OMG, what a week it's been, DH is in ER, he had a major meltdown on Wednesday, I add to ring the ambulance to take him to ER, He was uncontrolable, my fridge doors are dented, he was going to smash the sliding glass doors. The paramedics had to call the police, as he was not going to go with them calmly, they were all ready to give him a sedative, I eventually talked him into going, said i would follow in the car. They think he may a UTI and is treating him with anitbiotics incase, now wouldn't you think they would KNOW, not think...He is more lost now than he has ever been, we had a word with his geriatrian, and she thinks it's time for placement, she said there's no going back from here, he shouldn't be going home... I am so sad, part of me wants to bring him home...am I giving up on him too soon? They rang yesterday, he wanted to talk to me, he said he's at the police station and they are going to arrest him.. to go and get him...what was i to say to that! The Dr says to distance myself a bit from him...so today I think I'll stay away.. Please any suggestions on how to handle the transition from ER to placement would be apprecitated
Julia, I am so sorry to hear about the terrible week you have had. My suggestion would be to start your husband on meds to calm him down for the transition. The doctor should know what will work best. When he asks about going home.....and he will, just tell him that he has to stay until the doctor says he is all well and can come home.
But also...placement isn't going to go well unless he is on meds sufficient to control that kind of outburst. So you may need a transition at some sort of intermediate site--a geriatric psych unit or something.
Emily, he is in a geriatric ward, from here they get sent to a Transitional Care place, that is really only a secured nursing home, until a place becomes available closer to home. I'm guessing this is where they will sort out his meds and gauge how well he'll settle....it's so hard to get any info, as far as i know he is only on antibiotics for the supposedly UTI they think he has.
Carolyn*, I'm sure I will have to tell many fiblets. Sometimes I too think it's time, then the guilts set in!
Sandi*...I wish the Dr would start him on something and not just wait to see if it's the UTI. I do tell him the Dr's are trying to clear up an infection...
Julia--I just went through a similar situation in Jan. Be glad it was the fridge . it was nearly me. Step back. Let the Dr. and hospital personnel know clearly that you are relying on them to treat him but expect to be kept informed. After 2 weeks of changes--meds and additioonal problems, my DH was placed. Luckily,at the last minute he went to the NH I had been hoping and wishing for. At all times I made it clear to the personnel involved that it was unsafe for either of us for him to come home. It could not happen.
Everytime from the day he went to the ER, when he's said anything about coming home, my answer has been, "We have to do what the Dr. says." "It's up to the Dr."
He's more easy going now than he's ever been in years. The thought has crossed my mind fleetingly, that maybe he could come home. Those thoughts get tossed in the recycle bin fast. Our LO's emotions can change in a flash and they no longer have control over how they express them. In 38 years together my DH has never directed his anger at a person, except the 2 times his mediical condition went haywire. Both times, i was the one there and became the target. Luckily I wasn't injured either time, but there was no warning either time. There is no way to reliably predict what effect these diseases will have on our LO's behavior. If we are to be the best Caregivers possiuble for them, we have to use every tool at our disposal and if that means enlisting the 3 shifts of workers at a NH to do the hands-on care safely---that's what we have to do.
No, Julia, you are not giving up on him too soon. There is really nothing more you can personally do except to be there for him while others take care of him. I know, because of his violence my DH was taken by the police, placed in a lock-down facility and all responsibility was taken out of my hands. Eventually they got meds to calm him. Society takes over for the safety of everyone--including you. One loving wife cannot do all that needs to be done for him -- it takes a team of medical professionals and people who know about meds, how to administer them, what to look for, how to react without all the emotions. My heart still trembles when I remember my DH saying, 'take me home,' when this happened to us -- and I could not do it, the law would not allow it. So I know exactly how you feel. You are doing the best thing and that is to follow the advice of those who are now in charge. I felt those involved understood my feelings, I hope the same happens with you. Let them guide you. Use their expertise. I send you strength.
Carosi...that's what I'm telling my DH, " when the Dr says it's ok" I rang today to see if he settled, as last night they had trouble settling him, they said he was sitting in a chair in the corridor waiting for a taxi.
Bettywhere* thank you...already the house is so empty, but I know it had to come sooner or later, it was just so sudden from a good day to this..
Julia, we had a similar experience right after DH was dx'd-violence towards me, a difficult arrest (even tho I told them he had dementia) they took him to jail and ultimately to the ER. From the ER to psych hospital for 4 weeks. I was a wreck, I cried all day and night, took leave from work to figure out what needed to be done. Admission to an ALF dementia unit directly from the hospital, but he escaped 2 weeks later and ended up at another psych hospital. Yes I heard "take me home" every day I visited (it broke my heart). Unfortunately due to his escape and violent history I had very few options in placement and worked with the psychiatrist so that his meds would allow him to come home. He's been home almost 4 years but we have to have a live-in male aide.
You are in my thoughts and prayers-placement is never easy but when it comes so suddenly it's almost like a sudden death.
LFL - glad it's been working out for you at home. For a bit I had a male helper in the house, he was a gem, taught me a lot about CG-ing, but DH finally attacked him, didn't want any man in the house, so the helper left. He had to, he really couldn't properly protect himself from DH. Then had a female and that worked better. What works for one is a crap-shoot for another.
LFL, I am now going through those emotions of crying, walking around the house say to myself over and over, that he's not coming home..not eating, can't be bothered to cook. I visited him yesterday, his little corner of the ward was a mess, he had taken all the rubber gloves out of three big boxes and stuffed the gloves in his bag, his locker, and his toiletries bag, he even had someone elses watch as well as his own, Was wearing PG's over his jeans, had about 4 hospiatl PJ's in his bag...so even there in hospital, he's doing the same crazy stuff. He looked so sad and frail, broke my heart i could have (ALMOST) brought him home, but i know it would be even harder if we had to go through this ER thing all over again. He walked us to the door, wanting to go home with us, the nurse came and took him back..
This morning his medical team are meeting to discuss him, what to do, and it's looking like he'll be recommended he go into placement...the final dicision will come down to me, thankfully our daughter will be with me, and i know she thinks it's time...tears welling up as i type this..
So sorry Julia. You have really had it rought lately. If nothing else, you need a rest from all of this. I'm so glad you have strong daughter to be at your side. Please keep us posted because we do care.
Julia your gentle soul must be hurting so bad, and I also am so sorry for the pain you are going through. Love and hugs and aloha to you, you will be in my heart and prayers.
Thank you for your support, Today was not good, DH will be going into placement, just last night he had to be sedated by security at the hospital. We spent all day today trying to get a watch off him that he took off the man in the bed next to him...he would not let it go, he said it was his father's watch and he was minding it for him.
I also found out that last night Dh layed down near the man who is bedridden and fell aleep holding the man's hand...I'm sure he thought it was me...he does that at home, how sad it that! I am trying to find a place, as everywhere, there's no beds, just have to be on the list. As heartbroken and sad as i am, I'm resigned to the fact that's it's time...
L was also arrested some years ago for spousal assault (and felony assault on a police officer). In some states the law is extremely strict about what must be done. She just had the FTD dx (not on paper) but had a recent TBI dx. The lead officer had been at our house a week earlier when our son called 911 due to her aggressive behavior (he called 911 again which resulted in the arrest, he now knows not to call 911 in some cases). The officer wanted to take L to the psychiatric ward, but social services nixed that because (1) it was Sunday (so nothing would happen at the hospital for a day) and (2) it was a neurological and not a psychiatric issue. Some months and several thousand dollars later the felony charge was dropped and L was put on 2 years probation, which she passed and her record has been purged. Besides a court order that we hire a caregiver for her (welcome news to me since she had been fighting this idea) absolutely no help from the justice or social services systems. I must add that the police officer and magistrate put their careers on the line to allow L to come home with me the night she was arrested, state law was clear that the accused must not be with the spouse for 3 days.
Back to the subject, I recommend being familiar with state spousal abuse laws. They tend to be tough for very good reasons, too many spouses refuse to press charges. You need to know how to force the situation from a criminal situation to a health issue so you can bypass the courts and just deal with social services and doctors.
paulc, insightful comments about knowing how to manage the situation so it is a healt issue not a crminal issue. I did NOT know and DH was treated as a criminal, and there was a court arraignment. Luckily the court clerk understood the situation and spoke to the prosecutor on our behalf. He agreed to drop the charges against DH.
It took my lawyers 2 months before he could talk with the prosecutor. The prosecutor's office didn't know who would take the case until the day before the hearing. Fortunately my lawyer was able to speak with the probably lawyer and they were both suffering health issues at the time and that helped them bond. One issue for us is that there should have been two hearings since L faced both misdemeanor charges and a felony. They were able to get this all resolved in one hearing. I must emphasize that in my state the prosecutor could not simply drop charges since it was spousal assault.
We ended up with 2 lawyers. My regular lawyer represented my wife, and I needed my own lawyer in case I was called as a witness by the state. This is a lawyer ethics issue where one person cannot represent 2 people on opposite sides of the court. My lawyer kept emphasizing to the state attorney that the state was burning up the money of the family that they were supposedly protecting. We burned up around $2,000 on the day of the hearing because the state's attorney's office was running 4 hours late (2 lawyers sitting around costs a lot of money).
So . . . if you are dealing with a spouse with dementia it is important to know your state's laws in case they have a violent episode. Also notify the local police and social services in case your spouse gets into any legal difficulties things can be handled as well as possible.
Well after a week in hospital, it looks like Dh might be able to come back home. They have his UTI all sorted, and have adjusted his meds, so far he is calm and placid, just hope it stays that way. They were thinking of sending Dh to Transitional Care while we wait for a permanenet care bed to be available....but as he's doing so well now, I was asked if i'd like to take him home and see how he goes..
OMG, how things can change from one day to the next ...last week i really thought this was it...time! The family were shocked at first to think i would even consider it....but deep down in my heart, I have felt i would like him home a bit longer, as long as i can still manage looking after him. Right now I'm at the hospital every day, so tiring, but I can't help it.....He can go back to his three days of day care, which will be a great help...i just feel like I might be giving up on him too soon... He's so happy to see me, tells me he loves me and worries how I'm going to get home when I 'm leaving after a visit.
If it doesn't work out...at least I'll be happy within myself that i tried my best...that's all i can do.
Julia, I hope it will work out for you if you bring him home. Listen to your head and your heart - and do an inventory of your strength and health. Arms around you.
Your last sentence says it all- your happiness in your heart and soul truly is all you can seek. And it sounds like you are leaving the "alternatives", and "when and if" doors open. I join Vickie in sending you a hug.
First off I'd like to thank everyone for their good wishes...unfortunately as we all know with this monster of a desease things can change in a heartbeart... My then happy heart sank to it's lowest depth as soon as i walked in the door of the hospital
This morning I arrived to pick up Dh to be greeted with the news that, he's had another big meltdown. He was uncontrolable last night until 4am...he disturbed everyone in the ward with his raging... was going from room to room, into other peoples things, bags....they said..saying and doing wierd things like trying to tie his slippers on with his belt...etc.. When i arrived he had not had a shower, and was wearing hospital PJ pants under his jeans, then another PJ pants over his jeans...
He was on respiridone, .25mg, and for a few days it seemed to help and calm him down. Last night he had one .25mg tablet at 6pm and then another at 10pm, but it didn't quiet him down. This is the same thing that happened when he was on it last year at home, so now it's off to a Transitional Care place until we can get permanent close to home...♥
Oh Julia, I'm so sorry to hear this. I know that you were so hoping that you could bring him home. You are right when you said that things can change in a heartbeart. Please know that you have done everything you can & now it's out of your control. Please know that my thoughts & prayers are with you. Sending you (((HUGS)))
Julia, I am so sorry to hear the news. yes, things can change in an instant. It is not unusual for the AD spouse to be calm and ready for discharge then in the next minutes/hours they're back to being the devil. I know...DH was ready for discharge 3 times and the night before or the morning of discharge he became aggressive with another patient and they held him. So emotionally exhausting. I wish you both the best.
You are doing your very best! I'm sorry to hear of the "meltdown," but as you know, it's not uncommon--not that that is any comfort to you. Hugs and prayers.
Julia, it just rips your heart to pieces doesn't it. We want so much to keep our loved ones home with us, we want to give and give until we have nothing left. But it has to be about what is best for your DH, and about safety; both his AND yours. UTI's can make our loved ones really wig out! But as you have said these behaviors have been happening for a long time now, perhaps it is best that he be in an environment that is not only safer for him, but adapted to his needs. There will be a whole staff to try to do what you have been doing alone. Staggering when you stop to think about it that way.
There is no doubt how much you love your DH, nor that you gave it your all. You aren't giving up on him! You love him enough to make sure he gets the best care possible. That is love in it's purest form. I know you are hurting, it is so very painful..... you will both be in my thoughts and prayers ((hugs))
The dementia world can turn on a dime. I'm sorry your hopes for bringing Dh home didn't happen at this time. I certainly can't say it even approaching how Nikki did above but can echo her and send you more of those thoughts and prayers.
Thank you everyone...as of yesterday he's settled down again, I would like to think I could still bring him home, but family and Dr don't think I should...
I think that's all I can do now Nora...today he was quite good they said he needed something to help him sleep last night. At least he didn't get too upset when i had to leave this time.
I am the opposite of many of you. I can't wait for him to get bad enough for placement. Yes, he is still high functioning, knows me and kids, but in so many ways he is gone - gone as a husband. Now he is just someone to take care of and watch slowly die. I am tired of repeating - by him and me, explaining over and over, watching the same programs, etc. I guess I am heartless.
You're not heartless Charlotte...we all know it's not going to get better, you are truthful and saying it as you feel. I read somewhere that placement is when the carer is ready,
You aren't heartless. Your feelings are very normal. We caregivers are living an abnormal life. You are expressing your true feelings and some of us can't do that. We hold it all in until we are ready to explode. Vent all you want; you are among friends.
Charlotte, I agree with the others, you are not heartless. I know your history & you have had a lot of heartache in your life. You have been so under appreciated & now this. I too feel that way sometimes. I wonder how long I can keep this up. I am in the same boat financially as you. If I place my DH I will probably lose my house & have to declare bankruptcy. That isn't the only reason I don't place him, but it's certainly important. He isn't ready to be placed, but a we have seen very recently, that can change in a heartbeat. Like shirley said – vent away, you are among friends.