From sleeping 18+ hours a day to being bright and moving better

Miloke

New member
Apr 2, 2018
5
0
Hello!

My mum has been diagnosed with Alzheimers which we first noticed around 12 years ago. Apart from mainly poor memory she was quite active and could easily walk 3 miles a day. Until, that is,she had a stroke two and a half years ago. The stroke left her with slight speech problems (though you can tell what she is saying most of the time) and problems walking (as it affected her left leg and arm). Up to a couple of months ago she could still walk approx 3-400m holding onto her wheelchair and could get up and down stairs by herself to go to the toilet.

Then 6-8 weeks ago mum had a slight cough and rapidly went downhill. She started sleeping for 18+ hours a day, hardly ate or drank anything, didn't talk much.

I should mention that she had been on trazodone at night for the past year to help her confusion/agitation and sleep but my sister, who is her full time carer, decided to withdraw the drug 3 weeks ago. Two weeks ago I had to go and look after mum for 2 weeks to give my sister a break and thought when I first saw mum she was entering the final stages.

However the day I was leaving, mum was up at 5am chatting away until 8am - normally I'd only get a few words or a sentence from her. She said she could hear my husband talking (he was asleep and not snoring!) about the lawnmowers. She was confused about where she was but not distressed. She got dressed and went down to have breakfast and even did a bit of vaccing.

My query is :-

How can someone who was heading towards being bedridden, suddenly and overnight become so much brighter, chattier and more mobile? I have read one story where this happened but there is very little on the internet that I can find so I'm interested to hear from others.

I'd also like to say what a fantastic job you carers are doing - such a devastating condition to deal with.
 

Canadian Joanne

Registered User
Apr 8, 2005
17,710
0
70
Toronto, Canada
Yes, I personally think that withdrawing the drug may have made your mother brighter and more mobile. As the disease progresses, the needs of the individual change. What worked last year may not be appropriate this year. During the 15+ years of my mother's illness, we regularly tweaked her meds.
 

Louise7

Volunteer Host
Mar 25, 2016
4,693
0
It could also be that the 6-8 weeks when your Mum had a slight cough and then started to go downhill may have been a sign of a chest infection. Any kind of infection can cause havoc in those with dementia so it could be that once the infection had cleared your Mum got better. The removal of the medication might have helped, although you say that your sister decided to withdraw this. If you haven't already done so I suggest that you discuss this with your Mum's GP as best to get their advice before stopping/starting any new medication.
 

Miloke

New member
Apr 2, 2018
5
0
Hi Joanne

Thank you for replying. I did wonder whether her coming off Trazodone had an effect but on Friday she didn't even come downstairs at all and slept 23 hours but by yesterday she was up all day (15 hours). Quite a (nice) shock for us but by bedtime she was getting agitated and very confused again. She hadn't had the 'sundowners' symptoms since being on Trazodone - it may be a case of swings and roundabouts for which symptoms she has to experience depending on the drugs taken.

It was the dramatic difference that surprised us all but we'll take the positives and see what happens.
 

Miloke

New member
Apr 2, 2018
5
0
It could also be that the 6-8 weeks when your Mum had a slight cough and then started to go downhill may have been a sign of a chest infection. Any kind of infection can cause havoc in those with dementia so it could be that once the infection had cleared your Mum got better. The removal of the medication might have helped, although you say that your sister decided to withdraw this. If you haven't already done so I suggest that you discuss this with your Mum's GP as best to get their advice before stopping/starting any new medication.

Hi Louise
The doctor came to home visit but couldn't find any infection and we are now waiting on further resuls. My sister had asked the doctor about the Trazodone and he said it was ok to stop it and see how she got on. Appears (at the moment) that by stopping it she may feel better in herself but the sundowner's reappeared for the first time in ages.

Doctor due again in a week or two so will see how she goes in the meantime and thank you for your advice.
 

karaokePete

Registered User
Jul 23, 2017
6,534
0
N Ireland
Hello @Miloke, may I welcome you to TP. When my wife was first diagnosed with MCI she was put on meds for underlying anxiety disorder. The meds left her over sedated and she functioned better on a lower dose. It may be worth discussing a lower dose than that taken before with the GP to see if you can get the best of both worlds.
Good luck, whichever way it goes.
 

Miloke

New member
Apr 2, 2018
5
0
Hello @Miloke, may I welcome you to TP. When my wife was first diagnosed with MCI she was put on meds for underlying anxiety disorder. The meds left her over sedated and she functioned better on a lower dose. It may be worth discussing a lower dose than that taken before with the GP to see if you can get the best of both worlds.
Good luck, whichever way it goes.
Thank you for your reply...mum is only on 2.5ml at night so not really a high dose. I think what has me baffled is that if it was the withdrawal of the Trazodone that is responsible for this sudden improvement I would expect a gradual increase in her getting better. I know nothing is predictable with dementia though. Everything is a balancing act but we'll certainly discuss this with the doctor.

Thank you to those who responded
 

YorkshireLass

Registered User
Feb 15, 2017
222
0
Ilkley
Hi @Miloke, welcome to talking point. I am on this roller coaster too. My mum has Alzheimer's, was diagnosed a year ago but showed signs for several years before. She shows similar periods of deep sleep day and night continuously and more recently has been unresponsive on two occasions. Unable to hold herself in a chair, not eating, drinking, speaking or opening her eyes as if in a very deep almost coma type state. Following this she is up, eating her breakfast and talking (not always in context) and very restless and distressed. No obvious explanation other than "these are symptoms of the disease". I'm learning to cope with it but it is a dreadful situation to be in for mum and her family. Just wish it was over - hope that doesn't sound heartless as I love mum dearly and have looked after her as best I can. Please share any outcomes from the medics xx
 

Miloke

New member
Apr 2, 2018
5
0
Hi @Miloke, welcome to talking point. I am on this roller coaster too. My mum has Alzheimer's, was diagnosed a year ago but showed signs for several years before. She shows similar periods of deep sleep day and night continuously and more recently has been unresponsive on two occasions. Unable to hold herself in a chair, not eating, drinking, speaking or opening her eyes as if in a very deep almost coma type state. Following this she is up, eating her breakfast and talking (not always in context) and very restless and distressed. No obvious explanation other than "these are symptoms of the disease". I'm learning to cope with it but it is a dreadful situation to be in for mum and her family. Just wish it was over - hope that doesn't sound heartless as I love mum dearly and have looked after her as best I can. Please share any outcomes from the medics xx

Hi Yorkshire Lass,

I'm sorry to hear that you are having such a tough time with your mum and appreciate you taking time to reply to me. Mum's burst of 'normality' didn't last too long as she was back to sleeping for 20 hours after a day. The changes in behaviour just seem so random at times and I'm continually trying to make 'sense' of it but I find it difficult to accept that there isn't any.

I too feel guilty as I wish she would just have a stroke or heart attack that would take her quickly. I know she hates being how she is and she frequently says she just wants to die. Most of the time I 'ignore' this but it's the moment that she looks directly at me and I see she is 'there' when she says it that I find difficult to deal with. I completely understand where you are coming from and it doesn't sound heartless. I am sure you love your mum as much as I love mine but I know (and we have had lots of conversations throughout our lives about this) she does not want to live like this.

I only look after mum to give my sister a break every now and then (due to distance) and it has made me realise what a fantastic job carers do for this country with very little 'pay' or support for their efforts.

Hug to you Yorkshire Lass!
 

YorkshireLass

Registered User
Feb 15, 2017
222
0
Ilkley
Hi Yorkshire Lass,

I'm sorry to hear that you are having such a tough time with your mum and appreciate you taking time to reply to me. Mum's burst of 'normality' didn't last too long as she was back to sleeping for 20 hours after a day. The changes in behaviour just seem so random at times and I'm continually trying to make 'sense' of it but I find it difficult to accept that there isn't any.

I too feel guilty as I wish she would just have a stroke or heart attack that would take her quickly. I know she hates being how she is and she frequently says she just wants to die. Most of the time I 'ignore' this but it's the moment that she looks directly at me and I see she is 'there' when she says it that I find difficult to deal with. I completely understand where you are coming from and it doesn't sound heartless. I am sure you love your mum as much as I love mine but I know (and we have had lots of conversations throughout our lives about this) she does not want to live like this.

I only look after mum to give my sister a break every now and then (due to distance) and it has made me realise what a fantastic job carers do for this country with very little 'pay' or support for their efforts.

Hug to you Yorkshire Lass!
Thank you, it's the sharing on here that helps so much. Just sad we have to meet in these circumstances but staying positive at least we all have each other and we realise we are doing our best and simply cannot change the journey. My new outlook is "creating moments of happiness". Fed up of people saying "you shouldn't be doing so much, she doesn't remember". Well if for some amount of time mum is calm, content and settled that's as good as it gets and I'm happy I have managed to create and share those moments. As so many researchers say "they might not remember what you said but they will remember how you made them feel". That will do for me :) Sending a hug right back to you xxx
 

angelaraphael

Registered User
May 29, 2017
19
0
My mother was sleeping most of the day too so blood tests were done and it turned out she was anaemic - after she was put on iron tablets she improved a great deal.