Good days & bad days…

[Purple rain 50]

Yesterday was a bad day & I was horrible!
It was the first day of the school summer holidays & I was already wondering how I would balance working from home, mums needs & trying to find time for my 9 year old to have some fun.

Mum rang at 5.45 to ask what time I would be around & then again at 7.30. I reassured her that her neighbour would be bringing her newspaper at 9 & a friend would be visiting at 10.30 & I would arrive at 11.30.
I know she was panicking & anxious but she continued to ring & I told her I needed a break from it all. She then cancelled the friend visiting as she only wanted me there. I was so cross when I got to hers laden with shopping to fill her fridge to be told she’s perfectly capable of doing her own shopping!

Everything calmed down & she settled with her colouring & we left after 4 hours with the promise to be back later.

When I went back later to do tea & tablets she was very disconcerted that she had no memory of the day (she seems to have these moments when she’s aware that brain is failing her) but I reassured her that weekends can be like that & she had just been engrossed in the colouring.

Spent the evening feeling guilty & crying as the reality of this situation settled on me (I’ve been hard nosed & just getting on with the job for last 6+ months)

This morning, it’s like a different person! First phonecall at 8.15 to say she’d lost house keys. Turns out she had double locked door “as always” (she hasn’t needed to do that for years!).
Next phonecall “shall we go out for lunch or shall I cook something (again not cooked for about a year) & she’ll see me at 12!

Have we slipped into a parallel universe? Do better days always follow the bad ones? & what shall I do with these extra couple hours I’ve been gifted? ☕️🧁😂

 

[SeaSwallow]

@Purple rain 50 You were not horrible at all, you are trying to balance looking after your mum, work and looking after a 9 year old. Where is the time for yourself in all of this. I really do not know how you cope on a day to day basis.
Because of the way that you described your mum as having no memory of the time that you spent with her I am also wondering if she has these times when she is alone. This might indicate that it is time to consider whether or not full time care in a nursing home might be better for your mum. In this way she would be looked after 24/7 and you would be able to go back to being her daughter rather than a tired carer being torn in so many directions.
As for good days following bad, yes they can, but unfortunately bad can follow the good. I really hope that you have a better day today.

 

[nic001]

Yesterday was a bad day & I was horrible!
It was the first day of the school summer holidays & I was already wondering how I would balance working from home, mums needs & trying to find time for my 9 year old to have some fun.

Mum rang at 5.45 to ask what time I would be around & then again at 7.30. I reassured her that her neighbour would be bringing her newspaper at 9 & a friend would be visiting at 10.30 & I would arrive at 11.30.
I know she was panicking & anxious but she continued to ring & I told her I needed a break from it all. She then cancelled the friend visiting as she only wanted me there. I was so cross when I got to hers laden with shopping to fill her fridge to be told she’s perfectly capable of doing her own shopping!

Everything calmed down & she settled with her colouring & we left after 4 hours with the promise to be back later.

When I went back later to do tea & tablets she was very disconcerted that she had no memory of the day (she seems to have these moments when she’s aware that brain is failing her) but I reassured her that weekends can be like that & she had just been engrossed in the colouring.

Spent the evening feeling guilty & crying as the reality of this situation settled on me (I’ve been hard nosed & just getting on with the job for last 6+ months)

This morning, it’s like a different person! First phonecall at 8.15 to say she’d lost house keys. Turns out she had double locked door “as always” (she hasn’t needed to do that for years!).
Next phonecall “shall we go out for lunch or shall I cook something (again not cooked for about a year) & she’ll see me at 12!

Have we slipped into a parallel universe? Do better days always follow the bad ones? & what shall I do with these extra couple hours I’ve been gifted? ☕️🧁😂

I think this is the nature of the Alzheimer’s. I’ve called my mum before and she’s offered to make lunch for me when I’m visiting, she hasnt prepared any food for about 4 years hit her mind has gone back to a time when she did. I make an excuse and distract her onto something else usually.
I do feel for you, I fear you’re going to burn yourself out with the amount of care you’re solely providing to your mum. I’m not sure it’s sustainable. You need help, hope you don’t mind me saying.

 

[Purple rain 50]

@Purple rain 50 You were not horrible at all, you are trying to balance looking after your mum, work and looking after a 9 year old. Where is the time for yourself in all of this. I really do not know how you cope on a day to day basis.
Because of the way that you described your mum as having no memory of the time that you spent with her I am also wondering if she has these times when she is alone. This might indicate that it is time to consider whether or not full time care in a nursing home might be better for your mum. In this way she would be looked after 24/7 and you would be able to go back to being her daughter rather than a tired carer being torn in so many directions.
As for good days following bad, yes they can, but unfortunately bad can follow the good. I really hope that you have a better day today.

Thank you for your reply!
I seem to be constantly weighing up the options in my mind … should I bring her to live with me or just try to keep her in her own home as long as possible. She’s VERY opposed to the care home option at the moment & part of me wants her to deteriorate further to a point she’s not aware (if that ever happens).

At the moment I think she would benefit from being in residential care as I know she’s scared & lonely. It’s such a difficult step.

I only live a 5 min drive away & she’s mostly only alone (awake) for 2 hours max (but sometimes that drive feels like climbing a mountain!)

Memory team are discussing her case tomorrow apparently so hoping to get something back from them soon. I have a strong feeling they will say nothing wrong with her!

 

[Purple rain 50]

I think this is the nature of the Alzheimer’s. I’ve called my mum before and she’s offered to make lunch for me when I’m visiting, she hasnt prepared any food for about 4 years hit her mind has gone back to a time when she did. I make an excuse and distract her onto something else usually.
I do feel for you, I fear you’re going to burn yourself out with the amount of care you’re solely providing to your mum. I’m not sure it’s sustainable. You need help, hope you don’t mind me saying.

Thank you for your reply!
I think this will be easier once we get an actual diagnosis. Sometimes it feels like things are getting better & I convince myself it’s just her (extreme) anxiety that’s causing the problems.

For today I’ll just book a table at the pub for lunch, remember to look her in the eye, smile & try to think of something to talk about that doesn’t remind her of the things she can’t remember 😊

 

[SeaSwallow]

Thank you for your reply!
I seem to be constantly weighing up the options in my mind … should I bring her to live with me or just try to keep her in her own home as long as possible. She’s VERY opposed to the care home option at the moment & part of me wants her to deteriorate further to a point she’s not aware (if that ever happens).

At the moment I think she would benefit from being in residential care as I know she’s scared & lonely. It’s such a difficult step.

I only live a 5 min drive away & she’s mostly only alone (awake) for 2 hours max (but sometimes that drive feels like climbing a mountain!)

Memory team are discussing her case tomorrow apparently so hoping to get something back from them soon. I have a strong feeling they will say nothing wrong with her!

It is such a hard decision to make, but I would suggest that you think carefully about having your mum to live with you. Your son has to be your first priority and children and people with dementia do not always mix well.
I hope that the meeting with the memory team goes well.

 

[nic001]

Thank you for your reply!
I think this will be easier once we get an actual diagnosis. Sometimes it feels like things are getting better & I convince myself it’s just her (extreme) anxiety that’s causing the problems.

For today I’ll just book a table at the pub for lunch, remember to look her in the eye, smile & try to think of something to talk about that doesn’t remind her of the things she can’t remember 😊

Unfortunately the higher anxiety comes the dementia, as I’ve seen in my mum. It won’t get better sadly, only progressively worse. It’s so hard to accept, but like you’re doing - take one day at a time and look after yourself.

 

[Purple rain 50]

It is such a hard decision to make, but I would suggest that you think carefully about having your mum to live with you. Your son has to be your first priority and children and people with dementia do not always mix well.
I hope that the meeting with the memory team goes well.

You’re right - my poor boy spends most of his time gaming in another room (keeping out of the way)
He got an ADHD diagnosis last term & I haven’t even sat down down with the SENCO to see what school can do to help! Just writing that down makes me realise I do need to get something sorted for mum & me before September 🤦🏻‍♀

 

[Purple rain 50]

Unfortunately the higher anxiety comes the dementia, as I’ve seen in my mum. It won’t get better sadly, only progressively worse. It’s so hard to accept, but like you’re doing - take one day at a time and look after yourself.

 

[Purple rain 50]

Mums always been an anxious person but last 3 years have been off the scale. Mirtazapine seems to be taking the edge off it for now!

If it was just me & I didn’t have to work I think I could cope with looking after her now that she needs me - unfortunately I have to pay the bills (& I do love my job!)

 

[jugglingmum]

My children were 8 and 12 when mum clearly needed support. She lived 200 mikes away and due to hoarding I couldn't leave her in her house.

I moved her into sheltered extra care which was perfect but your mum is more advanced than my mum was then and I honestly think a care home would be best at this stage.

The anxiety your mum is suffering from is part and parcel of dementia. Medication helps but having someone around all the time us the only solution. The memory clinic remit is narrow and will only provide a diagnosis and nothing else. It's up to you to make things happen.

As for schools and special needs issues I cried myself to sleep more often over this than issues with mum's dementia. You will need to fight and fight. My son has never been diagnosed as school never sent senco report home which gave him 25% extra time. I have report now as needed for uni.

My son has dyslexia and ADD ( daughter also now diagnosed ADHD but this caused no issues in school). Primary school were useless with son, high school were better. Proritse your son as you will have to fight to get adequate support out of school and your son needs support now so he can cope with high school.

 

[Purple rain 50]

My children were 8 and 12 when mum clearly needed support. She lived 200 mikes away and due to hoarding I couldn't leave her in her house.

I moved her into sheltered extra care which was perfect but your mum is more advanced than my mum was then and I honestly think a care home would be best at this stage.

The anxiety your mum is suffering from is part and parcel of dementia. Medication helps but having someone around all the time us the only solution. The memory clinic remit is narrow and will only provide a diagnosis and nothing else. It's up to you to make things happen.

As for schools and special needs issues I cried myself to sleep more often over this than issues with mum's dementia. You will need to fight and fight. My son has never been diagnosed as school never sent senco report home which gave him 25% extra time. I have report now as needed for uni.

My son has dyslexia and ADD ( daughter also now diagnosed ADHD but this caused no issues in school). Primary school were useless with son, high school were better. Proritse your son as you will have to fight to get adequate support out of school and your son needs support now so he can cope with high school.

Thank you for that! I think I need people to tell me that I can’t do it all (friends etc. have been doing so already!)

My son has really struggled at school this year - there’s a lot of kids in his class with SEN & the brilliant LSA they’ve had since class 1 has been moved out to a different class with no explanation. He really misses her!
To be fair the school have been good & first picked up on his quirks in reception. They referred him for anxiety counselling after Covid & the counsellor there agreed with me that it was “spectrum disorder” (we’re still waiting for the autism diagnosis). This year I feel like he’s just coasted along with very little help but I’ve been relieved that he’s finally got a best friend (his social isolation always upset me more than the academic side!)
He’s got two years of primary left so I need to prioritise him as you say & make sure he’s ready for big school.

Part of me wants to buy a camper van & just drive around the country showing him castles & coastlines & home educate him - just my little fantasy!

Having a very strange conversation with mum while I’m writing this - she’s been colouring for hours & while it relaxes her I’m sure it makes her mind wander even more 😬x

 

[Muttimuggle]

I completely agree with what others have said -that the anxiety is caused by the dementia and that it will, sadly, only get worse. Everything you say about your mother's behaviour seems very familiar to me. I experienced similar before my mother finally went into Residential Care - and this was because she became more and more unstable on her legs(kept having falls) which I was also told was part of the dementia. The only difference with me to you is that I think my patience was thinner. I tried to maintain my own sanity and some protection of my time whilst making regular visits to bring shopping, sorting out the problems(heating, keys, remote controls which"wouldn't work"), hospital visits, tablet sorting, sign making(but she eventually paid no attention to what I had hoped would be helpful signs), then later organising carers coming in....well these things on top of what I tried to make the occasional friendly, just social visit to her(with difficulty). I was worn out even so despite my protectiveness of my own time....and I don't have a school age child. Your young son sounds as though he needs you. His life is important and, I believe, should be your first priority. He also needs a Mum who is not "run ragged" by too many other demands.
If your Mum's assessment comes back as saying there is nothing wrong with her as you fear then your input is needed.Tell them some of the things you have said here and be honest.

On the matter of your Mum assuming she is capable of doing her own shopping that is so familiar too.I don't think that sort of inaccurate thinking changes much. My Mum, now much more placidly settled in her very basic but caring Residential Care home (about 10 months now ) ,will ask when I visit her in her room if I would like a cup of tea, by implication that she would make me one. With nothing but a bed and an ensuite toilet she has no facilities, or tea bags or milk or fridge or kettle and hasn't made a cup of tea in over a year....but she used to always make tea when I arrived in the home she used to live in.

 

[Purple rain 50]

I completely agree with what others have said -that the anxiety is caused by the dementia and that it will, sadly, only get worse. Everything you say about your mother's behaviour seems very familiar to me. I experienced similar before my mother finally went into Residential Care - and this was because she became more and more unstable on her legs(kept having falls) which I was also told was part of the dementia. The only difference with me to you is that I think my patience was thinner. I tried to maintain my own sanity and some protection of my time whilst making regular visits to bring shopping, sorting out the problems(heating, keys, remote controls which"wouldn't work"), hospital visits, tablet sorting, sign making(but she eventually paid no attention to what I had hoped would be helpful signs), then later organising carers coming in....well these things on top of what I tried to make the occasional friendly, just social visit to her(with difficulty). I was worn out even so despite my protectiveness of my own time....and I don't have a school age child. Your young son sounds as though he needs you. His life is important and, I believe, should be your first priority. He also needs a Mum who is not "run ragged" by too many other demands.
If your Mum's assessment comes back as saying there is nothing wrong with her as you fear then your input is needed.Tell them some of the things you have said here and be honest.

On the matter of your Mum assuming she is capable of doing her own shopping that is so familiar too.I don't think that sort of inaccurate thinking changes much. My Mum, now much more placidly settled in her very basic but caring Residential Care home (about 10 months now ) ,will ask when I visit her in her room if I would like a cup of tea, by implication that she would make me one. With nothing but a bed and an ensuite toilet she has no facilities, or tea bags or milk or fridge or kettle and hasn't made a cup of tea in over a year....but she used to always make tea when I arrived in the home she used to live in.

All of the responses I’ve had have been so useful & I think has settled things in my mind that it wouldn’t work having mum coming to live with me (so I’ll stop mentally rearranging furniture & building wet room extensions!). I’ve got some reasoned arguments tucked away in preparation although I don’t suppose there will be any actual discussions once it comes to it. Mum believes it’s my duty to care for her I think!

I think the offering of food is just a habit from the past. All of a sudden mum will suddenly say “ooh I don’t know if I’ve got anything in for lunch” & often asks if I’m hungry/ want something to eat.

Not sure how good my patience has been lately 😂 - we’ve done ok today & everyone relatively happy 😃

Glad your mum is settled now. I’m definitely going to start doing some research /looking at some local places (even if just for some respite initially