Caring for someone who visits the toilet frequently in the night and walks

[normanm]

We have been caring for my mother-in-law who was diagnosed with dementia in April 2010. Her dementia journey has slowly progressed which we need to be thankful for - but has progressed at a greater speed in the past six months and in particular int he past three months.

We were aware about five months ago that we need to consider full time care for her and it became apparent after Christmas that she could no longer live in her own home on her own - despite having all most full time care - from 10.00am - 6.00pm seven days a week - provided by us and a part time carer.

She has now been staying with us for the past five weeks during which time she is up between 3-7 times a night going to the toilet (although not going to the toilet that many times during the day) and at the same time coming to look for us. The toilet is right beside her bedroom in our house - and she has visited us most weekends in our house over the 23 years and stayed on many occasions - and in particular over the past year.

I have tried putting geranium oil on a hanky to help her sleep, started to give her palms to help her sleep - but it doesn't seem to help. We know that she has always told us that she has never slept very well since her son (my husband was born) because he had a lot of allergies - but when she has stayed with us over the years she has slept (or so we thought) better than she said she had. Sadly it could be the effects of her dementia journey that are affecting her - I don't know.

In recent years she has suffered quietly badly with anxiety - and we have tried to hold of with unit anxiety medication - but in December 2015 her dementia nurse decided that she should have some medication and her GP (who is great) diagnosed 2.5mg of Escitilipran. On the whole this is working and will review it with him this week.

Would appreciate any advice and guidance from anyone who perhaps experienced a similar situation and any suggestions and advice. We are trying to work through it carefully and sensitively but with the lack of sleep we are starting to become exhausted with the whole situation.

Many thanks of your help and advice - really appreciate it

 

[CJinUSA]

Hello. One night before a *very* busy/stressful day at work, I had to get up 5 times with my mother. She kept thinking she had to go. She is no longer ambulatory, and we usually have to get up sometime - each night - between midnight and 5 AM in order to toilet her.

What we did in the meantime were a few things that might help you. We did lots and lots of fluids during the daytime hours, 10 til 3 PM. Two or three glasses of juice, a couple of glasses of water, and whatever tea or coffee she wanted. Then, around 3, we didn't give her much more. Small amounts with her meal to help it go down, and that was it. Our goal was to avoid a UTI and keep her toileting during the day and evening hours but not the overnights. All this was with the doctor's knowledge and blessing.

He suggested we try Myrbetreq (if I've spelled it right). I didn't want to use this, because she does not have urinary incontinence, just a feeling of a need to go. As I toilet myself at least once in the night, it's normal that she might need to do this, too. Also, a side effect of this prescription drug can be UTI, and I certainly didn't want to introduce an additional problem.

My mother's dementia is to a point where she is no longer ambulatory, as I've said. So now, again with the doctor's knowledge and blessing, we are using Tylenol PM to help her get to sleep and stay asleep. The sleep medication is the same product one finds in Benadryl regular strength. She used to take this all the time, so I don't feel too bad giving it to her again.

She lives with me, and I could help her toilet before. Now, it takes my husband and me to do this - he gets her up out of her chair and I help him shift her onto a commode. It is very labor intensive, but we prefer this to placing her in a home.

I might finally suggest that if she is having tea at night, it might be keeping her awake. Perhaps try a decaf tea or herbal tea (esp chamomile), or better yet do away with the tea. If she is having regular tea, keep in mind its likely to make her have to pee more than if she had mere water.

This is a hard period you are going through. I'm sorry. I hated getting up with my mother so many times almost every night. That part of her journey lasted for about 6 years (she has been here since 2008). We are now on a different path, and I am sleeping better, but her end is closer, of course, and this has its own poignancy.

 

[Amy in the US]

Marian, welcome to TP. I hope you will find some advice and support here (I know I have!) and remember, TP is always open.

I am sorry to hear about your mother-in-law and your situation. Obviously you are very concerned for your MIL and want her to have good care. I am sorry that this seems to be happening at the expense of your sleep.

Of course you are exhausted, and no wonder!

I am sorry to pry, but we can give better suggestions with more information, please. Do you have any help coming in to your home? Does your MIL attend day care or a similar program? Are you and your husband the only full-time, 24/7 carers? Is your MIL incontinent yet? Does she have other health issues that need managing? Are you able to physically provide care? Have you talked to Age UK or the Alzheimer's Society? Do you have support for yourselves, such as a carer's cafe or support group, in your area?

The Alzheimer's Society has a lot of good information on their website. You might start here: https://www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200343 if you haven't already had a read over there.

I wish I had an answer for you, but have only guesses. Your MIL may not have settled since the move. She may not be able to find the toilet at night due to confusion, or sleepiness, or just the dementia. She may be waking in the night feeling the "urge" to go, or waking for other reasons and then wanting to use the toilet as habit, or she may be seeking you out for reassurance.

You might try a night light in her bedroom, the toilet, and hall, and also labelling the door to the toilet (perhaps with a photo as well as a printed label). The anxiety is likely contributing to the issue as well.

I am sorry to say this, but just because she has visited and stayed at your house in the past, and having the toilet close to her bedroom, likely has no bearing on her knowing where things are, thanks to the dementia.

It could not hurt to get her checked for a UTI, just to rule that out as a problem, and also to let the GP and/or dementia nurse know what is going on.

Probably whatever else you do, you need to get some support in place for you as soon as possible.

Wishing you all the best.

 

[Amy in the US]

I forgot, my other thought was, could she be having pain that is waking her in the night? You might ask the doctor about trying paracetamol before bed, to see if this helps. Often patients with dementia have difficulty articulating pain and it can cause sleep disturbances.

 

[Aisling]

We have been caring for my mother-in-law who was diagnosed with dementia in April 2010. Her dementia journey has slowly progressed which we need to be thankful for - but has progressed at a greater speed in the past six months and in particular int he past three months.

We were aware about five months ago that we need to consider full time care for her and it became apparent after Christmas that she could no longer live in her own home on her own - despite having all most full time care - from 10.00am - 6.00pm seven days a week - provided by us and a part time carer.

She has now been staying with us for the past five weeks during which time she is up between 3-7 times a night going to the toilet (although not going to the toilet that many times during the day) and at the same time coming to look for us. The toilet is right beside her bedroom in our house - and she has visited us most weekends in our house over the 23 years and stayed on many occasions - and in particular over the past year.

I have tried putting geranium oil on a hanky to help her sleep, started to give her palms to help her sleep - but it doesn't seem to help. We know that she has always told us that she has never slept very well since her son (my husband was born) because he had a lot of allergies - but when she has stayed with us over the years she has slept (or so we thought) better than she said she had. Sadly it could be the effects of her dementia journey that are affecting her - I don't know.

In recent years she has suffered quietly badly with anxiety - and we have tried to hold of with unit anxiety medication - but in December 2015 her dementia nurse decided that she should have some medication and her GP (who is great) diagnosed 2.5mg of Escitilipran. On the whole this is working and will review it with him this week.

Would appreciate any advice and guidance from anyone who perhaps experienced a similar situation and any suggestions and advice. We are trying to work through it carefully and sensitively but with the lack of sleep we are starting to become exhausted with the whole situation.

Many thanks of your help and advice - really appreciate it


Marian Norman

Am so sorry for you but in my experience this is all part of this awful condition. Doc tries out various meds for my OH and I don't have a problem with this. Meds help for a while and then it is back for another meds review. It is very stressful for you.

Be guided by the doctor and give him/her feedback on how the medication is/ is not working.

Aisling (Ireland)

 

[fizzie]

Paracetamol - just two before bedtime might help - this little trick has helped lots of our loved ones and although the evidence is anecdotal it is certainly widespread. Try it for a couple of nights and see if it makes any difference.
Lavender oil is a good one and when my ma was a bit anxious i used to give her 'Kalms' the herbal remedy 3 times a day for 3 or 4 days and we also found the Bach flower rescue remedy for anxiety useful but paracetamol every night for 3 years really did help her (and me).

 

[fizzie]

Just for info you can get pads free from the nhs from the continence service and our continence nurses were angels - if you google continence service for your area and give them a ring it might be worthwhile - there is often a 12 week waiting list so worth doing it sooner rather than later !

 

[normanm]

Hello. One night before a *very* busy/stressful day at work, I had to get up 5 times with my mother. She kept thinking she had to go. She is no longer ambulatory, and we usually have to get up sometime - each night - between midnight and 5 AM in order to toilet her.

What we did in the meantime were a few things that might help you. We did lots and lots of fluids during the daytime hours, 10 til 3 PM. Two or three glasses of juice, a couple of glasses of water, and whatever tea or coffee she wanted. Then, around 3, we didn't give her much more. Small amounts with her meal to help it go down, and that was it. Our goal was to avoid a UTI and keep her toileting during the day and evening hours but not the overnights. All this was with the doctor's knowledge and blessing.

He suggested we try Myrbetreq (if I've spelled it right). I didn't want to use this, because she does not have urinary incontinence, just a feeling of a need to go. As I toilet myself at least once in the night, it's normal that she might need to do this, too. Also, a side effect of this prescription drug can be UTI, and I certainly didn't want to introduce an additional problem.

My mother's dementia is to a point where she is no longer ambulatory, as I've said. So now, again with the doctor's knowledge and blessing, we are using Tylenol PM to help her get to sleep and stay asleep. The sleep medication is the same product one finds in Benadryl regular strength. She used to take this all the time, so I don't feel too bad giving it to her again.

She lives with me, and I could help her toilet before. Now, it takes my husband and me to do this - he gets her up out of her chair and I help him shift her onto a commode. It is very labor intensive, but we prefer this to placing her in a home.

I might finally suggest that if she is having tea at night, it might be keeping her awake. Perhaps try a decaf tea or herbal tea (esp chamomile), or better yet do away with the tea. If she is having regular tea, keep in mind its likely to make her have to pee more than if she had mere water.

This is a hard period you are going through. I'm sorry. I hated getting up with my mother so many times almost every night. That part of her journey lasted for about 6 years (she has been here since 2008). We are now on a different path, and I am sleeping better, but her end is closer, of course, and this has its own poignancy.

Dear Cj

Thankyou so much for your very prompt and constructive response and advice. With reluctance I have started to give my MIL "Night Kalms" a herbal remedy for helping individuals sleep at night. I have only given it to her two nights so far - so early days.

I think your idea of not giving her tea at night is a good idea - I usually give her a last drink which is a cup of tea just before 6.0pm but I think I may stop giving her tea at that time and bring the timing for her last drink forward.

I am so sorry to hear that your mother is not so well and you feel her end is closer - it sounds like you and your husband too have been on a very difficult journey with your mother - but sounds like you are very caring and loving individuals Kind regards

 

[normanm]

Caring for someone who frequently visits toilet at night and walks

Hello. One night before a *very* busy/stressful day at work, I had to get up 5 times with my mother. She kept thinking she had to go. She is no longer ambulatory, and we usually have to get up sometime - each night - between midnight and 5 AM in order to toilet her.

What we did in the meantime were a few things that might help you. We did lots and lots of fluids during the daytime hours, 10 til 3 PM. Two or three glasses of juice, a couple of glasses of water, and whatever tea or coffee she wanted. Then, around 3, we didn't give her much more. Small amounts with her meal to help it go down, and that was it. Our goal was to avoid a UTI and keep her toileting during the day and evening hours but not the overnights. All this was with the doctor's knowledge and blessing.

He suggested we try Myrbetreq (if I've spelled it right). I didn't want to use this, because she does not have urinary incontinence, just a feeling of a need to go. As I toilet myself at least once in the night, it's normal that she might need to do this, too. Also, a side effect of this prescription drug can be UTI, and I certainly didn't want to introduce an additional problem.

My mother's dementia is to a point where she is no longer ambulatory, as I've said. So now, again with the doctor's knowledge and blessing, we are using Tylenol PM to help her get to sleep and stay asleep. The sleep medication is the same product one finds in Benadryl regular strength. She used to take this all the time, so I don't feel too bad giving it to her again.

She lives with me, and I could help her toilet before. Now, it takes my husband and me to do this - he gets her up out of her chair and I help him shift her onto a commode. It is very labor intensive, but we prefer this to placing her in a home.

I might finally suggest that if she is having tea at night, it might be keeping her awake. Perhaps try a decaf tea or herbal tea (esp chamomile), or better yet do away with the tea. If she is having regular tea, keep in mind its likely to make her have to pee more than if she had mere water.

This is a hard period you are going through. I'm sorry. I hated getting up with my mother so many times almost every night. That part of her journey lasted for about 6 years (she has been here since 2008). We are now on a different path, and I am sleeping better, but her end is closer, of course, and this has its own poignancy.

Dear Cj

I apologise for the delay in responding to your reply. Thankyou so much for your very prompt and constructive response and advice. Yesterday after reading your post I decided that we wouldn't give her any cups of tea after 4.00pm - but could have limited water or juice upto 6.00pm as she needs something to have with her tablets at dinner time. As you mention it is important to ensure she drinks plenty of fluid during the day to prevent any UTI's.

I have now started to give my MIL "Night Kalms" a herbal remedy for helping individuals' sleep at night. I have only given it to her three nights so far - so early days. Discussed it with her GP yesterday and we agreed that we would try this route first before considering any other medication.

I am so sorry to hear that your mother is not so well and you feel her end is closer - it sounds like you and your husband too have been on a very difficult journey with your mother - but sounds like you are very caring and loving individuals - take care
Kind regards 


 

[normanm]

Caring for someone who frequently visits the toilet in the night and walks

I forgot, my other thought was, could she be having pain that is waking her in the night? You might ask the doctor about trying paracetamol before bed, to see if this helps. Often patients with dementia have difficulty articulating pain and it can cause sleep disturbances.

Dear Amy

I apologise for the delay in replying to your response. Many thanks for your very constructive and informative response. I do not see you as prying - you are asking me very good questions about information that I have ommitted.

My husband and I are our primary carers - our children are very very supportive and love their nan to bits - and help whenever they can - but I don't want to put upon them too much. We also have some respite help from mu husband's sister from time to time.

My MIL is not incontinent although we did have some incontinence issues over the Christmas period - but I think that is probably due to so much going on and we spent part of Christmas with our daughter in Manchester (which my MIL loves going to) and then back her in our house. Although she isn't incontinent she does now not necessarily know if she has been to the toilet. She knows she needs to go - but unable to tell if she has been or not. Rightly or wrongly I keep a close eye on this - so I can ensure she goes regularly but also because for the past few months she has had difficulty with understanding the importance of personal hygiene.

My MIL has suffered with anxiety for a few years now - and we had held off her being prescribed anti anxiety medication - until we went to see the Dementia Nurse last December. She is now on 5mg of Escitilipran - which is being reviewed on a monthly basis. The medication has certainly helped her during the day - but I do wonder now if it has transferred to the night!! I have a telephone consultation with her GP this morning and will discuss it with him. Over the past five weeks I have submitted a couple of different urine samples for testing for UTI's - and they have both come back clear - including the one I submitted last Friday.

I like the idea of a nightlight in her bedroom - the toilet is right next door to her bedroom whereby we leave the light on - which might be a bit bright - but then I want to be sure she knows where the actual toilet is. My husband has put up a sign for the toilet and where her bedroom is coming out of the toilet - but it doesn't seem to have worked.

I take your point that just because she has stayed with us regularly over the years doesn't mean that she will always know her way round.

I did start to give her Night Kalms this week as it early days but hopefully it will help. I did discuss it with her GP yesterday and we agreed to try the Kalms first before deciding any other possible course of action.

In answer to you question of pain - I don't think she is in pain - however bless her she will never tell us if she is uncomfortable or in pain - she never wants to be any trouble to anyone. Therefore most times we have to second guess if something is wrong.

Thankyou so much Amy for your help - take care - kind regards

 

[normanm]

Caring for someone who frequently visits the toilet at night and walks

Am so sorry for you but in my experience this is all part of this awful condition. Doc tries out various meds for my OH and I don't have a problem with this. Meds help for a while and then it is back for another meds review. It is very stressful for you.

Be guided by the doctor and give him/her feedback on how the medication is/ is not working.

Aisling (Ireland)

Dear Aisling

Thank you very much for your prompt response - sorry for taking so long to reply. I agree it is about trying different things that will help my MIL. I am pleased to say that she has the most amazing GP who I have make a telephone consultation with (so I don't have to take her to GP's as she gets so anxious) and he takes the time and patience to talk things through and helps guide the best way of dealing with things. Take care Kind regards

 

[normanm]

Caring someone who frequently visits the toilet at night and walks

Just for info you can get pads free from the nhs from the continence service and our continence nurses were angels - if you google continence service for your area and give them a ring it might be worthwhile - there is often a 12 week waiting list so worth doing it sooner rather than later !

Dear Fizzie

Many thanks for the tip - I am keen not to use them at this stage but conscious that we may have to use them at some stage - and worth being prepared if there is a waiting time for them. Many thanks - take care Kind regards

 

[normanm]

Paracetamol - just two before bedtime might help - this little trick has helped lots of our loved ones and although the evidence is anecdotal it is certainly widespread. Try it for a couple of nights and see if it makes any difference.
Lavender oil is a good one and when my ma was a bit anxious i used to give her 'Kalms' the herbal remedy 3 times a day for 3 or 4 days and we also found the Bach flower rescue remedy for anxiety useful but paracetamol every night for 3 years really did help her (and me).

Dear Fizzie

Sorry I should have replied in order of your responses!! I will try Lavender Oil as well - I have tried Geranium Oil but not sure it helped - take care.

 

[normanm]

Brilliant support from individuals on Alzheimers Forum

I posted a post earlier this week and I have had amazingly constructive response. Wonderful to see so many caring and supportive people prepared to help everyone else. This is an amazing forum - thank you so much for setting it up - and to everyone who makes a great contribution towards making it a success

Big Big thank you to you all

 

[Amy in the US]

Dear Marian,

Oh my, please don't feel you must apologise for tardy responses to posts here. Everyone here knows how full and unpredictable schedules can be. Please, no worries on our account!

Thank you for your kind and personal response. Even if we do not have answers, there is always good support available here. I feel that the combination of TP, and my local support groups (carers cafe), has been a lifesaver. Certainly for my mental health!

The medication issue does tend to be a wait-and-see, trial-and-error situation, which can be so frustrating. It sounds as if her GP is someone who will work with you, which is a fantastic asset to have. I also had the anxiety concerning going to the doctor, so it's brilliant the GP will do phone consultations with you.

The anxiety issue is so familiar to so many of us here, and it's so distressing to watch. I do hope your MIL will get relief with the escitalopram (Lexapro). My mother (73, Alzheimer's and severe short term memory loss, now in a care home) suffered greatly from generalized anxiety and it was a huge relief when they finally sorted her medications and were able to find the right combination to help with the anxiety and allow her to sleep. I certainly hope that your MIL will be able to sleep so that the rest of you are able to, as well.

I don't know that there is any right or wrong to the toileting issues. I do know that some people have success with a schedule of toileting times (I will see if I can find the link to the fact sheet for you) and you are correct that hygiene is important, especially for women, to help prevent the dreaded UTIs. None of us here will judge you and there are plenty of other carers who have had to work through, what you are experiencing. I think it's just never easy. I am (relieved is probably not the best word in this context) reassured to hear your MIL is not yet incontinent, so that is one less worry for the moment.

Let me go see about that fact sheet. One moment.

Here we are: https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=136

I realise not all of that will be relevant for you right now, but there is some helpful information there.

If you are so inclined, I hope you will return and let us know how you get on, please, but no pressure.

Best wishes,

Amy