It all started when a state law kicked in on the length of time DH could take anti-psychotic drugs prescribed by his PCP. The drug dose was cut in half and time had to pass to see if the higher drug dose was really needed.(State says anti psychotics prescribed by PCP are used by NHs to chemically restrain residents) During that "wait time", DH's behavior became aggressive (fighting staff and hit another resident) and another state law kicked in that he had to go to a geri-psych hospital for med adjustment. The only place that would take a man under 65 is 3 1/2 hours away. It has been over a week and all I hear from the hospital is that he is very healthy. I could have told them that (58 at time of dx and now 62)!!!! I have talked to someone at the hospital everyday about his condition and what adjustments are being made. I can't afford to take off from work and I am just so angry at the blanket, one size fits all, state law that set my DH up for failure!!!! Has anyone else had this happen? I feel like it is all a bad dream and wish I could wake up.
In what State are you living? I am asking because one of our members from your State may have had an experience similar to yours and may be able to offer you constructive suggestions. Try contacting your State's Dept. of Elderly affairs - ask if they know how you can get him out of there. You can also contact an elder law attorney to give you advice on how to rectify the situation. Most will give you one free consultation. It is important for you to know the law, what your rights are, and what your husband's rights are.My very good friend just went through this here in Florida, and because she didn't know the laws and her rights, she was put through a nightmare.
We have all learned that the only way to survive as an Alzheimer Spouse is to gain as much knowledge as we can and be proactive.
OKrose, yes, I know of this happening as well. The geriatric care manager I hired when DH was in a psychiatric hospital 5 years ago, recently told me of a very similar situation with another of her clients. Woman was living in an NH and on Seroquel and other anti-psychotics because of a history of aggression. NH doctor lowered the dose, woman became aggressive again, NH told family she could no longer stay because of her aggression (BTW the dr refused to increase the levels she was at previously). So the family was forced to find another facility which would care for her and found it extremely difficult because of her aggressive behavior.
I worry about this happening all the time to my DH because his behaviors have always been difficult to manage. When he was recently in a NH for rehab for his broken knee, the NH doctor told me I was lucky he was in their facility because he was aggressive with staff and if he was in any other NH they would have sent him to a psych hospital. Because he was aggressive in the early stages of his illness and it is documented in his medical files, they automatically assume he is aggressive now. He has not been since the early days but it still follows him. That's one of the main reasons I want to keep him home, because I know if they reduce his meds or he becomes even mildly agitated a facility will send him to a psych hospital and my opions for placement will become VERY limited.
Sorry you have to go through this...Joan has given you good advice. Unfortunately you may have to take time off to deal with this before you end up with few, if any options. Can you take a Family Medical leave (FMLA)? It is usually without pay but the company cannot penalize you for taking time off. Good luck.
I don't know the legal ins and outs, but it seems that if a dr (maybe a psychiatrist not pcp)orders the extra meds to keep the patient SAFE and or others around them, then it shouldn't be the same situation. I think we discussed this once preveioulsly in other blogs, and even the hand restraints sometimes used in hospitals to keep patients from pulling out iv's or caths. from what I found out it can be used but with very specific orders checks and balances and under strict observations and documentation via controlled drs orders. but each state is different. even in the respite facilities they cant use bed rails or trays on tables to keep patients from moving or falling. its crazy. without my DH having a tray on this chair he would work his way to the floor. its probably the only advantage of having them home, is we can do what we think is viable to keep them safe.
my question would be why can a specific geri psyche hospital be able to use the chemical restraints for control vs a regular hospital or facility? are there different rules for particular institutions?
divvi, a good question and I don't know the real answer but I can speculate. Based on our experience geri-psych hospitals are to treat "acute" cases and as such have the ability to prescribe the antipsychotics and chemical restraints to control patients even for long term use. It may also be because they always have a psychiatrist on duty and a nursing staff trained to handle psychiatric symptoms/patients. NH's only have doctors/psychiatrists that visit the facility 1-3 times per week and based on our recent experience have only a very limited number of RNs & LPN's on duty at any time. I was shocked when I found out that during the day shift at the NH there were only 2RN's on duty for over 150 patients.
First of all, thanks for letting me “cry on your shoulders”. This all came out of the blue and hit me like a ton of bricks.
My DH has always been a calm and gentle man and I find it hard to believe that people are now afraid of him (at 6’2” I can see he is hard to physically control). I did a search on here about geri-psych hospitals and could not find something like this law happening. I have now learned that the NH will only take DH back when the hospital has his meds adjusted. I was told that to get around the law a psychiatrist has to see DH each month to give him a month’s supply of anti-psychotic drugs. The same town as the NH has one psychiatrist but I don’t know if he will make NH rounds or DH has to go to his office.
I live in a remote area of Oklahoma which limits my options and local resources. In early 2010, a PET scan showed severe temporal and parietal changes which were consistent with “severe Alzheimer’s disease.” He was able to live at home and go to work with me for 2 years before his condition required NH placement. He can only walk at a funny angle and after the law problem, he stays on the move eating only finger foods as he walks. It is so hard to see him now so angry and unhappy with the world.
Thanks for sharing your knowledge, love and concern! I know it will all settle down sometime since the AD journey is always changing with new bumps and potholes in the road.
Nursing homes are required to have an internist/pcp visit residents at regular intervals and if there are residents in the facility with issues such as depression, dementia, bi=polar, etc they are also required to have a psychiatrist visit those residents as well. Does the local psychiatrist consult with the NH? If not, who does? My hb was always kind and gentle until dementia and then he turned into a monster.
In my experience most NH's or ALF's for that matter have difficulty caring for a healthy, young dementia person, particularly if (s)he is mobile and healthy. If the NH has no one else like your hb and most residents are elderly and further along in the progression of their disease, they probably lack the training and are afraid of your hb even if he's not aggressive.
A quick internet search shows that Medicare & Medicaid are the driving forces behind the decreasing use of anti-psychotics in dementia patients. And since most NH residents are Medicare or Medicaid eligible, that explains why they decrease the meds.
Contact your state's ombudsman for nursing home/long term care facilities.
DH returned last Thursday to the NH after 3 weeks in the geri-psych hospital. The hospital put him on 4 times the amount of anti-psychotic drug that he was on when it was cut and all this nightmare started. Yesterday the NH called me to say that he had to be given a shot to knock him out and returned to the hospital. When I got there, the shot had not fazed him so they had given him a second shot and he was still up walking around. He had just finished eating his lunch. I went with him to the hospital (over a 3 hr trip) since the staff were afraid of him.
NH today told the hospital that they were considering not taking him back from the hospital. Now I am back at square one in trying to find placement. The NH where he is now is 30 minutes away from our home and the drive will only get longer as I search for new placement.
Boy, was I ever wrong about all this settling down. I'm only finding bigger potholes on this AD journey!!!!
Oh I am so sorry! Here I am venting my despair and feeling sorry for myself and I read your post. My problems seem pale in comparison.
Is there a social worker at the hospital who can help you find a new faculty to accommodate your husband's behavioral problem? Can't they try a different type of anti-psychotic drug?
I don't know what area of the country you live in, but perhaps the Area on Aging, Azheimers Assn, or an Alzheimer's navigator can help. Just some suggestions. You need someone working for you who knows and has this expertise in behavioral placement.
OKrose, you are living my most feared nightmare because DH gets very agitated and can be difficult to control. Do you know what meds they injected him with??? If it was Ativan or Haldol they can very likely have the opposite effect (call rebounding). Instead of calming them, they can actually increase/cause agitation. You should find out the med and dosage they used. Since its a NH, it is probably one of those meds. We found out the hard way when DH was admitted to the hospital in 2012. He became agitated and they injected him with 4ml of Ativan to calm him. Well guess what?! He became a WILD MAN-pulled out IV, climbed over bed rails, combative, you name it. Only after the wild behavior did I find out that Ativan would cause the opposite effect.
OKRose... Your tale sounds like a repeat of last year for me. My DH at 6'2" was too big and too strong. His behaviors were not outside of the norm if he had been a foot shorter and 50 pounds lighter, but because of being a male and tall (and strong) his memory care unit finally failed in dealing with him (after 2 trips to the geri-psych and then being asked to leave ("kicked out"). Of course, once the memory care decided to kick him out, I finally accepted that this was not the place for him. I too live in a remote area and ended up moving both of us to a larger city where the memory care units were better trained and had an outstanding manager, who supported taking in "difficult" cases (translate into tall, strong men).
The psychiatric doctor prescribed Abilify (expensive but it worked). Others have mentioned this drug as being helpful. This was after trials with several other anti-psychotic drugs and a handful of anit-depressants.
When I looked for a new placement, I asked first about whether they would take a 6'2" male who had agression problems and was kicked out of his first placement. I had a friend visit 3 memory care units and she used her instincts. She picked the one with the best administrator who was very upfront and positive about handling difficult cases. I had her look to see if there were male residents and expecially male aids.
These months were the worst for me of the Alzheimer's journey. Fortunately, the agession decreased as my DH went downhill rapidly after his new placement.
Hope some of this is helpful. Wish I could say it was easy, but I dont believe easy and Alzheimers end up in the same sentence very often.
Thanks lulliebird and LFL for your support and suggestions!!
hikergirl, your response gives me hope. I have a friend that encourages me to be proactive about finding a new place for DH before the NH decides what they will do. I’m paying NH regular rates while DH is in the geri-psych hospital and having the NH wait until the last minute to refuse to take DH back seems to me an unfair practice on their part. Right now I feel overwhelmed with all these changes coming at me so fast.
I have been thinking about moving to a larger city in another state where my daughter lives but my job is here and I have to work so financially that is out of the question for me. I have unique employment benefits (after 20 years) that I could not find any place else.
I am so tired and weary of this rat race called AD! During the last six weeks I have started having headaches and seeing spots. I had my eyes checked this week and was told my vision had changed a lot during the past year and was due probably to stress.
You are right, hikergirl, that ‘easy’ and ‘AD’ do not belong in the same sentence!!
OKrose - are you having 'starburst' with the headaches and the spots? I have that but without the headaches. They are called migraine phenomenon which is suppose to be a precursor to a migraine. When I had migraines I never had them. It was after the headaches mostly left that the starburst and spots started in. Now when they start, which makes it hard to focus, I treat it like a headache and take ibuprofen.
Charlotte, I have forgotten the name of the headaches but they are like a migraine. I thought I was handling all the AD problems without suffering any new health problems. The first time I saw the spots I was driving. I changed directions and drove to my eye dr for an emergency examine. He was walking out the door but came back in to check on me. My eyes are healthy for which I am very thankful to know especially since I still have headaches and see spots when the stress level is high.
Seeing spots was a wake up call for me! I'm using a relaxation and stress reduction workbook to learn proper breathing, meditation, imagination, self hypnosis, and exercises. I got this workbook years ago and never really opened it up much less apply it. I'm bad about buying books that I think will help me 'some day.' This workbook's 'some day' is now here!
((hugs around you)) The stress that this disease causes is unbelievable! Until last year I was uneducated as to all of its complications, financial burdens, and family distress this monster disease causes. Most people think Alzheimer's is just a memory loss....ignorance is bliss.
May the doctor's have wisdom in treating DH agitation along with your headaches.
OKRose, I am so sorry. I went thru this with my husband (we think he probably had Lewy Body Dementia...) He got violent and then it was a merry go round of going to the emergency room, going to the pysch hospital, going back to the nursing home, being told he was going to get kicked out, trying to find a new place.... I think this is definitely a problem that is unaddressed in the Alzheimer's world. No one wants to deal with a violent patient, yet there doesn't seem to be a solution. My DH finally developed pneumonia and died; which in light of things I was thankful for. We had pretty much reached the end of the line as far as places to put him and treatments to try.
hikergirl*, I did a search here for more details during your time of finding help for your DH's behavior. Wow, my hat is off to you for surviving all that you had to go through! I thought my search was hard but moving 1000 miles for help is unbelievable. I won't complain if I have to place him 250 miles away. After reading the posts by you and to you, I feel better about what to expect from the hospital and how to approach finding new placement.
Shannon*, I'm so sorry you also had to ride this merry go round. I know I want OFF.
lulliebird, I remember a year ago feeling sorry for myself and then coming here and reading about what others were having to put up with and then realizing that DH was being that very good care of in NH and I should count my blessings. I never dreamed that my calm and gentle husband would become someone that others feared.
No one in my world knows what I'm even talking about so to all of you a big "thank you" for your concern and support.
I understand what you're saying. I never thought that a disease as FTD/AZ could alter one's personality so drastically. I never thought that research and medications for FTD/Alz were so limited. Who would think we have advanced scientifically in so many ways, but can't control a behavioral problem due this disease.
Living in a remote area with a good job definitely ties you to your location. I was fortunate that I could move along with my husband. I could have found a placement for him 250-350 miles away, but I knew noone in those locations, whereas when I moved my husband 1000 miles, I had good friends to pitch in and help me. Its a tough decision to even think about moving your husband 250 miles away but it might be the best (of bad alternatives). When you think about a new placement that is far away, is there someone close by that can check on your husband weekly? This could be someone you hire. That was something that I learned on this board, that the spouse in placement needs an "eyes on" to pick up what is happening. I am not thinking of bad things as much as just changes in Alzheimers and that the facility needs to make changes to accomodate. The reality is that the aides have a job to do, and they don't always think beyond the specific tasks.
Hang in there... this stuff is not easy or fun (as you already know).
This afternoon I have an appointment with the only facility with a memory care unit within 100 miles. Get this, the NH is still considering what they will do. Do I need to just make the decision for them and move his stuff out or let it ride with the hope that I don't have to move DH so far away?
Go see the memory care unit as a back up and if you still want him In the nursing home wait for them to tell you their decision. Let it ride, it gives you more time to plan alternatives if needed.
This morning a friend went with me to visit the memory care facility. The thread about questions to ask ALF was very helpful to me. We found out that I pay for all expenses that come with furnishing an apartment (furniture, linens, decor), his personal care needs (toilet paper, Depends, wipes), and they do not charge extra for doing his laundry.
The NH provided everything. The worse part to me is the far location and all the extra driving that will involve. I am now waiting to hear what the ALF nurse says after her visit with DH in the hospital. So I'm going to bed another night not knowing if the NH will take him back or the ALF will accept him. It isn't enough to cope with what the disease is doing to DH but add to it the playground drama of "will anyone pick me?". If both of these fall through, the search will have to move another hour out from home!
I thought placement was hard emotionally last year but having to start over with placement this year is worse! Your suggestions, hugs, and concern does take the rough edge off of all this.
Today: 1) the NH still hasn't decided if they will take DH when released from hospital (charging full price to hold room) 2) DH failed assessment for ALF memory care unit (had to put down deposit on room last Monday) 3) hospital contact person goes on vacation next week 4) I have no power to stop this merry go round
Next week can not help but get better from here!!!!!!
OKrose, I do know how you feel. Went through this 5 years ago (as I said earlier). A few questions and observations:
1) Did the ALF nurse tell you why he failed the assessment? You have a right to know and should know because it might be a reason future ALFs will not accept him. Or perhaps it is something that can be changed (different meds) and they would take him. 2) Your deposit should be refundable because they rejected him. Contact the exec director and ask for the refund since they didn't accept him. 3) Ask the hospital contact person who will be handling your husband's case while (s)he is on vacation and ask them (or meet with them) to make sure the covering person is fully knowledgeable about your husband's case. 4) Contact the hospital's patient advocate BEFORE the hospital contact person goes on vacation. If they are already on vacation, contact the patient advocate right away. It's their job and they are very helpful. 5) Last but not least, do you want to know the NH's decision regarding whether or not they will take him back? If you do want to know, set up a meeting with them and find out what are the determining factors as to whether or not they will take him back. If they truly have no intention of taking him back, they need to tell you so you stop paying for holding the room.
Good luck...(((HUGS))). You'll get through this, you're strong. .
Saturday DH fell and found on Sunday that he had broken his right hip. We are at the hospital with surgery scheduled for Tuesday 3:30. He is in a lot of pain but they are good staying on top of it. He has gone down so fast in other ways that the dr. says he needs to be put on hospice. Just wanted to give you an update on the hospital computer and hurry back to be with him.
It looks though the decision is being made, as so often happens, by your husband's condition. You are in both in my thoughts and prayers. Sending you love.
Everyday the surgery time was changed but it finally happened on Wednesday morning! At 7:24 am, I was told they would be coming to get DH at 7:30. Talk about getting in high gear! (Ha! Ha!) Short story version: The type of surgery was also changed so it was going to take a lot more time. His sister came to see him and be with me during surgery. DH came through great! I'm so glad the waiting is over and DH can start feeling less pain. Thank you for all your supportive postings!
Friday, DH was returned to the NH from the hospital (rough trip of 3 hours). He was placed on hospice that afternoon (they have provided his bed and oxygen machine). Today our 2 daughters (both live in another state from us) came to spend time with their dad. It was hard watching him struggle to breath even while wearing an oxygen mask. DH eats and drinks very little. I still get angry when I think about the state law that started him down this fast decline!!!
(((hugs)) and more .....I am so sorry that you are dealing with this. My heart broke when I read about your daughter seeing their dad this way. Praying for you and your girls.
OKrose, My heart aches for you and all the struggles you've been through recently with your husband. I do know you're all consumed with his recent hip surgery and his current physical condition. Can either of your daughters call the state Ombudsman for Nursing Homes and tell him/her of the situation and file a complaint?
I have another off the wall idea and please don't be offended...you may want to take pictures (maybe with your daughters) of your husband in his current condition. You never know if they might be effective in fighting any legal or care battles. Actually I've done this the last 4 years. I take many pictures of my husband when he's at home, outside doing activities, whatever during his normal routine. Then when he goes to the ER or is hospitalized I take pictures of him in those situations, and if there's something specific (like his recent broken knee), I took pictures before/after surgery. I always try to make it fun and make it look like I'm trying to boost his spirits, but I am also taking those pictures because you never know when you might need them. Make sure the automatic date/time feature on the camera is on so no one can dispute when they were taken. So far no one has challenged me about taking the pictures and often the nurses/aides are happy to pose!