I am so new to all this and don't quite know how to deal with what I faced with

[Dandy]

I had a call from DN four weeks ago to inform me my elderly mother had stomach cancer and needed help support, I live three hundred miles away from my mother who lives alone, I came quickly believing it was for a couple of months end of life support. I have been here three weeks now and she has no symptoms of stomach cancer but what has become quite evident she is suffering with dementia.
She has been verbally abusing me and accusing me of all sorts of things, constantly asking the time and day. She will ask me where I put something I hadn't touched and when I spend ages looking for it and give it to her she asks me 'why' are you giving me this, she then completely denies she was ever asking for it. She has problems walking and it quite clear she unable to look after herself, she asks me to go buy her sausage and corn beef and then asks why I buying her this rubbish, I go back and buy her steak as requested and then asks why I would buy her steak when it should be obvious she unable to eat it Nothing right!.....I have been here just over three weeks and asked for support but so far nothing. This morning she accused me of only being here for financial gain, I find that so offensive as I have asked her for nothing and used my own money. I am unable to have any kind of ration conversation with her and she now asking me to leave!!! I am at a loss as what to do, but to find this forum and able to write my thoughts down is the only support I can find as she has not been diagnosed with dementia but quite clear to me in the last three week she has a serious problem.

 

[susy]

Oh dear, what do YOU want to do? Can you stay with your mum or do you need to get back for work?
You will get lots of advice and care here.
Before you can access help generally she will need some sort of diagnosis. The GP is your first port of call here. Hopefully with a swift follow up of social services referral.
With caring for dementia, it is often living in the here and now "tale" that is often somewhat devoid of reality and if it is distressing then distraction is the way forward.
It sounds like the district nurse will be a good port of call to also gain information from and bounce ideas off. Hopefully she/he will be able to help too.
Wishing you all the best xx

 

[Dandy]

Thank you

Oh dear, what do YOU want to do? Can you stay with your mum or do you need to get back for work?
You will get lots of advice and care here.
Before you can access help generally she will need some sort of diagnosis. The GP is your first port of call here. Hopefully with a swift follow up of social services referral.
With caring for dementia, it is often living in the here and now "tale" that is often somewhat devoid of reality and if it is distressing then distraction is the way forward.
It sounds like the district nurse will be a good port of call to also gain information from and bounce ideas off. Hopefully she/he will be able to help too.
Wishing you all the best xx

I would love to stay and care for her as self employed so not a problem with work, however she has spent the last three hours talking and shouting to herself asking me to leave saying she is quite able to look after herself! (clearly not) but yes! I will go and see her Dr tomorrow, she is very clever when the DN comes for a ten minute visit once a week, able to sit in the chair and appear quite rational and as soon as they leave (the do gooders) as she calls them she quickly changes back to being abusive towards me!....

It is very difficult to help someone who really believes they have no problem and doesn't want help.

 

[Bessieb]

Gosh what a difficult situation and you completely have my sympathy as I too had parents living at quite a distance from me with dementia and understand the huge impact of it.

You need to engage your Mothers GP and Social Services as quickly as you can. It will take a bit of tenacity and assertiveness to get them to act quickly but they can act quickly if you explain the urgency of the situation and explain that family support is a long way away and she will need the care of Social Services. They have a duty to protect vulnerable adults and do have to step in once they become aware that your Mother has dementia and requires support. Her GP can arrange the assessment via Social Service or you can ring Social Services directly and refer her as her next of kin.

This situation will take a huge toll on you if you don't get support in quickly. I've been through this and you will feel a weight off your mind once you know someone else is dealing with this apart from you and she is on the radar of the relevant agencies and health professionals.

Good luck with it all

 

[Beate]

I am sorry your mother behaves the way she does but please understand that she cannot help it. I agree with the advice of getting Social Services involved (and someone should check her for infections) but in the meantime please read the link about compassionate communication: http://forum.alzheimers.org.uk/show...ionate-Communication-with-the-Memory-Impaired

The main goal is to never take anything personally, be patient and kind and distract. If she asks you to look for or get her something you can acknowledge this and say you will do it as soon as you have finished whatever you are doing at present. Then distract her with a cup of tea or a biscuit and she might forget all about it. You can react to accusations with "I am sorry you feel that way" or tell her you won't do it again, then distract again.

 

[Tin]

Its hard to care for someone with Dementia and you have the cancer on top. Do you have all medication sorted/balanced. All the requests of wanting and then not, can drive you round the bend, maybe its time to start saying no, if she asks you to leave her, are you brave enough to leave her alone, go for a walk or coffee with a neighbour. You will probably return to all the questions and wants, but at least you will have had a break from it for a while.

After the first nine months of caring for my mum and NEVER able to please her, I decided to take back control, like yours' my mum would ask continually and then deny. We go to the supermarket together and she would put all kinds of stuff in the trolley I would lift it out when she wasn't looking, because I knew she would have forgotten it by the time we got home or she had changed her mind about eating it. Sad to say or maybe not, I have become very devious and telling lies has become second nature, for my own sanity. This time last year the question was which one of us would end up in a hospital bed first.

 

[AndreaP]

Regrettably we are all part of a club to which we never would have joined willingly but what are the options? I have done what needed to be done deviously and guiltily and now mum is in a home she hates which gives me more grief. I could never ever ever had her live with me. I would have sooner died than put myself through the hell of that and I'm being quite serious.

With your mother at this stage of the disease and your ability to cope being sorely tested I would do whatever needs to be done to put her into care. We don't all have the patience to deal with this horrible disease. It's bad enough for them but I think it is just as bad for those doing the caring. Unless you have the desire to do this and I see no shame in admitting that you don't, then let us limit the suffering to some extent by admitting we can't do the caring without becoming clinically depressed or physically ill.

I'm very pragmatic but I'm also compassionate. I want mum to be as happy as she can be in care and I hate to see her miserable and cast down. She is unhappier in care than she was at home and I am seeing her doctor tomorrow to determine if there is anything I can do about that. But going home is not an option for her and she can't understand that. So now I am hated and abused for "dumping" her there.

I suspect that there is no respite for either of us until the disease or something else claims her. At present I need to accept that, be her advocate but protect my own life and marriage from the damage that this situation can cause.

I would suggest you not allow guilt to influence your decision re her future care. Good luck

 

[Mrsbusy]

Just a thought but if cancer is involved she should be able receive more help, ie Macmillan or Marie curie nurses. Just an idea.

I presume this DN who says she has stomach cancer did she not give you any details of what stage it is at or the severity of it. The reason I ask is the cancer may have spread to the brain or it maybe dementia, which I admit it does sound like. Maybe worth asking the GP though if it's a possibility.

Hope things improve for you.

 

[AliH1970]

I would love to stay and care for her as self employed so not a problem with work, however she has spent the last three hours talking and shouting to herself asking me to leave saying she is quite able to look after herself! (clearly not) but yes! I will go and see her Dr tomorrow, she is very clever when the DN comes for a ten minute visit once a week, able to sit in the chair and appear quite rational and as soon as they leave (the do gooders) as she calls them she quickly changes back to being abusive towards me!....

It is very difficult to help someone who really believes they have no problem and doesn't want help.

I am so sorry to hear this, this sounds like my story, but I am 12 months down the "dementia road" now. My dad is also able to make himself sound very plausible at will and also manages to walk fluidly whenever anyone medical assesses him. I'm going to write down absolutely everything that I can think of that might help, sorry if others have already advised in a similar manner:

My advice would be to call everyone you can. Social services, the GP, the community psychiatric nurse, Alzheimers Society, Age concern, Macmillan, Admiral nurses. Get first and last names of everyone and make a clear list of who you spoke to and when and what they said (sorry if this seems like teaching your grandmother to suck eggs, but at the start, my mum, who is my dad's main carer and 79 herself, was making contact with everyone and didn't know who she'd spoken to, so when she couldn't cope and my brother and I had to take the reins, it was impossible to know who anyone was - not what you need when you're upset!).
Most local councils have an urgent social services care team, so if you're at breaking point, phone them.
Regarding respite, your mum can't be forced to go, she has to be willing. The only other option is to get her sectioned under the Mental Health Act, not easily done and heartbreaking.
I very quickly realised that although I cared, it didn't make me the best carer in terms of keeping him safe, so I leave that to the professionals, I've given myself permission to step back when possible.
Also, you should ask the social services for a carers assessment to see if you qualify for any assistance. Oh and you can get attendance allowance for her, which can be used to pay for anything you like and you won't need a diagnosis or means test to qualify - my mum uses it to help fund the sitters from AS. The information is on the government website gov.org
It's ok to ask for help, cry at people, anything really within reason, they're used to it and usually very soothing! I do hope things settle down for you. Take care of yourself! x

 

[Sue J]

Hi Dandy

Welcome to TP.

So sorry to read your situation. I agree with others who have suggested to get help via GP, SS, Macmillan, wherever you can but please don't tell any of them this:

I would love to stay and care for her as self employed so not a problem with work

No one understands this, Drs, SS, unless they have personal experience of living with it. Get the help in, which will be a great feat in itself and then see how you can work around it to contribute. With the exception of spouses it is my experience that family are not the best people to be primary carers of those with dementia, not least becaue it usually falls to one person. The condition is enough for the caree and family member to come to terms with without the primary role of care giver who ends up feeling abused through no fault of caree. Of course reality means this is rarely the case.

You will get lots of support here so keep posting.

Best wishes
Sue

 

[hariyaksh]

I had a call from DN four weeks ago to inform me my elderly mother had stomach cancer and needed help support, I live three hundred miles away from my mother who lives alone, I came quickly believing it was for a couple of months end of life support. I have been here three weeks now and she has no symptoms of stomach cancer but what has become quite evident she is suffering with dementia.
She has been verbally abusing me and accusing me of all sorts of things, constantly asking the time and day. She will ask me where I put something I hadn't touched and when I spend ages looking for it and give it to her she asks me 'why' are you giving me this, she then completely denies she was ever asking for it. She has problems walking and it quite clear she unable to look after herself, she asks me to go buy her sausage and corn beef and then asks why I buying her this rubbish, I go back and buy her steak as requested and then asks why I would buy her steak when it should be obvious she unable to eat it Nothing right!.....I have been here just over three weeks and asked for support but so far nothing. This morning she accused me of only being here for financial gain, I find that so offensive as I have asked her for nothing and used my own money. I am unable to have any kind of ration conversation with her and she now asking me to leave!!! I am at a loss as what to do, but to find this forum and able to write my thoughts down is the only support I can find as she has not been diagnosed with dementia but quite clear to me in the last three week she has a serious problem.

I've been there absolutely. My grandmother whom I was very close with was almost like this except the aggressive abusive part. We used to talk for long hours and then gradually that faded away. She would call me at times and then when I would enter, she would deny having any knowledge of calling me. Sometimes when i prepare food for her, she would claim that she already had her meal whereas infact she has had nothing all day.
Initially it was extremely frustrating since as you correctly mentioned, dealing with someone who will not admit they have a problem is insanely difficult.
But then after she was diagnosed with FT dementia, over a period of time things started to smooth out. Now she knows she has memory issues so she is completely relied on me to take care of her. Of course this is a whole new level of frustration, trying to manage studies, work and at home, my granny but then when I remember the time we had spent, I somehow feel I should take care of her. Some call it love, some call it obligation. I've stopped caring what people say and now I handle things on my own.
I'd like to wish you good luck cuz I can say for sure that after diagnosis, she will start cooperating or atleast we hope she does.