I think I have posted before about the trouble I am having getting my husband to sleep at night. It is horrible. Have not had a full nights sleep in weeks but it was just that, he didn't DO anything bad, he just didn't sleep, just wandered around the house eating, pacing, smoking but that was all. I call neuro, prescribed Ambien - it didn't work. Called again - they increased his night time Seroquel. Slept better but not good. Night before last he got outside around midnight and I was sleeping. We live in southwestern PA and it was raining/snowing. I apparently had crashed and didn't hear him get up. He woke me by turning on the overhead bedroom light since he can't speak. Imagine my horror when I opened my eyes and saw him standing over me covered in blood from head to toe. He had a big knot on his forehead, his eye was black and swollen shut, his lips were busted open and his nose was bleeding. It looked like someone had taken a baseball bat to his head. His face was covered with mud and his hands and knees were raw. He had obviously fallen face down in the mud, cracking his head on God knows what and then crawled on his hands and knees and belly across the cement porch to get back into the house. Thank God he was able to do that. Called 911. Took him to hospital. Nothing broken but he is very sore and in a great deal of pain. Needless to say, there was very little sleep again last night due to his moaning and groaning from pain. At least he was too sore to get up so I knew he wouldn't wander out again. When the ER doctor asked how long he had been like this and if I cared for him at home alone and I answered "yes" her reply was "God Bless You". I am off work until Monday. Needless to say somehow between now and then the house must be made secure so that he does not get out again. Am open to any and all suggestions.
ehamilton, I am so sorry for both of you. You can probally put locks on your outside doors that have key only opening. I have screen door hooks on my outside doors up high and he can't find them. Also, have one on the door to the basement. So far, I have not needed to use them. Smoking could become an issue. Thank God, I don't have to worry about that. Others will be coming along soon with better advice than I can give, but seems to me he needs some kind of med to make him sleep. I don't see how you are going to be able to leave him alone. You may have to place him.
I know two women who had alzhimers who paced outside during the night, including going to a neighbors house. We had 2 friends in the neighborhood some years ago who got out of the house at night and walked over a mile "trying to go home", and there was someone staying with them. We live in a rural area. It is not uncommon.
Oh my Goodness, this truly was a worst nightmare! Bless your heart, ehamilton. You must feel really desperate right now and it's so sad for your DH. We're not at that stage yet so I can't help with suggestions but someone in this caring family will be able to give you the benefit of their experience. You've got to have some sleep. Sending love and hugs to you.
eHamilton-you will need more than door locks. My husband went out the windows-even when in a locked facility. Exit seekers can be quite creative. You could have the entire house alarmed but that is very expensive.
For a quick fix, you can purchase door buzzers at the home depot or lowes in the hardware dept near the locks. They attach to each side of the door or window and buzz when they are opened. that will wake you up. also you can buy flip locks at walmart or the hardware store. It simply flips over the door and you put it high up on the door, the knob will turn but the door will not budge. the down side to this is that no one can get in if you are in an emergency. personally I use the buzzers. they are battery operated and relative inexpensive.
When I had my MIL home, If I had to go out, I put locks on the outside of the door. Just the cheap kind, but of course that won't help you if you are inside also. I'm voting with the alarms. those bars can prevent help in an emergency.
Caregiver sleep is your best respite. It gives you strength for everything else. I put door locks, just cheapy bathroom locksets, on outside doors and door to the basement. This was after I tried to keep up with her several nights in a row. Following her and saying, "please don't go outside" only further agitated her. Now before I go to bed, I flip the locks and she can march around as much as she likes. It's part of our physical fitness program. I sleep. I have a video camera hooked up to my home network so I have watched her try the doors when they are locked. It does not appear frustrating to her. She just turns and continues her walk around the house. For safety, there is a key above each door frame, the doors unlock from the outside and I have a 3-1/2 pound hand sledge hammer as an additional kitchen appliance that will shear off any door knob if we get trapped. The dog will tell me if strangers come in, then I will shoot them multiple times. (rifle and magazines in separate locations. If by some bizzare string of circumstances she would find a magazine and the rifle, she would have no ability to insert magazine and chamber a round, then flip safety, then fire).
I got a break on smoking. When she was in the hospital there was no smoking. After we got out after 17 days of hell, when she asked for a cigarette, I told her that she quit a long time ago. That was it.
Two little things (re: The little things getting to me thread) that we actually big things sucking the energy out of each day. Now not a problem. Makes me stronger to deal with whatever comes up the next day.
Ehamilton, yes we know sooner than later they will try to bolt. My total relief came with deadbolts on every outside door with extra sets of keys for ER use.. I would suggest that and maybe the window locks as well -I am glad he wasnt hurt too badly and will recoup soon. my best, divvi
ehamilton, I was afraid of the very thing that happened to your husband! That is why I had a key-lock doorknob installed in our bedroom door, replacing the regular doorknob. The window is nailed shut, so he can't open it. As others have said, they get up, they try to open the door, and when they can't, they keep trying. But they don't get angry or upset. They just keep trying. Having had my key-lock doorknob for over a month, my husband rarely tries to leave the room. He still occasionally makes the bed with me in it, but I have become so secure in knowing he is safe in the room with me, I can sleep like a log now. I highly recommend this key-lock. I hide the key under the alarm clock during the night, and have another hiding place during the day, just in case someone accidentally shuts the door. We have keys on our keyrings that are in our purses to get in from the outside.
I am so relieved that he wasn't hurt more than he was! Hopefully, he'll have a full recovery from those injuries soon! Good luck to you!
I don't have any experience with wandering yet (thank heaven) so I don't have tips ... but I did want to send you a big, soft hug. I can't imagine how you must have felt!!! I imagine your heart is still pounding.
My goodness! you must be beside yourself. How is your poor husband doing today? How are YOU. A good day to be thankful, that he made it home and with tender love and care will recover. As you already know, it is time for safety measures. I sleep in the living room , as Lynn says "my mom says I can't have girls in my room!" *sigh . I have dogs and they alert me if anyone even goes in the kitchen say nothing about trying to get outside. But as an added precaution, I bought those child proof plastic door knobs that go over the knob making it hard to open. I also put nails in one side of the windows (outside) preventing him from opening them more than 4 inches. Best wishes, and as dking said, take care of you and get some much needed rest.
ehamilton, I know what you're experiencing. In preparation for my DH's homecoming, I have installed the inexpensive buzzers on each door to the outside, changed all the door knobs so they can either lock him/me in or out (difficult to think that I may have to lock him in a room), installed the flip locks in addition to the deadbolts. I haven't done anything about the windows, but probably should. Big hugs to you - I've been told that at some point they don't wander anymore, but I'm sure the trade-off isn't one we want.
Thank you all so much for your words of encouragement and support. We did manage to have a somewhat normal Thanksgiving. There were 32 of us. Not in my house thank heavens (we rent a hall next door to my house). Our 4 children and 12 grandchildren, my two sisters and 1 brother and all of their children and grandchildren. Considering that I slept a grand total of 1 and 1/2 hours the night before I managed to make it through it. Charlie was up every 15 minutes in spite of a the doctor recommended doubling of his night time seroquel and a vicadin at bed time and another in the night. We went to bed last night at 8:00 with a vicadin. At 12:30 I found him in the dining room floor all bloody again. He had fallen and broke open all the places that he had hurt in the first fall. Took him back to bed after cleaning him up, gave him a Xanax, removed the soft, plush belt from my robe and tied our wrists together with lots of slack in between. Managed to sleep until almost 5:00 a.m. before he discovered we were connected but it was still the most sleep I had had in one night for a long time. He won't eat or drink and is terribly confused. Just received a call from our family doctor who suggested that I take in back to the ER and have him re-checked. Since he is on Coumadin, he could have developed a "slow leak"in the brain since the other night. So, just waiting for help to arrive to help me load him into the car and off we go. Wish us luck.
ehamilton, if he won't eat or drink, and if the ER doesn't find anything, ask your doctor for a hospice evaluation. I think you have reached the point where you need some expert help.
Thanks. We are back from the ER. No "leak" but his Coumadin level was off the chart. They try to keep him between 2 and 3 leaning closer to the 2. He was at 9.4 He has been so banged up and sore from the fall, I think (hope?) that that is why he is not eating and drinking, just too tired and sore. I think that getting him out into the cool air and moving around helped some. We stopped at McDonalds on the way home and he had a double cheeseburger, fries and a drink and finished all of it. Has not eaten or drank that much at one time since last week end. The ER doctor asked me what would help him sleep, I told him that in desperation I had given him one of my Xanax on two different occasions and that he had slept 9 hours like a baby but that the neurologist said not to give it to him. The doctor said "you sound like an intelligent lady and you are with him 24/7. I'm not going to write this in the chart but you do what you have to do. It won't hurt him.
Interesting to hear that about the Xanax. My feelings exactly. DH pcp gave him Xanax .5 6 months ago. When I called for refills this week he told his Nurse he didn't want DH to have the Xanax. He has taken it for 6 months with no problems relating to it so I am calling him on Monday for him to reconsider. Or else prescribe something else for anxiety and sleep. At one time he was on both Klonapin and transene or trazadone before we changed to the Xanax.
I was swo worried about that earlier, but now he mostly sits--watching TV, looking at the paper (he doesn't read it) and 'reading' a book. He can't tell me what it's about or any of the characters. He just says it's a good book. I just pray he doesn't wander off. Everyone in our neighborhool knoow he has AD and will call me if he 'gets away.' Blessings to you, ehamilton. I'm so glad he's ok.
Xanax is sometimes prescribed for AD patients, and can be very effective and be appropriate for short-term use. It isn't "harmful" per se. However, some doctors are reluctant to prescribe it, especially for long-term use, because side effects incude drowsiness and sedation, and therefore Xanax increases the risk of falling. I have also seen reports that it can increase the risk of hallucinations. There are other meds that could be prescribed, instead.
Oh, I agree. I know that what the doctor was telling me last night was a "do what you have to do for now", not a long term solution. I will be in touch with the neurologist office on Monday you can be sure. It is just so frustrating that the local doctors (our PCP and the ER doctors) can't or won't help with the medication issues. We are about an hour from the neurologist and I know that the safest way to adjust his medication would be to admit him since we are so rural and far from help should there be an adverse reaction. But to admit him there means the psychiatric unit which would not be so bad but they only allow visitation Tuesday, Thursday and Saturday. I am reluctant to leave him that long without seeing me. He was really traumatized the one time that happened and had nightmares for weeks after I brought him home. How many rocks and hard places are there to be between in this life.
Actually, I was trying to explain to lmohr why her husband's doctor appears to have changed his mind about giving Xanax to her husband. Like your husband's neurologist said, ehamilton, you seem to have a pretty good feel for what you need to do in an emergency.
It may actually be better that the PCP and ER doctors are not all that eager to prescribe for your husband's current behavioral problems. It really does take an expert, and preferably one who knows your husband well, to know which meds might be best. But this must be sooooooo hard on your nervous system!!!
I agree too, ehamilton. The AD drugs are pretty strong and I know in our case, I have to be very careful about changing meds. Short term is different. Let me know what your Dr. prescribes for sleep. I am going to call Monday also.
I think DH here would have a meltdown in hospital. Anyway, for now, that is not an issue here. But, down the road I can see it coming. Just missing one of the Aricept and namenda meds put things in perspective. A year ago, it did not.
Question: My DH takes Namenda 2X daily. The other night I went to bed early and forgot to give him his nightime meds. I woke up a couple of hours later and woke him up to give them to him. He was so confused about what I was doing but I was afraid it might be dangerous if he didn't get his meds. Can anyone tell me what happens if he misses a dose? Hate to be ignorant, but don't want to make a mistake either. Thanks.
My DH gets into moods where he swears he just took those pills and won't take them again. I have , fo now, insisted that he did not just have them, it was last night, etc, etc, etc. However, when he gets like that, I admit, I don't fight with hime over it. If he insists that he will not take them, I'll take out several, Like Lipitor and the baby asp, and tylonol, (I give for aches and pains) and tell him he just needs his memory. he'll usually accept that. But there have been times when he hasn't and I wonder what long term effects not taking his nighttime Exelon might have. he takes in the AM also. You know, we can't shove it down their throats and the patch won't work for him because his skin is so sensitive, he gets a rash from so many things. And of course his skin is very dry and fragile too.
Kadee - I was looking back at a previous post and see your husband had seizures or similar at an early age and the Neuro didn't think he had AD yet. Could that be a possibility? You may have posted something in between now and then. Or, it could very well be just "one of those weird things that happen" in this "one day at a time journey. During the early AD my DH was off both the Namenda and Aricept for about a month before trying to get accepted in a drug trial and I didn't notice any problem at that time. He has been on both drugs about 5 years and just in recent months have I noticed drastic change with meds.
When Claude went into Hospice, I asked his nurse if she would have the Hospice doctor review all his meds. He took him off several including Exelon and Namenda. I haven't seen any difference since he's been off them. He had been on both of them for several years.
All Namenda, Exelon and Aricept do is to slow the progression of this horrible disease. When a person starts declining into the later stages, they have lost their effectiveness. And they are so expensive :-(
My DH also wanders at night, I think right now it is one night he sleeps the next he wanders. I have put childproof doorknobs on all the doors, except our bedroom and bathroom. I close all the doors when he goes to bed, I only leave the bathroom and bedroom door open. I removed all the knives from the counter and all knobs from the stove. I unplug the microwave and bought and installed locks for the refrigerator and freezer. I have all the meds locked away. He paces and talks to unseen people. He turns all the lights on that he can find the switch for. He woke up last night about two in the morning and I got him to sleep a while this afternoon. He is like the energizer bunny, only he is the super charged one. I will ask for a sleeping aid this time, the last time they upped his Risperdal.
I have often referred to my husband as the energizer bunny. He can just keep going and going, sometimes for 2 or 3 days and then he crashes for a day or two. The agency that provides my daytime caregiver has suggested a bed alarm that will alert me when he leaves the bed. This will be great in order to keep him safe but won't do a darn thing about my lack of sleep. Hope they find a medicine that works for him soon.
Well, ehamilton, get a Duracell battery for yourself... :-)
(I get worn out just reading these posts.)
One recommendation I've seen is to install one of those doors that have two sections (top and bottom) on one room. The top can be left open and the bottom locked. This keeps the ADLO from wandering at will (unless they're particularly athletic, I suppose) and yet you can see them if needed, and they don't feel locked in so much, since they can see out. Maybe you could get some sleep with something like that ... ?
I think that's called a dutch door. Our neighbor has one on her back porch. Her big old dog can look in to see what's going on but doesn't jump over. It might just work.
So far DH hasn't wandered and he sleeps like a baby (most of the time). In fact, he doesn't get up until I tell him it's 7:30 and then he most always wants to snuggle for another 20-30 minutes. Then he gets up. Doesn't always dress. Today, though he put on his church clothes. Said he was too cold and put on his bathrobe. He's been sleeping most of the day. He just came in and can't find our kitty. He's looking all over for him. I have to go and help him find the cat.
Thanks for all the wonderful ideas. Charlie was admitted to the Psychiatric ICU at WVU yesterday. As much as I hated to see him go, I knew that in order to try to find a medication that could help him sleep it needs to be done in a controlled environment where he can be kept safe. Hopefully won't be there too awful long but I intend to spent the time he is there getting family together and doing all that we can to make our home as safe for him as possible so that if they do not find anything that really works, he will be able to roam somewhat at will and I will still be able to get some rest. I called the unit this morning to see how his night had gone. I was just sure that he would be so worn out from the drive and the admission process that he would sleep like and baby and they would think this woman is nuts. Well, he only slept an hour. I would rather have seen him sleep but at least now they will know what I am talking about.
Getting back to the Meds for a second, Our Doctor didn't think Arecept was helping when he first put him on it, so he told me I could stop giving it to him. That was before he was Dx'd and I had begun to notice memory problems. Well, let me tell you, within a week, I was back at the Doctor asking for the pills again. he went so far downhill, so quickly. Years later I read where once they are on those meds, you should not take them off because they will revert to where they would have been had there been no meds. When I think how bad my MIL was at his age (had already been in a nursing home for 3 yrs) I know that the meds really do slow the progression of the disease. My DH, as I mentioned before, sometimes doesn't take the pill for one night, but I don't let it go longer, and if he really doesn't want to take any pills, I'll just have him take the Exelon and nothing else.
My husband gagged on his coffee about 5 minutes after taking his morning medication yesterday, and some portion of each pill came back up. I was afraid to "double dose" him, because I have no idea what absorbed and what didn't, so I did nothing. He woke up at 3 a.m. and stayed up until I unlocked the bedroom door at 6 a.m. and we went into the den and he sat in his recliner and fell asleep before I could give him his coffee cup!!!!!! This morning I had him take one pill at a time in case his swallowing reflex is going. Now I'm at work wanting toothpicks to hold my eyes open.
Right now, I don't know WHAT my worst nightmare is.....I don't know that I want to know....This disease is bad enough!
We just received a letter by FedEx this morning from my husband's work saying they are closing their operations at his mill as of the end of the year. We will lose our benefits as of Jan 31, 2009--I'll have to take out the COBRA insurance (which I think they have to offer as there are more than 20 employees) since no one will insure him on his own now. I am going to file for SSDI asap and hope it doesn't take to long. He is on Short Term Disability until Jan. 21 but after that I don't believe there is any long term disability now that he won't be considered an employee. Supposedly there is to be a severance package which I hope is decent enough to pay for the COBRA. He has been there for 19 years.
My husband has FTD so he didn't react to the news like he would have just a few months ago. He is only 59 so it will be a minimum of 2 years (if SSDI goes through quickly) before he would be eligible for medicare.
I hate having to to all the paperwork with minimal assistance from him (since he gets confused when you question him) and doing everything myself. Thanks for listening.
Deb - Charlie has FTD also. But he also has macular degeneration and had to go on disability at 61 because of his eyesight. It did go through quickly (applied end of February got first check by mid April. But like you, no medicare for 2 years (dumb rule if you ask me. Too sick to work but have to wait 2 years for medical coverage). Luckily, he is a veteran and we were able to get his medication and basic medical care through them until the medicare kicked in.
Deb - my husband has FTD also and is 58 so I know the position you're in. Apply for SSDI immediately - in late October FTD was identified as one of the 50 rare illnesses which qualifies an applicant to have the determination process fast-tracked (supposedly in as short as 6 days). I mailed his application in to SS on November 22 and haven't heard but it was a holiday week.
Call the HR department and get copies of the STD/LTD plans (not just the summary plan descriptions but the plan documented submitted to ERISA). That should help you determine what he will be eligible for as a former employee. Plans I am familiar with usually have a 6 month period for STD and if you are still medically disabled and meet the plan requirements (that's why you need copies of the plans) you would go on to LTD. Being on LTD does not mean he will still be an employee, but he may be eligible for LTD benefits up to age 65. Even if he's receiving LTD benefits they can terminate his employment; you would then be eligible for COBRA benefits through the employers group plan. Most LTD plans will deduct the amount of SSDI paid from the benefit payment he qualifies for so be aware that if he collects LTD payments, when he qualifies for SSDI, the LTD administrator will deduct the SSDI payments back to when they determined he qualified for SSDI from the LTD payments received. Often this means a significant repayment of money previously received and used to the LTD Insurer. Just be awareof what he's eligible for and the pitfalls. Since you're calling HR, why not ask them for the plan details in addition to requesting the plan documents.
LFL - Thanks for the information. I have calls into the HR department at the company headquarters and will ask for the documents. I just started filling out the SSDI paperwork today and will drop it off at our local Social Security office by the end of the week. He is on STD now but that ends on Jan. 12. I started the LTD paperwork but the HR guy I spoke with at the mill that is closing did not know if he would be eligible for it. They were having meetings this week to determine the details of the terminations, I guess.
As an update--Yesterday I took my husband to a union meeting where they were going to discuss the mill closure (the union rep was good enough to call and let me know when it was and that I could attend with or without my husband). I found out that if I can get Social Security for him before Jan 31 he can retire with a disability pension and medical benefits for him and me. If I can't get approval from SS by that date, he can still retire early with a lowering of the pension amount since he is not 65 but we would still get the medical benefits. He can also get LTD during this time. These retirement medical benefit costs are much lower than COBRA would be and he would not lose them. They would turn into his supplement for Medicare when he goes on it, I believe. So there may be a little light out there for at least the medical insurance.