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night time wandering -Carers UK Forum

night time wandering

For issues specific to caring for someone with dementia.
looking for any tips, our mum,81 with alzheimers, gets up several times in the night and wanders around her flat- my brother lives with her and isn't getting much sleep at the moment! She's also partially sighted so along with the confusion she suffers we are particularly worried. The next morning she has no recollection of getting up. any ideas? thank you
Angela, hi - I think your post has gone into the wrong place. It should be in Newbies or All About Caring.

Don't worry, I think the moderators will move it to the right place.

As for night wanderings, alas, it's a very common problem with dementia patients, and VERY difficult to manage or control.

Sadly, it's the reason why so many end up in care homes where there is a night staff on duty!!!

My MIL with dementia wandered dreadfully at the care home, though now her dementia is so bad that she is immobile and can't get out of a chair without a hoist.

It's a dreadful problem, alas. They can't be reasoned with, or reassured.

I used to recommend locking them into their bedroom, but that can be 'illegal' if they have their 'liberty' removed, even for their own safety.
Hi Angela,
welcome to the forum.
I have moved your thread to the dementia section, (but left a link where you originally posted it, so you can find it.)
Dementia isn't my area of caring expertise, but I have read somewhere that a curtain hiding a door from view, can help. My only reservation being with suggesting that, is if she needs to legitimately leave the bedroom at night to go to the toilet.

Glad your post has been moved - much better here!

Curtain over the door is a really good idea.

Also, I strongly suggest commodes for toileting. Just beside her bed. Can she still go to the toilet on her own, or does she need help?

Could the doctor prescribe any sleeping pills I wonder? It might be 'dodgy' with her dementia, but it's surely worth asking.#

With my restless MIL (who'd always had insomnia, most of her life, which might be the reason she was so bad when she developed dementia - old habits!), the doctor prescribed low dose Diazapam to 'calm' her, and make her less agitated and restless. It helped, but didn't sort it totally. The downside is that it can relax the muscles too much and patients can fall. Delicate balance in the dosage I suspect.

Do bear in mind that until she becomes immobile, like my poor MIL (she's forgotten how to walk), your mum's behaviour is just likely to worsen as the dementia worsens. How long can your brother keep looking after her? How much help is he getting in the day time?

Have you tarted to think ahead to when and if she needs to go into a care home? Dementia is a cruel and relentless and in the end a terminal disease. Carers spend so much energy just 'coping' it can be hard to sit down, think things through, and take the grim decision that a care home is the only option.

Most of us hate the idea, but do remember that for someone with dementia, at some point they won't know where they are. They won't value being at home, as they will no longer know they are there. My MIL barely recognises me now when I visit, and soon she won't at all. It's grim, but inevitable alas.
Hello Angela, sorry to hear about your mum's nighttime wandering. As the other replies have stated this is a common problem among people with dementia. Sometimes radical approaches work, such as conforming to your mum's routine as she is unaware of day or night and the usual clues are not recognised. Is your brother is able to sleep when your mum sleeps so he gets his rest and use the night time to catch up on chores or watch films or do an activity with your mum that may tire her out?

He will not be able to sleep deeply or restfully at night anyway all the time he's aware that she's prowling around and he's anxious about what may happen.The expectation that night time is for sleeping and day for waking does not compute in dementia as we all know. Just preparing her for sleep at night must already be a worry for him as he knows what the night may entail. Planning to do something different which may work can be a doubtful but exciting prospect.

Maybe your mother sleeps a lot during the day, so changing her daytime routine if possible and practicable may also be worth looking at.

Good luck
Slightly by the by, but in the same vein - a friend of mine caring for her father with dementia, at home, tells me he routinely wakes at 6-ish, and gets up. She HAS to get up, as he has a catheter, and the day bag HAS to be attached (or he'll trail round with it dripping).

So, she gets up, gets the catheter sorted, gets him dressed, gets him downstairs, gets his breakfast, and then he goes into the living room, sits on the sofa - and promptly falls asleep till lunchtime!

it drives her nuts with frustration!

The awful, awful thing is that though they are mentally toddlers, physically they are grown people, and can be INCREDIBLY 'wilful' - they have lost the ability to think of anyone else, or even know what is happening. They 'rule the roost' and we have to fit around them . We have to give up our own lives to them.

Is your brother the only person looking after her day in day out? He won't be able to do it much longer, if so, alas. It will break him.
I bought a dementia clock for my husband when he 1st went into the nursing home. It helped him loads for quite a while. Sadly it's not so effective now as he has deteriorated. Occasionally he surprise's me on more lucid days and tells me the day and time from it.I don't know if you feel may help but I'm glad I purchased one.
thanks so much for all the replies! you're all right, it is something we are just going to have to cope with! I spoke to the doctor about a mild sleeping tablet/sedative but he wouldn't even entertain the idea! It's true, the risk of falling would be too high- in fact she fell 4 years ago and fractured her back- 2 months in hospital- and the dementia seemed to start from then really, could be a coincidence I know but she wasn't the same person after the stay in hospital which i'm sure is common.

I'll certainly discuss the tips you've suggested with my siblings. A carer, who is also a friend, comes in 3 times a week for a few hours each day and we will increase that as necessary and me and my sisters take it in turns to go round each day, but we realise that a home may well be on the cards at some point.

thanks again
When was the last Needs Assessment done by Social Services, should be done at least annually but you can request more frequent assessments if needs change. There may be some electronic devices which could help, I remember reading about them in a CUK Caring magazine a while ago. Social Services may provide a lot of help. Does the lady concerned have savings of over £23,000? (yes/no)
Angela, it's really important to 'think ahead' in terms of finances. The reason is this.

If your mum has over that £23,500 threshold of total assets (ie, the value of her house/flat if she owns it, and any savings and income) she will have to pay the ENTIRE cost of any residential care she receives moving to a care home. That will continue until she hits that £23,500 threshold, at which point the council START to help pay the care home fees, but don't take over completely until the person is down to something like £16k.

So, to be blunt, if your mum lives that long, and that happens, then the only 'estate' she will leave is that residual £16k 'leftover'.

This is what is very likely to happen to my MIL, who is currently spending the ENTIRE value of the flat she sold, plus her ENTIRE life savings....it's hideous to watch. Care homes cost £100 A DAY ....at least! Some cost more (depends on the 'luxury level' and whether in big cities, expensive areas etc) (I've 'saved money' by moving MIL to the west country, the home is 'only' £700 a week - that's, wait for it..... £36,500 pounds a year!!!!!!!!!!!!!!)

The dilemma many families face is this - do they 'go for broke' and keep looking after their parents unti lteh bitter end, whatever the personal toll that takes, in order to 'safeguard' their 'inheritance' (which would otherwise disppaear in to paying care home fees), or do they throw in the towel, right from the off, accept they will only be sharing £16k between them as their inheritance, and the rest can blow on the care home, and any 'deficit' (ie is she lives longer than the £16k) can be paid for by the council.

The one thing you DO NOT want to do is this - to START caring yourselves, have it take a dreadful toll on you all in stress and worry and 'stolen lives' (you can't get much else done when you are caring for someone with dementia!), and THEN throw in the towel and pay for residential care.

That's the worst of both worlds - you've lost precious years of your lives caring yourselves, and STILL ended up with nothing more than £16k!!

Some folk have even ended up homeless - if they are living in their parent-with-dementia home (the council will INSIST it is either sold to keep paying care fees, or, at the least, will put a charge on it if they pay the fees' temporarily' and then insist it is sold once she dies.)(There MAY be exceptions if the carer is themselves an OAP.....it's not sometjing I'm sure about, but others here know)

Sadly, we all cling to the hope that our parents will live to a ripe old age, in good fettle, and then die peacefully, surrounded by their children, with apple blossom at the window and harp music playing celestially.....

That SELDOM happens. Had my MIL died at 89, eg, keeled over with a heart attack or whatever, she would have been spared four yeas nearly so far of hell. My friend with the catheter-dad tells me that the average length of life after a diagnosis of dementia is 8 years......

So, if I were you, I'd gather a family conference and really try and hammer down what the 'least worst' option is for you all, and your mum. Sadly, there won't be a 'good' option unless she lasts a lot less than those 8 years. (Don't wish long life on her - my MIL now is doubly incontinent, immobile, non-verbal, hardly recognises me if at all, and has that dreadful, dreadful slack face with vacant eyes - whoever she once was, that vibrant, independent lady who was a wonderful MIL to me, has gone, gone gone. no one is home any more. Ghastly to see. Ghastly. Her mind has died before her body.)