Final straw

[Louj3]

Hi everyone I started a couple of previous threads about my mum who had delirium last Christmas and since has had a diagnosis of vascular dementia. I’ve got a bit of an update. It’s been really tough trying to support her as she is fiercely independent, will not accept she needs help and is rude to or hides from carers. She lives in a retirement complex and other residents have been increasingly vocal about her behaviour and not at all subtle in canvassing for her to leave. I can’t say I blame them but it’s added pressure.
Anyway I was called there today as she had caused a significant fire. The fire brigade attended and declared her flat uninhabitable. The smoke damage is extensive and mum can’t have any of her clothing or other possessions without a deep clean. She could have died. The fire officer was really clear about how bad it was and how toxic the smoke was. I have spent the afternoon washing and drying clothes for her but she doesn’t really get why.
I’ve managed to get her emergency care in a nice local care home and she is agreeing to go. Frankly there is no choice as she clearly cannot return to her flat and there is nowhere else. She thinks it’s just until after the repairs and clean up are done but I suspect this will be permanent.
It’s so sad. This is not how I wanted this to happen and it’s all such a mess. Mum is feeling confused and embarrassed but also doesn’t understand why she can’t go home and sleep in her own bed. So residential care it is. I just feel guilty and sad and not sure if I should have tried to move her sooner or done more to keep her safe. She still feels really capable in many ways although obviously isn’t at all. I think she will hate the home. But there really isn’t another option.

 

[LynneMcV]

What an awful time you have been going through @Louj3 - and how thankful you must be that there was no fatality or injury today.

I don't think I have come across a carer yet who did not feel guilty about whether or not they have done the right thing, if they should have acted sooner etc - and it is certainly no easy decision when it comes to a loved one going into a care home.

It is clear from what you have written that your mum is not safe to continue living in her retirement complex - not for herself or for others.

However hard, know that you are doing right by her. With the right care in place things can be so much better for both of you and your relationship.

i hear that it can take time to settle - but members here will also be able to tell you positive stories about how well things can work out too - and I hope you will be able to take comfort from that.

 

[Jessie5]

How awful and stressful for you. Please don’t blame yourself and feel guilty. You were doing your best to keep her at home for as long as possible, She has now shown that there are risks in this, and you have reacted to this changing circumstance. As carers that is all we can do.

My Mum went into a care home sooner than we would have liked as she started wandering and was brought home by the police. It was an awful decision to make and one I grieved intensely at the time. But the relief at her being safe and cared for was also immense. She has been in the home for over 2 years now and I don’t regret the decision anymore.

Give yourself some time to regroup and get over the shock of the fire. Then when things feel less fraught consider whether the move to a home should be permanent. It sounds like that is probably the case. But you have a good excuse to keep her in the home for a while whilst you think it through. She might even enjoy the security and company the home provides.

Big virtual hugs x

 

[Louj3]

Really appreciate everyone’s supportive comments. On reflection I can’t believe I didn’t know sooner we were at this place.
Yesterday’s fire has completed the hat trick of emergency services this year alone: police on New Years Day, ambulance on Friday night and fire brigade yesterday. All of the other occasions mum has actually been fine so I guess I underestimated the scale of her confusion. She also can do a very good job of appearing absolutely normal for short periods of time. Yesterday was really scary though. Thank goodness she got out although not before trying to put the fire out herself. I can’t believe she doesn’t have a scratch on her and doesn’t even seem to have inhaled much smoke. It’s a real wake up call. Poor mum. But it could have been so much worse.

 

[yoy]

Be ready for it possibly taking your mum time to settle in a care home, as this can often be the case. I placed my mum in hers before she started wandering (she had been making increasing threats for a while that if I didin't take her "home" she would get there herself), and she had also been a fire risk, so I didn't want to take any more risks. She has been in the care home a year now, and I still have occassional moments when I question whether she should really be there because she sometimes seems quite "normal". So I have to remind myself what it was like back then! She still thinks she is waiting to go home sometimes, but overall is settled and happy. I suppose I'm getting round to saying there are good care homes out there where residents are well looked after and they are safe and happy so don't be afraid of it, but give her plenty of time to get used to her new environment.

 

[Louj3]

I have just taken her and what bits of stuff I could salvage. She seemed ok when I left her but it’s all been a bit bewildering. The place is very nice but at £2000 a week probably can’t be the long term solution. I’m shocked at the price but there were no other alternatives- not that I am willing to consider.
Thinking about just putting her on a cruise ship for a year. It would be cheaper!
Joking apart I feel pretty awful and that I have let her down dreadfully.

 

[canary]

Please dont feelguilty

When there is a fiercely independent person with dementia who is refusing all support (carers etc) Im afraid that it often comes down to a crisis

My mums crisis ended her up in hospital with a TIA having been found on the floor. of her home. In hospital she was found to be malnourished and severely dehydrated. She had refused all support and help - including from me, so like your mum, my mum had no choice but to move into a care home.

A crisis is a shock and we all wish it had not happened, but its often the only way to get them the support and care that they need
xxx

 

[Sarasa]

@Louj3, your mum had a very lucky escape as did the other residents of the retirement complex. My mum could also seems very together, but I had to move her into care when she started going drinking with random men in the next door pub, and on one occasion brought one home. Mum thought she was fine, it was everyone around her that was causing the problems. At least you have a really good excuse as to why she is in the care home and you can keep on kicking the can down the road about her returning by excuses about how long it's taking to get the flat safe for her to return.
Now your mum is safe you can take a deep breather and decide what you want to do next. If your mum has a lot of money she could stay where she is or you could look round for a more reasonably priced home. More expensive doesn't necessarily mean better, just more fancy things, not of all of which your mum will use.

 

[Louj3]

Went to visit mum tonight and am in shock at how she was. Is it usual for someone to deteriorate massively after moving into care?
She was nothing like the person I left there only four days ago. She was wearing some random man’s clothes, was very agitated and completely disoriented. I didn’t see any distress but nor did I see any of my mums usual personality. She’s couldn’t sit and was up and down constantly and had been in and out of other people’s rooms. She thought other residents were her brother who she hasn’t seen for years and barely knew who I was. I’ve never seen her like this.
I don’t know if it’s a delayed reaction from the fire or just confusion at being in a strange place. Apparently she fell today and banged her head and she almost never falls. She wasn’t checked over after the fire so possibly smoke inhalation? They have started her on the resperidone that was prescribed a couple of months ago but she never took. Could it be side affects from that?
I’ve asked them to get the GP to check on her as the behaviour I saw tonight is not normal for mum - I didn’t even get a glimpse of the woman I dropped off at the weekend.
Any thoughts or suggestions welcome. It broke my heart seeing her like this tonight.

 

[SeaSwallow]

Hello @Louj3 What you describe could well be a delayed reaction to what happened with the fire, that would have an effect on anyone let alone someone with dementia and could cause the agitation that you have seen. However I would also agree that it would be a good idea to have your mum checked out by the GP.

 

[Jale]

Hang on in there @Louj3. It will take your Mum to settle/adjust to the home, the new routines and to the carers. I agree totally with getting your Mum checked by a GP, and perhaps also check for a possible UTI as they can really effect older people badly - when Mum got one she literally couldn't put one foot in front of the other.

You haven't let your Mum down, in fact it's the opposite you are doing everything you can to make sure that your Mum is safe and cared for and I hope in time you will be able to come to terms with that - it's not easy but hopefully your head will overrule your heart on this (hope that makes sense).
Take care and be kind to yourself x

 

[canary]

When someone first moves into a care home it shines a cruel light onto all their difficulties. When they are in their own home they can "hide" a lot of their symptoms, but when they go somewhere unfamiliar - on holiday, staying with relatives, in a care home, etc - they are literally lost, confused and bewildered. They dont know where they are, dont know the layout, or the routine and dont recognise the staff. It takes time for them to learn it all.

In your mums case, she was beginning not to be able to "hide" her symptoms any more - there were concerns from the neighbours and other residents and she was doing unsafe things, so it sounds to me as though she was already deteriorating before she moved there. The fire will also have caused a terrible shock and shock can do horrible things to people with dementia, let alone any physical problems from smoke inhalation

There is no need for guilt, you are keeping your mum safe and it sounds like this is the right place for her. She will settle, but it will take several weeks

 

[Louj3]

Just wondering when the nightmare will end. Took a call from the care home telling me they needed to terminate mum’s stay today. Apparently she has become very aggressive trying to smash windows etc. she’s clearly very cross at being told what to do when only a week ago she had complete feeedom. When I said I couldn’t take her today — I have nowhere to take her and I have already parted with £2000 a week for them to look after her, their response was that I have to go and stay with her there and provide one to one supervision of her myself. Clearly I am also not able to do that either. Finally they said they could only hang on to her if I agreed to pay £25 an hour for them to provide one to one. I had to agree as I have no other alternatives. I am due to remove her on Wednesday morning anyway to go to somewhere we hope will be more suitable but I am shocked by their callous confrontational and bullying behaviour. Having already parted with £4000 for two weeks care which they want to end early, it will cost another £1000 or more to keep her until I can collect her - which is still 5 days earlier than I have already paid for.
I have rung the local dementia crisis team who seemed also pretty shocked by this and we are going to put in a formal complaint to the parent company but I really didn’t think they can just kick a resident out with no notice. I accept that my mums behaviour must be challenging but if her distress is met with confrontation then I am not surprised. I also asked if she could be seen by the GP but she hasn’t been. The tone of the nurse who spoke to me was very harsh. I can’t speak about it without crying.
To top it all my brother who isn’t even 60 had a stroke on Saturday night. I’m not sure how much more I can take.

 

[SeaSwallow]

Oh dear @Louj3 that is truly awful. I would suggest that you contact the help desk for advice. I have attached a link below. They are open until 8.00pm tonight.

Contact us

Find out how to get in touch with Alzheimer's Society by phone, email, post or online.

www.alzheimers.org.uk

 

[Louj3]

Thank you. I am calling them now x

 

[Sarasa]

I am so sorry to hear that. I was just reading through your thread and alarm bells were ringing in my head about this home not having the ability to care for her, and I'm sorry that has proved true. I Hope the new home is more geared up to coping with difficult behaviour.

 

[Louj3]

Yes I hope so. I agree they clearly aren’t able but it is supposed to be a specialist dementia unit which is why it is so expensive. It was the way they spoke to me which was so awful. No empathy or compassion for my mum and what she has been through at all.

 

[Louj3]

Oh dear @Louj3 that is truly awful. I would suggest that you contact the help desk for advice. I have attached a link below. They are open until 8.00pm tonight.

Contact us

Find out how to get in touch with Alzheimer's Society by phone, email, post or online.

www.alzheimers.org.uk

 

[Louj3]

I have now contacted both Alzheimer’s Support and the local intensive dementia support team who were lovely and all horrified at the situation.
Both agreed that the care home is entirely at fault and that they have a duty of care to mum which they cannot abrogate or pass to me. Giving me an ultimatum in order to coerce me to pay for additional support is not acceptable and I have been advised not to pay. Both organisations said that given the circumstances, they should have anticipated mums confusion and distress and been geared up to support her. I have been advised to make a formal complaint to the CQC.
The NHS dementia support team are visiting mum tomorrow and are going to have strong words with the home. We have lost all confidence in them but in 36 hours it will be over. What a horrible situation though and I have become really quite angry about it all. I asked the nurse if they were being kind to mum and her reply was that they were being paid to be kind! I really don’t think they are though.

 

[Sarasa]

My mother was in two care homes and both went to great lengths to assure me that they could cope with mum's behaviour which could, certainly in the first home, be challenging. I'm so glad you are getting the support you need. The home your mum is in shouldn't call itself a dementia specialist home if it can't deal with what sounds like fairly standard behaviour for someone with dementia.
I hope your brother makes a full recovery. At the same time mum was being challenging in her care home my brother was seriously ill in hospital. The only way I could get through it all was not to dwell on it too much and think of more positive things instead.