your concerns.

SOOOOO sad that these fine men have to be treated so badly by this system. I truly believe that when all is said and done, I will probably get actrively involved in changing some of these things. The nurse at the VA told me they had only 28 beds in the psych unit-and this was for the ENTIRE STATE OF CT!!! No wonder they had no room for him- and probably never will. I am going to get in touch with our Senators office. They have a vets rep and I will work hard to get this changed. With all these young kids coming back from Iraq and Afghan with mental health issues, where will they get help? I am so sorry you have such a long commute. Pretty exhausting. These people frustrate you so much that they turn you into raving lunatics and it is only then that they respond. WHy should it be that way? By the way, FayeBay, what state are you in?

It is my understanding that many vets with PTSD end up with dementia. I heard the VA was studying this-but I don't know for certain. What is "the mental ward in Salem"? Is this a psychiatric hospital? Is your dh service connected disabled? Mine is (PTSD with symptoms of dementia). The counselor who helped us apply at the VA told me she had so many Vietnam Vets with dementia. Why? Because of this 100% rating, the Va is writing a contract with a nearby nh that is able and willing to take him. They had none in my area willing to take him-that is how he ended up so far away. I had to fight for it but I don't understand why you can't get care closer to home too. Our Va psych unit has only 28 beds for the entire state of Ct. I know my purpose in this life will be to advocate for these people. I will be contacting our Senator to try tp get better facilities for our Vets. What will happen to those vets returning from Iraq and Afghan with mental health issues? Where will they go?

FayeBay, I see you are from WV. You must not be registered on the count of states because I thought I was the only one from WV. Anyway, glad to know you. I am from Parkersburg. My e-mail is in my profile if you want to write me. Hugs.

Yes. Tell them you need their help. Don't take no for an answer. What stage is he in? Can he have a caregiver to keep him busy a few hrs a day? There are many options to go with.

FayeBay, I hope you find a satisfactory solution to your problem with the nh. I am not facing that yet and VA will not be involved. I
plan to sign him up for a NH home waiting list, maybe next week. I have delayed on that because it may be quite a while but if something
were to happen to me, it would be sooner than we think. Another reason was because I am from a small town and word would soon be around that I was admitting him to the NH, which is not the case at all.

Good Luck and let me know if I can be of help although I know nothing about VA Hospitals. I think there may be one at Clarksburg.

katherine, there is a VA hospital with a Geriatric psychiatry dept in Kingsbridge, the Bronx, NY. I've been taking my DH there, we live in Northern Westchester. It's right off the NYS thruway and might actually be closer for you. Takes me less than an hour to get there, Amazingly. they have a memory clinic attached to Mt Sinai Medical Center, in Manhatten. If you are in Southern Ct, on the shore,... Greenwich, Norotan, Stamford??? maybe closer to go to NY.

Chris r,
I live in Clinton-kinda mid state at the shore. It takes me 1-1 1/2 hrs to get to bridgeport and to Ny probably another hr. Today I went to see dh and it was 1 hr tp go 20 miles. & mile backup again!!! I just hate driving towards NY. The roads are wicked and traffic worse. Thanks anyway for the suggestion.

Went to see dh today. After my 2 days of trauma, I went with my power of attny ready to take them all on if need be. Upon arrival my dh was being shaved so I had the chance to talk to the nyrse. She told me that she believed the weight rading she gave me 2 days ago was probably incorrect because all other readings showed he was 172. I inquired about his meds and found they loaded him up at night but reduced his am meds and when I saw him, he knew me and spoke to me. He recognized my brothers voice. Even gave me a kiss. He ate and drank well and I was MUCH RELIEVED> I really thought if they continued with what they were doing, I may not see him alive again. I cannot tell you how relieved I was. I have an appt Mon am with the nurse and social worker for "support" , etc. We are going to discuss his plan of care thru the VA. I am happy to see things turn around a little.

For anyone that is having trouble with a VA facility. Contact your local Senator and Congressman. They should respond to your concerns immediately and you will receive some satisfaction from the facility. Even if you have to explain everything to one their aide's you will get satisfaction. The call should be toll free if they are not in the local office. Phyllis

Congratulations-you earned it.

((Kathy)) You Go Girl!!! Fantastic news. I am so glad everything is working out. Keep us posted. ((hugs))

Kathy - wow, that is terrific news. All that hard work you have put in - sounds like it is really starting to pay off.

GREAT... that's just wonderful news. Good for you.

Great Job Kathy! Doesn't make you feel amazing when you win a battle!!!!!

But why should it be so difficult to get people to do their jobs? Are they incompetent? Don't they care? Are they too overloaded with responsibilities to do a good job? Why do we HAVE to be the squeeky wheel to get things accomplished? What happens to the person who doesn't like to make waves?