Mum, 59 with early onset Alzheimer’s Disease - experience

[CarM]

Hi, I rarely use this forum (sadly) but would like to share my unfinished experience.

My mum was diagnosed at age 55 in 2017, I was 26. I live in London but it took a year of appointments including mri scans, an eeg scan, a lumbar puncture, several memory tests for her to get a diagnosis.

Because of her age, she couldn't get access to some "older people" services. I got PIP for her without the diagnosis but had to fight to get her on the right ESA even after the diagnosis. She know receives both.

I was working full time from 2017 to 2020 and it was hellish. My siblings didn't care. One of them was living with us and wouldn't help at all with anything regarding my mum or the home. I eventually got her to leave in 2019 because she was abusive to me. None of my siblings help still and it's one of the hardest things to think about because they know I'm struggling.

Because of my age, none of my peers understand just how much I'm going through or even what dementia is or why I'm not free to go out whenever they're free. Also, explaining to neighbours and her previous friends why she's acting a certain way is sometime difficult, intimidating and I feel vulnerable for both of us.

Getting help from adult social services has been one of the most stressful parts. I still haven't had a day's respite over a year after the care package started. Submitted a 3000 word complaint. Carers are regularly 20 mins to 1hr 30 mins late, no message to warn me. My mum has threw visits from carers a day, so people in and out of my "home". Carers often don't turn up and I end up having to do their job myself.

I now work part-time (3 days) and started an open uni online chemistry degree and I just want peace. I'm sick of being a carer and having to think of carers and my mum constantly. Setbacks are always happening and only I can deal with them. Mum's symptoms change every few months and get worse and harder to deal with (aggression, restlessness walking around the house at night and getting lost in her home, incontinence). Even though she was diagnosed in 2017, in 2021 she is in the late stages of the disease so can't much for herself (apart from moving) and I manage everything in her life.

I desperately need a break but at this point I need to stop being a carer to truly recover and be happy again. At the moment I can't even leave the house unless I bring my mum, or book a carer to stay with her in advance (from the unreliable care agency) so I'm always indoors.

I feel trapped. I'm only thirty but I feel like my youth has been stolen from me. I wanted to escape my toxic family before my mum's diagnosis and now I'm tethered to them. I just want to be free.

Sorry for the depressing post. I'm sure many can relate to something I've mentioned and I hope you're able to work things out in your life quickly if you're also struggling.

 

[ClaireeW]

Hi @CarM
I'm so sorry you are having such an awful time. I hope that there may be other younger carers on this forum to chip in with support and advice for you. I am in despair when I read the posts here of the appalling care that most carers receive, or indeed, don't receive. And that is, of course, in addition to the woeful care so many PWD receive from the local authority via those carers. In 2021, what a shocking indictment of our society.
What could we all do together to bring about change?

 

[Cazcaz]

Hi, I rarely use this forum (sadly) but would like to share my unfinished experience.

My mum was diagnosed at age 55 in 2017, I was 26. I live in London but it took a year of appointments including mri scans, an eeg scan, a lumbar puncture, several memory tests for her to get a diagnosis.

Because of her age, she couldn't get access to some "older people" services. I got PIP for her without the diagnosis but had to fight to get her on the right ESA even after the diagnosis. She know receives both.

I was working full time from 2017 to 2020 and it was hellish. My siblings didn't care. One of them was living with us and wouldn't help at all with anything regarding my mum or the home. I eventually got her to leave in 2019 because she was abusive to me. None of my siblings help still and it's one of the hardest things to think about because they know I'm struggling.

Because of my age, none of my peers understand just how much I'm going through or even what dementia is or why I'm not free to go out whenever they're free. Also, explaining to neighbours and her previous friends why she's acting a certain way is sometime difficult, intimidating and I feel vulnerable for both of us.

Getting help from adult social services has been one of the most stressful parts. I still haven't had a day's respite over a year after the care package started. Submitted a 3000 word complaint. Carers are regularly 20 mins to 1hr 30 mins late, no message to warn me. My mum has threw visits from carers a day, so people in and out of my "home". Carers often don't turn up and I end up having to do their job myself.

I now work part-time (3 days) and started an open uni online chemistry degree and I just want peace. I'm sick of being a carer and having to think of carers and my mum constantly. Setbacks are always happening and only I can deal with them. Mum's symptoms change every few months and get worse and harder to deal with (aggression, restlessness walking around the house at night and getting lost in her home, incontinence). Even though she was diagnosed in 2017, in 2021 she is in the late stages of the disease so can't much for herself (apart from moving) and I manage everything in her life.

I desperately need a break but at this point I need to stop being a carer to truly recover and be happy again. At the moment I can't even leave the house unless I bring my mum, or book a carer to stay with her in advance (from the unreliable care agency) so I'm always indoors.

I feel trapped. I'm only thirty but I feel like my youth has been stolen from me. I wanted to escape my toxic family before my mum's diagnosis and now I'm tethered to them. I just want to be free.

Sorry for the depressing post. I'm sure many can relate to something I've mentioned and I hope you're able to work things out in your life quickly if you're also struggling.

Hi

im so sorry you are in this position. I am just starting on this journey. Mum was diagnosed in February with Alzheimer’s. I’m in my forties so I know a little of what you mean about friends not understanding, wanting to be free etc.

I doubt Working the part time you do will give you NI contributions, Have you claimed carers credit? Are you living with mum in her own house? as you can also look into a reduction in counc tax etc. I know these things won’t help emotionally themselves, but any support has a good knock on effect to mood/mental attitude etc.

 

[Violet Jane]

It’s completely understandable that you feel as you do. It’s natural to feel resentful that at a time when you should be establishing yourself in a career and enjoying life as a young adult you - and you alone in your family - have taken on an intensive caring role.

Can I ask whether you live your mother and, if you do, whether you would be able to afford to move out? Does your mother own or rent her home? If she rents it is she a social housing tenant? If you can’t move out then it will obviously be much more difficult to step back. If your mother moved into a care home then you would need to be aware of what the implications would be for you in terms of your housing situation. You should not move out until you find out what your rights are, if any.

 

[Sunshine2*]

Hi, I rarely use this forum (sadly) but would like to share my unfinished experience.

My mum was diagnosed at age 55 in 2017, I was 26. I live in London but it took a year of appointments including mri scans, an eeg scan, a lumbar puncture, several memory tests for her to get a diagnosis.

Because of her age, she couldn't get access to some "older people" services. I got PIP for her without the diagnosis but had to fight to get her on the right ESA even after the diagnosis. She know receives both.

I was working full time from 2017 to 2020 and it was hellish. My siblings didn't care. One of them was living with us and wouldn't help at all with anything regarding my mum or the home. I eventually got her to leave in 2019 because she was abusive to me. None of my siblings help still and it's one of the hardest things to think about because they know I'm struggling.

Because of my age, none of my peers understand just how much I'm going through or even what dementia is or why I'm not free to go out whenever they're free. Also, explaining to neighbours and her previous friends why she's acting a certain way is sometime difficult, intimidating and I feel vulnerable for both of us.

Getting help from adult social services has been one of the most stressful parts. I still haven't had a day's respite over a year after the care package started. Submitted a 3000 word complaint. Carers are regularly 20 mins to 1hr 30 mins late, no message to warn me. My mum has threw visits from carers a day, so people in and out of my "home". Carers often don't turn up and I end up having to do their job myself.

I now work part-time (3 days) and started an open uni online chemistry degree and I just want peace. I'm sick of being a carer and having to think of carers and my mum constantly. Setbacks are always happening and only I can deal with them. Mum's symptoms change every few months and get worse and harder to deal with (aggression, restlessness walking around the house at night and getting lost in her home, incontinence). Even though she was diagnosed in 2017, in 2021 she is in the late stages of the disease so can't much for herself (apart from moving) and I manage everything in her life.

I desperately need a break but at this point I need to stop being a carer to truly recover and be happy again. At the moment I can't even leave the house unless I bring my mum, or book a carer to stay with her in advance (from the unreliable care agency) so I'm always indoors.

I feel trapped. I'm only thirty but I feel like my youth has been stolen from me. I wanted to escape my toxic family before my mum's diagnosis and now I'm tethered to them. I just want to be free.

Sorry for the depressing post. I'm sure many can relate to something I've mentioned and I hope you're able to work things out in your life quickly if you're also struggling.

Hello,
I am really sorry to hear what you are having to deal with and at such a young age too.
You are a wonderful, caring daughter, however, you shouldn’t have to be dealing with this all on your own.
You really need a 1-2 week respite break. Sleepless nights will leave you utterly exhausted.
Is there any way, a social worker can arrange some much needed rest for you?
I must admit I have always arranged respite care myself, as the local council were so slow with everything.
Have a look on:
www.carehome.co.uk
for some suggestions.
(My husband has been ill from age 27 with Aplastic Anaemia, a brain haemorrhage, epilepsy, MS for 26 years, a suspected mini-stroke, MS Dementia for the last 10 years. He is disabled and wakes frequently through the night and is only 59).
Have you had a ‘Best Interests’ meeting? This can often involve the GP, a social worker and any community nurses that attend to your Mum.
You really shouldn’t have to be doing all this on your own.
Best wishes.

 

[CarM]

Hi @CarM
I'm so sorry you are having such an awful time. I hope that there may be other younger carers on this forum to chip in with support and advice for you. I am in despair when I read the posts here of the appalling care that most carers receive, or indeed, don't receive. And that is, of course, in addition to the woeful care so many PWD receive from the local authority via those carers. In 2021, what a shocking indictment of our society.
What could we all do together to bring about change?

Hi Claire,
Thank you for your kind words. The local authority adult social care system is continuously failing so many families. It's a chronic systemic problem with no quick fix. Luckily I live with my mother but it worries me to know that many with dementia live alone and are probably being far more neglected than we would like to think...

 

[CarM]

Hi

im so sorry you are in this position. I am just starting on this journey. Mum was diagnosed in February with Alzheimer’s. I’m in my forties so I know a little of what you mean about friends not understanding, wanting to be free etc.

I doubt Working the part time you do will give you NI contributions, Have you claimed carers credit? Are you living with mum in her own house? as you can also look into a reduction in counc tax etc. I know these things won’t help emotionally themselves, but any support has a good knock on effect to mood/mental attitude etc.

I'm sorry to her about your mother's diagnosis. How is it going for you at the moment?

I don't think I'm entitled to carers credit as I do give NI contributions still. I'm also not entitled to carers allowance I believe because of how much I earn. Unfortunately my mother doesn't own the house but has rented since 1996. Also, we don't have a joint tenancy so she is the tenant and I'm an occupier on the tenancy agreement. We're not entitled to a council tax reduction due to my mother's savings being over a certain amount. Luckily, we are OK financially since my mother and I don't spend much and I work, she gets benefits.

That's true, I really appreciate you offering practical advice as I don't get much advice in general!

 

[CarM]

It’s completely understandable that you feel as you do. It’s natural to feel resentful that at a time when you should be establishing yourself in a career and enjoying life as a young adult you - and you alone in your family - have taken on an intensive caring role.

Can I ask whether you live your mother and, if you do, whether you would be able to afford to move out? Does your mother own or rent her home? If she rents it is she a social housing tenant? If you can’t move out then it will obviously be much more difficult to step back. If your mother moved into a care home then you would need to be aware of what the implications would be for you in terms of your housing situation. You should not move out until you find out what your rights are, if any.

Hi Violet, Thank you for validating my feelings. It really means a lot. I've often had carers sayings that there are others who have it difficult or more difficult and they would give me an example of a client. The resentment also isn't lessened when my siblings contact me with their problems are asking for money out of the blue...

Sure, I live with my mother but she didn't buy this council house. She's been renting it since 1996. That's true. Unfortunately, I'm only an occupier on the tenancy agreement, my mother is the tenant. If she moves into a care home, which is ideally what I want to do, I will be evicted by default. My mother can't assign the tenancy to me because she lacks mental capacity and the council are being incredible slow responding to me about going to the Court of Protection to assign me as the tenant. It's a long story....

 

[CarM]

Hello,
I am really sorry to hear what you are having to deal with and at such a young age too.
You are a wonderful, caring daughter, however, you shouldn’t have to be dealing with this all on your own.
You really need a 1-2 week respite break. Sleepless nights will leave you utterly exhausted.
Is there any way, a social worker can arrange some much needed rest for you?
I must admit I have always arranged respite care myself, as the local council were so slow with everything.
Have a look on:

for some suggestions.
(My husband has been ill from age 27 with Aplastic Anaemia, a brain haemorrhage, epilepsy, MS for 26 years, a suspected mini-stroke, MS Dementia for the last 10 years. He is disabled and wakes frequently through the night and is only 59).
Have you had a ‘Best Interests’ meeting? This can often involve the GP, a social worker and any community nurses that attend to your Mum.
You really shouldn’t have to be doing all this on your own.
Best wishes.

Thank you so much for your kind words. It means a lot.
I do. I am entitled to 4 weeks until March 2022, and two days day centre stays per week for my mother which was only granted last month but my social worker is away again so more delays. I am mentally exhausted.
I think I will just have to pay for respite and home carers as I'm so tired of waiting on adult social services. Thank you for the link.
I'm so sorry to hear about all the conditions your husband has and some for such a long time. I can't imagine how complicated it has been to get diagnoses, care and medication. I'm sure you're doing an incredible job looking after him and loving him but I hope you are getting the well-needed support you deserve.
I haven't at a best interests meeting and haven't been made aware of them so I will look into that. Thank you

 

[canary]

Hi @CarM
I dont know how much you are earning, but the limit for carers allowance is £128 a week. If you are only earning a bit above this, there is a little known loophole in that 50% of any money used to go to a private/occupational pension is disregarded. So if you are only earning a bit above £128, then open a private pension and pay into it just over double the amount above the threshold. eg . if you are earning £130 a week, then pay £4.10 into a private pension and bingo, DWP will consider that you are earning £127.95.

Also, it is not the council tax reduction you want, its the council tax disregard - which is not means tested. Your mum should be eligible if your mum has been diagnosed with dementia and she is receiving PIP/DLA (Attendance Allowance for people who are receiving state pension). Some Local Authorities want a GP to sign the form.

 

[Violet Jane]

CarM, if you think that the LA are being evasive or unreasonably slow about your housing situation then I would suggest that you go and get legal advice from an expert in housing law. As has been said above, the Council Tax disregard for Severe Mental Impairment is not means tested which means that it does not matter what the person’s income and assts are.

NB Attendance Allowance is only payable to people over 65.

 

[Cazcaz]

I'm sorry to her about your mother's diagnosis. How is it going for you at the moment?

I don't think I'm entitled to carers credit as I do give NI contributions still. I'm also not entitled to carers allowance I believe because of how much I earn. Unfortunately my mother doesn't own the house but has rented since 1996. Also, we don't have a joint tenancy so she is the tenant and I'm an occupier on the tenancy agreement. We're not entitled to a council tax reduction due to my mother's savings being over a certain amount. Luckily, we are OK financially since my mother and I don't spend much and I work, she gets benefits.

That's true, I really appreciate you offering practical advice as I don't get much advice in general!

It’s going ok for me at the moment. The future is scary but the present is calm.

You can get help with council tax which is not means tested, savings do not matter.
Where do you live? I am in Hampshire, it seems LAs are different in different areas.

Please do try to take an emotional (and physical if possible) break. It really does work.

 

[Violet Jane]

With reference to my last post (#11), Attendance Allowance is payable to people over state pension age.

 

[Nadya19]

Hi, I rarely use this forum (sadly) but would like to share my unfinished experience.

My mum was diagnosed at age 55 in 2017, I was 26. I live in London but it took a year of appointments including mri scans, an eeg scan, a lumbar puncture, several memory tests for her to get a diagnosis.

Because of her age, she couldn't get access to some "older people" services. I got PIP for her without the diagnosis but had to fight to get her on the right ESA even after the diagnosis. She know receives both.

I was working full time from 2017 to 2020 and it was hellish. My siblings didn't care. One of them was living with us and wouldn't help at all with anything regarding my mum or the home. I eventually got her to leave in 2019 because she was abusive to me. None of my siblings help still and it's one of the hardest things to think about because they know I'm struggling.

Because of my age, none of my peers understand just how much I'm going through or even what dementia is or why I'm not free to go out whenever they're free. Also, explaining to neighbours and her previous friends why she's acting a certain way is sometime difficult, intimidating and I feel vulnerable for both of us.

Getting help from adult social services has been one of the most stressful parts. I still haven't had a day's respite over a year after the care package started. Submitted a 3000 word complaint. Carers are regularly 20 mins to 1hr 30 mins late, no message to warn me. My mum has threw visits from carers a day, so people in and out of my "home". Carers often don't turn up and I end up having to do their job myself.

I now work part-time (3 days) and started an open uni online chemistry degree and I just want peace. I'm sick of being a carer and having to think of carers and my mum constantly. Setbacks are always happening and only I can deal with them. Mum's symptoms change every few months and get worse and harder to deal with (aggression, restlessness walking around the house at night and getting lost in her home, incontinence). Even though she was diagnosed in 2017, in 2021 she is in the late stages of the disease so can't much for herself (apart from moving) and I manage everything in her life.

I desperately need a break but at this point I need to stop being a carer to truly recover and be happy again. At the moment I can't even leave the house unless I bring my mum, or book a carer to stay with her in advance (from the unreliable care agency) so I'm always indoors.

I feel trapped. I'm only thirty but I feel like my youth has been stolen from me. I wanted to escape my toxic family before my mum's diagnosis and now I'm tethered to them. I just want to be free.

Sorry for the depressing post. I'm sure many can relate to something I've mentioned and I hope you're able to work things out in your life quickly if you're also struggling.

I'm in a similar situation . My mom was diagnosed at 54 . I had to move in qith my mom in April 2019 and move part time. I was 33 at the time. Now I'm 35 and also feel trapped indoors. If i leave it is eother with her or find a carer. I'm entitled to social worker 2 a week for a couple of hours but it is taking so long to arrange it. Started in June still no progress.

What i feel is the best at this point in my life is to find a reliable carer with whom i can leave my mom. Haven't had respite in more than a year so looking for such a person at the moment with whom i can leave mom at home for 2 weeks

 

[Cazcaz]

I hadn‘t realised until I joined here just how many people, like myself, who would normally be in full time work and/or starting a family of our own, are instead looking after a PWD living in the same house. @CarM @Nadya19 @wilko73 …….

It can be a lonely experience. But we aren’t alone in doing it.

 

[canary]

With reference to my last post (#11), Attendance Allowance is payable to people over state pension age.

You are quite right - I had overlooked the OPs mums age.
Ive edited my original post

 

[Nadya19]

Thank you so much for your kind words. It means a lot.
I do. I am entitled to 4 weeks until March 2022, and two days day centre stays per week for my mother which was only granted last month but my social worker is away again so more delays. I am mentally exhausted.
I think I will just have to pay for respite and home carers as I'm so tired of waiting on adult social services. Thank you for the link.
I'm so sorry to hear about all the conditions your husband has and some for such a long time. I can't imagine how complicated it has been to get diagnoses, care and medication. I'm sure you're doing an incredible job looking after him and loving him but I hope you are getting the well-needed support you deserve.
I haven't at a best interests meeting and haven't been made aware of them so I will look into that. Thank you

Same here. I'm entitled to social worker but its taking so long to arrange. I'm mentally exausted too to go through all of the hassle. So what I'm doing at the moment is taking extra working hours / arrange some side hustle (as thanks to corona i work online now from home it should be easier). And just arrange private paid good carer to come look after mom. And then when i have a little break i will have strength of going through the long bureaucracy of arranging the free social worker visits..

 

[CarM]

Hi @CarM
I dont know how much you are earning, but the limit for carers allowance is £128 a week. If you are only earning a bit above this, there is a little known loophole in that 50% of any money used to go to a private/occupational pension is disregarded. So if you are only earning a bit above £128, then open a private pension and pay into it just over double the amount above the threshold. eg . if you are earning £130 a week, then pay £4.10 into a private pension and bingo, DWP will consider that you are earning £127.95.

Also, it is not the council tax reduction you want, its the council tax disregard - which is not means tested. Your mum should be eligible if your mum has been diagnosed with dementia and she is receiving PIP/DLA (Attendance Allowance for people who are receiving state pension). Some Local Authorities want a GP to sign the form.

Yeah I earn quite a lot more than that per week at the moment but it's really good to know about the loophole. I'll make sure to mention it to anyone who may find it useful. It's also reminded me about the amount I'm contributing to my pension...

You're right! We did get the council tax exemption before but for some reason it became a council tax reduction. I think it depended on how many people are living with the "severely mentally ill" on whether it was a total exemption, 50% off etc. I'm going to reapply. Thanks for mentioning that! I hope you're well.

 

[CarM]

CarM, if you think that the LA are being evasive or unreasonably slow about your housing situation then I would suggest that you go and get legal advice from an expert in housing law. As has been said above, the Council Tax disregard for Severe Mental Impairment is not means tested which means that it does not matter what the person’s income and assts are.

Hi Violet,
They are, I've been asking the housing liaison officer since July about the process. This has been on my to-do list but need to prioritise it.
Thank you, I checked and my mum is entitled. She gets PIP, high rate for both daily living and mobility.
I hope you're well.

 

[CarM]

It’s going ok for me at the moment. The future is scary but the present is calm.

You can get help with council tax which is not means tested, savings do not matter.
Where do you live? I am in Hampshire, it seems LAs are different in different areas.

Please do try to take an emotional (and physical if possible) break. It really does work.

I completely understand. It will work out in the end, just need to get all the support you can get and regular breaks.
I live in London and our borough (Haringey) is underfunded so awful service is expected I suppose.
Thank you. My mum is finally going to a day centre tomorrow for the first time (I'm joining her). I really hope she doesn't become overwhelmed and enjoys being around other people. If it goes well, I'll get five hours respite, two days per week.