[Misc] Dementia / Alzheimers' support thread

[Oh_aye]

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 absolutely hard core man. Awful. I don't have any direct experience of dementia but, the only thing I would say having read your post, and having a mother myself who has had a personality disorder and schizophrenic disorder all her (and my) life. I know something about the emotional toll of having to face dealing with a parent who, through illness, and without meaning to, can be extremely destructive to your wellbeing.

Don't try and do it alone or be 'the strong one'. Its not possible and its unbearable. Personally I go and see a therapist to make sure I have everything in perspective and am looking after myself too. Maybe a carers group or something as someone else suggested? I don't know about your circumstances but I also have a young family and other people to look after. You do need to take care of yourself, and be able to prioritise. I personally find that really hard without talking to someone else who's not directly involved.

its such a curse that the people you love the most are the ones that can cause you the most emotional pain, even if they don't mean it. There is only so much rationalising and being intellectually aware of her condition can help. Emotionally it still hurts.

My own issue at the moment, perhaps more close to this thread, is that my dad had a stroke about 15 years ago. He has been on the cognitive decline and is now a bit problematic. He went back to the doctors a while ago who told him he most likely had a number of follow on mini strokes and has brain damage, and there was a possibility he had Parkinsons and should keep coming back for tests (he didnt). I think its getting worse and it really resembles parkinsons (which his dad had when he died). His hands shake, he cant hold pens or tea, and he can't remember stuff. I go to the match with him and he understands everything while he's there but won't remember one week to the next, can't remember any players. I can see his eyes go blank and he starts to panic over basic questions and he can't follow threads of basic information or conversational exchanges.

Anyway, my bigger issue with him, is he's a total stubborn bastard. He won't go back to the doctors. Won't get any more help. He just thinks there's nothing you can do except slowly deteriorate in his own juices. If me or my sister suggest going or getting help he gets visibly angry and stroppy. He's also limping badly now and is struggling to walk as his hip is giving up, but I genuinely reckon he'll let his leg fall off before doing anything about it. Selfishly I want him to be proactive about these things because between him and my insane but also increasingly aged and physically decrepit mum they are storing up a ticking time bomb for us to deal with. They have no money or resources.

I'd appreciate any advice from anyone who's found a way to engage with and manage completely reticent parents with cognitive issues and get them to embrace help and support from professionals while they still can.

All the best everyone.

 

[Cheshire Cat]

That sounds absolutely hard core man. Awful. I don't have any direct experience of dementia but, the only thing I would say having read your post, and having a mother myself who has had a personality disorder and schizophrenic disorder all her (and my) life. I know something about the emotional toll of having to face dealing with a parent who, through illness, and without meaning to, can be extremely destructive to your wellbeing.

Don't try and do it alone or be 'the strong one'. Its not possible and its unbearable. Personally I go and see a therapist to make sure I have everything in perspective and am looking after myself too. Maybe a carers group or something as someone else suggested? I don't know about your circumstances but I also have a young family and other people to look after. You do need to take care of yourself, and be able to prioritise. I personally find that really hard without talking to someone else who's not directly involved.

its such a curse that the people you love the most are the ones that can cause you the most emotional pain, even if they don't mean it. There is only so much rationalising and being intellectually aware of her condition can help. Emotionally it still hurts.

My own issue at the moment, perhaps more close to this thread, is that my dad had a stroke about 15 years ago. He has been on the cognitive decline and is now a bit problematic. He went back to the doctors a while ago who told him he most likely had a number of follow on mini strokes and has brain damage, and there was a possibility he had Parkinsons and should keep coming back for tests (he didnt). I think its getting worse and it really resembles parkinsons (which his dad had when he died). His hands shake, he cant hold pens or tea, and he can't remember stuff. I go to the match with him and he understands everything while he's there but won't remember one week to the next, can't remember any players. I can see his eyes go blank and he starts to panic over basic questions and he can't follow threads of basic information or conversational exchanges.

Anyway, my bigger issue with him, is he's a total stubborn bastard. He won't go back to the doctors. Won't get any more help. He just thinks there's nothing you can do except slowly deteriorate in his own juices. If me or my sister suggest going or getting help he gets visibly angry and stroppy. He's also limping badly now and is struggling to walk as his hip is giving up, but I genuinely reckon he'll let his leg fall off before doing anything about it. Selfishly I want him to be proactive about these things because between him and my insane but also increasingly aged and physically decrepit mum they are storing up a ticking time bomb for us to deal with. They have no money or resources.

I'd appreciate any advice from anyone who's found a way to engage with and manage completely reticent parents with cognitive issues and get them to embrace help and support from professionals while they still can.

All the best everyone.

I ended up going to the GP to talk about Ms Cat and her behaviour. The GP took it vary seriously (I thought I would be ignored because I was talking about somebody else, or would fall foul of some data protection / privacy rule, but the GP was very attentive), made a spurious appointment with her about an unrelated issue to ensure she came along and essentially diagnosed her then, referring her to the local hospital for scans and more specific tests.I made sure I was at every appointment, welcome or not. However if your relatives refuse to co-operate there isn't very much you can do on your own. You could talk to the GP and social services, and see what they suggest.

How to offer help to someone with dementia who doesn’t want it

Do you know a person with dementia or memory problems who is refusing offers of help? Here are a few ways to support someone who may be in denial or lack insight about their situation.

www.alzheimers.org.uk

 

[um bongo molongo]

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.

Can I ask for some more details on this please? My dad has Alzheimer’s though my mum is actually worse but is on a 12 month (!) waiting list to be diagnosed. I’ve managed to get them to agree to a carer 2 hours a week which isn’t enough and even that was like pulling teeth because they hate spending money. If there was a saving to use to pay for it, that would help immensely

 

[The Clown of Pevensey Bay]

My F-in-L (73ish) has recently had a diagnosis of temporal lobe dementia, but the doctor said he might have been affected for between 10 and 20 years. He is a mostly-retired director of a small company and the only major change the diagnosis has made is that he can no longer drive. His behaviour has changed a lot, though: he is now very anxious about money and appointments -- repeatedly calling me to ask him if I can drive him to his usual swimming club next week, for example. He also says startlingly inappropriate things to people he meets, asking women if they're pregnant, etc.

One of the other effects of this new-found lack of filter is that he has confessed to a few sexual indiscretions in 1971, at the start of his relationship with my M-in-L. She can get massively angry about this and about his situation generally. They can sometimes be hard to deal with.

I've no idea what the future holds for them or how quickly he will deteriorate. We live much closer to them than Mrs COPB's siblings do, and I worry our lives are about to be overcome with having to support them.

 

[jcdenton08]

My Mum is on the memory pathway and it looks like things are heading towards a diagnosis, so I really do fear for the future. Trying to make the most of every minute together.

Bozza, I’m really sorry for what you’re going through, it must be heartbreaking and I can’t even begin to imagine the pain and stress this is causing you. I hope you’re getting real life support and understand you’re going above and beyond what anyone could reasonably expect from you.

It’s a terrible disease.

 

[The Mole]

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!

Totally agree - but do it as early as possible- mine is already in place. My sister arranged this for my parents before dementia had taken hold - it is so much easier to obtain then. I managed their finances once we needed to get carers in which took one burden off them.

finally, I feel for you all going through this. It is tough but the pressures do ease if you find a good care home when they need it. Remember to care for the carers as well.

 

[Durlston]

My father suffered a stroke nearly three years ago but has made an amazing recovery. It has changed him in a way that he struggles with more than two syllable words and lost so much of his vocabulary which is a great shame. He used to be such an articulate man and very happy-go-lucky but now he tends to have either good or bad days which is completely understandable. I have to finish his sentences sometimes and he often forgets the current football managers in the Premier League for example (long-term). He is very much a morning and afternoon person so unfortunately I so often see him when he's become tired and extremely flat. I've noticed that if we have a big family get together, then by the time he feels it should be over and he wants to get back to normality he can be occasionally rude and straight to the point to "Well, time's going on" and that's the cue to leave him in peace. He doesn't drive now so getting out and about has become rarer and he's missing that everyday chit chat with friends or strangers. Throughout it all though he appreciates that he has a wife and family that loves and cares very deeply for him so he's still grateful for that.

My mother still leads an active life and drives (only around Haywards Heath now) with responsibilities that she seems to take in her stride so she enjoys that and caring for my father. She gets anxious about things at times (like me) that can often overwhelm her but they're both doing extremely well for their early-eighties.

I'm just so thankful that dementia or Alzheimer's doesn't or never has run in our family. Reading through this thread it has been an emotionally tough path for some of NSC's finest. I sincerely send my best wishes to everyone on here.

 

[Scoffers]

It is a cruel disease for sure. I've been going through something similar with both my father in law and my own dad (both mum's passed away).

My FiL, he was diagnosed with Alzheimer's, is just about staying at home due to support from his daughter and I doing everything for him, but we both get similar volley's of abuse and rudeness from time to time, but it is mostly ok

As for my Dad, well he's another level, he was diagnosed with Vascular dementia and Alzheimer's, so called mixed dementia (didn't even know that was a thing!). He's been in a care home for over 2 years now, but the year before he went in was abject misery for everyone involved in his life as he was paranoid and physically violent to anyone and everyone. He put 2 members of the care home in hospital and got sectioned under the MH act.

I've learned how to cope, as had the care home, sometimes he recognises me, some times he doesn't, he talks about my mum in the present tense "she's gone shopping, she'll be back later", he talks about his parents as if they were still alive too, I've learned to change the subject, it seems to be the most effective way to manage him. The swearing and aggressive behaviour is still there but he is wheelchair bound now, so is more manageable.

I used to feel guilty if I don't see him every day, but then I had a mental breakdown which made me realise, after counselling, that I had to look after my own mental health first.

It's very difficult to deal with, but it seems like more and more of us are having to care for someone with some sort of mental health issue these days.

There is no easy way through this, just need as much support and understanding from friends as well as the professionals.

 

[essbee1]

My advice having a Mum who has the condition: you're only able to do the best for her if you ensure that you look after
*yourself*.

I often hear the phrase "we lost out Mum a long time ago" to refer to the effect of dementia even though she's still alive. Not
sure I agree with this. It's not her fault bless her. She's still the same person, just different. I think (and this is going to sound
very odd) that I will be more upset when she goes (dread the day) than if she didn't have the condition. Because of the cruel
way the disease has robbed here of x amount of years of her life.

 

[Billy Seagull]

Dementia is such a horrible disease. My mother in law passed away yesterday afternoon having being diagnosed with dementia about ten years ago.

From our experience I'd say the Power Of Attorney is very very important to do early on as it makes things so much easier down the line in regard to finances. My wife and her sister got this sorted out in the early days thanks to a very helpful GP.

Keep on at Social Care when you need help, they need nagging and nagging again. Don't give up.

MIL had carers coming in for the last few years but they really weren't upto the job. We knew this as we had a camera in her assisted living flat and whilst there were some good ones others were awful. A few times we had calls from the care company saying MIL wasn't in yet we could see her sitting in her chair but the carer just couldn't be arsed and told the provider she wasn't in. I'd say it was fraud but it is also very disrespectful given the needs of the patient.

Since a fall in March MIL struggled greatly and wasn't drinking enough fluids making her dizzy when standing up too quickly. Numerous trips to hospital followed including 4 week stay in which we concluded she needed a care home which she really didn't want to go to but there was no way she could keep living at home without permanent supervision. My wife said it's the hardest decision she had to make.

Unfortunately, whilst she thrived in the care home, she still wasn't drinking enough and ended up falling over a few times, the last of which ended in hospital with sepsis. She somehow came through this after six weeks in hospital. At one stage my wife and sister visited a funeral company to discuss the imminent funeral. She somehow rallied and a lazarus like improvement meant she was back in the land of the living but the care home said she wouldn't be able to go back there as she now needed nursing home. To be honest we didn't know the difference.

After the six week stay in hospital she went into a nursing home and again she thrived for a few months but kept getting UTIs which were sorted by antibiotics. The nursing home was a different class of care than the care home and the staff are amazing. However last week, she had another UTI to which the antibiotics couldn't shift. She passed away less than an hour after we visited which was I'm sure a relief to her and whilst very sad, it is a relief for the family too as we could see she was suffering. She would have been 90 this year.

It is a horrible disease and my best wishes to all the people on this thread who are caring for loved ones.

If anyone wants to DM me please feel free and I'll answer as soon as I can over the weekend.

 

[Cheshire Cat]

Can I ask for some more details on this please? My dad has Alzheimer’s though my mum is actually worse but is on a 12 month (!) waiting list to be diagnosed. I’ve managed to get them to agree to a carer 2 hours a week which isn’t enough and even that was like pulling teeth because they hate spending money. If there was a saving to use to pay for it, that would help immensely

You need to speak with the local council

Council Tax discounts for people with severe mental impairments

If you or a member of your household have a severe mental impairment find out if you can get a discount on your Council Tax bill and how to apply for it.

www.brighton-hove.gov.uk

 

[southstandandy]

Can I ask for some more details on this please? My dad has Alzheimer’s though my mum is actually worse but is on a 12 month (!) waiting list to be diagnosed. I’ve managed to get them to agree to a carer 2 hours a week which isn’t enough and even that was like pulling teeth because they hate spending money. If there was a saving to use to pay for it, that would help immensely

If your dad has a formal diagnosis then if you apply to the Council he will be disregarded for Council Tax and your mum would then be classified as the only 1 person eligible and therefore get 25% discount. If your mum gets diagnosed too, then by applying to the Council they would be completely exempt. Also remember if you apply, at least to get the 25% off getting your dad disregarded, remember to ask for a back dated discount to the date of diagnosis. They may well get a significant refund.

I applied via Adur Council - links easily found. Depending upon which Council they come under you should be able to apply on line quite easily.

 

[aolstudios]

So sorry, @Bozza . This sounds truly awful. My Mum was often frustrated & angry during dementia. Spiteful sometimes. It was crushing & very hard not to respond at times. This behaviour is separate from the mum you knew & not about you. All you can do is try & compartmentalize in your head.
Again, so sorry

 

[um bongo molongo]

If your dad has a formal diagnosis then if you apply to the Council he will be disregarded for Council Tax and your mum would then be classified as the only 1 person eligible and therefore get 25% discount. If your mum gets diagnosed too, then by applying to the Council they would be completely exempt. Also remember if you apply, at least to get the 25% off getting your dad disregarded, remember to ask for a back dated discount to the date of diagnosis. They may well get a significant refund.

I applied via Adur Council - links easily found. Depending upon which Council they come under you should be able to apply on line quite easily.

Brilliant, thanks. They’d be Brighton & Hove, will do some digging.

 

[Thunder Bolt]

Dementia is such a horrible disease. My mother in law passed away yesterday afternoon having being diagnosed with dementia about ten years ago.

From our experience I'd say the Power Of Attorney is very very important to do early on as it makes things so much easier down the line in regard to finances. My wife and her sister got this sorted out in the early days thanks to a very helpful GP.

Keep on at Social Care when you need help, they need nagging and nagging again. Don't give up.

MIL had carers coming in for the last few years but they really weren't upto the job. We knew this as we had a camera in her assisted living flat and whilst there were some good ones others were awful. A few times we had calls from the care company saying MIL wasn't in yet we could see her sitting in her chair but the carer just couldn't be arsed and told the provider she wasn't in. I'd say it was fraud but it is also very disrespectful given the needs of the patient.

Since a fall in March MIL struggled greatly and wasn't drinking enough fluids making her dizzy when standing up too quickly. Numerous trips to hospital followed including 4 week stay in which we concluded she needed a care home which she really didn't want to go to but there was no way she could keep living at home without permanent supervision. My wife said it's the hardest decision she had to make.

Unfortunately, whilst she thrived in the care home, she still wasn't drinking enough and ended up falling over a few times, the last of which ended in hospital with sepsis. She somehow came through this after six weeks in hospital. At one stage my wife and sister visited a funeral company to discuss the imminent funeral. She somehow rallied and a lazarus like improvement meant she was back in the land of the living but the care home said she wouldn't be able to go back there as she now needed nursing home. To be honest we didn't know the difference.

After the six week stay in hospital she went into a nursing home and again she thrived for a few months but kept getting UTIs which were sorted by antibiotics. The nursing home was a different class of care than the care home and the staff are amazing. However last week, she had another UTI to which the antibiotics couldn't shift. She passed away less than an hour after we visited which was I'm sure a relief to her and whilst very sad, it is a relief for the family too as we could see she was suffering. She would have been 90 this year.

It is a horrible disease and my best wishes to all the people on this thread who are caring for loved ones.

If anyone wants to DM me please feel free and I'll answer as soon as I can over the weekend.

UTIs are very common in dementia patients and exacerbate the symptoms. As you say, the person often forgets to drink adequate fluids. My MIL was like that. She also got sepsis but finally responded to drugs taking over 6 weeks to be discharged from hospital.
Two years later, the sepsis just took hold and she passed away peacefully.

 

[Beach Hut]

I feel for you Bozza, my parents lived into their 90s but fortunately never suffered dementia issues but as they lived in Pershore a huge effort of behalf of myself and one sister (brother and other sister did not a lot) looking after them with me spending quite some time up there.

I can't really make any comment on the dementia side however it bought me a lot closer to my parents being there when they needed me as opposed to years relying on them helping me.

 

[Talby]

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.

Bozza

A post which very much mirrors exactly what is going on in my life and that of my wife. Not my mother, but my mother in law - Alzheimer’s, plus her sister who moved in a year ago (but is an alcoholic which presents some challenges).

Family is a peculiar, mostly rewarding & loving, thing. But when it’s s**t it’s really s**t and, like you, my wife is the emotional punchbag for her mother.

It’s hard and emotionally challenging but also very sad. We’re dealing with two people that we love so we’ve just had to buckle up and try to do our best. We have carers in during the day but nights can be hard.

We know it’ll get worse and we’ll try our best to do right.

Football is light relief.

Sending you all the very best.

 

[FamilyGuy]

In my opinion, the best thing I did for my mum, and my family (and on the advice of a doctor) was to find her a place in a Care Home for the the last few months of her life ~ living with dementia and cancer.
She was safe, she was happy, she was well looked after. We continued to see her every day, and also were able to take time out for ourselves if we needed to.

It was still a bastard disease though.

 

[FamilyGuy]

I believe that for a new PoA to be drawn up, all parties need to be “of sound mind”. ie “You and your mum” and all witnesses and named parties.

The implication being that someone who may have been diagnosed as having dementia may not be able to enter into a PoA.

Of course I am not an expert or a Solicitor.

BTW a PoA(s) can be completed on line and for a relatively small fee.

 

[Billy Seagull]

I believe that for a new PoA to be drawn up, all parties need to be “of sound mind”. ie “You and your mum” and all witnesses and named parties.

The implication being that someone who may have been diagnosed as having dementia may not be able to enter into a PoA.

Of course I am not an expert or a Solicitor.

BTW a PoA(s) can be completed on line and for a relatively small fee.

I think the family GP has a bit of discretion depending on the circumstances but yes, the sooner it’s done the better.
Both my parents are of sound mind and actually asked me to start looking at sorting out the POA asap before anything goes wrong, they are in their late 70s now.