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Mental health

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Original poster

MIL with suspected dementia - living with us and its hell!

25 replies

Ruthiebabe30 · 05/08/2017 22:12

MIL has lived with us (me, hubby and 2 primary school aged kids) happily for 4 years. In January she had a bad water infection and was hospitalised. She's come home a month ago, totally bedridden and needs care 24/7. She has had a memory clinic assessment but we don't know the results yet. Before we invited her to live with us, We as a family agreed that we would keep her with us as long as possible but I never expected this: she calls me and my husband vile names, calls loudly for help at all hours for no understandable reason, only is aware of when and where she is sometimes and is dillusional the rest of the time. The strain is massive at the moment and I don't know what to do anymore. I would really appreciate some advice and support, especially if you have experienced anything similar.

OP posts:

Nix32 · 05/08/2017 22:15

That's a long time to be in hospital and it sounds like a massive, rapid deterioration. What do the doctors say? I really feel for you.

thenightsky · 05/08/2017 22:20

That is a long time in hospital. I'm surprised she came home to you and not a nursing home by the sound of her current mental state.

I'm not sure what to suggest as it's years since I lived with a grandparent like this (shouting for help all the night, not sleeping, falling out of bed etc).

All I recall is that I was 16 and trying to study for exams and I couldnt.

YouRat · 05/08/2017 22:21

I'm really sorry you're all going through a really difficult time. My grandmother went through this and while it wasn't me looking after her ( my dbro and his then wife ) I spent a lot of time with her. It was awful. She used smear faeces all over the walls too. we had a nurse come in in the morning and evening for a few hours. This was paid by social services. She passed away at home. But if you're finding it impossible I would seriously think about moving her to a specialist home for dementia. Speak to the GP. They can give you more information on this.

Fairylea · 05/08/2017 22:23

I would contact your gp and also social services and ask for a carers assessment. The gp should be able to put you in touch with local dementia services and a carers assessment would give you a chance to show you need extra support.

ajandjjmum · 05/08/2017 22:26

You need help bigtime. Ask for it, because if you don't, everyone assumes that you're 'coping'.

Almahart · 05/08/2017 22:40

I've been through similair. Definitely ask for social services assessment. There may well be a local support group of families in similar situation which can be a really useful source of information and advice about local services and what is available. it is very difficult but if her needs are this great you may want to consider specialist residential care as in my experience it is not something that can be managed at home for very long

chips4teaplease · 05/08/2017 22:43

I seem to recall reading that water infection can lead to dementia-like symptoms. See if you can get her checked to see she is free of the infection.

annandale · 05/08/2017 22:46

I would see your GP asap, and say you are close to burnout.

HeddaGarbled · 05/08/2017 22:47

forum.alzheimers.org.uk

I found here very useful when I was in a similar situation to you.

Mustardnowletsnotbesilly · 05/08/2017 22:53

If you can't cope at home ask SS or the GP for help. If she has a UTI then this can seriously effect her mental state and cause a lot of confusion. If you get truly desperate and believe she is unwell the take her to A&E and refuse to have her home until you feel that the medical Drs have seen and assessed her properly for her deterioration. You can also refuse to have her home unless she has a care package in place, or at all. You have your own family to consider and if the GP and SS aren't helping then the point of entry to the system for you maybe an acute admission through A&E. I'm an A&E nurse and due to problems within the primary care system, busy as we are this might be the only way to do it if you get stuck.
Don't feel guilty about not being able to cope, you have done so well. Its time to ask for help so that your family and you MIL can be happy.

bellalou1234 · 05/08/2017 22:55

Is she clear of the water infection? Sounds more like delirium than a dementia

Original poster

Ruthiebabe30 · 05/08/2017 22:55

Thanks so much for your advice so far. Sorry should have said, we do have carers coming in to help us as we both work full time (me mainly from home which has been....interesting) thanks for the signposts to support, really useful. The hospital were terrible, they kept trying to discharge and we kept asking for a care package...they eventually relented and we got one in place... the discharge said she has delirium but I'm not sure... has anyone experienced caring for someone with this?

OP posts:

thenightsky · 05/08/2017 22:57

You need help bigtime. Ask for it, because if you don't, everyone assumes that you're 'coping'

^^ This!

thereallochnessmonster · 05/08/2017 22:59

She was in hospital for a UTI for six months???

Make an appt with her GP. Find out what her diagnosis is - did she have dementia when she went in? - and ask about care home options. Does she have savings? What happened to her house when she moved in with you?

Krapom · 05/08/2017 22:59

Urinary tract infections can cause these symptoms. It seems crazy but it's true. Blood texts can be done to check if there is an infection. I'd speak strongly to her GP, ask for a double appointment, they are normally very supportive indeed.

Popchyk · 05/08/2017 23:00

We've just had this with FIL. Lewy bodies dementia on top of COPD, other medical problems, and very limited mobility. We'd practically been living with MIL to try to cope with him. The worst thing of it all is that he just would not sleep. He would call out about 50 times in the night. Nobody in the house could get any sleep. Three able-bodied adults trying to look after him and failing. He was constantly agitated, paranoid, had hallucinations, and just would not sleep. Didn't recognise his wife or son some of the time. Other times very lucid and critical to anyone trying to help him. Could never be left alone, ever. MIL hadn't been out of the house in 6 months. If you left the bedroom to get him a cup of tea he would call you about 20 times, convinced that he'd been left on his own for days. He would lie in bed all day shouting and then shout all night. Slept for 10 minutes at a time. It was beyond hell.

He went into a nursing home two weeks ago and is settling there okay now after a sticky start where he was threatening to go home every 20 seconds. The nurses and staff there know what they are dealing with and he seems more calm and settled (probably doped up to the eyeballs but it is working).

I genuinely think MIL and DH would both have collapsed and be in hospital themselves if he hadn't transferred to the nursing home. The strain was massive.

If we could go back in time, and knowing what we all know now, we'd have him transferred to a nursing home a lot sooner.

Viviennemary · 05/08/2017 23:01

This is a really difficult situation for you. I agree with seeing your GP and contacting Age UK for advice. You can't be expected to cope with an elderly person who needs a lot of care when you have young children IMHO. Totally agree if you appear to be coping the authorities will ignore you. So unfair.

Krapom · 05/08/2017 23:02

Also, low oxygen levels can cause this. My FIL was hallucinating terrifying things. Oxygen tank fixed it immediately.

Polyanthus · 05/08/2017 23:05

I'm not medically trained but do volunteer work for a uni project researching dementia. On our first training course, the course leader mentioned a case where a patient had presented with dementia symptoms following a urinary infection but it absolutely wasn't dementia. It took several months for this patient to recover but they did eventually. So do query the "delirium" - try somewhere like the Alzheimer's society if you don't get any sound info from your doctor.

bluebannana · 05/08/2017 23:13

6 months in hospital for a UTI is an unusually long time it normally only takes a few day of antibiotics to treat and to go from independant with all mental faculties to bedridden like this is not what you would expect from a UTI either, were there other complications? To become bedbound whilst in a hospital is disgusting unless its end of life care (I'm an HCP) getting someone out of bed daily is part of basic care even if a hoist and specialist seating are required. Has she had phyiotherapy and occupational therapy input? If not then ask your GP for a referal.

You wouldn't expect a UTI to result in severe dementia either, such a sudden change sounds more like delerium. Delerium should settle, but it can take months. Definately get a careres assessment of your needs from social services if you have not had one already and ask about things like respite care/day centres/residential care.

Original poster

Ruthiebabe30 · 05/08/2017 23:15

We have been considering a care home, but are worried about her 'feeling abandoned' by us, she barely remembers me if I nip to the kitchen to make her a cuppa and then come back into the room. She just seems so frightened all the time, looking lost. In answer to the house question, she owned her own home and signed it over to my husband just under 7 years ago when she was starting to struggle to manage the bills, house upkeep etc. She also was approached by a dodgy door knocker and was considering paying for unnessisary building work. We lived a couple of doors away at the time. We then moved to be in a nicer area with better schools and she came with us, as we knew she would need more help the older she got. Sorry I'm rambling... just so tired and frustrated. I just want my lovely mil back

OP posts:

Original poster

Ruthiebabe30 · 05/08/2017 23:19

And no, as I said the hospital was aweful, no physio or anything, we just kept getting told she was refusing treatment. We asked to be there when it was time for that each day so we could be there to encourage, never happened. She was treated for a UTI eventually, but initially they didn't want to prescribe antibiotics. She was also dehydrated so I think that took time to get better.

OP posts:

Original poster

Ruthiebabe30 · 05/08/2017 23:22

My to do list is growing but really good to know we can do something! I'm going to sleep now folks as she's sleeping, so I'll check back tomorrow. Thank you so much again for all of your kind words and help xxxx

OP posts:

AcrossthePond55 · 05/08/2017 23:38

Some times you just have to do what you just have to do. And sometimes a good care home is better than being at home.

My DB was living with our mum in the early then mid stages of her dementia. Although she was still 'mobile' (with a walker) she stopped bathing and started having delusions that my DB was 'keeping women captive' in the house and was also going out and 'raping women'. This to the point of calling the police to 'turn him in' and dialing 911 all hours of the night to report 'a woman being held captive' in her house. Then she started accusing us of drugging her and planning to 'steal her money'. She told us that her cat was telling her these things. We still tried to soldier on but when she started going out at night to peer in DB's window to 'catch him out' and waking the neighbour to 'come see what's going on', it was time to move her to a care home. They asked us to not visit for 48 hours to 'settle her in' and the change in her was unbelievable! The delusions were gone and she was happy as a clam in her little room with her own furniture AND her cat. She started going to the lounge for bingo, piano 'concerts', and games. Sadly, her dementia is advanced now to the point where she no longer knows who we are when we visit and is pretty much in her own world. But we know that she is secure, in a familiar environment, and well cared for.

bluebannana · 06/08/2017 00:04

Neither dehydration nor a UTI would normally keep someone in hospital 6 months, if it had progressed to an acute kidney injury and urinary sepsis then it may have taken more than a few days of antibiotics, however 6 months is excessive unless we are talking a long period of serious illness and bed rest with a further long period of rehabilitation, even then 6 months would be very very unusual. Physios and OTs can't force you MIL to participate however there is no good reason for them not to arrange a time to see her with you present, infact in this circumstance I would be expecting them to be seeking you out to arrange for this. It sounds like the hospital has seriously failed in it's duty of care to your MIL your story makes me so angry. I think you need to be complaining to PALS if you have the energy.

For now I would be asking your GP for a referal to occupational therapy at the very least, to leave your MIL bed bound is unexusable as it increases the risk of pneumonia, pressure sores and ultimately reduces life expectancy. They need to be looking at soulutions for hoisting and seating so she can sit out of bed. For someone to become bedbound whilst in hospital smacks of neglectful care unless theres something else pretty major gone on. I would also be asking for physio to help her build her strength again, unless her cognitive problems have progressed to the point that she can't remember how to stand up and move there is plenty that can be done to help someone back on their feet again after a long period of bed rest. Unfortunately its harder at home where there is no specialist equipment, but not impossible.

If she is suffering from delerium familiar routines, talking about things that matter to her, going through family pictures etc can help to reorientate someone. Keeping reminding her where she is what day and time it is, what season, what the weather is like etc.

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