Mum in denial

[RCW]

Hi I am a new member posting for the first time and interested in this discussion as finally got my mum’s GP to refer her to the memory clinic ( after she refused 3 times ) but referral was made just before Covid lockdown. My GP is trying to be helpful but says I will now have to wait many months to hear from the clinic and then wait longer for an appointment. I am pretty desperate as my mother is in total denial about her dementia and says she needs no help but I am exhausted looking after her. She has a flat next door to where I live with my family but only sleeps there. She gets herself over to our house as soon as it gets light ( early!) and goes round waking up every family member by going into their rooms and shouting at them. I have tried locking doors - she bangs and shouts louder - and reasoning with her - forgotten in 2 minutes. She doesn’t understand the current situation or social distancing and she wanders in the day, approaching local residents who then call me to collect her. I need eyes in the back of my head and can’t even get housework done or keep in touch with friends. I have had to give up my job as I can’t work from home with her as she comes into any room I am in and demands attention. I wish I could interest her in something but she has no hobbies and doesn’t watch tv. She had a high powered job when she was younger and is very used to getting her own way. She used to call friends from my phone ( I have to dial the numbers for her)but now makes no sense when speaking and can’t remember most of her friends anyway. No one in my family gets a moment to themselves and my husband is getting really stressed with me saying I need to do something and put her in a home.
All this plus doing all her personal care is really getting me down and now I just hide in bed most of the day hoping she won’t come upstairs too often. I don’t think we can carry on for months and months like this as i am getting depressed and the rest of my family will leave once they can but she won’t accept any outside care and the GP says I need an assessment to determine she doesn’t have capacity before I can get carers against her will. That said, I did get her to ‘agree’ to a trial period with a carer - she was so nasty to the carer and wouldn’t let her help at all so the carer said there was no point in staying and found another postition. My mother knows she can have me as a carer instead which I can’t bear but in this situation I have no choice. Help!

 

[Pete1]

Hi @RCW, firstly welcome to the forum. I'm sorry to hear about the families situation, and the strain it is placing on you all. It is certainly not uncommon that a loved one with dementia will be in total denial and will therefore not accept any outside help, and indeed firmly believe the family provide little or no help. I was wondering how long has this situation been going on - it sounds like a while? It sounds as though you are now at breaking point and suffering from depression having the deliver personal care and support for Mum pretty much 24/7. So some form of intervention is needed.

I am assuming that you do not have Power of Attorney for Mum - if you haven't I would suggest this is something that you progress as soon as possible - number one priority. The diagnosis is helpful in opening doors for support (and potentially medication to help - depending on the prognosis) but that does not mean you can't get support without it. You probably can't expect your Mum's behaviour to change unless the disease progresses further - I found that things did move on, but to something 'new' that had its own issues.

Have you contacted Social Services for support (as a carer) - it sounds as though at the very least they could look at respite care, which would give you some much needed breathing space. However, if your Mum won't agree to this, without a capacity assessment that may be problematic. Also of course many of the homes are in lockdown and may not accept new residents. So as the GP says getting a capacity assessment is key.

In the meantime do you have any other family that could perhaps help? Either with the personal care or going to provide other care (meals, company etc).

I imagine the lockdown has magnified the issues and brought things to a head. I do feel for you, and you need to think of yourself in this too. I wish you all the best - I'm sure others will be able to provide some advice too. All the best.

 

[karaokePete]

Hello and welcome @RCW.

That is a tough situation and I wonder if the GP could offer assistance in relation to the behaviours.

Do ask the GP for a referral for you as, as stated, you are entitled to an assessment for yourself.

 

[Starting on a journey]

So sorry to hear of your problems and it’s difficult “been there got the tee shirt”.
My thoughts are make a nuisance with the doctor, make him understand that you are ill, not just her.
Stop caring, lock all your doors, someone phone social services and tell them there is a vulnerable person needs help!
Just a thought, who owns her flat?
My own mother calmed down with a medication called memantine from the memory clinic. I was at my wits end... but can cope (mostly) now. My husband died two years ago, he would not have wanted mum in our home as she is. We tailor our life to mum, luckily my son and I are generally quiet placid people. Anyway i digress.
If it’s too much, pandemic or not, shout and scream to gp, social services and memory clinic or else they will just add you to the bottom of the list

 

[lemonbalm]

Hello @RCW. That sounds horribly stressful. My mum never did get out of the denial stage. Other members are suggesting ways in which to get help. In the meantime, you mentioned that she had a high powered job. Is there anything you can give her to do, perhaps in connection with what she did for a living, which might keep her occupied? Something you could lay out ready for her to do in the mornings, either in her own flat or in a downstairs room in your house? A bit like her "going to work" ?

 

[RCW]

Thanks to all for your replies, which are really helpful - it's made me feel a bit better. Occupying Mum as @lemonbalm suggest is a good idea, and I've tried to do that but her concentration span is so short now that by the time i get back to her she's gone off wandering again... Regarding the POA, I have that for her financial affairs, I have been managing her money and admin for about 2 years now. That bit wasn't hard as she was happy to hand that over. She did make a PoA for health and social care (or whatever it's called)ages ago but it's not 'active' - if that's the right expression - and I've been told I can only use it for getting care if I have the assessment of her lack of capacity - which is where the memory clinic comes in I think! Actually the GP is not unhelpful but when he spoke to someone at the clinic they said they are closed until further notice! I'm sure that's true due to the pandemic but I've heard waits of up to a year for an appointment are not uncommon which is just ridiculous in this situation.

 

[Rosettastone57]

Thanks to all for your replies, which are really helpful - it's made me feel a bit better. Occupying Mum as @lemonbalm suggest is a good idea, and I've tried to do that but her concentration span is so short now that by the time i get back to her she's gone off wandering again... Regarding the POA, I have that for her financial affairs, I have been managing her money and admin for about 2 years now. That bit wasn't hard as she was happy to hand that over. She did make a PoA for health and social care (or whatever it's called)ages ago but it's not 'active' - if that's the right expression - and I've been told I can only use it for getting care if I have the assessment of her lack of capacity - which is where the memory clinic comes in I think! Actually the GP is not unhelpful but when he spoke to someone at the clinic they said they are closed until further notice! I'm sure that's true due to the pandemic but I've heard waits of up to a year for an appointment are not uncommon which is just ridiculous in this situation.

@RCW you don't need a formal diagnosis to get support for you and your mum. My mother in law had mental health conditions for many years which developed into dementia. We were used to her needy and demanding ways which became even more difficult as time went on. I had POA for both finances and health and welfare. As my mother in law was self funding, I didn't involved social services for an assessment, simply arranged carers for her , whether she liked it or not. Our situation was slightly different as she lived on her own a little way from us and she wasn't very mobile. She never had a capacity test to get care and to be frank , the care company never asked about it. I think in your situation, you should ask for an assessment for yourself as a carer, via adult social services. I appreciate in these times. this may take a while. Your mum is also entitled to a needs assessment , whether she is self funding or not. Ultimately, if your mum is wandering, putting her self at risk and approaching people in the street, then the only way to manage this, is in a care home setting.

 

[Shedrech]

hi @RCW
just wondering whether blackout curtains might keep your mum in bed a bit longer ... it worked for my dad and helped him sleep better