Struggling with caring alone for mum with suspected dementia

[Wildwoodflower]

Hello everybody,

I’ve been reading your posts and feeling for the first time that perhaps I’m alone in this and that what has been happening with my mum is common.

Here’s our story.

My mum will be 91 next month. She was widowed when she was in her fifties and when she was sixty, she sold her business and her home and moved to France. She has lived here for 30 years, has had a good life and been happy.

I’m her daughter, 56, divorced and have two children at university. Normally, I live in Scotland.

About seven years ago, I recognised that my mum was finding the winters in France hard going by herself and started inviting her to stay with me in Edinburgh for the coldest months.

She would arrive in November and stay until April. As the years passed I began to notice small changes in her ability to cope with life’s more pressing issues – keeping on top of her bills and so on – and would help when help was needed. I put this down to advancing age.

In the summer of 2019, I had to fly her back to the UK as in quick succession she wrote off her car and then found she couldn’t cope at all when a heatwave hit. She has lived with me ever since.

As it was clear that she could no longer live alone and in January 2020, I brought her with me to France with the aim of getting her house sold and for her to use the money to buy a sheltered flat near me in Edinburgh.

I found her house in a state. I’d had no idea how much she’d neglected maintenance and I realised that for her to sell it at all, I would have to bring it up to scratch. Fortunately, I have skills.

That was February 2020. I’d only intended to us to stay for a maximum of three months. Then the pandemic hit and it was clear that if I were to try and travel with a fragile 89-year-old it was likely to be a death sentence for her. So, we stayed put, I set about repairing the house and we went through the various lockdowns.

My mum was clearly becoming much more difficult, contrary, rude and ungrateful, but I put it down to the stress of lockdown, even though we were in a safe area and with our own woods and garden to walk in. However, by the summer it was clear that there was a lot more going on than just a grumpy old lady.

From the spring of this year, the deterioration has accelerated. She has forgotten her French. She has become increasingly forgetful and uncharacteristically spiteful and mean. I have never known her say anything like the horrendously hurtful stuff that is now her daily output. She responds to any frustration with furious anger. On a couple of occasions, she has tried to hit me.

I recently discovered that she has been phoning friends and family telling them awful stories centred on me. None of what she says is in any way true, but they follow a theme that I’m after her money, that I abuse her, that I neglect her and that I am a monster. She also tells people variously that I’m a mess/failure because I’m here looking after her. Oh the irony!

The reality is that I have given up the past two years to care for her. I have repaired her house and got it sold for 30k over the valuation (we will move in January). I cook, clean, wash, drive, shop, garden, wash her, rescue her when she gets stuck in the bath and change her bedclothes. I do her banking and pay her bills. I have sorted out the various catastrophes that had arisen from her getting her finances and other affairs in a muddle. I translate, I monitor her health and act on her medical needs. I talk to her, listen to her stories and her worries. I take her out for jaunts, take her for walks, take her to meet friends.

In the meantime, I’ve been unable to get back to the UK myself because it is unsafe to leave her alone, she can’t travel and there is nobody else to look after her. I have a brother. He has always been a pig and unsurprisingly he refuses to help look after her in any way.

I haven’t been able to see my children, to go back to work or have even a day off. Financially, it has cost me ten and tens of thousands to be here and care for her. And dare I say that nobody who knows me would ever consider me a mess or a failure.

Two weeks ago, a friend of mine from the UK was finally able to come and stay. Hurrah! My friend knows my mum very well but hadn’t seen her in two years. She has told me that she is shocked by the changes in my mum’s behaviour and that my fears are grounded and my mother’s complaints are utterly baseless and delusional. I know that, of course, but it is a relief to hear it from someone else.

It’s not pleasant to live through being painted as a super-villain by your own mother and frankly it’s hard to know how I find the time to be so wicked on so many levels and yet still neglectful, but it seems I’m a woman of many talents.

I know it’s the illness and not her. I see how she struggles to make sense of what is happening around her as she tries to fit what she can remember around what she cannot. It is desperately, desperately sad.

The other evening, I had just sat down to join her by the TV when it suddenly began to rain. I told her I was going to bring the washing in and ran out to the garden. When I came back, she asked me who had been on the phone. Nobody, I said. The phone hasn’t rung. I went down to take the washing in because it was raining.

Why do you always tell these lies, she said. Why can’t you just tell me who was on the phone?

So, I asked her if the phone – which was right next to her - had rung? No, it hadn’t, she said. I asked her if the garden outside looked wet? Yes, it did, she agreed.

So perhaps I’d just been getting the washing in after all?

She got very angry and started shouting. Why do you lie to me and confuse me all the time? You’re such a liar … and so on.

Almost every day is like this now. I’m sure it is familiar territory for many of you.

I am certain that the huge changes in my mum’s personality, the memory losses and the tantrums all point in one direction – that she has dementia. It is time to get a diagnosis. It’s not going to be easy as she has no insight into what is happening to her and a hefty degree of paranoia.

I’ve already begun the process of getting social services involved. France has a really good support structure for elderly people and their carers. It will mean that I will be able to get some respite.

This is a journey that I have dreaded. It won’t get easier and we all know how it ends. When I think about it, I feel that my mum – the person who I love – has already slipped away. I feel that as grief. She feels it as anger and confusion. It’s a *******, isn’t it?

Kathy

 

[Violet Jane]

Oh, my goodness, Kathy. What a story. You have done an incredible amount for your mother. Could you not return to Scotland now where you will have more support for yourself. I'm no doctor but it sounds as if your mother has dementia and that it's quite advanced. I've not experienced this but some people with dementia have very challenging behaviour: suspicious, paranoid, delusional, aggressive and even violent and these things often bear no relation to what the person was like before the illness developed. There are medications available that can help with extreme behaviour. Ask the doctor about them as they can take the edge off the behaviour. Don't discount the possibility of Delirium either. A simple UTI can cause a dramatic change in behaviour in an elderly person with or without dementia.

 

[Wildwoodflower]

Thank you. There's pros and cons to going back to Scotland and while you're right, there's more in the way of informal personal support for me, on balance we may be much better off staying in France.
I had wondered about a UTI but there are no other symptoms and it would have to have been permanent. But thanks for prompting me to think about it again and I'll talk with the doctor. x

 

[Violet Jane]

Wildwoodflower, I'm not suggesting that your mother's problems are solely attributable to a UTI or UTIs. There's clearly something very wrong with your mother and it is most likely to be dementia. My point about UTIs is that they can make the confusion much worse, and can cause hallucinations. Alternatively, they can make the person very sleepy. This site has a very good factsheet on Delirium, which is a common problem in elderly people whether they have dementia or not.

It's hard but try to remember that the horrible things that your mother says to you and about you are part of her illness. If you read other threads you will see that the sweetest and most gentle people can undergo a complete personality change, turning into someone vicious and abusive. Dementia is a horrifying illness.

I do hope that you will be able to get some support from yourself, whether formal or informal.

 

[canary]

Hi @Wildflowerlady and welcome to Talking Point.

I had a similar experience with mum (although she didn't live in France), in that she too accused me of stealing from her and abusing her - and told all her neighbours this too. When I went to visit I could see them giving me odd looks.......

It was soon after this that mum needed a secure care home and I think you may be heading that way too. Don't assume that you will be able to look after her yourself right up to the end. I would honestly recommend that you move back to Scotland as soon as you can. You have done amazingly well to sort everything out and get the house sold, but it is only going to get worse. If you leave it until there is no option other than a care home you will be into all sorts of problems.

 

[Wildwoodflower]

I very much appreciate your point about a care home. There's far more practical help from social services available here than there is in Scotland and a very different approach by government, which means that leaving needs to be very carefully thought through and pros and cons weighed. A care home sooner rather than later may be the answer, however, wherever we are.
As you can see, there's a lot of thinking out loud being done here and I'm grateful for every word. x

 

[Violet Jane]

Yes, you clearly have a lot to think about, weighing up the pros and cons of your mother staying in France versus moving back to Scotland. One thing though: you said that your mother has forgotten her French. How would she manage with French-speaking carers either at home or in a care home? Are there likely to be carers who speak a good level of English?

I hope that you get something sorted out soon. You’ve done an incredible job coping with so much on your own and abroad.

 

[Marcelle123]

You have done so much and I take my hat off to you. It must be searing to be denigrated to family members when you have given up so much for your mother's care. I hope you find a good solution to it all. I think the point about understanding the carers is important, as the staff at my mother's care home added much to her happiness in her final months.

Just to add my own experience: I too had my mother (who lived in a bungalow three doors from us) accuse me and my husband of financial skulduggery. She repeated this to my brother, who knew that it was fabrication. My mother could also be incredibly nasty - once, because I urged her to eat her soup while it was warm, she said that if she had only known what a horrible daughter I'd be, she'd have refused to give birth to me. Even though I knew it was only the dementia talking, it was still hurtful. When she was waiting in hospital to be seen and my husband didn't respond to her demands to be taken home, she hit him with her stick.

Mum refused to have carers or cleaners or to consider a care home until a hospital crisis (cellulitis in her leg) put it out of her hands. During her hospital stay, her dementia got worse and she forgot about her own home. We were able (at second go) to get her into a really nice care home with dementia-trained staff. She was prescribed memantine and an anti-depressant which improved her cognition and her mood. She died after a year in care, during which I visited her several times a week, but in that year she was much more content than she had been during the previous five years.

 

[Wildwoodflower]

My research reveals that there are care homes in my department with staff trained for work with english-speaking ex-pats.

My mum would have no problem with carers and cleaners - well, theoretically, at least, who can say what the reality might be - which is why I'm engaging with French social services.

However, I can see that she is going to try and resist going into a residential home as she believes, despite the overwhelming evidence to the contrary and her complete reliance on me, that she can manage by herself.

This morning she is shouting at me that she want's a doctor's appointment. She doesn't need one, it's just that she has finished a course of tablets treating her vertigo. We are waiting for the GP to call her back in, if necessary, after he gets the results of a blood test. In the meantime, I re-explain this every few hours. Then I try not to listen to her walking around the house talking to herself about how selfish and useless I am.

Meanwhile, I'm drafting a letter to her GP setting out my concerns around the rapid changes in her personality and the delusions she is suffering, with evidence. Naturally, it feels awful.

 

[Violet Jane]

Has a diagnosis relating your mother's cognition been made? If the GP is not aware of how bad your mother is now then you do need to tell him/her urgently. You shouldn't feel awful contacting the GP. You are doing it to protect her.

 

[Violet Jane]

I meant to add that if the GP is sufficiently concerned about your mother s/he would, I hope, make a referral to Social Services. It will be interesting to see whether they take the same approach regarding capacity as that in England (i.e. that if the person has capacity s/he can decide what s/he wants in terms of carers, residential care etc. You are then relying on persuasion.

 

[DesperateofDevon]

Hello everybody,

I’ve been reading your posts and feeling for the first time that perhaps I’m alone in this and that what has been happening with my mum is common.

Here’s our story.

My mum will be 91 next month. She was widowed when she was in her fifties and when she was sixty, she sold her business and her home and moved to France. She has lived here for 30 years, has had a good life and been happy.

I’m her daughter, 56, divorced and have two children at university. Normally, I live in Scotland.

About seven years ago, I recognised that my mum was finding the winters in France hard going by herself and started inviting her to stay with me in Edinburgh for the coldest months.

She would arrive in November and stay until April. As the years passed I began to notice small changes in her ability to cope with life’s more pressing issues – keeping on top of her bills and so on – and would help when help was needed. I put this down to advancing age.

In the summer of 2019, I had to fly her back to the UK as in quick succession she wrote off her car and then found she couldn’t cope at all when a heatwave hit. She has lived with me ever since.

As it was clear that she could no longer live alone and in January 2020, I brought her with me to France with the aim of getting her house sold and for her to use the money to buy a sheltered flat near me in Edinburgh.

I found her house in a state. I’d had no idea how much she’d neglected maintenance and I realised that for her to sell it at all, I would have to bring it up to scratch. Fortunately, I have skills.

That was February 2020. I’d only intended to us to stay for a maximum of three months. Then the pandemic hit and it was clear that if I were to try and travel with a fragile 89-year-old it was likely to be a death sentence for her. So, we stayed put, I set about repairing the house and we went through the various lockdowns.

My mum was clearly becoming much more difficult, contrary, rude and ungrateful, but I put it down to the stress of lockdown, even though we were in a safe area and with our own woods and garden to walk in. However, by the summer it was clear that there was a lot more going on than just a grumpy old lady.

From the spring of this year, the deterioration has accelerated. She has forgotten her French. She has become increasingly forgetful and uncharacteristically spiteful and mean. I have never known her say anything like the horrendously hurtful stuff that is now her daily output. She responds to any frustration with furious anger. On a couple of occasions, she has tried to hit me.

I recently discovered that she has been phoning friends and family telling them awful stories centred on me. None of what she says is in any way true, but they follow a theme that I’m after her money, that I abuse her, that I neglect her and that I am a monster. She also tells people variously that I’m a mess/failure because I’m here looking after her. Oh the irony!

The reality is that I have given up the past two years to care for her. I have repaired her house and got it sold for 30k over the valuation (we will move in January). I cook, clean, wash, drive, shop, garden, wash her, rescue her when she gets stuck in the bath and change her bedclothes. I do her banking and pay her bills. I have sorted out the various catastrophes that had arisen from her getting her finances and other affairs in a muddle. I translate, I monitor her health and act on her medical needs. I talk to her, listen to her stories and her worries. I take her out for jaunts, take her for walks, take her to meet friends.

In the meantime, I’ve been unable to get back to the UK myself because it is unsafe to leave her alone, she can’t travel and there is nobody else to look after her. I have a brother. He has always been a pig and unsurprisingly he refuses to help look after her in any way.

I haven’t been able to see my children, to go back to work or have even a day off. Financially, it has cost me ten and tens of thousands to be here and care for her. And dare I say that nobody who knows me would ever consider me a mess or a failure.

Two weeks ago, a friend of mine from the UK was finally able to come and stay. Hurrah! My friend knows my mum very well but hadn’t seen her in two years. She has told me that she is shocked by the changes in my mum’s behaviour and that my fears are grounded and my mother’s complaints are utterly baseless and delusional. I know that, of course, but it is a relief to hear it from someone else.

It’s not pleasant to live through being painted as a super-villain by your own mother and frankly it’s hard to know how I find the time to be so wicked on so many levels and yet still neglectful, but it seems I’m a woman of many talents.

I know it’s the illness and not her. I see how she struggles to make sense of what is happening around her as she tries to fit what she can remember around what she cannot. It is desperately, desperately sad.

The other evening, I had just sat down to join her by the TV when it suddenly began to rain. I told her I was going to bring the washing in and ran out to the garden. When I came back, she asked me who had been on the phone. Nobody, I said. The phone hasn’t rung. I went down to take the washing in because it was raining.

Why do you always tell these lies, she said. Why can’t you just tell me who was on the phone?

So, I asked her if the phone – which was right next to her - had rung? No, it hadn’t, she said. I asked her if the garden outside looked wet? Yes, it did, she agreed.

So perhaps I’d just been getting the washing in after all?

She got very angry and started shouting. Why do you lie to me and confuse me all the time? You’re such a liar … and so on.

Almost every day is like this now. I’m sure it is familiar territory for many of you.

I am certain that the huge changes in my mum’s personality, the memory losses and the tantrums all point in one direction – that she has dementia. It is time to get a diagnosis. It’s not going to be easy as she has no insight into what is happening to her and a hefty degree of paranoia.

I’ve already begun the process of getting social services involved. France has a really good support structure for elderly people and their carers. It will mean that I will be able to get some respite.

This is a journey that I have dreaded. It won’t get easier and we all know how it ends. When I think about it, I feel that my mum – the person who I love – has already slipped away. I feel that as grief. She feels it as anger and confusion. It’s a *******, isn’t it?

Kathy

Yes it is ****
(((hugs)))

you are grieving the person your Mum was … hold onto the good memories tightly.