What a crappy day. Started this a.m., DH insistd he go along to take son to school (otherwise he was to stay with DD til I got back). I gave in and took him along. On way home he seemed to get nervous, then took off his seat belt (on I-5, at 70 mph). He demanded I let him out. Kept pulling on door handle. Clenching fists and threatened to "Pulverize your (mine) face." Exited freeway at our town, still trying to calmly talk and redirect. Ended up pulling up in front of our police dept. as I'm dialing 911. Wanted to get out as he was threatening, yet as soon as I put in park the doors unlock. Couldn't relock to keep him in. He was too fast. Got out. I'm trying to redirect him to the door of the PD, meanwhile explaining all to 911. (side note: my first call went to OREGON. They patched me back to my county 911 in WASHINGTON). DH was back and forth, listening to me, then not. Then he darts in to traffic. I get in front of him and point out cars coming, and tell him to please go back to the side walk. He was gonna resist, but just then the patrol car is pulling up. They always settle down for the uniform, right? After some discussion between DH and the officer DH says he will let me drive him to the hospital to "get his meds fixed."
At the hospital I explain the LRA (fast track back to psych), but apparently it doesn't work as fast as I thought. Still had to go through ER procedures. They needed urine so replace the foley cath, to leave in permanent. DH was model patient at times, and anxious at others. Doc mentioned also getting blood, chest film, and brain CT. They took lots of blood first, then after a while went to x-ray for chest film. Next thing ya know we hear the code overhead for security to x-ray. They said, that's your husband, come on and see if you can calm him. We all run over and see about 10 people around DH who is being held by a couple of security guys. He sees me and tries to get to me for help. I tell him he needs to sit on the gurney, that the people are here to help him get better, etc. DH struggles. They get him on gurney and he starts a kickin'. Back to the cubical with "LOTS OF SECURITY." They give him haldol, and a hamburger and milkshake, and he's manageable, although still quite antsy. Sleeps all of 2-3 minutes and is restless again. We got to the ED before about 9:45 a.m., and its now nearly 5 pm. Still waiting on a room for him where he can have a one to one person. Psych didn't want to take him yet due to foley and UTI. He is probably going to the telemetry floor, but as of this moment he might still be in ED. I dunno. I had to come home to take care of something.
I'm so sorry. I pray the doctors and staff will be able to find problems and solutions. You're very brave; I'm not sure I could handle all you have on your plate.
Ohmygosh! That's really scary. But it really is "our kind of normal", never knowing what they may do and/or WHEN!!! I wonder how many 'outsiders' would believe how good we really are at redirecting and handling these manic situations. I refer to the call New Realm got from Radiology ...where Security personnel and ten other people called her to come help! Who ever say we were the 'weaker sex". I've NEVER been allowed to 'be weak'..darn it! No Scarlett O'Hara's in this club!
New Realm, you're the Champion of the Day in my eyes.
oh gosh. sorry NRealm. i have been lecturing about having them in the car and not in the front seat and without child locks..sigh..you are lucky he didnt attack you or pull the wheel. my DH tried to jump out twice while on the freeway many yrs ago. i hope others who read about this will take heed to having them able to open doors or near the driver. back seat behind passenger side child locks always..dont wait til disaster strikes!the UTI will cause him undue aggitation they will keephim medicated and hopefully the antibiotics will help his mood return to more pleasant state. i have been in ER with more uti than i like to mention. with them in that aggitated state and keeping them in the bed well its hell. i ask for ativan as soon as we get there and it works wonders. let us know how all is going when you can! get some rest if you can. divvi
Finally home again. Grabbed a relaxing shower (sort of relaxed the body, but not the mind). First in 3 days.
Yes, I am seriously considering placement. Am working with the attorney on asset management/Supplemental Needs Trust. I want to let the atty guide me in how fast to move in which direction. Am interested in learning about the 20 day Medicare stay in NH, and to see if DH fits criteria. Hope to buy some time to get all things in order.
I've been an LPN since 1984, but have not worked acute care since Dec. 2003 when I was laid off. That is when my Mom and Dad needed care and came to live here. DH diagnosed right after Mom passed away in July 2005. I know I need to go back to work.
I have two kids at home still. Boy almost 17, and girl 18 who has emotional issues since early childhood.
Nothing is going to be easy. Both kids tonight said they don't think we can all handle Dad at home anymore. They are depressed.
this of course is my own definate opinion, but if i had kids of any age at home and DH was difficult to manage and interfering with their ability to cope and function like normal kids. i would not hesitate to place DH as soon as possible. it would be very hard on me more than him i am sure- that would be the breaking point for me and my kids wellbeing would have to come first no matter how i felt about my DH. his fate and future is sealed- but theirs is on the table. divvi
New Realm, I also agree. I have a friend who stayed with an alcoholic husband . He was mental abusive to her and especially the oldest daughter. She begged her Mother to leave him and eventually she did but it has permnantly effected the daughter as well as the Mother. It would have been better if she had left him earlier.
New Realm, you are in such a difficult position. My DH did the ER route with lots of security too. He apparently took off his belt and tried to strangle someone. It was so scary being there with him. I believe that the ER personnel did the best they could with my DH but still wonder if things would have been better if they had approached him differently. He was always more cooperative when someone told him what they were doing and gave him time to assimilate the idea. Even now he responds better when they tell him what they are going to do.
I do agree that it is time to do placement for him. You and your children are at risk while he is at home. He is terminal and your children are very much alive and need you. What would he want you to do in this situation?
It's easier for us to say it than to do it though. For those of us who are fighters (most of those who write here are fighters), we don't want to make that final step of them leaving home. It is going to be one of the hardest things we have done in our lives, as those who have done it can tell us.....
My thoughts and prayers continue to be with you and your family. ((((HUGS))))
Medicare will pay full price for up to 20 days if the need for skilled care is documented. After that the coverage is less and the need for continued skilled care is looked at very carefully
Bluedaze is absolutely correct. They will continually re-assess him and try to release him asap. I do NOT understand Medicare and this subject. I'm became so discouraged at all the NO's I heard, I quit even asking! Dementia care should be covered, even if only partially. Isn't it an illness too? No one in Washington wants to address the subject. One day they will regret that too, when they are faced with the same dilemma. Then, they will also say "IF ONLY!!!"
People in Washington do not have to worry - they have their own health care that pays very well. They do not have to worry about SS or medicare. I have often thought of running for office for one term It doesn't matter how good you are, you are still set for life.
speaking to the attorneys paralegal today I let them know about DH's admission, the circumstances leading to it, and the strong suggestions of placement. They tell me they were working on compiling some "creative" methods of making the money work, and making it last. BUT, now that we are looking toward placement being more likely than home care, and much sooner than anticipated "this changes the playing field." I'm just glad to have learned, legal people working on it for me, because despite what people say about getting educated and doing our own footwork...well....being overwhelmed I don't trust myself to really understand things. Especially when two different governmental entities provide me with conflicting info, and the medicare/medicaid website further confused a couple specific things.
I had an awkward, and overwhelming mix of feelings today. Call from the discharge planner at the hospital asking if I felt I'd be needing any services of equipment or in home care when DH is discharged. Well, for a second I felt panic. Like, "Oh My God, I am not ready to have him home." I said I know I will need far more help than I could afford or arrange at home and that placement is "on the table." Then I started having strange feelings about the reality of it all. I talked to DH's adult daughter about it too, and she too is feeling a bit numb, just the awkwardness of even talking about this.
I talked to DH tonight and I was taken aback when the nurse said he had a really good day. Early in the day the discharge planner said dh was constantly on the move, walking and walking nonstop around the unit. DH sounded almost normal, said he is happy to hear me, it brings some life back to him, and saying he loves me. That kind of caught me off guard and I begin to question "what in the world are you thinking? He's not ready for placement." But, in moments he is starting to talk confused again. Makes me feel like I wish he'd stay confused/difficult at least until I get through the process so I don't have to doubt myself and feel guilty.
Diana-I emailed you about your donation question and it bounced back. Now about admitting your spouse. I went through the doubting process as you are doing. I had been told that my the time your are considering placement the time is NOW. I didn't believe it then-but I sure do now. If you wait too long you wind up grabbing the first straw that floats by to keep you afloat. I think that if I hade placed Bill earlier he might have understood what was going on and adjusted better. Safety issues made my decision. Nora
For me, there is always sorrow and regret that I wasn't able to keep my husband at home. (And it keeps being thrown in my face. No one knows what it's like for us caretakers unless they've been through it themselves.) But looking at it realistically, I know that he is safer, happier and better cared for in the best facility I could find. He's been there 1 1/2 years, and I believe that if he hadn't been there, we would both be dead by now (he's 89, I'm 79). When I was going through the agony of placing him and saying to a friend, "But what about 'until death do us part?' Aren't I supposed to honour the marriage vows?" she said, "Not to the point of suicide." The point you are at now is as tough as it gets. I send you my warm thoughts and support for whatever decision you make.
I was just at the hospital to see DH late this morning. He was sound asleep. Didn't wake while I spoke to the CNA and the RN. He had just gone to sleep. They said he was up all night, on the move. Same thing this morning. They said he was nice and sweet one minute then belligerent and combative the next. Stayed on the move until his legs got wobbly. They said it was the first he's gone to sleep, so no way was I gonna wake him up. Some there assumed he had come there from a facility. Their jaws dropped when I said "No, he lived at home with me."
The doctor finally called last evening. He explained that he consulted the Urologist, and they felt the in and out cath routine was the way to go. Not sure if I mentioned that the indwelling that was place in the ED was removed the next morning by doctors order, and DH couldn't pee all day. The nurse had to straight cath him. Fortunately he cooperated. The rationale is that the indwelling would leave a constant source of potential infection, the cath itself could become colonized, and DH would likely build resistance to antibiotics if he had to be on them frequently. The primary is really adamant that I discuss the laser procedure (essentially a TURP done by laser). He feels strongly that it would help. Then he discussed that DH is medically OK, and they'll switch him to oral meds and he could probably go home tomorrow. I informed him that at this time I am not up to the roller coaster ride and that the discharge planner is discussing PLACEMENT options with me. Well, the doc felt that is a great plan of action. So, I will resist vehemently having DH sent home tomorrow. Even to flat out refuse to take him home. GOD, that feels so weird to say.
As for the CT scan they say it showed no "events" however there is significant atrophy, more so than expected for DH age, and is totally consistent with advanced Alzheimer's dementia.
Talking to my sister this evening I was explaining the strange mix of feelings about DH and placement. I told her I felt so weird. It seems so weird to think of placing him now, but I just cannot imagine bringing him home and going right back into the same daily roller coaster ride. This indeed is a life changing period. My sister thinks about our situation alot, and she and her DH were just discussing the fact that I have been caregiving for so many years. She says, "you are still so young, you need to have some relief and live your life." Well, she's right, we all know that. I look forward to the idea of having the stress of a job that I can leave at the end of the day, and the freedom to enjoy myself or to choose doing NOTHING ELSE at the end of the day.
New Realm, UTI can be such wicked things, our LO's get really goofy when they have them. My SIL who is a nurse kinda explained like it's a poison that runs ramped thru out the body. I know the decisions ahead of you are hard and I wish you the best of luck. Rk
New Realm, If the hospital pushes you to have your husband come home, saying we need the bed, etc. (I'm in Canada with our Medical Services plan), you have a legal right to refuse. Here, by law, they cannot discharge him anywhere without your consent.
Well, so far the PCP says he spoke to the URO who says there is low likelihood of improvement for DH's bladder because he likely has bladder wall damage. Retention would still likely be a problem. The URO is supposed to call me though.
Looks like they want DH to go to gero-psych unit that is about 2 hrs away. That unit had a really nice lady call me for some info on DH. Much of what I told her she said explained alot of things the hospital said that weren't completely explained. I told her PCP consulted with the psych at the hospitals unit (where DH spent the 16 days), and that doctor said he did not want to change any meds. This gero psych nurse however asked how I felt about them getting him possibly back on Risperdal or seroquel. I felt that they are the experts, so I would be open to hearing anything they feel is worthy of trying.
The hospital is discharging DH tomorrow, and I will have to drive DH up to the facility. I am supposed to talk to DH tonight or tomorrow a.m. about where we are taking him. The kids and I are going to have a family meeting so that we are all on the same page with what we tell DH, and the kids will accompany us.
Meanwhile, as all of this is swirling through my head the lady from hospice called. She just received the paperwork from my recent request for an eval. I told her what the current happenings are, so she'll keep the paper work if we need them in the future.
Oh my gosh, two hours away?? That's going to be so hard for you as time goes by.
I'm not sure what a Gero-Psych unit is, exactly.Do you live far away from a city, is that why? Be careful driving there. Hope you will have a strong son going along in case he gets upset along the way. I'll say a prayer for you.
i wouldnt explain anything to him til you get to the new hospital. he could get upset in the car..you want everything to go well with kids in the car. my best to you both-divvi
How old are your children? Are they able to help if he decides to grab your wrist or open the car door. He should be sedated heavily and transported by ambulance. Insurance will pay for that..I know from experience.
When we put MIl in NH, Medicare did not come in, even though she had broken her shoulder in the hospital..... We paid for first 3 months til Medicade kicked in. At that time it was $3,000 per month, now... god help us.
NewRealm, please hang in there. Just the thought of having two teenagers to deal with and this situation with your dh, puts my nerves on edge. I think you and your children will find relief upon placement, sad to say. I am sorry for you.
New Realm - sounds like you will be heading up towards Olympia. Tomorrow is suppose to be a nice day weather wise so at least you will not have to fight rain while driving. I know it will be very, very hard. Your mind will tell you this is the right thing to do but your heart will cry out 'no'!
As others have said, put him in the back seat - possibly with your son next to him, put the child safety locks on if you have them. Take care of yourself above all else. Sedation might be a good idea too.
IMohr, Medicare WILL / DOES pay for the first 30 days in a rehab facility immediately after they have been in a hospital. If they come home for one day and then go to a NH, Medicare won't pay a dime. Someone earlier said they will pay for 90 days,...I checked on this question today and was told Medicare can extend the pay period,, but only if the doctors/evaluators request an additional 30 days, up to a total of 90. ONLY in facilities that offer Rehabilitation. - Not basic nursing homes.
In our group today, I heard stories about how Medicare will not pay for wheelchair, and one person's LO went from a Medicare hospital bed to a (change) Hospice provided hospital bed, which was confusing, to the LO. Both were paid for by Medicare, so why change the bed after so long????? Because it's the government way!
Thanks everyone. The facility is in Auburn, WA. That's over 115 miles from here. If I were to have AMR transport him the bill would be at least $2,000. They transported him once before, 15 miles, and I remember that bill was nearly $800. And that was years ago. Hospital told me that Medicare would NOT pay for the transport.
My son is 16. Hopefully we can get DH into the back seat with him, and DD can sit up front with me. I am nervous as a cat about taking DH up there, but NOT for safety reasons. I am just fearful how I will hold up with the emotional reactions of DH.....AND MY OWN emotions.
Drive carefully up to Auburn. I use to live in Kent. Once you get to Tacoma, the traffic can get horrible. I have no idea where the hospital is in Auburn, but traffic has gotten bad up there. I just hope he stays calm on the trip.
Be safe NR. You will be OK emotionally until it gets done. Just like when the kids got hurt and you stepped up to the plate, then you broke down later. You know it's coming..Dreadful!!!...we are here for you.
I can relax a little. It so happens that the discharge planner on today has alot more experience with psych situations and she called me this morning.
Sabrina: I understand you are transporting up to Auburn? Me: Yes, but my family and friends are all concerned for me/us. Sabrina: SO AM I! I DO NOT WANT YOU TO!
Sabrina knew of a private psych transport company that she has used before. It's called "Secure Transport." It will cost me a few hundred dollars ($150/hr), but I will be alright with that. They are in fact calling DH's Medicare Supplemental insurance co right now because they said sometimes it can be covered. I am awaiting confirmations right now, but they do have DH on their schedule for 1 pm (PT).
I'm so happy. I am not thinking of all kinds of details on my own, like hiring some kind of private transport company. That D/C planner who was speaking to me yesterday really seemed to minimize DH's volatility, and was clueless that this whole situation occured due to an incident in the car just a few miles from home. And they thought it was OK to have ME, his target the other day, drive him 116 miles?
New Realm that is such good news. My husband was transported twice from hospital to ALF at no charge. I would have been terrified to do it myself. Best wishes and heart felt love, Nora