Mother wandering in the night

[drnavan]

Hi, I was wondering if anyone has gone through the same.
We were told last July my Mother had the early stages of AD/ Dementia. The Consultant prescribed her tablets to slow the process down but she has refused to take them. She has good days and bad days (more good than bad TG!). However, it the past 2 days she has been bad, more so at night time. She gets very tired and could be in bed before 9.30pm. She will then come out say 11.00/11.30pm looking for her breakfast but last night she got up, dressed herself and was looking for her breakfast at 2.45am. She set off the house alarm and this was how we heard her. When she gets up in the morning she is ok just seems to be at night time.

 

[karaokePete]

Hello @drnavan, you are welcome here and I hope you find the forum to be a friendly and supportive place.

This type of behaviour is common so I'm sure members with experience of dealing with it will be along to advise.

In the meantime, hope you have time to take a good look around the site as it is a goldmine for information. When I first joined I read old threads for information but then found the AS Publications list and the page where a post code search can be done to check for support services in ones own area. If you are interested in these, clicking the following links will take you there

https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

https://www.alzheimers.org.uk/find-support-near-you

You will see that there are Factsheets that will help with things like getting care needs assessments, deciding the level of care required and sorting out useful things like Wills, Power of Attorney, etc., if any of that hasn't already been done. Various behaviours are also covered.

Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.

 

[Witzend]

Yes, with my FiL - he'd be up and down, banging and shouting and demanding to go out at 2 or 3 am. Or else coming into everybody else's rooms and peering at the sleepers to see who was sleeping in 'his' house. It could give us quite a shock to wake and find him so close, peering at you..

It was quite a long time ago now, and the GP was utterly unhelpful about this and other difficult behaviour. I would hope that wouldn't be the case now, but I suspect that there is still often no easy answer.

I have to say that this was one reason (though not the only one) why we finally decided on a care home for FiL. The disturbed nights just weren't sustainable - my dh was still working long hours in a demanding job, and we had teens coming up to important exams. And even if neither of those had been the case, it's exhausting for carers to have their sleep endlessly disturbed, but I'm afraid it's all too common.

 

[Rosettastone57]

Hi, I was wondering if anyone has gone through the same.
We were told last July my Mother had the early stages of AD/ Dementia. The Consultant prescribed her tablets to slow the process down but she has refused to take them. She has good days and bad days (more good than bad TG!). However, it the past 2 days she has been bad, more so at night time. She gets very tired and could be in bed before 9.30pm. She will then come out say 11.00/11.30pm looking for her breakfast but last night she got up, dressed herself and was looking for her breakfast at 2.45am. She set off the house alarm and this was how we heard her. When she gets up in the morning she is ok just seems to be at night time.

This is very common. My mother-in-law who lived on her own, was often up at night pressing her care link pendant after hallucinating. At one point the care link call centre called police after mother-in-law kept saying someone had broken in. I'm afraid that along with other things going on, we decided a care home would give her the supervision she needed

 

[Dosey]

Hi Drnavan
This is a common thing in Alzheimer's/dementia. My husband was diagnosed 7 years ago he is now in the severe stage. He started this behaviour about 6 months ago. Getting up during the night constantly going up and down the stairs, refusing to go back to bed. The only thing I can do to settle him is get up and sit in sitting room for about 90 minutes.. Then he goes back to bed. I am constantly exhausted. He did get medication that helped sleeping at night but this has been stopped due to other medication being increased and being on maximum doses of everything.
Speak to dementia doctor who may be able to help.
Rose

 

[hilaryd]

Same with our late mum too - she often phoned us in the middle of the night to ask where everyone was (she lived alone at that stage), and it took a lot of circular conversations to get her to go back to bed until a more sensible hour. Awareness of time seems to be one of the first things that dementia destroys, and it can be very wearing for everyone else!

 

[MaNaAk]

Same with my dad who is now in a home when he became moderate he got out twice. Firstly I would get night lights preferably those that come on when a person walks by. Secondly make sure her front and back doors are securely locked so that she can't get out by herself and you will also have to think about windows as well. Also you must think about fire and still be able to get out. If possible try and get her to exercise a certain amount during the day so that you can all get a better night's sleep. Try day centres and also I would advise carers as well. You might also want to pretend that the tablets are sweets to get her to take them.

MaNaAk

 

[MaNaAk]

I forgot to say that you must make sure that your mum is on the higher level of Attendance Allowance because she needs care through the night. Of course I made a mistake with dad and despite my describing his symptoms he ended up with the lower level and I thought that this was it. It was only when I checked up on his benefits when he went into the home that I was told he should be on the higher level. I then thought we have both been under-paid. In my opinion all Alzheimers sufferers and their carers should be on the higher level.

MaNaAk

 

[Duggies-girl]

I forgot to say that you must make sure that your mum is on the higher level of Attendance Allowance because she needs care through the night. Of course I made a mistake with dad and despite my describing his symptoms he ended up with the lower level and I thought that this was it. It was only when I checked up on his benefits when he went into the home that I was told he should be on the higher level. I then thought we have both been under-paid. In my opinion all Alzheimers sufferers and their carers should be on the higher level.

MaNaAk

Dad got turned down twice for the higher level. It was a real struggle to get him put on it and for me to finally get carers allowance.

 

[MaNaAk]

Dad got turned down twice for the higher level. It was a real struggle to get him put on it and for me to finally get carers allowance.

Dear Duggies-girl,

Looking back at my original application I can't understand why dad didn't get the higher level either because I listed a whole list of ailments. All I can say is that the powers that be will one day be in our shoes.

That I wander how you and your dad are at the moment? He sounds a lovely man and you are a wonderful daughter. I will be seeing dad tomorrow his Alzheimers is progressing and he has had a few episodes of aggression at the home but I still remember the gent that he was and he is always pleased to see me.

I also want to say to those of us whose PWD is wandering I found it useful to put notices on doors saying who's room is where.

This is a cruel illness

MaNaAk

 

[Duggies-girl]

Hi @MaNaAk dad is doing well physically, he has put on almost a stone in weight since he came out of hospital so I must be doing something right. His memory is not so good but we manage.

I think they turned him down for the higher rate because he could still take himself to the toilet and luckily he still can. We did get it in the end but only because of dad's cancer.

Yes dad is still full of humour and relatively easy to look after but at the same time he can't be left alone in his home. I hope you have a good day visiting your dad tomorrow. It is dad's 89th birthday in a couple of weeks, so we will try to make it a nice day for him.

 

[MaNaAk]

Dear Duggies-girl,

I hope you have lovely weather where you are and that you have the same weather on your dad's birthday. I had a good time with dad today and he was very pleased to see me. We had tea and biscuits together and I remembered to bring my binoculars with me so that we were both able to admire the view of the Thames estuary. I also tried to do some bird-watching and then we looked at pictures of my invisibles on Facebook so that dad could be reminded of them.

Dad was on his best behaviour and the carers said that he had been alright although one of the other residents said that both of them had been aggressive with each other. She said it was partly her fault and I did explain about dad's medication but I think that she is a bit confused as well.

Also regarding AA I remember telling the authorities that dad tends to wander but he still got the lower level despite also having diabetes, osteoporosis and a heart murmur plus other things. They don't realise that if someone has diabetes they are inclined to want to get up in the night to go to toilet but with Alzheimers they may not know where they are so we carers have to fight for our loved ones.

MaNaAk

 

[Duggies-girl]

Sounds like you had a nice day @MaNaAk Would you believe it we can see the Thames from dad's house and occasionally my husband and I take a nice walk along the Thames wall out to the marshes. We can see the wind turbines at Tilbury and if we walk East we can reach the bird sanctuary, it's a nice walk when we get the chance which is not often nowadays. I always take my binoculars as we have seen some interesting wildlife at times.

 

[MaNaAk]

Dear Duggies-girl,

From dad's home we can see Southend pier and across to Kent and down the road I can see the Tilbury docks beyond Canvey Island. I think you and I must have similar interests as I also like to go birdwatching. I just wish I had been interested in this when we were in Malaysia.

MaNaAk

 

[Duggies-girl]

Dear Duggies-girl,

From dad's home we can see Southend pier and across to Kent and down the road I can see the Tilbury docks beyond Canvey Island. I think you and I must have similar interests as I also like to go birdwatching. I just wish I had been interested in this when we were in Malaysia.

MaNaAk

Yes we can see Southend from here an Tilbury power station before they started dismantling it. I could probably give you a wave.

We have always been interested in wildlife and have only started visiting bird reserves in the last couple of years because they are nice quiet places to wander around even if you are not interested in birds. We spent a lovely day at Dungeness last year and took sandwiches and a flask.

I would think Malaysia would have some amazing wildlife especially birds. We only spent a few days in Kuala Lumpur and we were probably more interested in the food than anything else. South East Asian food is amazing.

 

[MaNaAk]

Dear Duggies-Girl,

We've seen a sparrowhawk landing on the roof of the care home from the lounge outside dad's room and I also like to get him to look at the passing boats on the Thames. It would be wonderful if Southend Air Show could start again from the point of view of people like dad.

Yes! The wildlife in Malaysia is amazing dad is from Kedah, West Malaysia and we lived in Sabah, north Borneo. We had a small jungle at the back of the house which is why we used to see monkeys and flying squirrels. My grandmother saw a hornbill in Penampang and I remember the fairy bluebirds, bulbuls, drongos, leaf butterflies, atlas moths etc.

MaNaAk

 

[MaNaAk]

Dear Duggies-Girl,

I've forgotten how to message amember but I just wanted to know how you and your dad are?

MaNaAk

 

[nitram]

I've forgotten how to message amember but I just wanted to know how you and your dad are?

There are multiple ways of starting a conversation, some personalised to the member some not.

If you can bookmark
https://forum.alzheimers.org.uk/conversations/add
when you click on it you will have the start page to initiate a conversation with any member.

 

[Duggies-girl]

Dear Duggies-Girl,

I've forgotten how to message amember but I just wanted to know how you and your dad are?

MaNaAk

Hi @MaNaAk I am still here and dad is ok. I think I have probably been a bit fed up since dad came out of hospital. It's been about 7 weeks now and he can't really be on his own now so I have moved in with him. Dad has improved tremendously physically but needs supervision all the time. He gets muddled as to where he is and is surprised to see me every time I leave the room and then come back in again.

We saw his oncologist last week and she was helpful, she is going to arrange a scan for dad very soon so that we know where we are with his cancer. I have kept him at home for a year now since his diagnosis because that's what he wants and he is very happy but I can't keep this up unless I have some kind of time frame.

I don't know how he can be so strong. He was in a terrible state this time last year. He has had three stents for his cancer, pneumonia, heart attack and a stroke and he is still smiling because he hasn't got a clue. He has put on a stone since coming out of hospital and his neighbour told me that I have done wonders with him. He can still take himself to the toilet so I am thankful for that at least.

I never thought he would still be here now after all that he had been through but he is obviously made of tough stuff.

I hope that you and your dad are well.

 

[MaNaAk]

Dear Duggies-girl,

You have done wonders for your dad and I think he's pleasantly surprised to see you. He sounds lovely and very tough. I think your amazing as well and I know you must be feeling very fed up but you are still creating memories for your dad.

You described where you both were last year it is almost a year since I was told that dad's Alzheimers had become severe and I remember becoming overcome with emotion a year on and dad is in a home. I make sure that I see him at least once a week but in the meantime I care from afar. I phoned the home today and I found that he had been up all night which is normal as dad started getting up in the night because of his diabetes except he gets up and wanders around as well with Alzheimers.

The day before I phoned the home and I was told that he was quite okay and that he had a friend there. I don't think that this friend was my brother as he hasn't visited since Christmas so I think it is resident G giving him a peck on the cheek. I took him out to lunch on Mother's Day which he enjoyed and I was surprised that he remembered the manager of the restaurant we were at but sadly he also asked after mum who passed away in 2008.

It takes a lot of strength and I am looking forward to taking him out on Tuesday but I must expect him to ask after mum again.

Stay strong

MaNaAk