40 hours without sleep and counting .. help!!

[yoyo]

Hi there.
we have been having very troubled nights with mum who was 90 last week. GP has tried some meds and have now decided to give sleeping tablets permanently, mental health team doc came out and decided to give Trazodone early evening to relax mum because if we just give her the sleeping tablet Zopiclone she is so wound up it doesn't work.
last night we gave her the first trazodone at 6 and the zopiclone at bed time, they did make her slow in movement but only until about 1 am and then she got her strength back. and has been awake since. we again gave the meds as directed tonight and she is still going. talking to people in the room, calling babies etc.
I will call the doc tomorrow but wondered does anyone else go though this, is it something we have to go through, not sure which is worse - anxiety and no tablets - or tablets that make her off her head... any advice or shared stories are very welcome.

 

[nita]

Hallo yoyo

How awful for you. Just thought I would respond as it's quite late and you might like to hear from someone.

I'm not an expert on this but I have read that sleeping tablets are not a good idea for dementia patients. Just looked up trazadone and seen that it is used to treat major depression and anxiety disorder. Could this be the cause of or exacerbate her agitation? Was it an emergency out-of-hours doctor who prescribed the drugs as I wondered if she was seen by a psychiatrist/dementia specialist regularly?

My worry would be that the trazadone, which you said slowed her down, could make her unsteady on her feet and liable to fall. It certainly sounds as if the medication is not right for her. I have read of other dementia patients being given anti-psychotics for the type of symptoms your mother has. Is she normally psychotic (you say talking to people etc.) or is this a side-effect of the drugs she has been given?

My experience is with other mental health issues. A relative was given an anti-depressant which made him go manic, talking all night, etc. This is a young person, not dementia related, but with paranoid symptoms.

Sorry if this doesn't help but I would certainly ring the doctor straightaway in the morning, if you can get through the night. They should give your mother something to calm her.

 

[garnuft]

I have no knowledge but I know I would want to be drugged into peace and oblivion rather than angst ridden.

If Mum was younger it wouldn't be an option, she should be alert and doing 'life' the next day but at 90...if I get to live that long and I am distressed?

I want some mind-altering, solace-giving drugs.

Hope you find a way to help your Mum to be comfortable.

 

[yoyo]

Hallo yoyo

How awful for you. Just thought I would respond as it's quite late and you might like to hear from someone.

I'm not an expert on this but I have read that sleeping tablets are not a good idea for dementia patients. Just looked up trazadone and seen that it is used to treat major depression and anxiety disorder. Could this be the cause of or exacerbate her agitation? Was it an emergency out-of-hours doctor who prescribed the drugs as I wondered if she was seen by a psychiatrist/dementia specialist regularly?

My worry would be that the trazadone, which you said slowed her down, could make her unsteady on her feet and liable to fall. It certainly sounds as if the medication is not right for her. I have read of other dementia patients being given anti-psychotics for the type of symptoms your mother has. Is she normally psychotic (you say talking to people etc.) or is this a side-effect of the drugs she has been given?

My experience is with other mental health issues. A relative was given an anti-depressant which made him go manic, talking all night, etc. This is a young person, not dementia related, but with paranoid symptoms.

Sorry if this doesn't help but I would certainly ring the doctor straightaway in the morning, if you can get through the night. They should give your mother something to calm her.

thank you for replying I have my daughter for support tonight, mum is just chatting away and wanting her shoes to go out, she's having conversations with various people . she is unable to move her mobility has gone and her upper body is weak. it was the mental health psych that came out from the clinic because I am unable to take mum there. he said he was reluctant to prescribe anti psychotic for mum and said only in the most extreme circumstances would they. we plan to move mum to a home in a few weeks now because I can't take any more but I would like her to go stable and for it to be a smooth transition -thanks you and I will be calling the doc am and will post an update - love to all

 

[nita]

Yoyo, have you seen this leaflet issued by the Alzheimer's Society:-

http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=110

"Medication may be given to help someone sleep to reduce the risks involved in getting up at night and the resulting strain on carers. If sleeping tablets (hypnotics) are prescribed, it is likely that these will be one of the newer tablets such as zopiclone or zolpidem, which generally don't make people feel unwell. It is also possible that people will be prescribed a sedative antidepressant instead of sleeping tablets, such as trazodone.

If the person and their carer feel that medication would be a good option, the tablets taken should meet their specific needs. For example, some hypnotics last for a short length of time. These tablets are most useful for people who have trouble falling asleep. Longer lasting tablets are more useful for people who find it hard to stay asleep.

Issues to consider when treating sleep disturbance

•If excessive sedation is given at bedtime, the person may be unable to wake to go to the toilet and incontinence may occur - sometimes for the first time.
•If the person does wake up during the night despite sedation, increased confusion and unsteadiness may occur.
•Hypnotics should only be used on a short term basis (less than two weeks), and so are best used intermittently, for example, when the carer and person with dementia feel that a good night's sleep is necessary for either or both of them.
•The use of hypnotics should be monitored by the doctor.
•It is important to have realistic expectations about what duration of sleep should be expected. Older people rarely sleep for more than five to six hours at night, and in people with dementia this will often be spread out over a full 24 hours."

I wonder about giving your mother two types of sleeping tablets at once? I hope you can get some answers from the doctor tomorrow and he can get your mother more stable.

Like you, I would want her to be free of extreme problems before she moved as you can't monitor it so closely once she goes into care.

Hope you can get through the night. You must feel terrible going two days with no sleep. Perhaps she will tire herself out and drop off soon. Glad to hear you have your daughter for company.

 

[PatsyAnne]

Hi Yoyo. I often go for 40 hours without sleep as my husband seems to start his wandering and talking out loud as soon as I lie down. I have to sleep in a separate room as he doesn't want me in 'his' bed. He is on memantine to calm his aggression and I have to say its working up to now. His consultant prescribed a low dose of diazepam for nighttime but it made him very aggressive. As a result it was stopped and we're back to nocturnal wanderings. Its very rare that I get to sleep before 4am but it seems that its very difficult to find the right sleep medication for dementia sufferers. I'm interested to see if anyone can advise as I'm on my last legs too.
I hope you get a good nights sleep.
Take care
Love PatsyAnne xxx

 

[CJinUSA]

This how my father behaved. He had vascular dementia. He'd sleep in snatches during the day and then be up all night. Sometimes he thought my mother was an old girlfriend. Once he thought I was his mother. Then he would have perfectly calm and lucid moments, and then back to talking about his mother and going to help her because people were trying to hurt her - endlessly.

We did not have the diagnosis until after about 4 days/nights in lalaland like this, he finally fell and really seriously injured his back - so much so that we had to get him to the hospital in an ambulance. That's where he died about 1 1/2 weeks later. They put him on Haldol, which I took to be the beginning of the end. They finally straitjacketed him to keep him from getting up and going about. I don't think they use these things any longer (he died in 93), nor do I think they should, but they really couldn't control my father. He had been a strong man almost all his life. My mother refused to have him back home. We were glad when he finally reached his rest. In one of his lucid moments, he said, "You know, I really don't like being like this" to me. I kept the tears back, but it was a tough moment. I hope they will find a medication that will help your mother and spare you this kind of long, dragged out situation.

I wish I could offer some suggestions. It seems that a different drug might be tried.

 

[angecmc]

Hi, we had this with my Mum, she wouldn't sleep day or night, it was a nightmare, my Dad was on his knees, this was part of what eventually led to Mum going into permanent care. The Dr tried all types of sleeping tablets none worked the only thing they did was increase her unsteadiness and made her have many falls. She went into emergency respite care, still not sleeping, but they coped with her, obviously because they have night shift staff who are not needing to sleep They put her on Trazadone and risperidone and this seemed to calm her and eventually her sleeping pattern gradually improved. She then moved to her permanent home and is still on Trazadone and risperidone and they put her on Aricept which also improved her behaviour, she has been in the home for nearly 8 months now and we feel the Aricept is now no longer working as she has regressed back to how she was before the move. However this time they increased the trazadone and she is beginning to calm down and sleeps a bit more at night. My Mum also was seeing babies and cats and dogs that were not really there. I would not worry about her behaviour going into the care home, they are used to dealing with all these behaviours. A lot of these medications also take a while before they start working. It sounds like that care home admission can't come soon enough for you all, there is nothing worse than sleep deprivation. Good luck xx

Ange

 

[Bod]

Sleeping tablets NOT working

We had that with FiL.
Zopicione made things worse.
Temazepam was a nightmare, even worse again, midnight to three AM in A&E after 2 falls in 1 night!
Had him taken off Amitriptyline, and so far much better, he's slowly learning to sleep more, 4-5 hours is now a good night, with no "chemical help"!
Try to reduce their stress levels, that is what seems to be most help to us.
Good Luck
Bod

 

[Wildflower]

Hi yoyo, with regard to Zopiclone, I've found that they have worked for my dad who is nearly 88. The initial dose was for 3.75mg which made no difference at all, but this was gradually increased to 11.25mg which works. I've been told by the CPN this can be increased up to 15mg if necessary. Perhaps your mum is not taking a high enough dose. I understand though that it may be unsafe for some people to take a high dose because of the risk of falls. In my dad's case he has no history of falls and he's had no side effects from this high dose. I hope something can be sorted out for your mum. x

 

[Raggedrobin]

I have this problem with my mUm, was talking about it on another thread. my mum is 96 and i am currently her sole carer, I am at my wit's end (sorry Witzend). i will be interested to see if when she finally sees a psychiatrist they prescribe anything for her, as she has fallen badly already.
Oh gawd, its 5pm and she is having a noisy sleep, where she starts calling for me. i was just hoping for a nap, i have to take them whatever time of day or night it is, my own bodyclock is totally messed up.
Cj, what a moving thing you wrote about your father, that must have been awful! You seem to be someone who is terribly wise in your posts, but perhaps have learnt that through tragedy? X
oh no, she is moving about, I had better stop her trying to get in a pickle again, That was a record sleep, about 30 mins, and now she thinks it is breakfast time, as she does every time she wakes up.

 

[CJinUSA]

I have this problem with my mUm, was talking about it on another thread. my mum is 96 and i am currently her sole carer, I am at my wit's end (sorry Witzend). i will be interested to see if when she finally sees a psychiatrist they prescribe anything for her, as she has fallen badly already.
Oh gawd, its 5pm and she is having a noisy sleep, where she starts calling for me. i was just hoping for a nap, i have to take them whatever time of day or night it is, my own bodyclock is totally messed up.
Cj, what a moving thing you wrote about your father, that must have been awful! You seem to be someone who is terribly wise in your posts, but perhaps have learnt that through tragedy? X
oh no, she is moving about, I had better stop her trying to get in a pickle again, That was a record sleep, about 30 mins, and now she thinks it is breakfast time, as she does every time she wakes up.

Thank you for your observation. My life has not been easy, so it's good I have learned to subscribe to the notion that whatever doesn't kill us makes us stronger, better people.

I have read your posts with interest. Having seen my father through his vascular dementia and really terrible sundowning, I believe you ought to find a way to get some respite at least one night each week. You need some time to yourself to regroup. I am fortunate that my mother (age 95) does not sundown; if she did, I'd have to just find a way to pay for overnight care somehow at least once per week. My father's sundowning was quite terrible to experience, not just because he was a strong man but because our normal response is to try to figure out what they are talking about. Please try to find a friend to take over one night a week. It's your life, too.

 

[Raggedrobin]

unfortunately Mum lives 200 miles from me, I have moved here to look after her, but at 96 she is short on friends who can help and i don't know anyone up here, so there is no one to help out. I am trying to sort out care, I agree i need respite, the problem is that mum is so resistant to it. i think until she really ceases to know me, she will freak out if someone else appears in the middle of the night. I will keep you posted with what happens, I am hoping for a meeting with a social worker this week to do a care assessment of me. Something has to give. Today I saw she was settled, it was a sunny say and i'm afraid a cavalier bit of me just said dammit, I am going out for a walk and if she falls over while I am out, too bad. Sounds so callous, but That's how I feel sometimes with cabin fever and the 24/7 stuff.

Right, she has settled again, another chance to attempt a nap....

 

[Raggedrobin]

Wahoo, thank you winter olympics. weird but true, somehow managed to keep mum awake enough watching them, she slept in her armchair for a good part of the night which meant ta da! I got 5 hours unbroken sleep. it's a record! beat that, gang, i feel so happy today.

The olympics are on a repeat loop on freeview channel 301, which is great, makes a change from her watching news 24 on a loop, all those awful images I am sure go into her head and she thinks are happening to her, Now she can be a ski champion,

 

[angecmc]

glad you got some unbroken sleep xx

Ange

 

[yoyo]

I am really moved by all of your replies. how difficult things have been you all/ there is just nothing to prepare us for this, is there.....

Mum has been up and down since I last made a comment, some nights they relax her and she sleeps and also the next day, or it doesn't so very up and down. from 3am this morning she has been in terrible pain from her arthritis which makes the dementia side of things much worse, she's just crying and shouting for her mum, so we are back on the oramorph, just hope they don't want to up the morphine patches in case this is just a flare up.
Well we have found a home now and when the social worker comes back from holiday and does the assessment we'll be moving mum, it really is a case of nursing now, mum is unable to stand or even sit up, I've done as much as i can and my family need me now. thank you all for your support and advice, I do think the meds have worked quite well for mum it just took some time to settle in her. love and hugs to all,yoyo x

 

[Raggedrobin]

That's interesting, my mum has arthritis so I wonder if that is why she does this weird groaning thing, and actually needs pain relief. Well am seeing the doc tomoz, so will check that out.

 

[jugglingmum]

Wahoo, thank you winter olympics. weird but true, somehow managed to keep mum awake enough watching them, she slept in her armchair for a good part of the night which meant ta da! I got 5 hours unbroken sleep. it's a record! beat that, gang, i feel so happy today.

The olympics are on a repeat loop on freeview channel 301, which is great, makes a change from her watching news 24 on a loop, all those awful images I am sure go into her head and she thinks are happening to her, Now she can be a ski champion,

Winter Olympics are only on for about a fortnight - is it worth recording a long chunk now so you can loop it afterwards ? Or buy some dvds of snow sports?

 

[yoyo]

Raggedrobin
the mental health team said that the pain is redoubtably making the dementia worse, also pain does not always register in the same way... also when you've given meds and the pain subsides i've found mum keeps saying 'please help me ' over and over like a broken record and i know the pain must of subsided, mums on morphine patches - paracetamol and oramorph which is liquid morphine.. so must of had some pain relief - even though she can't tell me where the pain was. - right I'm rambling now, hope everyone is safe on the winds !! x

 

[Raggedrobin]

That's interesting. i have done as the doc suggested and put her on constant paracetemol and she does seem to have settled but I think if only i ever get a mental health care team to see her, that they need to put in place more pain relief for these situations. In a way, it does no harm i imagine. it must be awful having your mum saying that, my mum is very polite, says help me, pleeeeeease, and then repeats please several times. it is utterly pitiful.