It is 2 am and I have just got D out of the car that he was driving away, and almost drove in to the truck. (yes I know to hide the keys another time on that how he found them)
For those of you that read anything I wrote lately, you know he has been going downhill. This past week has been a new flurry of symptoms, mainly pacing and tossing and turning and thrashing all night.
So I woke up to the sound of the car starting and ran out there in a panic!! He must have snuck out because I usually hear everything. I had a hard time getting him out of the car, he was going to "the place" and was really angry with me for stopping him.
I am going to call a doctor in the morning and ask them to prescribe something, anything, for his agitation and now it seems, delusions. I don't know what to say? Should I suggest something or just give them the symptoms. I do know, I cannot do this, I need help, I need sleep and I am shaky and scared.
I have seen what a horrid time ALL of you are having, I am sorry to ask for yet more advice and comfort, but I am truly scared I cannot handle him.
darn coco. it happens. the keys well no lectures you can read what horrible things can happen. those must dissappear ASAP. but then remember if hes outside at that hr he will probably leave on FOOT. yes this is what we call 'runners' here that want to go someplace and just leave. and you usually dont hear them. time for an alarm of sorts all the doors. we have a topic here about it google alarms. there are very inexpensive versions that work too. most definately time for some pharmaceutical intervention here. yes give the dr the symptoms, and maybe ask about seroquel many here have success with this one, or one of the others used. sometimes its a good fit, other times not. then another should be tried. and dont skip doses, these meds need time to work. what i would do if ask for a minimal dose to start and ask how you can increase as needed. i hope you get some rest. you sound exhausted. if you take him in be sure to have to urine/blood workups to rule out infections too. maybe a good physical would be in order just to make sure. sorry to hear no rest again. its VERY frustrating. and never let your guard down just because they are impaired. they can be VERY VERY crafty and cunningly smart and will find ways to get what they want. you should probably order the safe return bracelet too for him (alzheimer ID bracelet with his info/yours) and get one on him just in case. and find out who you would call for backup to look for him in case he got lost or leaves your house? i know its alot of input here, but we have to be proactive and start getting informed and set up for the whatifs. my DH left many many times and i had to go after him and he wouldnt get into the car, he'd leave on foot and could be out thedoor and several blocks away before i could get the car, purse and keys! its amazing the ingenuity they can muster. its why i chose to deadbolt all the doors and bedroom door to be able to rest knowing he couldnt get out. it may be something you need to look into. (Coco))))
I cannot tell you how much this means to me, to have you to talk to right now. Last night I had a brief visit with the people over the fence, and a small glass of wine. You know, NO ONE NO ONE NO ONE can understand except us. They really don't see how hard it is, and that he is SICK not just forgetful. That is what makes is so lonely. They don't see why I am worried to even leave him alone when he is within ear shot.
This is the first time he has seemed angry. And you are right, he was trying to sneak off , to "that place" I knew divvi, I knew what with this past weeks agitation that something was changing. It is a new phase now. Likely this is the time, when I will have to stop working like I do. The raggedness of trying to do everything feels like it could kill me.
Divvi, now that I have a home care nurse that is supposed to be in charge of his care, should I call her, or his doctor, or both? When she came for the home visit the other day, she examined him and of course he was on his best behavior, trying to be sharp, (beside saying it was November of 1969) She did not seem very educated on dementia, when I asked her why does he do the up and down, up and down, and pick up lint, and pace, she just said he is bored...
He is in there now, just tossing and turning constantly. and yes, I am in the process of getting the ID thing together. Now, locks and alarms, and now I am going to cry.
i would call them both. the dr may want you to bring him in to rule out anything going on with him with some tests. most dr unless they know the patients issues wont just rx a med over the phone but some do if you know them well. but with any new med you need to be vigilant. it may make him sleepy which sometimes is a blessing. i gave the zyprexa which we have had discussions with, others seroquel, its a hit/miss at first finding the right one that works. the nurse should be notified and tell her you are calling his dr too. maybe she will have answers for you. just tell her all that is going on and you see much more aggitation and anger and wandering now than when she last saw him. the faster you get on things the faster hopefully relief for his issues. or if the nurse is the one who will be prescribing the meds then her for sure first. whoever will get him on something asap. lets hope she knows more about dementia than you think. she will probably have to get approval from a dr she directs with before prescribing meds i would think. maybe ask his reg dr if you dont get anywhere with her. sorry but yes the locks seem to be a need to keep them inside and safe. they can disappear in a heartbeat. and usually at night and then the fun and games start. i am sure as the day is starting here now, that others will be along with more input. ps the home health nurse may be able to order some urine/blood tests as well to rule out anything. ask about it.
Coco my husband was also a runner. Oh how cunning and sly they can be. I insisted my husband be started on seroquel and the dose was increased almost weekly to take effect. It finally did work.
Coco...Good advise from divvi as usual. My dh's doctor took him off the seroquel and I was glad because it made him zombie like. Put him on Risperidone...and it seems to really mellow him out...really could be to early to know if it will continue like that...but yesterday he was very calm except for several small spells. Also he gave him a prescription for Ativan for resting better at sleep time. I suggested to the doctor that it might help him and he immediately said, no problem and wrote out the prescription.
Also, someone yesterday posted about an alarm pad they put by the bed and it alerts you if your dh gets out of bed. I don't know anything about this but you might want to look on the net and see what is available.
You must be a wreck...my heart goes out to you. I'm sure others will have suggestions for you. Keep us posted. (((hugs)))
oh coco. I am sorry for what you are going through now. For me, the answer was getting the locks that need a key to get out of the apartment. Of course, in an apartment, you only have one door. That lock was a Godsend. Of course, he would yell help out the window to passers-by but at least I didn't have to chase him anymore. There is not a place I go now that he is gone where I don't think that we had a chase going on or that he was accosting people asking weird and unintelligble questions. I am just so sorry that you are having such a lousy time.
Sorry, jang* but I had to laugh about your DH yelling "help" out the window to passers-by! Coco, in addition to the locks, I have a motion sensor close to the back door and the pager on my night table. It's very loud and wakes me up if he gets close to the door. Bless your heart.....nobody understands what we're going through except our family here.
i got a smile out of that too jang* sorry. but it would break my heart to hear DH yell for help. :( i remember all too well the looks i saw when i would leave him with a sitter the first times locked behind deadbolts, and i could see him mouthing my name thru the windows as i left in the car.. just pitful pitiful. it is heartbreaking to see them so unaware that what we do is for their safety. what a miserable disease.
alarm mats can be found thru joans homepage at Amazon! this one is only 20dol. there are others all pricings. plus they have door alarms that arent too pricey too.
Coco, I am sorry you are going through this with your DH. I hope his doctor can prescribe something that will help him and you. Good luck and God Bless.
We have a tiny house, I can usually hear a pin drop. Locks for sure though if not monitors. I am awaiting response from the Dr. and nurse. He is really strange this morning, I don't know but it is like something snapped over the weekend.
And now I have to seriously consider not working, this is awful for me. Finances will hurt of course, but how I will miss my market each week, it is like the only social life I have besides a decent income. He cannot crack the coconuts for my product anymore, long story but without his help there is no one that can do it. I can still do my gourd art and perhaps put it in shops.
One of you on another thread made a comment that you are not ever really happy anymore, after this experience. You are ok, but not happy. I miss being happy.
Coco...If you can get your dh on the right meds. that work it may help alot. You know how frightened I was over the past weekend and now that Jim has been on a different med. for several days (Risperidone) he is relatively calm. His memory is worse, but he is not like he was on and before I took to the ER. Also, don't forget to mention the Aamenda that you need and the VA should approve if he is this bad....at least they should we and others get it.
This behavior is so frightening...but, it can be controlled.
Oh Coca so sorry you are having such a rough time right now.Must have scared the crap out of you when you heard the car start!! But do not feel bad because as the others have said THEY can be very crafty at times. I follow Paul around all the time and he still slips away from me and gets to that dreaded bathroom alone!!! I am sure meds will take some of the edge off for him but you need something to help you cope too. I know I would probably blow up the house without my nerve pills. I know it will be tough to give up your market day but this DISEASE does not care what it takes from US!!! Just know I am thinking of you and Dado.
dazed and divvi, if we were not able to laugh at some of these things, there is no stage in this disease that we could get through. When Gord kept running away, I would say to my friend that I wondered why people kept bringing him back. If we don't try to laugh at things a bit, life is just not much fun.
We're back...had urine tests, blood tests, and even a chest X-ray. Nurses and doctors were all alerted, and now I have the lowdown on who I am supposed to contact, they gave me a booklet thingy. (met the home health care nurse and I can call her with all concerns), I was fairly impressed with the help I got.
Anyway there I was with his new doctor, AGAIN, it was only a week ago. He told me no UTI, blood was good, there were some small nodules in his lungs that may or may not be something. NOTHING to do with the dementia so I will do that in a few weeks.
He was ready with the Seroquel, 50 mg., and told me to start out with half. Oh man I could hardly wait to give it to him, HE WAS SO ANTZY and fidgety when we got home, it is pretty obvious home is the place he acts out.
So as I suspected, and as you pointed out divvi, the 5 minute between peeing is an obsessive compulsive dementia symptom.
This is weird, when I told the doctor about him trying to drive away at 1 am, he said, well make sure to have a clock and a calendar near him so he knows the time and date... ???? ohhhhhh kkkkaaayyyyy
Just gave him the seroquel cross your fingers , and toes, and the prayers for us. Dr. thought the namenda would not be good JudithKB..
oh and,,,have some bells hanging on the door until I get my alarm things ordered, through this site of course. and...I wore my BIG GIRL PANTIES today.
Started on Monday am when H knocks on my bedroom door: "I am leaving now to arrange for buying the restaurant". OKAY. I diverted and distracted (with meds and hopefully constructive talk); something like, "well, I have a dentist appointment today so let's just do that tomorrow"- all lies.
I am such a phony; always lying and smiling and acting, most of the time I just can't stand myself anymore.
Bad week here also. Hid his car fob because he threated to drive himself to work (86 and retired 11 yrs. ago). Hasn't noticed it is missing yet. Will say that he must have lost it and we will get a new one. Lies, fiblets, whatever they are they have become an important tool in trying to survive.
My dh looks at calendar all the time; still doesn't know what day it is, month or year for that matter.
Abby....you are not a phony. You are the most important person in your dh's life. I think we could all win an Oscar for our "deceiving".
Glad you got your needed meds for dh. Hope they work. Maybe it is too late for the namenda to be of any value. Personally, I have a love hate relationship with the VA. The doctor we have with the VA is a total joke. Yesterday I talked with the meds. nurse to get my dh's prescriptions filled by the VA. Well...he takes these two meds for the jerking at night which I have been paying for...no big deal because they are less then $10.00 with our insurance. She said she couldn't approve them and had to get permission from the Jerk VA doc.
Well she called me back and said he wouldn't approve them until Jim went to VA hospital and was evaluated by the neuro there. It only takes like 3 months to get an appt. with this guy....no way was I going to wait for that. Also, our personal neuro had already done two EEG's on my dh and confirmed he had a siezure problem. This makes me so mad. VA dr. is afraid of his own shadow. Thank God we only have to see him once a year.
Coco...it may take several days for the meds to kick in. I hope they work and really hope you get some rest and things settle down for you. It has been a hellish couple of weeks for both of us. ((Hugs))
He is sleeping long and hard. Very little tossing and turning, and he got up only once in the night. I helped him to the toilet as he was a little shaky.
So this is it, this is how it is going to be, my man is on a new road. Hitching up my big girl panties, and hanging on.
remember hes also probably very tired after the ordeal of no sleep. once the meds kick in and his body becomes more accustomed to them he may be more alert and peaceful. we all have a pair of bamas big girl panties in the drawer just for times like this!!
Coco....had visions of you hitching up those big girl panties to suspenders to keep 'em up. Made me smile...thanks for that. Sounds like it is time to fasten your seat belt too. Hope your days ahead will be more tolerable with the new Med.
Aunt B....actually, ...I found a pair I used to wear before I lost 45 pounds. they are great, I can almost pull them up to my chest and it feels kinda good..
whenever I start to get whiny, I give a good pull and it makes me forget my troubles.
Thank you so much for your kind and encouraging words. Certainly I get none of those here at home. None from parents either. The latest from Mother:
"Are all the clocks in your house digital?"
(me) "No, I have a small clock on my bathroom vanity that has a clock face."
(Mother) "Does it go tick-tock?"
(me, slow to catch on) "Yes, and it is kind of loud."
(Mother) "Well, I hope that whenever you hear it you are reminded that your life is like that clock, just ticking away while you do nothing." "You know I am just telling you this for your own good." "I wait until your father is out on the course so he does not have to hear any of this."
(me) "Yes, I know you are just saying this out of concern for me...." Same techniques I use with H- sheesh!
I think she does and she cannot be more disappointed in me than I am in myself.
Father goes to Vanderbilt for his brain cancer follow-ups. This has been for several years now. There, they hear a lot about a coach, whom I now realize may very well be the same mentioned in another thread here who referred to dementia as something that "I can beat".
They have never really liked H and think, like that coach; "he could beat this if he was not lazy". I don't know that the coach ever said lazy, but this is really their take. I can't change their minds about anything any more than I can change H's mind.
On another thread you mentioned your moving plans which gave me relief in remembering good times from visiting your area. I am so thankful to you for bringing that up because it let me go back there in my mind!
I brought this thread up because it is relevant to follow. As the headline says, "Need help", well no ok for now.
Just updating, it has been 2 weeks since he has been on the seroquel. The lower dose was too good to be true I guess. Starting two days ago he is once again getting intense sundowning and agitation, and thinking he has to pee every 5 minutes.
He was really bad today. In and out of the house, makes a big deal about putting on shoes and socks and sweater he does not need, goes outside, then comes back in 2 minutes later. Then does the whole thing again in 15 minutes.
darn. So per Doctor, give an extra dose in the morning, right now he gets half a 25mg. at bed, so I need to give him half in the morning...
Sad it only worked so well for so short. I sure hope he does not get zombie like when I give him more. He must be a tough little bugger, he still gets up and paces after taking that stuff. Must wear off , so now it is 6:30 p.m., first dose, and 8 a.m. 2nd dose, when he has breakfast
oh and, I am still waiting for final approval of 10 hours a week respite..oh please..hurry..
I am so sorry. You are so kind and generous and wonderful, and I wish I could do more than send you support and best wishes.
While H has never taken seroquel I would often wonder, how can he take ativan and within an hour, or less, be up and down, pacing and staring and into and out of the bathroom over and over and over again....
Coco--maybe others with more recent experience will chime in--my husband was on Seroquel so long ago, I'm not sure of the doses. But I do know, half a 25mg at bed is next to nothing! I believe the normal dosage to start with is 25 mg, then 25mg several times a day, gradually increasing as needed. I think Steve was up to several hundred mg per day and was on it for 4 years before it lost its effect. The SOP is to start very low and increase very gradually, because it's a powerful med. Maybe it would help you to research it online or ask the doctor what the game plan is re the dosage. That way you won't get your hopes up during all the interim adjustments. It is good that docs are cautious--I think they have to be because of the black box warning--but it does make the whole process take longer. Sad to say, it can take a lot of trial and error--no miracle pills were found here! But there are good drugs out there to address the symptoms and a skilled doctor will know how to use them.
agree with marilyn. probably 25mg in morning and pm would be better but yes confirm with dr. these drugs are intended to be able to use in to the hundreds of miligrams as i hear. but yes very powerful and needs a very gradual approach. if its too much you can wean down a bit gradually. everything with gradual effects is better. good luck. it does happen they grow tolerant sometimes very quickly. divvi
Coco, my dh has been on seroquel for 3.5 years now and is currently taking 300 mgs/day and is NOT a zombie. Marilyn is right-the protocol is to start slowly and increase as needed. My dh had very similiar behaviors as yours-severe sundowning, constant pacing and difficult behaviors (sometimes stubborness to borderline aggressiveness). The geripsych started him on 100 mgs of seroquel - 50 in am and pm. I agree with marilyn-1/2 a 25 mg dose is very, very low. Speak with dr again for guidance on increasing if the behaviors don't get better.
Coco I got these from the Alz.Org site 2 years ago they work flawlessly http://alzstore.com/Alzheimers/door-alarm-monitor-with-remote-plug-in-alarm-door-alarm.htm
If hiding the keys doesn't work take your car/truck to a friendly mechanic and ask them to install a hidden battery switch. This can be placed under the dash or wherever you want to hide it. It shouldn't cost more than $50.00 and it renders your car inoperative key or not. That way even in a rage and he tries to overpower you there is no way that car is going to start. Just be sure never to let him see you flip that switch if you're going out together. Somethings they don't forget.
Thanks marty! Yeah they can be sneaky, I see his beady brown eyes watching me when I hide the keys.
As to the Seroquel, thanks everyone good information. I have given him his first 'morning' dose this morning, only one half of 25 mg. though. If I do not see an improvement I will up it to 25 mg. twice a day. I will have to let the doctor know so that we can make sure to get enough pills. They only send us 15 pills at a time, 2 weeks worth. I am sure that can be remedied.
Well if his dose is really that low it is no wonder. I did see some improvement at night even with the little bit. Love you guys, I will let you know how it goes.
When we bought our car years ago L was anxious that it would be stolen before a anti-theft system could be installed. So for the meantime the dealer converted the cigarette lighter (which is now called a power outlet) to be a dead man switch. If it wasn't pushed in then the car wouldn't start. It would pop out so you always had to push it in to start the car.
The danger is when anyone else drove it. Or if you had valet parking. The most dangerous case was having the car washed and they needed to drive the car out of the bay before the behind it crashed into the rear. It never happened to us but was always a worry.
Paid $100 to have this done and $100 later to have it undone.
Coco--I took the car to a place that installs car sound systems and had a "kill" switch installed. It was a toggle switch hidden way under the dash--I think it's the same thing Marty described above. Cost me about $60--was well worth it for peace of mind. Ironically, we had one in a car, years and years ago, before security systems were available for vehicles.