Hi everyone, I am a caregiver to my 92-year-old mother

[denisue]

Approximately two months ago, my husband and I moved across the country and brought my 92-year-old mother to live with us. I believe she is in the middle stages of dementia. We have an appointment with the doctor in September and I want him to give me a diagnosis as to what we are dealing with.

She gets angry, tearful, can't follow recipes, can't write well, memory is beyond horrible and blames all her symptoms on everyone else. She's probably scared. I would be too. We took her out of assisted-living to move to another part of the country and provide what I think is much better care to her. While she was there in the assisted living facility, she said she hated it. As soon as she moved in with us, she now says it wasn't so bad. She misses her friends there. I am actively working to set up a social network of seniors.

She is not so advanced in dementia that she cannot do things on her own; however, she follows me around constantly to chat. She does nothing to entertain herself and if I suggest anything, she says ok but is not enthused.. She is very passive and never initiates activities that do not include me. Often she just sits in her sitting room with her hands folded. I bring up all the things she could do and she just looks at me and says, she could....

Mind you, I have not lived with my mother since I was 18 years old and I am 67 now. She and I were never particularly close, but my only sibling died in January so I am responsible for her. I have tried to give her so many options for entertainment and it doesn't seem to work.

She wants to spend all her time with me and I'm a very independent person anyway. How do I cope with someone like that? Does anyone else have a situation that is similar and how do you work with that? I don't want to hurt her feelings, but I cannot be her sole entertainment. I love her but the all-day let's be best friends is exhausting. We spend quite a bit of time together anyway as I am retired.

Is a symptom of dementia also include nothing is her fault; ie the eggs were too small and that's why the recipe didn't work, or her new phone doesn't work instead of her just not writing the phone number down correctly, etc.

Thanks for hearing me out. Any advice is appreciated!

By the way, I do not live in the UK, but I have found that there are kind people here so please don't hold it against me. 🙂

 

[Collywobbles]

All of your Mum’s behaviours sound absolutely typical for dementia and I recognise many in my Mum. The ‘imprinting’ on a single person, especially. My Mum follows Dad everywhere he goes and is becoming increasingly clingy. Some folks here have described how they’re followed to the bathroom. And yes, nothing is ever her fault.

The dissatisfaction with wherever they are is another familiar aspect. Often people believe that their confusion and disorientation are linked to the place where they currently are - they’d feel alright again if only they could go somewhere more familiar. This tends to manifest as a desire to “go home”, even in homes where they might have lived for decades. They don’t realise that they’d carry their bewilderment with them.

You need to bear in mind that all of your Mum’s behaviours will gradually become more pronounced.

 

[canary]

Hello @denisue and welcome to the forum - dementia is the same the world over

Im afraid that all the things you have described are absolutely classic mid-stage dementia behaviours. people with dementia lose far far more than their memory.

One of the most common things for them to lose at this stage is self-insight. They are unable to comprehend that there is something wrong with them and think that they have not changed at all, so when things go wrong they are unable to realise that its them and they blame where they are living, the people around them, the equipment they are using and, yes, the size of the eggs...... They know that Something is wrong, but do not understand that this Something is them, so they often try to escape it by going somewhere else and often want to return to places they have previously lived thinking that if they did so, then they would leave all the confusion behind - not realising that they will simply take it with them

Another loss is the inability to initiate tasks. They dont know how to do things, or where to start and it all seems too daunting. Its often combined with a loss of sequencing so they dont know what order to do things. So they want someone with them, directing them and reminding them how to do things. Left on their own they simply stop doing anything.

It also sounds like your mum has reached the Shadowing stage. It is typical of mid-stage dementia for them to become anxious and afraid when left on their own because they need someone with them to reassure and direct them. So they want to be able to see their main carer every moment of their life and will follow them around all the time.

Im afraid that you will not be able to change this behaviour - you will have to do things yourself to be able to cope. Compassionate Communication may help. Do not feel you have failed if you cant do it all the time and not everything will work anyway, but it might give you some pointers

Compassionate Communication with the Memory Impaired

The following piece was posted a while ago on DSF and made a big impression on me. It is something I have referred to time after time and tried hard to follow. We have many new members who may not have seen it before. Yesterday I posted it on another Thread but thought it might be helpful if...

forum.alzheimers.org.uk

The main thing, though is that you will need time apart from your mum. I dont know what will be available where you live, or how you access it. Are there things like day care? Could you find someone to take her out somewhere one morning/afternoon a week to give you a break? You may have to pay someone for this, but I tell you, it will be worth every penny

 

[Kevinl]

Nothing other to say than thank you, not a lot to say but it's all I have to give.
We carers all struggle too even though as you're outside the UK I understand from what you've said, we still care but advise may vary.
Compassion doesn't respect international boundaries, we post on here because we care.
K

 

[northumbrian_k]

Hi @denisue and welcome to our community of members who have experience of many aspects of dementia. As others have indicated, dementia recognises no borders and we are always pleased to greet members wherever they are. You'll find true understanding and empathy here so keep on reading and posting whenever you need to.

 

[Calon Lan]

Hi @denisue,

My mother has mixed Alzheimer’s and vascular dementia, first diagnosed in 2019. I lived with her for nearly three years before she moved into a care home. Like others, I also recognise a lot of the symptoms and behaviours you describe.

You are right, you cannot be the sole source of support and entertainment for your mother. Looking after someone who needs so much psychological support and understanding 24/7 can engulf and overwhelm all other parts of a carer’s life. It can be extremely stressful and mentally exhausting. I would prioritise looking for outside help and support if you can.

Sadly it becomes more and more difficult to find suitable activities for someone with dementia. My mother used to watch a lot of TV, but she gradually lost interest as she couldn’t follow stories any more. She loves singing, and she will watch and sing along to music videos on YouTube. She likes talking about her years as a nurse, and looking at old photos and other mementoes of that time. Her mobility is good for a 90 year old and she likes short walks. She now likes colouring simple pictures with me, which is something she would never have done years ago! It’s sometimes surprising what works, and trial and error is often the best approach. I leave my mum to rest whenever she seems tired. She often doesn’t want to do anything much by the middle of the afternoon. Most activities organised at her care home happen during the morning.

This forum has helped me through some tough times in the past few years. There are a lot of people here who can provide support and understanding. I am pretty sure there are many here from the USA - so you may well hear from some of them soon.

Sending thoughts and best wishes.

 

[denisue]

All of your Mum’s behaviours sound absolutely typical for dementia and I recognise many in my Mum. The ‘imprinting’ on a single person, especially. My Mum follows Dad everywhere he goes and is becoming increasingly clingy. Some folks here have described how they’re followed to the bathroom. And yes, nothing is ever her fault.

The dissatisfaction with wherever they are is another familiar aspect. Often people believe that their confusion and disorientation are linked to the place where they currently are - they’d feel alright again if only they could go somewhere more familiar. This tends to manifest as a desire to “go home”, even in homes where they might have lived for decades. They don’t realise that they’d carry their bewilderment with them.

You need to bear in mind that all of your Mum’s behaviours will gradually become more pronounced.

All of your Mum’s behaviours sound absolutely typical for dementia and I recognise many in my Mum. The ‘imprinting’ on a single person, especially. My Mum follows Dad everywhere he goes and is becoming increasingly clingy. Some folks here have described how they’re followed to the bathroom. And yes, nothing is ever her fault.

The dissatisfaction with wherever they are is another familiar aspect. Often people believe that their confusion and disorientation are linked to the place where they currently are - they’d feel alright again if only they could go somewhere more familiar. This tends to manifest as a desire to “go home”, even in homes where they might have lived for decades. They don’t realise that they’d carry their bewilderment with them.

You need to bear in mind that all of your Mum’s behaviours will gradually become more pronounced.

Thank you for confirming and acknowledging that my mom's symptoms are similar in nature to others. This disease seems to rob people of their old identities and replaces it with identities that I am not at all familiar with. I am so happy to have found a place where I can unburden myself.

 

[Jaded'n'faded]

Hi @denisue

I can't help thinking it's a shame you weren't more aware of what your mum was like before you moved her in with you!

She will get more anxious and clingy, less able to motivate herself, totally unable to follow instructions or remember things you've told her. She may start to get wobbly and fall over and she will certainly become incontinent at some point. I also think it's unlikely your relationship will improve though it could get a whole lot worse. I wonder, too, how your husband feels about it all and what will happen to your relationship with him?

As she was in Assisted Living before and now claims she liked it there, would it be possible to move her to somewhere similar near you, where you could still offer some help and keep an eye on her? Beware though, that depending on how the dementia progresses, she may need more care than is offered in AL and you may need to look for some sort of care home instead. That way you could go back to being her daughter and let others do the hand-on caring.

Moving your mum in because you know you can offer better care is an admirable thing but the reality is often a lot less simple. It's just not a workable solution for everyone.

 

[denisue]

Hi @denisue

I can't help thinking it's a shame you weren't more aware of what your mum was like before you moved her in with you!

She will get more anxious and clingy, less able to motivate herself, totally unable to follow instructions or remember things you've told her. She may start to get wobbly and fall over and she will certainly become incontinent at some point. I also think it's unlikely your relationship will improve though it could get a whole lot worse. I wonder, too, how your husband feels about it all and what will happen to your relationship with him?

As she was in Assisted Living before and now claims she liked it there, would it be possible to move her to somewhere similar near you, where you could still offer some help and keep an eye on her? Beware though, that depending on how the dementia progresses, she may need more care than is offered in AL and you may need to look for some sort of care home instead. That way you could go back to being her daughter and let others do the hand-on caring.

Moving your mum in because you know you can offer better care is an admirable thing but the reality is often a lot less simple. It's just not a workable solution for everyone.

 

[denisue]

Great observations. I was aware of her declining status but naïvely thought that moving her in with us would be a great solution. My husband is a great support to me and acts as a real buffer at times between my mom and I. He does work full-time so thankfully, his exposure level is low. He is very kind to my mom. I think many of my problems can be solved right with me. I have to remember I'm dealing with a disease and not the mom I've always known and therefore can't take it so personally. It is a work in progress for sure and I even feel odd complaining when I read so many worse situations out there. I also have to remember that we have only lived together for about two months now and it's a learning process with good days and bad days.

It will be a roller coaster ride for sure. Best wishes to all.

 

[1235]

You might want to look up something called anosognosia. It’s common in dementia and is the inability to see or understand their own limitation. I think it is one of the hardest things we have had to deal with. I have also attached a staging tool that can be very helpful. It may give you a better idea of where things may be headed(everyone is a bit different). Good luck.

 

[denisue]

You might want to look up something called anosognosia. It’s common in dementia and is the inability to see or understand their own limitation. I think it is one of the hardest things we have had to deal with. I have also attached a staging tool that can be very helpful. It may give you a better idea of where things may be headed(everyone is a bit different). Good luck.

Thanks for the tool-fascinating and worth keeping. I think the thing that surprised me in the tool was the mention of an increased appetite for sweets. Since I was little, she simply was not at all interested in sweets and now she buys it up.

I will look up anosognosia for sure- thanks again.