Mom, age 80, probably at Stage 6. We do have 24-hour live-in care M-F, then split shift on weekends. Problem: Mom is not sleepy. She will go at least 3 days without sleeping. She seems to doze off a bit here and there.
Dr prescribed 5 mg of Ambien. Did not help.
Dr said to give her two Seroquel tablets, 25 mg each. Did not help.
I left a phone message for the Dr today to find out, what next?
What are my options? The poor aide is not getting her rest.
These are the options they I am aware of so far:
a- perhaps dr can prescribed another med for sleeping? Anyone know of any meds?
b- make monday thru fridays a split shift, one aide in the day, another at night. I like having the aide there 24 hours so we don't have to worry about the other aide arriving on time or not.
c- enroll Mom in a program that picks her up at night and brings her back during the day. This sounded good but only the van driver is there with the group of patients driving to pick/drop them off. Imagine trying to drive and keep an eye on more than one patient?!
Help! zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz zzzzzzzz
My family dr. said that I could take valium to help me sleep. You and her dr. would just have to try working up to the correct dose. It takes me 10 mg. of valium when I cannot and have not slept much for days.
Just a thought.
We do not have that problem yet with my dad. He sleeps all the time, if we would let him!
No, she is not drinking any coffee or tea. There are times that she sleeps alot. I think this alz brain is just simply stuck on staying alert. The aide would put her to bed and after a few minutes Mom would get back up again, walking, babbling, talking out aloud, perhaps even hallucinating--seeing people. The aide was telling me over the phone that she can tell during the day when my Mom is heading towards "partying all night" cause she is very active during the day... doing the same thing, talking, walking. I believe we have tried everything. Putting soothing music, letting her walk all day, meds. Perhaps a stronger dose of sleeping pill will do but the Dr insist that it is not good for alz patients but at this point, who cares? No one is getting rest! I need the aide to be well-rested too so she can take better care of my Mom. I feel so bad for her. The aide, fortunately, understands and is sympathetic. She puts me at ease and I am sure she feels appreciative that I am concern and stay concerned. Will keep u posted. Thanks for all replying.
I can sure relate to this post! Last night was a total nightmare in our house. My daughter and I got no sleep at all and it's really hard to deal with my husbands behavior all night and have to take care of him all day too.
To make a very long nights story short my husband starting getting ready for bed about 7:30. He wanted to go at 7:00 but I tried to get him to stay up a little longer hoping he would sleep a little more. Well, he got his pj's on at 7:30 and puttered around until about close to 8:00 then took his pills and went to bed. In that time frame he got up about every 15 to 20 minutes and would come out and say I'll just sit for a little while. OK, we'd say, then he would get up and go back into his room again and again. Each time he came out he would go on and on about something that we knew not what! Couldn't make sense out of anything he was saying. We stayed up to make sure he would go to bed and at 10:50 he came out of his room fully clothed and ready to eat a bowl of wheaties. He was done for the night. We let him have his wheaties and then tried to get him to go to bed. Nothing doing!!! We finally said it was time and we turned the lights, TV etc. off and went to our rooms. Then he started his rampage. He paced back and forth from one end of the house to the other talking at the top of his lungs about who knows what and would have a phony laugh, at the top of his lungs and then just yell at the top of his lungs. He kept pounding on our bedroom doors and hitting the walls. He turned the TV in the kitchen on and pounded on the counter and sink yelling and telling me I was crazy. I got up many times during this tried to calm him down but nothing worked. He kept looking for the cowboy (paperboy) thinking everyone should be up and ready for the day. He finally gave up around 3:45 and I did get maybe two hours sleep.
His doctor tried him a while ago on Ambien 5 mg. but he got really goofy on that and was worse than without it. I have asked for something to make him sleep but the doctor says that there really isn't anything that he can give him. This life just stinks! My husband just turned 75 in December and I am 72. My life the last five years (that's when he was diagnosed) has been a living hell. I have no social life anymore, no traveling, no fun, no anything. Thank God for our kids. We see them a lot but it just isn't the same as having your own life. He doesn't enjoy anyone or anything and makes it clear that he wishes they would go home or when we are at their house he wants to go home. They try but why make their life miserable too. Our oldest daughter lives with us to help me out. She is divorced and gave up her apartment to move in with me two years ago.
Sorry to make this into a book. Had no intention of doing that. I guess it is good for the soul to spit out all your anger and put it into words.
The time comes when both the patient and the caregivers are better off. They work shifts - a new nurse or aide comes in who doesn't mind if he stays up all night or sleeps all day. His rantings and ravings are ignored and if he becomes excessively aggressive a doctor is called in. Medication is given.
YOU meanwhile get your life back!
Just think, you could get up in the morning and plan your day, go shopping with friends, visit your grandchildren, go on a weekend trip.
Financially it works like this (here in the USA) - the patient is required to pay for his own care until his money is down to a certain minimum. After that he can apply for Medicaid and get the same care for only his social security check minus a small allowance. If you own your own home that is NOT counted since you still need it to live in.
The cost seems daunting, and on top of that the nursing homes have an undeservedly bad reputation, and our vocablulary is full of insulting phrases such as 'they put their mother away in a home." or "one mother can raise 5 children but 5 children can't take care of one mother."
I know, Ive been through it all.
BUT, everyone is happier now that my Mom is in a NH, not only the caregivers (first me for 5 years, then my brother and SIL) but amazingly, even the patient was much happier with the set routine of the NH than she had been 'at home.'
Think it over.
Itis not 'putting your husband away.' It is getting him the care he needs, and getting yourself a real life again ...
oh my gosh! Thanks for sharing. This is exactly what my Mom does! I am still waiting for the dr to call me back to discuss our options. Just spoke to the aide and said my Mom is now sleeping. I told her to please please get herself some sleep too! I will keep searching for answers! Stay in touch! God bless you and your family, especially your daughter that is there physically to help out! I live in NY. There should be some services in your area for some kind of help and/or respite care. You need your life back, at least a bit of it, so u and your daughter won't get sick. It's insane!
just wanting to say thanks for posting. My mum is not as advanced in her dementia but i I could cheerfully kill someone for a sleep that goes for longer than 4 -5 hours. I have her name on the waiting list for a hostel/ NH bed but that could be a long wait.... I have to get up to toilet her in the night or else i have to change a wet bed. sometimes it happens anyway...then after i've been up I find it very difficutl to go back to sleep...
the night before last I just burst into tears when my husband woke me to get up.. I agree with Jan... I love my mum .. but i just want my life back!.... I am doing all in my power to get a placement but have to wait as mum is only 'early dememtia" and when assessed in the day is mcuh better than she is at night so it doesn't look as if she needs that much support..
this forum is the only place where people truly understand and don't try and jolly me up.. thanks for that. it has kept me sane over the last few months
hugs to you Jan & Min, I will think of you both tonight when I am desperate for sleep and not feel quite so alone
That's the beauty of this board. You are not alone and there is some comfort in knowing that. I don't know what I would do if I didn't have this board to turn to for support, information and just the feeling of love and compasion. Thanks to all of you.
Just for added info, my husband has been on a waiting list for the Veterans Hospital since September. They tell us that it is an eight month wait. I just hope by the grace of God I can make it that long. I hate to place my husband in one place and then uproot him and he has to make the adjustment to another but if things keep getting worse I might have to find some place for him until a spot opens up.
We have an appt with Mom's dr tomorrow. She didn't sleep at all last night. Spent the night talking away. I hope she sleeps tonight for her sake and for the aide's sake. There must be something that we can do. There must be some sleeping pill out there that is safe for dementia patients! This is not healthy for the caregiver! What do nursing homes do? I lose sleep myself just thinking about it.
In the NH where my Mom is, a person who can't sleep can sit in the community room and talk to anyone nearby or herself. There are personnel on hand all night so it doesn't matter. The next day she will be awakened at the usual time and encouraged to take part in all daytime activities, so that she will probably be more tired the next night.
Sleeping pills are rarely used. I think it's because Dementia patients are already so confused that the pills make them worse.
Is your Mom's night aide the same one who cares for her in the daytime? Maybe another person is needed, who will think of this as a night job and not even try to sleep.
Ask your doctor about Trazadone for sleep. It works great for my husband. We tried Seroquel and other things but this is the best. It is not a sleeping pill but an antidepressant and the side effect is drowsiness. His Neurologist gave it to him. He started on 50mg and is now on 100mg.
Thank you for writing. Every bit of info helps! We did see the dr today and we explained the situation. He understood and prescribed Xanax 1 mg, a valium. Not sure if this will help but at this point we are willing to try anything. Dr said to continue with the seroquel 25 mg, 3x daily and if Mom is not sleepy and acting wildly alert, to still give her 2 more seroquel plus the Xanax. We are just going to try the Xanax alone at first the first night she acts up again.
Thank you for writing about the Trazadone. If the Xanax doesn't work, I can suggest this to the dr. Take care.