Mum refusing help.

[livia123]

Hi
I'm a new member and really it's taken me some time to finally do this, but here I am;-)
I've just returned from a visit to my parents in NI ( I live in London) and just don't know what to do. My mum was diagnosed with dementia in June 2019 which didn't come as a surprise to us as we had seen signs from 2017 onwards. She lives in her home with my dad - my brother lives 15 miles away.
Due to coronavirus I've only been able to visit twice in the past year ( once in July last year and last week). The difference in my parents has been pretty horrific. My father has gone from being a very active man ( turned 80 in March) to a stooped bedraggled man who has lost several stone weight ( alot of it is muscle). He's lost most of the use of his hands and needs help with putting his clothes on. My mum has no short term memory at all and will just spend the day asking the same series of questions constantly until something new gets stuck in her head and then the cycle begins again.
The main issue at the moment is that my mum refuses to have anyone come into the house to help support them. During my visit, a lady from Occupational Therapy came in to assess the house for any useful equipment that would help. This resulted in hours of my mum yelling and shouting in anger about her coming and that no one was going to take her out of her house. To be fair, my mum has few current mobility issues so it did feel like a bit of a wasted visit. But the lady did suggest to mum that she have someone come in to help with meal and ensure medicine is taken.
My mum has always been a fiercely private person and always hated even visitors coming to the house but anytime we suggested this during the past week, she went crazy - slamming doors etc.
But I just don't know what to do - my dad has just given up and spends around 16 hours in bed a day. He also needs looking after and has neither the ability or desire to care for mum's needs. My brother has to do most of the current help but is now starting back at work and won't be around so much.
Is there any advice regarding what we can do?

 

[lemonbalm]

Hello @livia123

Welcome to Talking Point. I'm sorry to read what you are going through. It sounds so very familiar and unfortunately not uncommon. It's incredibly difficult trying to help our parents when they refuse to acknowledge that they need it, particularly from a distance. They are from a generation who often see asking for or accepting help as a weakness. Some people have had success in sneaking help in by saying a local person or friend is in need of a job or training, making it look as though it is the parents who are in fact helping them out. Do you think that could work for your parents?

My mum was just the same and my poor father found life very difficult in his later years. I ended up moving them near me so that I could be on hand every day, as they would accept my help, but that is not a good solution and I wouldn't recommend it.

Has a doctor seen your father and been able to see you mother recently? It sounds as though your father really needs some medical attention and perhaps your mum's GP could prescribe something like a low dose anti-depressant to help with her mood. It can really help with anxiety.

Keep posting for advice and support and we'll try to help you along.

This link might be useful in the meantime:

How to offer help to someone with dementia who doesn’t want it

Do you know a person with dementia or memory problems who is refusing offers of help? Here are a few ways to support someone who may be in denial or lack insight about their situation.

www.alzheimers.org.uk

 

[livia123]

Thanks for the response. The local GP has written a referral letter for my dad so that we can arrange a private appt with a neurologist for him. He has said he would set up a home assessment for my dad ( the one for my mum explained that she could only assess based on my mum and not my dad - so it does feel like duplicate effort in a way). The GP suspects that dad has an issue related to the nervous system and this may account for the gradual muscle loss and his physical difficulties - although he did suggest that this may be a physical response exacerbated by dealing with mum's condition. We will pay for his private appt as the waiting lists in NI are very bad.
My dad would gladly take any help offered - in fact mum has done most things for him throughout - part of that old school culture I'm afraid. It's just my mum is very adamant against anyone coming into the house. She is very introvert and even when we suggested that someone just come in to do a daily check that medication was being taken ( as suggested by the OT lady) , she went ballistic ( unfortunately that is her go to place when any suggestions are made and lasts for hours and we end up losing it as well) Basically says she would rather be dead than have anyone come into the house. Sadly she considers neighbours strangers as well.
I just don't know if we can "enforce" this arrangement or not as I just don't think any helpful suggestions I've read about would work.

 

[lemonbalm]

My mum was the same. It was like a personal insult to her I suppose, suggesting she wasn't managing. I used to clean like a demon when she wasn't looking, throw out food, stuff anything unhygienic in the boot of my car to deal with later. It was different for me though, I could go every day once I'd moved them (Dad unfortunately died soon afterwards). Before that, I spent a lot of time on the M25 coping with various emergencies and staying in a local pub. Looking back it all seems ridiculous but it was the only way I could think to help them at the time.

Unfortunately, it often takes a bit of a crisis to bring about change. I assume, if help were arranged without prior discussion, that your mum wouldn't let them in?

 

[livia123]

Thanks Lemonbalm. I suspect that this is exactly what will end up happening - some crisis or other will need to happen for any carer to get their foot in the door.
The issue isn't so much that she wouldn't let them in, it's that she will rant and rave about it for hours beforehand and after. The strain is too much for my dad who is metaphorically crawling up into a ball, whilst my brother will try to be patient but will end up shouting back - and it goes round and round in circles.
Heartbreaking that she didn't even remember us being over for the last week and a half when I rung yesterday to say I'd got back home safely.

 

[canary]

My mum wouldnt allow any carer in over the doorstep either.
One thing I did was make sure that her GP was aware of what was going on. I do think that it is important for your parents GP to know exactly the extent of the problem, especially as both your parents are vulnerable. I would suggest that you write a letter as this means that the doctor can read it and then it will go permanently into their files so that it will always be seen.

 

[Frank24]

This is a very hard problem and is very common so i am sure someone will be along to advise who has more experience. My mum was fairly resistant to carers or cleaners and really didn't want anyone in until it was forced on her after a hospital discharge. I think she did start to accept that she couldn't really manage bit by bit and it became easier however having carers cover the 24 hour carers breaks REALLY through her and she would often throw them out of the house essentially. Like you I was at a distance. Its all very well waiting for a crisis to happen but you don't really want to take that attitude when its your mum and dad and your dad's not well. I would get in touch with Social services and say you have concerns. Your Mum won't thank you for it but Im afraid when dealing with these type of situations doing the right thing is not always the popular thing. You will be re assured that you did your best, and tried everything should a crisis develop. Sadly with Alzheimers - these become a regular occurance. Its certainly been a hard year for anyone dealing with these issues.

 

[Miss Elli]

I am this week going through the same thing myself with Mum. The second attempt at a care package began on Monday (after keys and batteries found in kettle) arranged by Social Care, but as per last yrs care package Mum is 'absolutely' refusing them entry into her home, even though under my instruction they are pretending to be a friend of mine. I'm going to the trouble of finding out the carers names before they arrive so I can phone Mum and say my friend '....' is coming today, but it just doesn't work. Mum is getting incredibly angry with both me and the carers and isn't able to understand that we are all working hard to try and keep Mum safe and happy in her own home, as the alternative is going into care.

I'm afraid there doesn't seem to be an easy answer though, it appears generally accepted that you have to wait for a crisis point, which unfortunately will then probably result in moving into a care home.... personally I don't want my Mum to go into a home as an emergency, I want Mum to really benefit from the social aspect of a home, my saying is: I would like Mum to move into a care home to live, not die.

My Mum lives alone and she's oblivious to the fact she's struggling, but obviously you have 2 parents to care for and your Dad is suffering and is elderly himself - it's incredibly difficult, you want to do the best for him but it sounds like your Mum is really not going to accept help - have you considered respite care for your Mum so your Dad can have a break from the stress, it's not a long term answer but may be worth considering.

 

[Br1ght0n]

Oh wow. I’m so sorry to hear all this. Our experience with my mum is so similar. She is in total denial about needing any help. Says she’s going to get back to work next week. We’ve managed to get a live in carer to be with her to help my dad. The carer is a total angel. She stays three weeks out of every four and is sublimely patient and forgiving. My mum is vile to her. Refuses to let her touch her. Sometimes tries to hit her, and then accuses the carer of hitting her.

We’re trying to figure out if it’s worth trying with another carer to see if my mum would take to someone different. But the more I read into it, the more it seems that what my mum hates most is the situation she’s in, and it’s just the carer who personifies it all.

My parents moved to be close to us about 18 months ago. They lived with us for six months (I’m still recovering!) and now live very close by. I spent yesterday afternoon reminding my mum of all the things she can’t do, and all the reasons she needs help. I realise it’s not the right thing to do. But she makes me so frustrated.

 

[Tiara123]

Hi. I can see so many similar things with your situation in my current one.
ive just joined this forum as a way to feel I am not alone. I am an only child and lost my dad to dementia a few years ago. Now my mom has it. I am still waiting for assessment but it won’t change anything. I have adapted the flat. Got the attendance allowance and disability badge but I can’t be there 24/7. Today I was awoken to an emergency call as sunrise as she needed a sharp drink. She had been to Tesco in her pjs. Closed at 4am. But no clue obviously what time it was. The flat is full of provisions.
I despair honestly. She won’t have help in.
Like your mom she gets angry.
especially when not eating properly. I am trying to improve her intake.
even getting the doorbell fixed causes a row as she doesn’t want help. But if it’s not fixed she won’t here me banging.
It’s a nightmare with them isn’t it.
Anyway just wanted to say keep smiling.

 

[Grannie G]

Welcome to Dementia Talking Point @Tiara123 It`s nice to see already you are relating to other members and I hope you really will feel less isolated.

Why don`t you start a Thread of your own in the forum I care for a person with dementia.

I care for a person with dementia

This forum is for people who are involved in the care of a person with dementia.

forum.alzheimers.org.uk

This way all your posts will be together as will all the supportive replies you will get.

 

[Seraph]

Hi Livia 123
I can't believe how similar these stories are. We have been dealing with my mother for the past few years with memory loss. Between my father and I (two siblings live further away) we have been massaging the truth to placate. My mother still thinks she goes to work every day. But she is probably in the middle stages and it is very difficult to pull the wool over her eyes. My father has recently (12 weeks ago) been diagnosed with terminal cancer and has gone downhill very quickly and we have 4 weeks possibly more if we are lucky. The house has become flooded with well meaning visitors - great for Dad, not so for Mum. She is very defensive thinking people are judging her when she's cooking, cleaning and looking after him so well (of course she is doing none of that). I live nearby so have been going in daily, taking him to appointments and my niece is on hand and she does medication and has been cleaning.
Since his deterioration (and my return to work) my sister stays during the week and we take over at the weekend. Great for Dad but she and my mother clash (and have always done so). My mother just doesn't relax around her so easily.
It is really stressful and the emotions are all over the place - I feel very torn. I know my mother wants me to visit more as she trusts me and my Dad is in good hands but if I don't go I will miss spending time with him. Sister has now invited her partner to stay for the weekend and my mum just feels over-run.
Very sad today - apologies for the long post.

Hi
I'm a new member and really it's taken me some time to finally do this, but here I am;-)
I've just returned from a visit to my parents in NI ( I live in London) and just don't know what to do. My mum was diagnosed with dementia in June 2019 which didn't come as a surprise to us as we had seen signs from 2017 onwards. She lives in her home with my dad - my brother lives 15 miles away.
Due to coronavirus I've only been able to visit twice in the past year ( once in July last year and last week). The difference in my parents has been pretty horrific. My father has gone from being a very active man ( turned 80 in March) to a stooped bedraggled man who has lost several stone weight ( alot of it is muscle). He's lost most of the use of his hands and needs help with putting his clothes on. My mum has no short term memory at all and will just spend the day asking the same series of questions constantly until something new gets stuck in her head and then the cycle begins again.
The main issue at the moment is that my mum refuses to have anyone come into the house to help support them. During my visit, a lady from Occupational Therapy came in to assess the house for any useful equipment that would help. This resulted in hours of my mum yelling and shouting in anger about her coming and that no one was going to take her out of her house. To be fair, my mum has few current mobility issues so it did feel like a bit of a wasted visit. But the lady did suggest to mum that she have someone come in to help with meal and ensure medicine is taken.
My mum has always been a fiercely private person and always hated even visitors coming to the house but anytime we suggested this during the past week, she went crazy - slamming doors etc.
But I just don't know what to do - my dad has just given up and spends around 16 hours in bed a day. He also needs looking after and has neither the ability or desire to care for mum's needs. My brother has to do most of the current help but is now starting back at work and won't be around so much.
Is there any advice regarding what we can do?

 

[nellbelles]

Hello @Seraph welcome to DTP although I’m sorry you needed to find the forum.

It all sounds very difficult for you all, I’m glad you are confident about your Dads care.
Maybe it’s time to involve SS with care for your Mum I know you don’t want to but at some point you will have to consider outside help.

I hope now you have posted you will continue to use the forum for support and advice.