I say to my DW as we are driving in the car on the way from taking a nice ride in the morning where everything was just hunky-dory "would you like to go home and eat lunch on the back deck?"
She jumps out of the car and is yelling "No No I'm not going back there!"
I was pulling up to a stop sign and put the car in park. By the time I get to the the passenger's side of the car she is just about out of her seat belt and out of the car. She is punching me and yelling at me. Cars are honking their horns at me. (This is New York City!) I am stopping her by holding on to her hands to prevent her from going into the intersection. Not that I think she wants to run into traffic, but she is confused and frustrated, upset ... you name it. I call 911 with my other hand. They come. We go to the hospital. They do nothing. They transfer her to a Psych Ward at another hospital. They drug her. Halodol, Ativan and Benedryl. (sp??) I tell them you are not keeping her here. It was a Snake Pit. We get her to a friends home and put her to sleep. I start the Seroquel the next day. 25 mg to start.
She is ok on the next day. Of course she was pretty drugged up. Our home health aid comes WED. night and all is well.
Thursday Every time the phone rings she gets upset with whomever she speaks with on the phone. Mostly her family but did get upset with me once when I answered the phone. She thought I was lying about who was on the phone. In the morning, after her giving her 12.5 mg (approx. I cut the pill in half) of the Seroquel she walked down the 15 stairs in front of the house and walked to the park. I went with her. We were in the park and all was well. She was unable to walk the 3 blocks back home. Called a cab. Got home. Went in the house and more upsets and anger at me. Even though I had been able to give her a 25 mg dose of Seoquel. Gave her another 25 mg at night. She sleeps. I do too, barely.
Friday Gave her a 25 mg dose of Seroquel. Upset about the doors being locked(I had put dead bolt locks on the doors just in case I am asleep, she doesn't go out and fall down those 15 stairs in front of the house) We go out on the back deck. Have breakfast. We go back in, she is getting more agitated. Won't go to the bathroom and won't let me change her depends, which I know are wet. Upset again, throwing things around the house, breaking things. I hate this house, I hate you please go to hell. Again 911. We are now at the hospital. A different one. I explain to about 1 gazillion doctors and nurses what happened. Then I say, her neurologist wants me to regulate the dosage of the Seroquel. Obviously I don't know how. Tests tests tests!!!!
WEEKEND IN THE HOSPITAL
50 MG of Seroquel in the morning and at night.
Reduce Namenda from 2 x10 mg to 1x 10 mg
Gave her a High blood pressure med because it is high. (big surprise.. I suppose mine is too!)
TESTS TESTS TESTS
blood work ok..... Chest XRAY ... ok.. NO Urinary Track Infection!!!
CT scan... NPH ?????
Consult with a Neuro... no shunt will not help.. it is not NPH... family... hers.. thinks it is... this is 2nd CT Scan that showed NPH.....last was 2 years ago and 2 neuros said.. no nph this is dementia Alzheimer's... she is 57.. early onset... probably
Another neuro.. on Sunday.. ..we should do an LP, it may help her gait..... I ask.. what is your success rate? less than 10%.. but he wants to do it... Family wants it done as well... maybe a chance .. any cognitive improvement I ask? Probably not.
Tomorrow more questions from family, doctors, more people.. don't they read the charts???
I'm tired and this is very hard and I am about to pass out... Pray for us!!!
Sorry for any confusion... It's all my fault.. but I thought I needed to write this, post this for any suggestions, comments... etc....
You have had a rough week. Sorry for all you have had to put up with. I think EOAD patients sometimes act this way. I have had no experience with this type but I am sure several will be on here tomorrow to offer support. Take care...I am glad you posted..
Guitar GUY--EOAD is not the dementia I deal with but meddlesome relatives and Dr.s wanting to test and treat what may or may not be necessary have been in my caregiver load. I found that when events were in high gear and relatives were mixing in I was going crazy. When His Dr. was ;pushing for tests for this, that, and som thinbg else, I began to feel intimidated. The two together, a mess. And then, while nsuccessfully trying to get some rest I stumbled onto a moment of clarity. MY job is to take care of my LO. I am to consult the professionals--and then make decisions on care. The decisions are mine. I can make information available to the family, but I am not responsible for their understanding or peace of mind, and they HAVE NO SAY about care. With that focus, the stress fell back. I could ask the questions I needed answered and arrange acceptable treatment. This journey is not easy, but we can grab the reins and slow it down when events run amok. FIRST-- get what rest you can (You must take care of yourself first) THEN consult with the DR.s and make your decisions. After that let the family know what's what--to the degree you believe they should be infomed. Nothing you said indicated a life threatening crisis, so take the time you need. You've been handling things well for a while now, so rest in the knowledge that you can continue to do so. I hope to see another post from you pretty soon, saying the current crisis has resolved as much as possible. ((hugs))
Sounds like your wife is very far along with the disease. I am not sure why all the test. I think it is for the protection of the Hospital more than for the patient legally. I would reccommend staying with the same hospital as then they will have the medical records and redo all of the test. I think you must put yourself first and get the rest you need to deal with the issues. One day at a time hopefully the next week will be easier.
Guitar Guy ,My Dh was prescribed Serequel and the first week to 10 days he was worse and then he settled down some after that .He had 50mg just at night .Hope things improve for you soon ,take care sending prayers and hugs your way for you both Rosie
I am so sorry for your having to go thru what is happening now and I hope that maybe things have improved. My DW had the same problems (almost) and the Dr sent us to the ER. She was admitted to the Pyche ward for an "evaluation". Most of the time it takes 3 to 5 days, but, she stayed two weeks until they found the right meds at the right strength. It was one of the most helpful experiences that we had.
I can sure relate, also, inre the hate. Been there and done that and it sure hurts. That went away also when we got the right meds.
My dw is better. Groggy....gets upset whenever I speak to a doctor
Even when we are out in the hallway. Nothing wrong with her hearing... and when she is upset she is articulate and knows exactly who I am. By name. More later...
finding the right combo of medications is imperative for us all. it would be helpful to leave her in hospital til they can work this out. suggesting she now ride in back seat of vehicle right side belted in with child locks on. it will helpyou and keep her safe while you are driving. yes they resist but soon get used to it. divvi
btw-happy belated birthay guitarguy. sorry it wasnt very good
Thanks to all of you for your unselfish support. I would love to hug each and every one of you and give you a kiss!!
They wanted to do the LP plus an MRI. Why, I have no idea about the MRI. They canceled both today as there is a question about how to "calm" her during both. They mentioned possibly using anesthesia.
Are there not risks using anesthesia with dementia patients???
I want to have some idea if the risk of more cognitive declines are worth the risk of possibly helping her gait. I would rather her be able to think and speak, than have a slightly better gait! And the chances of that I have been told by the neurologist is less then 10%. I have to sign a release to have anesthesia used. A release of course, of legal culpability. But as far as I am concerned there is no release of moral responsibility. Mine especially. My DW's life is worth so much more than mine! She is the most wonderful person I have ever met in my life. That is why I married her!!! I need to do what is right for her, not for me or anyone else.
I don't think the amount of anesthesia they would need to sedate her for an MRI is anything like the amount they would use to, say, replace a broken hip. I think they'd just give her a shot that would wear off in a short time. But ASK!... I'm onlly 'thinkin'".... The deep anesthesia is, (from personal experience) reeeeeely bad.
Guitar Guy---ask what kind; how much; for how long. Tell them you know anesthesia is a particular hazzard for someone with Dementia. Let them know you are informed. Each of us has to decide for our LO what we will and will not allow when it comes to tests and procedures. I think I'd weight my decisions on what will give the highest quality of life with the least dangers. I'd want a pretty decent % of success rate too. As for tests, my DH's former Psych Dr. started pushing for tests, colonoscopy, sleep test, another CT and MRI, etc. I drew the line this way. CT and MRI will be event driven. Tests for which he cannot comply to look for problems requiring treatments he also will not be able to comply with will not be done. Basically, optional procedures are out. Obviously if DH was injured, he would be treated, but with reasonable moderation.
About five months before Claude passed on, I had a go-around with his cardiologist about installing a pacemaker. He had other issues including CHF and was on coumadin because of a heart valve replacement. Because of the coumadin, he would have had to go into the hospital a couple of days before to be weaned off the coumadin, go under anesthesia for the placement, and then have to stay a couple of days to get his coumadin level stabilized. He was stage 7 at this time and had started declining rapidly.
The kids and I discussed it and decided not to have it done. The cardio got somewhat nasty about it, said we were hastening his demise, etc, etc. We had agreed to a nuclear stress test earlier (the need for a pacemaker came out of that) that caused problems and I really think started his rapid decline.
There comes a time when you have to draw the line on further testing. Like carosi said, if injured definitely, but not for things that aren't going to do any good in the long run. Maybe the pacemaker would have given him another month or so but again maybe not.
He went under hospice care shortly after this and was on comfort care only. He passed away peacefully and in no pain.
They were able to do an MRI. They gave her 50 mg of the Seroquel.
The results of the MRI confirmed yet again, dementia of the Alzheimer's type. The neurologist came and spoke with the family in my DW hospital room to discuss her condition and my DW became quite agitated, angry. She was flaying her arms and screaming at me because I "Told them. I did this". She was always a very private person and liked to keep distance between her family and private life. That is no longer possible for her. It was very hard to witness. They gave her a shot of halodol. Sp??
After the family left, later that evening as the drugs were wearing off, she was yet again becoming very agitated. They wanted to change her IV, but she didn't want them too and started grabbing the nurse and being completely uncoperative and cruel. Not like her AT ALL. I know it is the disease, but it is very difficult to experience.
She has not had a BM in 3 days now. She got so bad that we had to give her another shot of halodol using the IV before I could get her to take the dose of 50 mg of seroqule and two laxitives.
They have upped the dosage of Seroquel to 50 mg every six hours. It knocks her out, and when she is somewhat alert, she is slightly her old self. Without it, she is not her self at all.
What next? Bring her home and have home care aids help me or are we going to the nursing home? I am thinking the latter at this moment as I am now in fear of her own safety. I am praying to God incessantly to know what to do for the dearest person I have ever known, and I am here for a consult with all of you dear people.
I cannot believe either of us could have made it without the Seroquel. Once the right dosage is detrmined, it makes all the difference in the world. It makes their life (and ours) so much more bearable.
GuitarGuy: My DW was on Seroquel also and it did wonders for us. (You notice the word "Us). When it would wear off, she became agitated and impossible like you describe. She was in the hospital under the same circumstances as your Wife, and the Dr told me and our children that the time for placement had come. In fact, he said that it was overdue. Looking back, I think he was right.
guitarguy many have been where you are in the decisionmaking of placement. its so damn hard to make that committment for our spouses but we need to keep in mind that if they are raging, erratic, and uncontrollable with medications at a facility, then for their own safety and yours its the better choice not to bring them home. its a very individual choice due to circumstances none of us- but only you have to witness. its a fine line to decide what is good for us and what is good for the patient. once her meds are controlled she should be much less irritable and more compliant. i dont see how you can manage at home until that happens. if it were me, i 'd speak with the physician in charge and say i am not convinced her safety is under control until the meds keep her on an even keel at home. maybe they can offer some advice how to proceed. or offer a shorter stay in a psyche hospital to iron out the difficulties of which meds will work best. many here have been where you are with these difficult but necessary choices. good luck to you - divvi
Guitar Guy: Divvi is right. It is one of the most difficult decisions that we are ever called upon to make. Call me cowardly, but, I was releived (somewhat) when the Dr kinda of made the decision for me. Honestly, I already knew what needed to be done, but, I just didn't want to do it.
Guitar Guy--Talk to the Dr. Push for med. adjustments to get her regulated. There are several to chose from. Haldol can as easily be a culprit as a treatment. You are right to think placement if she continues as she is now. She is not safe this way. If Seroquel or another med can quell the behavior, so much the better. When we went through a major med change one med changed out on one try,but the other took 4 trys to get a workable replacement. I think it was really good for the Dr. to speak to the family directly. They got the words strraight from him. But I'm surprised he did so in front of her, although the behavior it triggered showed them all exactly how it really is.
They increased her dose of the seroquel to 50 mg every six hours, she is asleep all day. How long on average can we expect to find the right balance?
Also I know I told them, she was on Paxil, but they are not giving it to her. She has been on paxil since the middle of May. I am a bit concerned that maybe the behaviors of trying to "get out" and kill herself maybe a side effect of the paxil. Shouldn't they have been weaning her off the paxil? I have been so tired that I forgot about that variable. My brother reminded me to ask about that
They released my wife last week on Monday. It has been a long month so far. She is up to 200 mg of Seroquel, but when she is upset it doesn't stop her from being aggressive. "I hate you, I want to go home, I don't need this or I don't want anyone here". Hitting, squeezing, cursing etc...
She has thrown out the caregivers twice, and will not use the bathroom easily. We have more tests, 72 hour EEG monitoring and another Pet Scan. Seems that my wife does appear to have NPH and AD. Since her aphasia is very pronounced, the Neurologist at the hospital wants to compare the Pet Scan she had 2 years ago with a new one. Her family has not been convinced that she has AD and that if it is in fact NPH, it could be cured!!! My wife is miserable, her family is looking for the "right" Neurologist to give them a diagnosis that they can live with. I am beyond being tired, I am all poured out. I have an appointment with my elder care lawyer to get my wife approved for medicaid and I have a major basement clean out project that has to get done in the next month because of the water damage.
I am hoping that her behaviors don't get out of hand and we manage to get the right dosage for the Seroquel.
I wish I could have posted sooner but I have zero time, even with having two caregivers. One full time during the day and another a few nights a week and on Saturday.
I have to get used to the new normal, I just have no idea how to do it without going out of my mind!!!
Sounds like NPH might be possible. I would treat that and then see what happens. At least then the family will have to accept the AD diagnosis. And the treatment for the NPH might ease the anger problems.
Get some rest if you can. I would not look forward to the basement cleanup either.
GG--Reading this thread all the way through, I kept thinking NPH was there due to the gait problem and incontinence, which can happen early on with NPH, as opposed to later with AD. (Not sure when your wife was dx or the stage she is in.) Then, when you said it's a combo, that makes sense! So if she has both, what does this mean in terms of treatment? Would a stay in a decent geriatric psych ward be a good alternative, (for as long as it takes) so that she can be monitored 24 hrs a day and get the meds in sync? Then you could decide whether to bring her home or place her in a nursing facility.
G ... I know how hard this can be. Lynn went through a period of rages and violence. Seroquel was our answer. It allowed me to keep him home a year longer ..... placing our loved ones is never easy. It about destroyed me. But he was not safe...it was so hard for me to face that I couldn't be everything for him. That I couldn't be on guard 24/7.
When they need 24 hour care, one person just can't do it. You will know in your heart when it is time......you won't like it and it will hurt like hell...but you will know. Be kind to yourself and always remember it is because you love her and want what is best for her. ((Big hugs of understanding)) Nikki
Marilynin, She was in the hospital for 10 days to monitor the correct dosage of the Seroquel. I have talked to a few nurses who say that adding Halodl or depakote and or zoloft, would help. My DW PCP, did prescribe 0.5 mg of Halodol. I left a message for both her PCP and Neurologist to ask about adding something in addition to the seroquel. I gave my DW a 75mg dose of the Seroquel last night and rather than sleep, she was awake and quite agitated until 2 am. I believe the seroquel is effecting her mobility. And the fact that she had 2 knee surgeries for a torn meniscus 2 years apart back in 02 and 04, and she has some arthritis in her knees, so all of that plus the meds are working against her. She cannot swing her legs up to get into bed, so she sleeps on the sofa. Maybe I should get a bed that is a bit lower. I do help her et her legs up into bed, but for some reason it bothers her.
Nikki, For the most part she does sleep through the night, so 24 care, at least for now, isn't needed. Of course I realize that just might change as quickly as tomorrow. I have great help during the day Mon. through Friday and a few nights a week and on Saturdays. I may need to find someone for a few hours on Sunday. I am beyond tired and with all of this going on I still need to work. Thank God I can work from home!
I am also trying to undo all of the hoarding my wife has done over the past several years and the Attic and the Basement are a disaster. I have been going through everything trying to find fragments of our life in our own personal dementia dumpster in the basement and attic. It is very time consuming and I have hired some help to just gut it all. I have found many things that I will keep, but the rest is out of here. Hopefully with the house in a more manageable condition, I will feel more at ease. I have found all of my wife's diaries over the past 17 years. She was such an amazing writer, that I have to write a book telling her story. I think that will help me as the disease progresses. I have a photo of my DW taken around the time we met, and it is on my desk as I work. She may not remember, but I will never forget the Angel that God graced me with these past 17 years.
I always felt that we were meant to be. (and I don't believe in that fate stuff.) Yet, I still feel that we were meant to be together, paradoxes of belief be damned.
"She may not remember, but I will never forget the Angel that God graced me with these past 17 years." How very beautiful! Brought a few tears to my eyes. ♥
Since family keeps telling me I need to be "strong", I have held back tears. Enough to fill the seven seas!
Of course I don't think tears = not being strong. You need to be strong to cry. There is a difference being strong and shedding tears and being a coward!
Thanks Nikki, nice to communicate with someone who knows, feels what I am feeling!!
I do G, I can tell how deeply you love your wife... and how it is just ripping you apart.
But be strong, put that smile on for us... pfffffft, I get soooo damn sick of that!
One of my all time favorite quotes....
"There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are messengers of overwhelming grief...and unspeakable love.” ~ Washington Irving
"Let me tell you something you already know. The world ain't all sunshine and rainbows. It's a very mean and nasty place and I don't care how tough you are it will beat you to your knees and keep you there permanently if you let it. You, me, or nobody is gonna hit as hard as life. But it ain't about how hard ya hit. It's about how hard you can get it and keep moving forward. How much you can take and keep moving forward. That's how winning is done!" - from the Movie Rocky Balboa