Don't know how to help anymore

[claireizz]

I've posted before and you've all been so kind and helpful before. I just don't know how to go on though. To recap my nan has moderate dementia and has reached the stage whereby she sits in the chair watching tv and will only eat or drink etc if it's placed in front of her, and I have to remind her to go to the toilet and take her every time. She simply cannot do anything for herself pretty much anymore, due to a combination of age (93) and the dementia. She won't recognise that she is wet, or hungry etc. My mum used to care for her but had two small strokes earlier this year so I took over. I am really struggling. I lost my job through trying to balance caring for them both, as well as my 11 year old daughter and a husband away frequently in the military. Social services won't provide any help at all as they say she has capacity, refuses care and therefore it would be "unlawful and unethical" to force it on her. My brother lives 4 hours away and is vile in messages if I ask for any help at all. My mum could help again but begrudges my nan and speaks to her like she's stupid or forgets to do things on purpose. I had a carer and a neighbour doing visits but the water infections are getting more frequent I think because they aren't as meticulous as me. Nan had a fall last week due to a bad water infection and ended up in hospital. I therefore decided to bring her home to my house when she was discharged fir a while. She's now got a bad chest infection and pressure sores from sleeping in her recliner bed as I could not get her mobility bed here. She's happier during the day as she has more company and is part of a family unit. I thought it would be easier too and in a practical sense it is, but mentally it's affecting me. I can't sleep worrying about her downstairs. I don't know what to do for the best, to move her back to her home and try and pay for care but it would be me still doing most of it and others just popping in quickly, and therefore not doing a thorough job, or to try and persevere but I think it will have a massive impact long term on my relationship with my partner. I feel like I'm trying my best for her but my best isn't good enough. I feel so so so alone and responsible.

 

[Kjn]

Would she be self funding ? What about a care home environment ?

 

[claireizz]

She rents her little bungalow from the council so I support her financially with shopping etc as her income doesn't cover her bills. She'd hate a home. She's always been quite a loner and even getting her to accept a stay in hospital is traumatic. Social services won't consider paying as they say their assessment is that she is capable mentally of making a decision about care and that she is adamant she doesn't want it. She lies about how much I do and they accept it despite numerous other people including Nans doctor speaking in support of me. My family, although no help, would also act negatively if I went down the care route.

 

[Grannie G]

Is your Nan getting Attendance Allowance Claire? She should be entitled to it and it would help to pay towards some care.

Social Services are letting your nan down if she keeps getting water infections and has pressure sores. You are not a nurse and should not be held responsible.

Please phone the National Dementia Helpline for further advice. They will know what your nan is entitled to.

http://forum.alzheimers.org.uk/faq.php?faq=resources#faq_resources_helpline

You can contact our helpline by calling 0300 222 1122 or by email at helpline@alzheimers.org.uk.

The helpline is usually open from 9am to 5pm Monday to Friday, and from 10am - 4pm at weekends. However, the service may be closed occasionally during these times for operational reasons.

 

[claireizz]

Nan does get attendance allowance which is paid to my mum who used to care for her. I don't and can't have access to that unfortunately. My mum relies on it financially. Please don't judge me for allowing that to happen. I get the take a break respite of 3 hours a week but that's all.

 

[claireizz]

Ps if really feels that it's me not social services that are letting her down with the water infections and sores. I should add I live 27 miles from her when she is at home. 54 Mike round trips 2-3 times a day are breaking me and it's not fair on my daughter but Nan would abhor a care home and my family all tell how how poor the care is and how ill treated she'd be. I really do want to try and care for her if I can but when it boils down to it she needs at least 4 visits a day as her pad should be changed at least that many times and she'd never do it without reminding and most of the time, assistance.

 

[Kjn]

Claire the attendance allowance is not for your mum and she is not entitled to it for her financial needs.
It needs paid to you or your nan.
Your mum can apply for her own benefits.

You don't ' know ' nan won't like a care home .
SS will do everything to keep someone at home as it's cheaper , but if needs arise and nan requires help when family members won't help it may be a better option.

 

[Bod]

She rents her little bungalow from the council so I support her financially with shopping etc as her income doesn't cover her bills. She'd hate a home. She's always been quite a loner and even getting her to accept a stay in hospital is traumatic. Social services won't consider paying as they say their assessment is that she is capable mentally of making a decision about care and that she is adamant she doesn't want it. She lies about how much I do and they accept it despite numerous other people including Nans doctor speaking in support of me. My family, although no help, would also act negatively if I went down the care route.

Social services, may consider she has mental capablity, what do they say about her ability to look after herself?


Bod

 

[claireizz]

Thanks for your answers. Everyone that knows nan says she would hate a home. She's always been very solitary and hates noise, is fussy on food etc. When social services, doctors etc see her she lies about how much she does as she is petrified they will say she has to go in a home. She enjoys being in my home as at her place she cannot fathom how to use the remote so gets stuck in the same channel and constantly wants to go out for a trip which I can't do every day but at my place she can see out the window, has my cats etc. She has a wet room and special bed, rails etc at her house so from that point of view she'd be better at her home. I just feel so trapped and ground down and to be honest in physical pain as she's a much larger woman that I am to help physically. I have a new job with a lot of responsibility there too and do not seem to be pleasing anyone, my best isn't good enough for my partner, my nan or my daughter.

 

[claireizz]

Ps social services say that although they admit she needs care they cannot force it upon her as they feel she has the right to chose and she refuses it.

 

[PollyP.]

Hi Claire

I'm so sorry to hear of the dreadful situation you are in. It doesn't help when your family say "Nan would abhor a care home and my family all tell how how poor the care is and how ill treated she'd be" This is nonsense and have they got first hand information regarding this. There are some (few) bad care homes, but I bet there are many others that are just marvellous.

My Mum, (Age 100 with Alzheimers) needed 24/7 care four years ago, she had lived with us in her own bungalow next to us. but she needed to be looked after more than I could manage. She has been in her care home for 4 years now and I know she wouldn't have wanted to go "into care", but the carers are just wonderful, she is so well looked after, and they are all kind and loving to her.

You can't go on as you are, would your Nan accept going to a Day Care once or twice a week,it was company, a lovely lunch and entertainment too. My Mum used to go and really enjoyed it. It made it easier when she needed to go in permanently (same care home).

I hope you can get something sorted out. If you became ill, who would look after your Nan - something would be sorted then.

Love
Pauline

 

[claireizz]

Hello, I tried a day care centre but she hated it, she complained about the noise and the other people that went. She hates strangers going in, accepting a carer that does the 3 hours a week was a major trauma. I'd feel like I'd failed her if she went into a home and I feel very very alone in making all the decisions and am getting increasingly upset by people like my brother who seem not to give a toss, 1 or 2 visits a year for minutes at a time and he feels he's done his duty and his messages are full of "everyone has problems" comments. Is there anything I can do to help with the incontinance which obviously results in both the sores and water infections which lead to falls. I sort of feel like I could cope if that little chain was under control. Have tried a commode right by her but to no avail. She just sits all day forgetting to change it and doesn't recognise the wet, she's always shocked that isn't sodden and her clothing needs changing.

 

[tigerlady]

You are certainly not letting your nan down - your are doing far more than is really possible, especially as you have your own family to look after and a new job. Your nan is very lucky to have you. Are the SS aware that she has a chest infection and sores? If it is because she does not have her own bed, is there any other solution? A special matress perhaps? Would it be possible for carers to come to your house to help care for her? If the only reason the SS is refusing care is that she is refusing it herself, couldn't you persuade her to accept it in your home? You said she had a neighbour and a carer popping in when she was in her own home - if she accepted them, its just a small step to accepting others. You must tell her that you can no longer cope on your own. The SS should pay for them - it is not your responsibility. You should make sure that she gets the AA and not your mum - your mum could apply in her own right if she needs care after her strokes.

You can get incontinence pads and pull-ups on the NHS I think, but I am not sure. You need to phone the helplines as suggested and also ask her GP about incontinence services.

You should also get in place the POA for health and welfare and finance - if the GP and the SS say she still has capacity to make decisions, it is best to get it done now. As much as she says she does not want to go into a care home (who does!) it may be the only option further down the line. You certainly cannot go on as you are. Your own health will get worse, and what will happen then!

Please get more help and advice from the GP, the AS and Age UK

 

[Pickles53]

Just in case, a couple of things which haven't been mentioned..

You could formally write to SS stating all the concerns you have raised here. Use the words 'vulnerable adult at risk' for whom they have a 'legal duty of care'. Tell them your situation, that you have a new job and will not be able to continue offering the same level of support as you have been doing. You will hold them responsible for anything that happens. Send a copy to your nan's GP so at least he is aware. Pressure sores will not get better without skilled assistance e.g. from a regular district nurse visit. Ask for a referral to the Incontinence service if you haven't already done this.

Sadly at some point 'needs' have to override 'wants'. I don't suppose your nan wants to be wet, have water infections or have painful pressure sores either but that is the consequence of her illness and they need to be managed in the best way. There are plenty of stories on here of people who have been much better in a care home than anyone expected. At the very least, they are safe, warm, and have someone on hand 24/7.

On the finances in the meantime...

Have you applied for your nan to have the council tax disregard on her bungalow if she 's still paying it? You can call your local council about this.

A longer term thought....There are probably rules about how long your nan can stay with you before losing her right to her bungalow (because there is bound to be a long waiting list for any kind of social housing and councils don't want them left empty). It would be as well to be aware of these just to make sure sure you don't accidentally get into problems later.

And I'm afraid that, whatever your mum's financial position, she is not entitled to spend attendance allowance on anything other than your nan's needs. If it's not used every week, it should just stay in your nan's bank account as you can be sure it will be needed before long. I'm sure you know this, and I would like to assure you that I'm not judging you; it must be very difficult to have this conversation when you already have far too much on your plate and it's her responsibility not yours. However, these chickens will come home to roost eventually. If your nan goes into full time care, and is part-funded by the LA, attendance allowance will stop. So it's not a very good idea for your mum to rely on this income anyway. Maybe you could point this out to her?

 

[Georgina63]

Claireizz
Very sorry to her about your situation. It really sounds like SS are letting you down. Your Nan may well be telling them she doesn't want help and appears to have mental capacity but you know different. What if you were ill or unable to care for her...I think you need to go back to them. She cannot look after herself and is in need of help, as are you because it seems obvious on reading your posts that this will become too much for you and your wellbeing could suffer as a consequence, plus you have your own family to care for too.
For 2 years I did all I could (with SS help) to keep them in their hom, after being diagnosed with AD but it became unsustainable and they moved into a care home. Never thought I would see that day or that Dad in particular would cope. But I was wrong and they are now settled, well cared for and relative,y speaking, both well. Harsh as it sounds, your Nan has had a good, long life - would she want you to compromise your own for her care? Hope you are able to get the help you need. Gx

 

[claireizz]

Hi, I've tried the Alzheimer's care line that was recommended earlier up the thread by it's constantly on an answer machine saying all their staff are busy and will call back within 48 hours and we all know what it's like, people always call back at the most inopportune moments! I suppose what I'm desperately trying to do is give nan the best of both worlds, the feeling of our home with the practical solutions of her own home. I've battled with social services for nearly 6 months now. I've had repeated emails, calls, visits and meetings and statements from people like Nans gp and respite carer supporting me but to no avail. When they visit nan gets so worried they are going to take her away she "puts on a show" and even stuck her tongue out at me after one visit by them as if so say: ha, foiled you sticking me in a home. I worry that she will be in a very basic council run care home as I don't have the funds for top up, and that she won't be well looked after. On each hospital stay I've ended up having to do the personal care as she's been left in her own urine and faeces. On the hospital stay last week I arrived to find her literally lying in her own liquid **** with a heavy soaked pad that obviously hadn't been changed in 12 hours overnight since I had left and done it at 9 the night before. I asked for help but stood by the nurses station being ignored for over 10 minutes before helping to get her out of bed myself and crying at the indignity of her walking with me to the toilet covered in dirt with the pad hanging down her legs. My mum has worked in care homes which ironically seems to have given her less sympathy for my nan but says how all homes have staff that just don't care or are abusive in some way.

 

[Pickles53]

You've obviously had some terrible experiences and I would really hope that you have complained to the PALS service at your hospital. (Sorry to give you another thing to do.) That's an appalling situation and I'm not surprised it makes you wary of care homes. However, they are not all like that as many members of this forum can confidently say. Neither is it the case that the most expensive homes are the only good ones.

 

[Pegsdaughter]

If SS are being so useless please contact your nans local ward councillor. They can put pressure on them that we mere mortals can't. Write a clear account of all the problems in bullet list form . Details of who her councillor is along with email details will be on the council website. I would also copy this letter to her go and also to her mp.


Sent from my iPad using Talking Point

 

[BR_ANA]

If you get a CH near your home, you can visit your GM daily. (My mum's CH was on same block I live). And voice to manager any problem.

About doctors, write how she is, give a copy to doctors and SS before any appointment. And distract GM so they can read. Hostess mode is common on PWD.

About your daughter, she can be affected, and she must be your priority.

Pressure sores are avoidable. It take months(or years) to heal, if heal. It is painful. If GM got them on your home, I think she was better cared on hospital than at your home.

 

[claireizz]

I have tried everything with SS but they are adamant that their assessment is that she has capacity despite the GP and the solicitor that gave me POA saying she doesn't. They are equally adamant that means that as she does not consent to care they "cannot force it on her" they say it would be illegal to do so. They swallow all her lies about what she does for herself and as she chats away with stories (all of which are untrue like that she was a gymnast etc) they feel she is intelligent and engaging and should have a say. I know that this is my sole responsibility and that's what I'm struggling with. I feel really alone in making these huge decisions, and I really don't know what would be the best for her. My friends don't really want to know (we're of an age when they aren't really dealing with this yet due their own parents and don't tend to be involved with their grandparents) and I've been accused of being no fun anymore as I'm just constantly worrying about pleasing and helping either my partner, daughter, mum or nan. Extended family including my Nans much younger brother say: thanks so much for everything you're doing but don't and won't help (I asked them to do simple things like video calls between nan and her brother and you would have thought I'd asked them to steal me the Crown Jewels). I just wish I could get on top of the incontinence thing, I have pads delivered free but she simply sits in wet ones until I get her up to change them which simply isn't practical when I need to work full time so will be out of the house. Has anyone tried Appetito? Will they perhaps say to the person politely "Hello M, how are you, why don't you pop to the toilet while I get your lunch ready so that you're comfortable for it".