[Misc] Dementia / Alzheimers' support thread

[Bozza]

Given a lot of us are of a certain age and have parents, or in some cases partners, of a certain age, I thought I'd start a general support thread for those who care for those who are inflicted with these horrible mental diseases.

As is often the way with threads on this time capsule we call NSC, something you write today may help someone weeks, months or even years from now.

I'm going through a really tough time with my mum. I should probably have expected what is happening right now, although for some reason I didn't.

My mum currently absolutely hates me, despises me even. She's convinced I want to kill her to get her money and her house. She'll call me a ****, a bastard or a f***ing arsehole to anyone she can, and tell them some made-up story about what I'm trying to do.

She's even phoned the police to report me for trying to kill her.

I know it's not her, it's the disease, but it's still very difficult to deal with and, projecting forward, thinking that my mum could go to her grave believing I'm evil.

It's particularly tough because I am the main physical presence in my mum's life. Since my aunt, who lived with her, died suddenly and unexpectedly nearly three weeks ago, it's all on me. If I don't go and see my mum, then her only human contact will be her four daily carer visits. I do the laundry, I do the shopping and I prep her meals etc.

She thinks I'm trying to put her in a care home, when the reality is if it wasn't for me she'd almost certainly be in one already. I'm actually trying my hardest to keep her living semi-independently in her own home (although she doesn't believe it is her own home) for as long as. possible.

So, daily, I'm torn. If I don't spend much time with her I feel guilty as I know she won't have anyone else, but when I do go there, I know she thinks I'm trying to kill her in some way or another.

I say I should have expected it, because for her quite long hospital stint. where I spent all-day every-day at her bedside, she would tell me it was the last time I would see her every time I had to leave. She thought the nurses were trying to kill her. "You'll find me dead on the floor tomorrow" was the cheery goodbye I'd always get. When she came home, she was very paranoid about my aunt/her sister, believing her possessions were being stolen. She didn't seem to think my aunt was a nefarious murderer, however.

The irony is she doesn't have much money at all - although she has more as a result of asking me to help her manage it before dementia set in - and sooner or later she is likely to require moving to a care home, and her house will be sold to pay for that care.

It's a cruel disease.

 

[LamieRobertson]

First advice to everyone imo is to get a power of attorney in place covering health and finances …be proactive

Ps to Bozza …I hope you are getting opportunities to talk to people off of NSC …you need supporting as well!

 

[Thunder Bolt]

First advice to everyone imo is to get a power of attorney in place covering health and finances …be proactive

I agree. Mine was sorted out last year.

My mother left me when she divorced my Dad, so to my relief when she developed dementia, my half brother was next of kin. I helped as much as I could but I had nastiness from her as well.
when she went into a home, I wouldn’t visit her on my own, taking either my husband or my sister in law with me.

@Bozza there are helplines for counselling as the mental toll on you can be unbearable. You may feel guilty but sometimes getting your Mum into a secure home is the best option for her and for you, especially as your Aunt has now passed.
Only you will know when it is the right time but don’t feel guilty. Your Mum has a horrible illness that has taken over.

 

[lost in london]

Given a lot of us are of a certain age and have parents, or in some cases partners, of a certain age, I thought I'd start a general support thread for those who care for those who are inflicted with these horrible mental diseases.

As is often the way with threads on this time capsule we call NSC, something you write today may help someone weeks, months or even years from now.

I'm going through a really tough time with my mum. I should probably have expected what is happening right now, although for some reason I didn't.

My mum currently absolutely hates me, despises me even. She's convinced I want to kill her to get her money and her house. She'll call me a ****, a bastard or a f***ing arsehole to anyone she can, and tell them some made-up story about what I'm trying to do.

She's even phoned the police to report me for trying to kill her.

I know it's not her, it's the disease, but it's still very difficult to deal with and, projecting forward, thinking that my mum could go to her grave believing I'm evil.

It's particularly tough because I am the main physical presence in my mum's life. Since my aunt, who lived with her, died suddenly and unexpectedly nearly three weeks ago, it's all on me. If I don't go and see my mum, then her only human contact will be her four daily carer visits. I do the laundry, I do the shopping and I prep her meals etc.

She thinks I'm trying to put her in a care home, when the reality is if it wasn't for me she'd almost certainly be in one already. I'm actually trying my hardest to keep her living semi-independently in her own home (although she doesn't believe it is her own home) for as long as. possible.

So, daily, I'm torn. If I don't spend much time with her I feel guilty as I know she won't have anyone else, but when I do go there, I know she thinks I'm trying to kill her in some way or another.

I say I should have expected it, because for her quite long hospital stint. where I spent all-day every-day at her bedside, she would tell me it was the last time I would see her every time I had to leave. She thought the nurses were trying to kill her. "You'll find me dead on the floor tomorrow" was the cheery goodbye I'd always get. When she came home, she was very paranoid about my aunt/her sister, believing her possessions were being stolen. She didn't seem to think my aunt was a nefarious murderer, however.

The irony is she doesn't have much money at all - although she has more as a result of asking me to help her manage it before dementia set in - and sooner or later she is likely to require moving to a care home, and her house will be sold to pay for that care.

It's a cruel disease.

That sounds awful. A nightmarish situation, I imagine made worse by not knowing where it's going next or how long it will last?

 

[METALMICKY]

If you sadly get to the stage where your loved one needs to go into care be sure to check carefully what services are offered. Not all dementia care homes clearly state whether they provide nursing dementia care. Ideally you don't want to be having to move them when they need nursing care.

From my experience with my mother in law, be wary when looking around homes that look luxurious and hotel like. Those places quite often wont provide the quality of care and are really just looking for little old ladies who are a bit forgetful and easy to handle. Unfortunately, my mother in law has Lewey Bodies dementia which means she can get a bit aggressive. When we were upfront about this many of the ' fancy palaces ' weren't interested.

 

[MJsGhost]

You are doing an amazing thing Bozza. Your mum is unlikely to ever thank you for it and it must be a huge kick in the swingers when she treats you like that (but as you say, it's not really her).

My (late) grandad had over 30 years of caring for my gran who suffered from early-onset dementia. She'd scream blue murder at times when they were out - kicking at him, shouting that he was kidnapping and hurting her. People would intervene, the police were occasionally called... He looked after her for all but the last 18 months when she was a danger to herself.

The disease is a c**t, but the people looking after those affected are saints.

You have my sympathy and admiration.

There's a donation page on here if anyone feels moved to support Alzheimers UK: https://www.alzheimers.org.uk/

 

[dazzer6666]

You are doing an amazing thing Bozza. Your mum is unlikely to ever thank you for it and it must be a huge kick in the swingers when she treats you like that (but as you say, it's not really her).

My (late) grandad had over 30 years of caring for my gran who suffered from early-onset dementia. She'd scream blue murder at times when they were out - kicking at him, shouting that he was kidnapping and hurting her. People would intervene, the police were occasionally called... He looked after her for all but the last 18 months when she was a danger to herself.

The disease is a c**t, but the people looking after those affected are saints.

You have my sympathy and admiration.

There's a donation page on here if anyone feels moved to support Alzheimers UK: https://www.alzheimers.org.uk/

All of this.

She doesn’t hate you, she does know what she’s saying/doing and you’re doing all you can (and more).

 

[Nobby Cybergoat]

I'm only mentioning my experience, because for anyone who's parent or loved one is diagnosed, it's easy to hear some of the horrible examples which others like Bozza have and immediately despair.

My dad is 84 and has had Alzheimers for 5 years. The medication he is on is immense. It's working for him. He knows me. He's happy to see me. He tells anyone he speaks to how happy and how lucky he is. He repeats himself a lot, but we'll take that all day long.

Just remember that these brain diseases can affect people very differently, the symptoms will vary massively patient, by patient. If you have a loved one who is getting forgetful, my biggest advice get checked out early, get on the meds early. The horror stories which we've all heard about may come to pass. But nothing is inevitable here.

Bozza, yes definitely time to be talking and getting as much support as possible.

 

[Han Solo]

Been lucky enough to never face a dementia situation. Terrible though. A human without its memories is not the same human. If I were you Id put mum in a home. Mainly for my own sake but also because thats what my healthy mum would have told me to do when reflecting on a hypothetical future scenario. But we're all different and so are our mothers : )

I have a friend researching and working with music therapy for dementia patients. Apparently music memory usually remains intact long after everything else is gone so playing music, particularly things they listened to and liked as kids, often leads to less agitation and lower heart rate. It can be worth trying putting something on while visiting.

 

[Uncle Spielberg]

Keep strong Bozza you are doing so well for your Mum. Never forget that. My Mum went through this over 5 years. It really is a wicked disease. PM me if you need any support

 

[Chicken Run]

I’m very sorry to hear this @Bozza, not much i can say will make it better but i genuinely will have you in my thoughts and best wishes

 

[LamieRobertson]

I agree. Mine was sorted out last year.

My mother left me when she divorced my Dad, so to my relief when she developed dementia, my half brother was next of kin. I helped as much as I could but I had nastiness from her as well.
when she went into a home, I wouldn’t visit her on my own, taking either my husband or my sister in law with me.

@Bozza there are helplines for counselling as the mental toll on you can be unbearable. You may feel guilty but sometimes getting your Mum into a secure home is the best option for her and for you, especially as your Aunt has now passed.
Only you will know when it is the right time but don’t feel guilty. Your Mum has a horrible illness that has taken over.

Even if it’s just for respite care …Also has the benefit of trying out a home before committing long term

 

[Thunder Bolt]

Even if it’s just for respite care …Aldo has the benefit of trying out a home before committing long term

Yes, respite care is essential if Bozza's Mum is continue to live at home. Bozza, if you get ill from the strain and stress, you're not going to be able to help anyone.

I mean this kindly, even if the way I type it, is clumsy.

 

[southstandandy]

Please be aware - if you have a parent who suffers from Dementia, Alzheimers etc they can get Council Tax relief up to 100% which can help with the monthly finances.

My father who was diagnosed with dementia 5 years ago (not fully blown but diagnosed nonetheless) has to now pay NO council tax as exempt as he is the only adult living in his bungalow (even though I take care of him much of the time each day).

Conversely if 2 adults live with 1 of those with the above conditions, then they qualify for the single persons discount.

I saw this on Martin Lewis, made a retrospective application to Adur Council and my dad got 3 years back dated payments (totaling nearly £5k) since the date of his diagnosis, and now has to pay no Council Tax, which really helps him pay for some private care he has in.

 

[portslade seagull]

I agree. Mine was sorted out last year.

My mother left me when she divorced my Dad, so to my relief when she developed dementia, my half brother was next of kin. I helped as much as I could but I had nastiness from her as well.
when she went into a home, I wouldn’t visit her on my own, taking either my husband or my sister in law with me.

@Bozza there are helplines for counselling as the mental toll on you can be unbearable. You may feel guilty but sometimes getting your Mum into a secure home is the best option for her and for you, especially as your Aunt has now passed.
Only you will know when it is the right time but don’t feel guilty. Your Mum has a horrible illness that has taken over.

Agree withn TB here, be careful with your own wellbeing as it will wear you down. Maybe the time is approaching although you fight against it to seek a suitable care home for your mum. I feel for you Bozza as it's a hard decision

 

[Cheshire Cat]

Given a lot of us are of a certain age and have parents, or in some cases partners, of a certain age, I thought I'd start a general support thread for those who care for those who are inflicted with these horrible mental diseases.

As is often the way with threads on this time capsule we call NSC, something you write today may help someone weeks, months or even years from now.

I'm going through a really tough time with my mum. I should probably have expected what is happening right now, although for some reason I didn't.

My mum currently absolutely hates me, despises me even. She's convinced I want to kill her to get her money and her house. She'll call me a ****, a bastard or a f***ing arsehole to anyone she can, and tell them some made-up story about what I'm trying to do.

She's even phoned the police to report me for trying to kill her.

I know it's not her, it's the disease, but it's still very difficult to deal with and, projecting forward, thinking that my mum could go to her grave believing I'm evil.

It's particularly tough because I am the main physical presence in my mum's life. Since my aunt, who lived with her, died suddenly and unexpectedly nearly three weeks ago, it's all on me. If I don't go and see my mum, then her only human contact will be her four daily carer visits. I do the laundry, I do the shopping and I prep her meals etc.

She thinks I'm trying to put her in a care home, when the reality is if it wasn't for me she'd almost certainly be in one already. I'm actually trying my hardest to keep her living semi-independently in her own home (although she doesn't believe it is her own home) for as long as. possible.

So, daily, I'm torn. If I don't spend much time with her I feel guilty as I know she won't have anyone else, but when I do go there, I know she thinks I'm trying to kill her in some way or another.

I say I should have expected it, because for her quite long hospital stint. where I spent all-day every-day at her bedside, she would tell me it was the last time I would see her every time I had to leave. She thought the nurses were trying to kill her. "You'll find me dead on the floor tomorrow" was the cheery goodbye I'd always get. When she came home, she was very paranoid about my aunt/her sister, believing her possessions were being stolen. She didn't seem to think my aunt was a nefarious murderer, however.

The irony is she doesn't have much money at all - although she has more as a result of asking me to help her manage it before dementia set in - and sooner or later she is likely to require moving to a care home, and her house will be sold to pay for that care.

It's a cruel disease.

I fear this s something you have to get used. The only thing you can try to do is not take it personally, and convince yourself that it is the disease talking, not your mum - which is far easier said than done (all that "sticks and stones" crap isn't true).

Ms Cat was psychotic, heard voices and had endless delusions for a long time until the drugs started to have an effect. There were strange people living in the car, in wardrobes, under the stairs, all over. There were people down the road spying on her. The number of prostitutes she had seen me having sex with was exhaustingly unreal. The whole house stank of people having sex everywhere. She kept threatening to call the police for various unspecified things I was supposed to have done (although by then I think she had forgotten how to use a phone). She kept talking to her reflection in windows, convinced there was somebody else there. She kept hiding things, especially cutlery. She was convinced that she didn't have a problem, but everything was somebody else's fault and it was a great big conspiracy against her. In the end I slept in a separate room with the door locked and made sure all the keys were hidden because I wasn't convinced I was safe from her.

Don't expect any gratitude or acknowledgment of anything you do, although you could regard all the abuse as a complement since she is still aware of something, however twisted that awareness has become.

Also don't bother trying to reason with her or explain that her reality is not real. She won't believe you and it will probably make her even more convinced of the wicked plot everyone else is involved with. In her own mind, she is probably the one sane person in a mad world.

You may also find that the care home decision, if and when it happens, although awful, guilt ridden and traumatic for all concerned, might be the best thing you do. Even if your mum hates the home and everything in it, cries that she wants to go home, accuses you of everything under the sun etc etc, at least she should be warm, fed, clothed, clean and safe (although at the prices they charge, booking her on a permanent round the world luxury cruise for life would be cheaper), and somebody else is dealing with the issues.

 

[Harry Wilson's tackle]

Given a lot of us are of a certain age and have parents, or in some cases partners, of a certain age, I thought I'd start a general support thread for those who care for those who are inflicted with these horrible mental diseases.

As is often the way with threads on this time capsule we call NSC, something you write today may help someone weeks, months or even years from now.

I'm going through a really tough time with my mum. I should probably have expected what is happening right now, although for some reason I didn't.

My mum currently absolutely hates me, despises me even. She's convinced I want to kill her to get her money and her house. She'll call me a ****, a bastard or a f***ing arsehole to anyone she can, and tell them some made-up story about what I'm trying to do.

She's even phoned the police to report me for trying to kill her.

I know it's not her, it's the disease, but it's still very difficult to deal with and, projecting forward, thinking that my mum could go to her grave believing I'm evil.

It's particularly tough because I am the main physical presence in my mum's life. Since my aunt, who lived with her, died suddenly and unexpectedly nearly three weeks ago, it's all on me. If I don't go and see my mum, then her only human contact will be her four daily carer visits. I do the laundry, I do the shopping and I prep her meals etc.

She thinks I'm trying to put her in a care home, when the reality is if it wasn't for me she'd almost certainly be in one already. I'm actually trying my hardest to keep her living semi-independently in her own home (although she doesn't believe it is her own home) for as long as. possible.

So, daily, I'm torn. If I don't spend much time with her I feel guilty as I know she won't have anyone else, but when I do go there, I know she thinks I'm trying to kill her in some way or another.

I say I should have expected it, because for her quite long hospital stint. where I spent all-day every-day at her bedside, she would tell me it was the last time I would see her every time I had to leave. She thought the nurses were trying to kill her. "You'll find me dead on the floor tomorrow" was the cheery goodbye I'd always get. When she came home, she was very paranoid about my aunt/her sister, believing her possessions were being stolen. She didn't seem to think my aunt was a nefarious murderer, however.

The irony is she doesn't have much money at all - although she has more as a result of asking me to help her manage it before dementia set in - and sooner or later she is likely to require moving to a care home, and her house will be sold to pay for that care.

It's a cruel disease.

Well done for starting the thread. And thanks for sharing your situation. The info, and even just the sense of camaraderie, will be really helpful.
To you as well as others, hopefully.
I haven't forgotten what we spoke about when I saw you recently and will revisit when I have recovered from my latest ailments.
All the best. M.

 

[NS Herald]

I've been through exactly what you are having to endure and how horrible it is for you mentally, emotionally and physically.

My blood pressure went through the roof and caused me all sorts of issues with guilt, anxiety and stress which took a long time to resolve.

The Alzheimer's Society were extremely helpful both for myself and my Aunt who called me every name under the sun and threatening me with legal action so worth giving them a call.

As hard as it is try not to take it personally as she is living in another world completely divorced from reality.

 

[southstandandy]

I also pop along once a month to a carer's support group in Lancing (the parish hall in South Lancing - 1st Tues of each month) and not only can you talk and meet people in a similar position, but they have 2 or 3 staff come in to offer advice and support from mental health charities over a coffee. 1.45pm to 3.45pm. Something like this depending upon where you live might be really useful as you'll meet and speak to people in a similar position, and it might help for tips and ideas.

 

[BrightonCottager]

Well done @Bozza for starting the thread. For anyone on NSC new to the subject, there's lots of advice on this thread: https://nortr3nixy.nimpr.uk/threads/help-with-possible-dementia.397004/

My 3 top tips are
1 do the POA
2 use the Alzheimers Society website especially the forum &
3 get support for yourself.

I'm currently sitting with my mum in the RSCH who has advanced dementia and a fractured pelvis since falling over in her care home on NYE. She sometimes doesnt know who I am (I showed her my work id badge and she asked how I got it!) and a number of times thought she wasn't going to survive the night (especially the first 5 in A&E). Now her care home says she needs to be reassessed before she can go back, ffs.