Is it time for a care home?

[leslee]

Hi all

It's a while since I've been on here but I'm becoming increasingly worried about my Mam. She was diagnosed with Alzheimer's 3 years ago but has deteriorated a lot over the last 6 months. She also has bowel problems which have left her virtually incontinent. She goes to bed at 6 every night so I don't get to see her every day as I work but she does have carers going in 3 times a day.

What worries me is

• she has been seem wandering the streets at 9 at night. My son went out looking for her. She got in his car and he took her home but she didn't know who he was. She said she was looking to buy bread but had loads in her house
• She hoards and we had to break into her house the other week as she had fallen in a bedroom that we could hardly open the door to as there was so much stuff behind it
• We are continually being contacted at work by carers about her and having to get time off through the day. In this recession we are in danger of losing our jobs.
• She seems to be using the kitchen bin as a toilet. We've asked her if it's because she can't get upstaits to use the toilet but she just denies it
• Today we went round to cook her a Christmas dinner and her kitchen benches and floor were covered in faeces. Her carers have to clean this up every day but surely they shouldn't have to do this.
• Her bathroom and toilet floor were 10 times worse. She does not wash her hands so everything in her house is a health hazard.
• It is clear that she does not know who myself or my brother are, but I think she knows that she knows us (if that makes sense). Despite this she allows us to wander round her house
• She chokes when she eats. She also takes bits of food from her mouth and puts it back on her plate. This is completely new to me. I haven't noticed her doing it before. When asked why she did it she said it was too hot. It wasn't
  

At her last assessment we were told she wasn't a danger to herself or anyone else and so could continue as she is. She was given hints to answer the questions on her memory test but still scored only 8.

I know this sounds selfish but I feel that we just can't cope any more. We made her dinner, which she enjoyed but neither of us could eat anything as the house is so unhygenic. We also found plates of mould hidden in cupboards. Presumably these were meals that carers had made her. She usually prefers to just eat chocolate and biscuits.

I know that a care home is a last resort but she can't live like that. Her carers are great but cleaning her faeces up every day has to be hard.

 

[Timeout]

Wow, it sounds as though you have done incredibly well to keep her at home as long as you have done but to me it sounds as though it is now time for your mam to have constant supervision and care she needs.
It's not easy but you must realise that she is at risk now, from wandering, falling, through the hoarding, and the bowel problems mean she is at constant risk of bacterial infection.
Yes, from what you say it is time for full time care. My mum went in January, today she has come out for Christmas lunch, is happy, warm, clean and well cared for and the risks to her coming to harm have been as minimised as possible. We feel we are doing our best for mum this way. We are past feeling guilty. We would be feeling guilty if she was doing as she was before, lonely, wandering, eating biscuits and cakes constantly and feeling agitated and stressing all the time. All of that has stopped. Residential care has been her and our saviour x

 

[leslee]

Thanks Timeout. It's reassuring to hear positive things about care homes. Mam was in one before but it was temporary until she had and recovered from surgery. To me she seemed much happier and healthier there but she didn't like not being able to go out when she wanted to. However, she doesn't go out by herself now anyway. Nevertheless she will never agree to go into a care home. Even if she did agree one day, she will have forgotten all about it within the next few minutes. So how do we go about this? Her house is just so insanitary to the extent I was gagging this morning until the back door was opened.

 

[Meercat]

Go with your instincts - the time is right - contact social services and your Mum's GP and clearly outline all the things you've said on here
Don't be shy - list EVERYTHING even if it doesn't happen every day then the sevices have a complete picture if your Mum's needs.

If you back up your dealings with an email to both together with photos of the state of your Mum's home - hopefully things will be put into place hastily.
The careers may also be able to provide a report of your Mum's needs to back you up.

As for your Mum not wanting to go to a home - a few white lies may aid you - perhaps suggesting she go in for respite so the carers can clean up. Also the social sconces could be the 'bad cops' that actually say your Mum goes to a home.

When you're feeling the guilt monster knocking a the door, just remember how much better your Mum was the last time she went in and think how you can actually enjoy yourselves together rather than you worrying about where it is safe to sit and gagging
at what must be a very upsetting situation.

Good luck
And take care
Meercat

 

[jan1962]

Hi there,

if you are asking the question then you know yourself the time is right. from what you have described you mum sounds at risk to me from many things. the risk of falling due to her hoarding, from some nasty infections due to her hygiene problems.. as others have said contact SS and lay your cards on the table outlining what is happening, ask your mums carers to write a report of what they face every day. lay it on thick give details of her worst days also contact her GP and let them know what is happening and get them on board. the powers that be will have to listen.

hope everything works out and your mum and you find a nice care home for her.


merry christmas to you and your family.

jan1962

 

[leslee]

Thanks everyone. I think I'll write to social services outlining my worries with a rejoinder stating that if they still don't consider her to be a danger to herself and anything does happen to her, I will hold them responsible.

Another problem is that her social worker seems to change on a weekly basis!

 

[leslee]

Has anyone come across the food thing before? She picks it out of her mouth as if it's a bone.

 

[Onlyme]

I bet its only the savoury stuff she picks out. MIL lived on biscuits, chocolates and sweets with pudding very occasionally. Anything savoury went in the bin as soon as the carers left.

She may need softer food rather than normal consistancy. Are her teeth ok? If she is living in such a mess she may not have cleaned them and have decay.

 

[leslee]

Good grief, I don't know when she last saw a dentist although her carers see to her dental hygiene. I suspect that the mouldering plates of food in the cupboard are what the carers have made her. There are probably more hidden in her piles of stuff upstairs There is a distinct shortage of forks in her house now. At one time she had hundreds.

She manages toffee ok but a dental appointment is probably badly needed. If she's saying the food is too hot then she may be mistaking toothache with burning. She doesn't remove sweet stuff from her mouth.

 

[Portia]

I just wanted to say there are some good care homes.
My Aunt is in a wonderful care home, where all her needs are met. Even with family & carers we could never have provided the care they do.
Sometimes a care home is not 'the end', but more the start of a different, safer life for your loved one - and of course a less stressful period for the family.

A year ago I would never have thought I'd be writing this on Christmas Day, but things change - sometimes very suddenly.

Best wishes x

 

[grief&sympathy]

You Should be proud to have coped so long.

As A family you have to ask is your mother safe wandering the streets at night ,is she safe at home with risks of infection from her incontinence.It sounds as if she could have a constipation with overflow problem ,A district nurse from her Doctors surgery could advise on this.
I have some main criteria for assessing if someone has a quality of life And able to remain at home.
Are they eating well.
Are they sleeping well.
Are they painfree .
Are they safe to be left without wandering .
Your mother certainly deserves further investigation from her care team as she doesnt seem to meet any of the safety criteria.She can not tell you if she is in pain from her bowel problems.
Going into a good care setting is a new start, 24 hours a day care and supervision can often give the sufferer a really good quality of life for a while.
I wish you all the very best for the new year .

 

[LYN T]

Hi Leslee

Just by asking the question I should imagine you know your Mum needs full time care. If she's wandering at night and the state of her house puts her at risk you know what you have to do.This situation seems very urgent to me.Perhaps SS can find her an assessment hospital while you look for a CH for her. As others have said she could be suffering from any kind of infection.

Remember you won't stop being a carer just because your Mum is in a CH.

All the best with whatever you decide to do-but please follow your instincts.

Lyn T

 

[colinberry1]

Well it's quite clear she needs 24-hour care that is what I have to give my wife, as far as complaining the food is hot she probably means it's hard I notice my wife brings out any food that is hard and put it by the side of the plate or tray. I have noticed that she refused to do much chewing at all so I have to make sure the meat is extremely tender and roast potatoes not too crispy but well done having to bake it longer at the lower temperature.

Well it's quite clear that she can no longer undress or dress herself so the problem with hygiene will be extremely difficult, without someone there making sure that all of these problems are addressed to keep her in good health. If she has soil her clothes and can no longer cope with her situation it is also clear that the carers are not doing their job well, or cannot cope with the workload required.

 

[choccy]

Well, I think you already know the answer yourself.
If mum was living in a nice care home, when you turned up to visit on Christmas day, shed have been clean and tidy with a full tummy and most of all safe. Enough said really.
Good luck
P.s. It is a tough move to care and it can leave you feeling bereft and incredibly guilty but it does get easier eventually.

 

[Witzend]

Heavens, it sounds as if it's definitely time. Full marks for managing to keep her at home for so long, but there comes a time, etc...

As for 'not wanting to go', I doubt there are many who ever do. But your mum hasn't the capacity to make any such decision any more, so you will have to make it for her. Creative fibbing is often the way - 'the doctor says you need to go for a rest for a while' can work, esp. if 'the doctor' is still God, as he/she still is to many elderly people. It's not nice or easy, as I know from experience, but you have to do or say whatever seems best in your own circumstances to get her there.

All the best.

 

[POPPIT]

Hi leslee
I could not believe it when I read your post, my mum is identical to you and myself and sisters and brother are going to sit down in New Yer to see what can be done next. We have been told that our mum is 'safe' by both social services and mental health. She does not have a clue who any of us are, she cant find the toilet, altho she has a commode which she wont use, but knows when she wants to go and does it in the kitchen. Mum is nearly blind with cataracts too but they wont operate as her dementia is very advanced, the doctors told us that a few months ago. Very often there is poo under her nails. She needs assisting for every single thing she does, will only eat mash and gravy and wont drink unless we are there to constantly tell her to. She has 4 carers a day and a pad under her bed that goes direct to lifeline if she gets out of bed for more than an hour in the night and I get called about 3 times a week at all hours. It is not that we dont care, we do but the worry is constant and we have to decide if we can live with the guilt of her going into care. Mum has had demntia for 8 years but we have cared for 3 years since dad died and to be honest I dont think I can do another year. My heart goes out to you having to face this decision and I will keep looking at your threads to see how you get on. My thoughts are with you.

 

[barbsch]

more and better care...

"At her last assessment we were told she wasn't a danger to herself... I know that a care home is a last resort but she can't live like that."

Hello, I am new here.
I have read the other responses you have had, and I would just like to mention that more care at home may be worth looking at before you consider a Home.
You can get live-in carers through agencies or some advertise direct. You may be able to find someone to live-in permanently, although given the complexity of your mum's needs that sounds not very likely to me. Or you get 2-weeks-on/2-weeks-off rotas.
You may have to offer 2 hrs per day off so the live-in carer does not get 'cabin-fever' - ie get someone else to come in for that time. It is possible that when she feels safe with someone around all the time, some of your mum's symptoms may be less stressful.

And, even is she is self-funding, SS should do a new assessment. If mum wanders at night, she IS a risk to herself. This should include a physio and OT assessment. They can help organise everyday life and offer/suggest/provide items that make life easier (eg clothing), but also offer stimulating creative activities that increase her wellbeing.
I would assume from what you are describing 24/7 care would be the outcome, but it is also possble that she needs less. Also, some elements of telecare can be useful (mention that to SS). If 24/7, 850£ maybe the cost you are looking at for a week - and that is less than a good care home will cost I am sure.
Good luck and best wishes,
Barbara

 

[barbsch]

tackle SS assessment...

"She has 4 carers a day and a pad under her bed that goes direct to lifeline if she gets out of bed for more than an hour in the night and I get called about 3 times a week at all hrs..."

Hi, this sounds like your mum maybe funded by SS. If this si the case, speak with the GP about the situation with faeces and eyesight fist, explain that you feel she needs more care: And she may also be eligible for part-NHS funding if her behaviour puts her at risk. That may be relevant. It's called continuing care funding.
Again she may need more care. If SS are reluctant to agree to more and suggest a home instead, you can ask for Direct Payments instead and find more/better carers to be with her more of the time. But first she needs a new assessment. You may need an advocate with you to make SS aware that you are supported. Try whether your local AS have someone who can volunteer to attend the assessment. If you can't find someone to attend and/or SS are being difficult, contact CAB and write to your MP.
Best wishes,
Barbara

 

[leslee]

Thanks for all your support everyone.

Poppit, a few years ago my Mam needed surgery for a prolapsed bowel which left her in agony as she kept trying to push things back in herself and in doing so cut herself to ribbons. Our local hospital refused to do the necessary operation. Firstly because she "was unable to consent" due to her Alzheimer's. When this was overcome the surgeon told us he still wouldn't do it as it would only happen again in the future. I took her to another hospital via accident and emergency and, in time, they carried out the surgery. I felt that the 1st surgeon just thought that it was a waste of time helping my Mam because of her Alzheimer's and her age. When we told him she couldn't cope, he said she'd have to go into a "hospice" then!! It may be worth trying a different hospital.

Barbara, we have had aids provided for my mother. She has an emergency alarm fitted to her phone. She hasn't a clue what it is and keeps turnng it off so we have to go round to turn it on again. She has something beside the cooker that turns the gas off as she has turned it on without lighting it before. This is useful. It has been suggested that she wears a panic alarm round her neck. She wouldn't know what it was, would forget to put it on and eventually she'd lose it. A key safe has been suggested. Again she wouldn't use it and keys would be lost. Her doors have been left unlocked all night because she has lost the keys to secure them. Mam also suffers from paranoia and would never allow anyone else to live in her house. She'd be convinced they were stealing from her. She does attend a day centre (which has mentioned her continually soiling herself) for 5 days a week but there is talk of this closing due to cutbacks. She has little children's puzzles which she enjoys but loses bits of them. She lives in a big house that is crammed with allsorts of stuff so lost things tend to stay lost.

Grief and sympathy, Mam has no muscle tone in her rectum and that is why she cannot control her bowels. She is supposed to be on a high fibre diet to avoid further prolapses but I think she just eats chocolate and biscuits. However, it is worth mentioning possible constipation to her GP.

Colinberry, I believe that her carers have too much to do in the time they are there. They feed her, give her her meds, bath her and clean the worst of the faeces up. That's if she answers the door.

I'm compiling a list of my concerns and intend to get in touch with any agencies that I can tomorrow.

Hope everyone is having a great Christmas x

Right, we have our list. My brother is dealing with social services tomorrow and I'm speaking to her GP. Ultimately, we're hoping that she can be sent to a 24/48 hour assessment centre so that they get a full picture of her problems but my brother believes that they'll just carry out another memory test.. So, if the phone calls don't work, it'll be a letter sent to all the agencies and our MP informing them that if she is still not considered to be a danger to herself and, consequently, anything does happen to her, they will be held responsible.

However, he recent decline has been so steep that the calls might work. Apparently she's also been pulling wires out of the back of the telly as she doesn't know how to change the channel anymore. I didn't know about that!!

 

[babypie]

Hi

Just wanted to add my Dad was living the same way, it was a total nightmare with the pooh everywhere and I mean everywhere even in unimaginable places!

He was incontinent, doubly and that extended to when I took him out anywhere. It drove me to breaking point.

He would urinate in tea cups and in the kitchen sink that had washing up in.

I was told originally by the S.S that the carers would not be able to clean up continual incontinence accidents but to their credit they did.

Dad drunk beer daily and used to just sit in the armchair after and pooh himself. I was ripping my hair out.

Well, now to something incredible.......he has been in a care home 13 weeks and has not had ONE single accident!!!

I think it is a combination of not living in dirty, unhygienic conditions and no drink!

You have my sympathy and hope things get resolved soon.

bpX