DH has been sundowning so bad that the increased dosages and combinations of Seroquel and Ativan that Hospice has been having me try are just not working. On Friday night he was so confused and "noodley" that I couldn't get him to transfer. The Hospice nurse on call had to come out and get him into bed for me, and give him his evening meds. (Nurse on call was a big, tall guy named Tom). Last night DH, after an extremely quiet and pleasant day, went totally bonkers around 8:30 pm. He started yelling at the top of his voice and got extremely agitated…was actually combative, and was purposefully trying to hurt me, saying he was going to kill me, etc. He would not take any meds. from me--was spitting, yelling, trying to punch me, grabbing my arms and trying to twist them, and grabbing me hands and squeezing them really hard so it hurt. (He is very weak and frail, so could not really do any damage, but this was emotionally very difficult for me.) The Hospice nurse was on the phone with me ready to head for our house when DH fell out of the wheelchair, so the nurse said he was on the way and to call 911. We had a fire truck and an ambulance in front of the house with lights just blazing--sigh. The kind of notoriety I'd rather not have. Anyway, the fire dept. guys picked DH up, and determined that he didn't seem to be hurt or need to be transported. So they left, and I kept DH close to me in the W/C until Tom the nurse got here. He gave DH some more Seroquel and some Ativan, and put him to bed, trying to calm him down. By 11pm when the nurse left, after being on his phone consulting with other Hospice people, DH was still noisy, but seemed to be staying in bed at least. They are planning to bring me some liquid Roxinal to keep in the house--it is morphine--so that he can be given that if the other meds don't do the trick. So DH yelled for an hour, but finally went to sleep at midnight, and has been sleeping peacefully for 11 and one-half hours, using the urinal just once, about an hour ago. So tonight my son-in-law is going to do the PM care, and per Hospice instructions, we're going to give him 100mg. of Seroquel and 1.0 mg. of Ativan. My s-i-l can do the PM care probably 6 nights out of 7; if it turns out that is too much for him, I'm going to hire a private-pay evening aide. After all day of dealing with DH I am really beat, and not up for all these shenanigans. The Hospice nurse felt that I really need help with him at bedtime, and I totally agree. As a final strategy, if we need to go to the Roxinal and that still doesn't settle him down (it should though), Hospice will put him in the hospital to try to give me a short break from all this. They have a contract with one of the local hospitals for this. So I am physically hurting from all the difficult transfers and from trying to get him up off the floor, but more than that is the emotional devastation of him being combative, and verbally and physically abusive. I have never, repeat never, had him go off the wall like that even in his worst crazy dementia moments. I know it's the disease and not him, but I just feel devastated. There's a huge age difference between us, but we were the closest and happiest of couples--one breathed out and the other breathed in. I still can't wrap my head around the fact that he was really, truly trying to punch me.
Elizabeth, I am so sorry for what you are dealing with. I cannot imagine! Maybe, just perhaps, he is lashing out and punching at the disease itself. I think that so often we, as caregivers, represent everything that they can't do for themselves anymore and they are so resentful and heartbroken for those deficits. I know that my HB appreciates everything that I do for him, but he is so aware that I do it because he just simply can't do the most basic things anymore. It doesn't make it any easier, but it IS the disease. It is insidious and evil. I hope you get the help and respite you so deserve. Praying that today will be better.
Elizabeth, I've been on this site since 2008, and I remember that there have been several others who have had to face this. I'm sure they will be along to comment and offer concrete steps to take, especially for your safety. I think that many had to have their mates hospitalized and several different medications tried, under medical supervision, to find the best one, or combination. The most important point made in other postings on this subject was that the caregiver needed to be safe, had to be safe, was in danger if this wasn't addressed. The caregiver's safety is paramount importance when dealing with this unfortunate development. Being a nurse, you know that we've all had patients who were a danger to themselves and others, and you probably know better than I do how to put these safeguards in place. Please take care of yourself. You're the one in charge.
I am so sorry to hear what you are going through. Not only was this frightening, but you have to live with the uncertainty of not knowing if and when this behavior will begin again.
I’m sure others will have some practical medical suggestions, which I do not have. I can only say how I deal mentally when my husband starts exhibiting weird behavior. I look at him and picture his brain as a fragile landscape where tiny grenades are exploding, or as an electronic circuit board where a short circuit is damaging essential components. These analogies help me to mentally separate the man I know from the damaged machine inside his skull.
I really wonder if your husband even knew who you were. Whatever is going on in his brain may have prevented him from recognizing you.
Thanks, everyone. It is 3 o'clock in the afternoon now, and he is still too groggy and disoriented to want to get out of bed. He had a glass of juice and maybe a quarter of a glass of soda, and I shaved him and freshened him up a little…he mostly just says he has a headache and wants to sleep (filtered these responses through a lot of confused rambling). The nurse said on the phone this morning that he thought something in DH's mind might have been taking him back to WWII, or to his police department years. The nurse said that when he went back to the bedroom to work with DH last night, he thought the nurse had a weapon.
Elizabeth (that's also my given name, but I was always called Betty Lee, didn't know I was Eliz until my teens). What you describe is not uncommon and even tho your DH is weaker, when they get so agitated, they become stronger. My DH raged and threatened to kill me, at the time, I don't think he really knew who I was. Finally he lost it completely in a care facility, chased people, twisted arms, bit them, threw furniture, etc. Staff could not control him, the police were called and he was taken away in handcuffs to a 72-hour hold in a lock-down facility where they did get him under control with meds, but I never knew just what they were. I tell you this because it can escalate and become dangerous. At the moment you have hospice, hopefully they can keep him subdued, but watch yourself when you're alone. The doctor told me to always look for a way out when I was alone in a room with DH. I know this is not easy, it messes with your mind and all the years you've been together, how can they turn on you? Just be careful.
I experienced a bit of what you have told us. Even now after almost two years I find myself wondering what I did to set this gentle man off. Then of course I remind myself it was the disease. These experiences are hard to forget. My understanding to you, Elizabeth. It is a tough journey.
Elizabeth-carry your cell phone with you at all times. Don't let your husband get between you and the doorway. Plan for your safety. It took two police cars and four officers to get my husband out of the house and to a psych unit. Neighbors stood in my street watching and crying with me. No morbid curiosity-genuine feelings.
DH was groggy and hung-over yesterday, but was pleasant and cooperative…until. Last night at 7:45 pm he started the yelling at the top of his voice, shouting for a long-dead sister and that he wanted to go home. Again, he was extremely hostile to me whenever I came in the room, so I said I had to do the dishes (which was true), and just stayed away from him. My s-i-l came over at 9pm and gave DH the higher doses of Seroquel and Ativan and got him ready for bed and put him in. DH was OK with it, and went to sleep almost immediately. So he's been sleeping soundly, with body looking relaxed and comfortable, and respirations easy, from 9:30 pm until now, which is about 7:30 am. It is a godsend, but I'm already getting knots in my stomach thinking what would I do if s-i-l can't come over. He says he will come over every night…I think he is just going to prioritize it, no matter what his other responsibilities may be. And I guess if for some reason he can't come over, I could call the Hospice nurse on-call, if it was just once in a while. I think a hired agency aide would be less reliable than s-i-l, and also there is the hourly minimum. I only need about a half-hour at most, and no agency is going to send an aide for 30 minutes. Thanks for the safety suggestions. DH cannot walk, and is a very frail 89 years old, but I am taking all the advice seriously. And frankly, I am heartbroken that I have to think this way. He was the nicest, kindest man you could ever hope to meet. The NYPD police motto is "To Protect and Serve", and that is the way he lived his life. I feel like I am on the edge of tears all the time for the wonderful man that is being eaten up alive by this disease. I saw the posts on another thread about seeing a devil in their eyes, and it isn't them…it's like they've been possessed by evil. It's exactly what is happening to him. I look into his eyes and see the hatred…and that is not him.
Elizabeth, with sudden changes in demeanor sometimes they can get dehydrated and leads to urinary tract infections. there can be few symptoms til its taken hold.but it changes their behavior radically. maybe ask hospice nurse to cath him and get a urine sample for testing. meds wont make much a difference if its infection until the right antibiotic is administered. just a thought. we know these guys don't get enough fluids a lot of the times and it can lead to infection. good luck divvi
Divvi, that was actually the first thing the Hospice nurse mentioned, but as his urine looks and smells normal, they decided not to send a urine sample for culture. He has actually had a couple of UTIs. He gets way ditsy-er but not mean or angry, and his urine becomes disgusting…sort of thick and rusty-looking..sometimes blood in it--and with a really foul smell that lingers in the air.
The aide was able to shower him this morning around 9:30, but she could not get him to stay awake, so she put him back to bed. I was just talking to him because he called out, "Help!" He was pleasant and quiet--said he just called out because he wanted to know where he was, and that he didn't want to sleep all day, but he did want to sleep a little longer. So he's snoozing peacefully for the moment. I was able to get out for a few groceries and a UPS errand while the aide was here, so am just taking a long deep breath and think I'll make a second cup of coffee and tune my harp. I feel rested and like my mind is better-organized after the second full night's restful sleep in a row. I can function all right on four hours, but boy, do I function better and feel better after seven hours!
elizabeth, I think you mentioned that your husband was a vet. Have you contacted the nearest VA hospital or clinic to see if they offer the services of home health aides under the program called "Community and Home Based Services"? (Or something like that.)
My husband got 3 days per week of day care (at a center that the VA had a contract with) from the VA, for years. After he got to be more than I could handle alone, I called the VA and asked if there were any other benefits and they approved 30 visits per year, of 2-6 hours per visit, from a home health aide from an agency that they had a contract with. The vet does not have to qualify for A&A and there is no means test, although if your income is above a certain level you might have a $15 co-pay. The authorization went through quickly as soon as we submitted the completed application (a 1010EZ form).
I apologize if I already suggested this. Since the program was so helpful to us, I tend to suggest it to everyone!
Myrtle, I know he is eligible for VA benefits, although I would have to get him registered into the system. He could get adult day care and also some aide hours, but he has never wanted to go to adult day care, and with my private aide, even though I have to pay out of pocket for the four hours per week, I know I could have as many hours as I wanted. I would just have to pay for it. Our current care plan is meeting his needs pretty well, and so far, I think we're OK without the VA. But it is definitely in the back of my mind as a possibility.
Oh, that’s good, elizabeth. I was thinking of the visits from aides, not the day care. I also paid out of pocket for an aide for six hours a week, which was as much as I could manage. But I am still working, so the free aide hours in addition to that were really helpful. The VA didn't care how quickly I used up the 30 visits, so some weeks, I used the VA-paid aide once a week and sometimes I used them twice or three times a week. As it turned out, my husband was admitted to LTC before I used up the 30 visits for 2014.
Well, back to "normal" as he didn't get combative or aggressive last night, or even very loud--just tossed and turned restlessly, moaning and groaning, calling out for dead relatives, and kept trying to get out of bed every time he wanted the urinal, which was four times. So another night where I got a four-hour stretch of unbroken sleep, from 3:30 to 7:30. And then when I got up for that golden hour of coffee and reading the paper online, of course he tried to get out of bed again and go to the toilet. So interesting, when he is non-ambulatory. So I got him to scootch back down and placed the urinal, getting peed on of course. (Anybody else here get tired of being peed on?) Yeah, I know. Gloves. But after 20 years of marriage and 14 of Alzheimers, just seems like too much trouble sometimes. I always glove up if it's poop though. And I'm a compulsive hand-washer. It's a miracle I have any skin left on my hands. Only on this thread would I dare share this information--TMI of course.
Elizabeth, I think it's time to get more help from the hospice nurse and doctor. Let them know how bad this has got. Not good for you, not good for him.
Per the on-call Hospice nurse last night around 8pm, gave him another dose of the already increased medication--which had had no effect. 2nd dose--no effect. He's been pretty much agitated and calling out since 4:30 pm yesterday, and it's now 12 noon. He refused to leave his hospital gown or Depends on in bed through the night, so slept naked as a jaybird and the bed is wet, of course. Incontinent of poop twice yesterday…sigh. Spoke with his Hospice nurse at 9am this morning…the team had already had their meeting…basically we are going to just give him the same meds. more spread out through the day to keep him from "breaking through." Well, OK, but this is what we were doing before, and it didn't work. I guess they are not going to use Roxinal after all. And again today the aide is not here yet, so obviously I've had to do the shower and all the personal care myself. I couldn't leave him soaking wet and smelling. Same thing yesterday, too. What good is a bath aide if they are assigned so late in the afternoon that the family has already had to do the care? Or is another night with little to no sleep just making me crabby? Every bone in my body hurts…the aides say he is difficult to do, and I think this is part of the games-playing…if Hospice sends the aide late, they know perfectly well that I (a nurse) am going to have to do him myself. I am becoming just a tiny tad disenchanted with Hospice. They are lovely in many ways, and helpful up to a point, but his needs are not really being me…and mine certainly are not. He needs more hands-on medication management (Hospice MD has never seen him), and a bunch more aide hours. Obviously I need to be looking at more private-pay aide time.
Sorry, typo. "his needs are not really being met…" Also, if it's not clear, he was yelling for not quite 20 hours…yells himself hoarse, and keeps yelling. Thinks I am his dead sister. Lovely.
Now at 12:25 he has finally quieted down, but is so zonked that I can't get his oatmeal into him. Sigh. Don't know if i mentioned that the bedsore he came home with from the respite care nursing home has been healed up for a couple days now. It's astonishing what half-way decent care at home can do. But he does need to eat--let me go and try to feed him some more.
Last post for awhile, I promise. But nobody else understands this stuff. DD said yesterday that if she knew he would be this difficult and interfering with my assistance to her and the grands, that she would never have encouraged me to move down here from NY. Dontcha love it? Families will do you in. Sometimes I feel like it's me and DH together in the lifeboat. OK, I promise I'm done. Thanks for "listening."
Oh Elizabeth, I feel your pain and exhaustion! You certainly cannot continue like this. Is there a way to request (demand) a meeting with all the Hospice people caring for him (including the doctor) so you can express all your concerns and perhaps get things changed? I would tell them that you do need more aide hours and certainly need an aide earlier in the day to bathe him.
I know you already know what I'm about to say because you're a nurse, but many people have the opposite reaction to the meds such as Ativan; instead of calming them, it makes them more uncontrollable. Some spouses on this site have also reported that type of effect with Seroquel. In our case, when dh was admitted to the hospital they gave him 4 mgs of Ativan (why I have no idea) and he was pulling out IVs, climbing over bed rails, etc.
and please, we do not mind, so vent here when needed and also keep up to date. We do care.
Why is it towards the end some can get so out of control? My SIL was like that before collapsing and dying a few weeks later. I know others on here have had that happen too.
I sure hope they find something to help you. I agree a meeting with all involved including the doctor who has never seen him. Or maybe get his doctor involved.
Charlotte, you are so right. DH was fairly easy to manage until the last 3 weeks - then almost uncontrollable. Seemed that none of the meds that had worked prior, wouldn't work then; and the new ones they gave him didn't work either. I still hate this disease!!
He's been agitated, calling out, taking off his clothes, eating/drinking only tiny spoonfuls or sips, for five hours. So much for the new medication dosing schedule.Yeah, really effective…not. (Hospice called this morning to tell me to use the same meds., but in different dosages and on a different time schedule. I am skeptical, but trying to keep an open mind.)And he is much harder to transfer--extremely difficult for one person to do it. Keeps calling for his dead sisters--thinks I am his sister Elvira, who died in 1997. Sometimes calls me Rose…one of his other dead sisters. (Well, you can call me Ray, or you can call me Jay…sorry, just getting punchy.) My cousin the minister stopped by to see how he was doing. She was shocked--says he is really deteriorating. Like yeah, cuz, I didn't realize that. She meant well, though.
I think that one of our members had to phone 911 to take their spouse to the nearest hospital emergency room. I'm concerned about you. Please take care of yourself.
It seems like this hospice has deserted you. They told you that if this continued, they would put your husband in the hospital to give you a short break from all this. So right now, the ambulance to take him to the hospital should be at your door.
I am appalled and angry that you have to go through this alone. I wish I could do something to help you.
Agitated, totally out of it behavior (wiping rear with bare hand, not aware he didn't have toilet paper, etc. etc.) continued from about 3:30 pm yesterday to 3:30 am this morning. S-i-l and I were able to get him into bed with some difficulty, and we gave him the bedtime meds as directed. DH was just tossing around and vocalizing--moaning, calling out gibberish--until 3:30 am when he seemed to go off into a more normal sleep. So I finally slept from 3:30 till a little after 7am. I thought he might need the urinal this morning, but he didn't do anything when I placed it--his Depends are wet, but I'm just leaving them on him for a little while till the private pay aide gets here. Hospice aide said she would come at 10:30 to help the private pay aide, but I think between the private aide and me, we might have him washed up by then. Not sure we can get him into the shower--last night he was just going dead weight on us. S-i-l is big and strong, but we were still having trouble. Hospice nurse who is covering for regular (inexperienced) nurse who is on vacation says she will stop by this afternoon. Apparently the on call nurse who was so helpful over the weekend, and who talked about the Roxinal or short-term hospitalization has been out-voted. I think I am just stuck with this. My life is over, really. I have not played the harp for two weeks, and have not written a word…and I'm on deadline for a couple writing projects. I am not a person anymore.
not sure if all states differ on hospice but here if they are on hospice you have assigned all medicare benefits to that hospice. unless you fire them and then can go back to regular medicare. in our case,, hospice has to be the one who decides if they can go to a hospital or ER. otherwise they may not pay for any treatments. so be sure to consult with your particular hospice first on how this works. on the other hand, I agree if your hospice isn't servicing you properly maybe you have another to try in your area? if not, a powwow with all the heads is definitely in order including the DR who rx's all your spouses meds. you can also request a change of personnel if you don't like how one works. they can then rearrange the schedule to get you an aide earlier maybe. everyone would like an aide earlier so that creates issues of course. I told mine that wasn't fair and they should alternate hrs to give others a chance to get morning baths as well. not all hospices are alike this is certain. you also should have a 'volunteer' via hospice that should include a certain weekly amount of sitting they can do while you get out. and hospice includes a certain amount of RESPITE time for the caregiver, that is provided for and paid for by medicare. ASK about this, many don't know it exists. I think its about 5 days per recert period but it may vary.
as far as the meds, I agree with the others that some patients just don't tolerate certain meds and so the dr should be on board here to adjust or remove and try another to find a decent combo. and If me, I would demand they do a urine culture to rule out any infections- sometimes they don't show a lot of symptoms but its still there. divvi
Hi Divvi-- This Hospice has their own contract with a certain hospital that takes their clients when they need to be temporarily admitted for pain management or whatever. The reason I was turned down in March by the other Hospice in the area was because DH doesn't have a definitive six-months prognosis. The Hospice that did admit him is more flexible about dementia clients--they have carried a couple of their dementia patients three or four years without discharging them…until the patients finally died. The two unmet needs for DH are aide time and medication management. Our Hospice can only give an aide for one hour x five days. That just doesn't cut it…so DD and I will be sharing the cost of a private aide starting after Labor Day for seven hours x five days. This will allow me to take care of the grands after school, and still shop and cook for the family, while the private aide takes care of DH. Issues of toileting and PM care are really getting heavy, and it will be nice to have the aide doing it instead of me and s-i-l. And if DH becomes too difficult for the aide, we the family can help her--let's say DH starts to need two people to get him ready for bed, for example. In terms of the meds., they still want me to experiment with the Seroquel and Ativan, and have given parameters for acceptable, higher doses. I was told that since I'm a nurse, I can basically just give him whatever I want (within the guidelines), and then should let them know what works, and the doctor can write the order formally. (No comment on whether I think this is professional on their part or not.) So despite not-always-perfect family dynamics, the family is stepping up to the plate, as am I, to try to get everybody's needs met as DH's condition deteriorates more and more. He's starting to call out and thrash around…gotta go. Thanks to all for the wise counsel.
Forgot to say that we honestly don't think he has a UTI, and it just looks like Alzheimers deterioration. He would have to be cath'd to get the urine to send for culture and sensitivity, and at this point, I just don't want to do anything invasive. (That goes along with his health care proxy instructions, also.) If people are wondering, by the way, why we're holding off on additional aide hours until Sept. 2, it's because of financial issues. If I totally can't cope, I'll bite the bullet and hire in August.
Thanks divvi and Charlotte--actually I just had my Respite from July 12 at 12:30 pm until July 16 at 10 am when they brought him home. It was wonderful for me--not so good for him--he came home with a bedsore, (which we've now got healed up), talking gibberish, dusky-blue in color, and noticeably thinner--plus they lost most of his clothes--and this was the "good" nursing home. (We got the clothes back later--fortunately I had his name on each and every item.) I am really torn about whether to send him again in the next cert. period--I desperately need it, but not if the best they can offer is going to be substandard.
He did eat two meals yesterday reasonably well (had to be fed) and slept through the night with only an hour or so of yelling. So cross your fingers. That was on 50 mg. of Seroquel in the AM and 100 mg. of Seroquel at bedtime. I held the Ativan, just to see what effect Seroquel alone would have. Also took him for a long walk outside in the W/C last evening, to get him some fresh air and tire him out. He liked that--our road only has eight houses on it, and the park is on one side of the road, so a very quiet, pretty, pleasant walk.
Oh sheeesh, now he's yelling. Well, 7:47 am--not too bad. Thanks everyone--the support helps so much.
Wonder if it would work if you tried it again, to visit once a day, maybe at a mealtime, to check on him? That way you can still get your quiet time and rest, keep an eye on his care, and not have to do the person care.
in our area, our hospice team follows the patient to the respite. they continue the same regime as if they are home. maybe check to see if your hospice team should be attending your husband instead of the staff. and I hire an aide to visit several hrs /day if my DH goes into respite. its my eyes and ears if something is amiss. hope you get the home help in place, that will be a great relief~! best of luck.
Divvi, the Hospice team does follow the patient to respite. Charlotte, visiting kind of defeats the purpose of respite, but yes, I think your suggestion is a very good one. That may be what I need to do the next time. (If there is a next time.)