What a week I’ve had. (Coping with someone with Alzheimer’s)

Andrew B

Well-known member
Messages
3,028
Reaction score
2,320
Location
Colne
After returning on Thursday last week from a lovely holiday in Wales, didn’t take long for things to resume back to normal in regards to having a family member with severe Alzheimer’s disease.
On Monday I went to Barnoldswick pharmacy for my second Moderna Vaccine shot, which was done within twenty minutes and looking a picture of health I was sent packing.
Being a nice place my mother and I took my Father round the place, bought a useless television for the caravan and had a coffee in an outdoor relaxed atmosphere.
Hope I’m not breaking any rules by stating that by tea time I’d suffered a pretty awful reaction and I spent the night cramping up and being sick, which left me weak for the day after.
After realising the the television needed taking back to the charity shop I was in no fit state to go and help and so my mother hoped she could park outside the shop?
After an hour my mum rang saying “ I’ve lost your dad” as by the time the shop had reimbursed her, my father had left the sanctuary of the car and set off to find her.
Not knowing what to do I told her to ring my Uncle who lives there and my niece who knows all about local face tube.

It took two awful, sickening hours for my uncle to find some workmen who had spotted him walking on the road to Carlton/Skipton. He then spotted a telecommunications van and gave the driver his number and my dads description. This kind gentleman found my dad, got out of the car and basically said “ come on George I’ll take you back to your wife”.
The local police who had been phoned were two hours late in responding and it was the kindness of Barnoldswick who by the way through the same local Facebook app, had once found my Uncles 900 bats iPad on a bench and was returned by a schoolboy.

Being his car I would normally have been there, but short of having to lock him in the car I’m not sure what we are supposed to do as my mums last attempt to get him to see his doctor was imo fobbed off by a telephone call, asking us to keep him active😩
The same Uncle who retrieved my dad was due to be given an Apple Watch for him to use himself to remember appointments ect. Though it seems now that said Apple Watch is going to my dad so we can track him if it ever happens again and trust me it could well happen again as we only have to turn our back.
This isn’t my dad anymore but if anyone who understands this has any suggestions it would be appreciated of course? If not I hope folk can see some levity in this somewhere lol.
 

mows

Well-known member
Messages
4,468
Reaction score
3,602
Location
edzell
Its terrible loosing someone to dementia.
The only advice i can give you is routine, routine, routine.
Anything outside the daily routine, is heading down a rabbit hole.
 

ozzyian

Well-known member
Messages
5,872
Reaction score
1,979
Location
East Lothian
I understand, it's tough Andrew, the hardest thing is you being aware of the slide. All you can really do is be patient, not get annoyed and just make sure you do the things that make him happy. Towards the end we had to be careful with Dad, it was tough on mum who had to keep a careful eye on him and keep him in sight. Dad was one time military and once beckoned me over and after a quick glance around said under his breath 'she's holding me prisoner you know' I'm just glad he largely remained content and if it's any comfort I suspect that this condition is harder on those around the sufferer.
 

Andrew B

Well-known member
Messages
3,028
Reaction score
2,320
Location
Colne
Its terrible loosing someone to dementia.
The only advice i can give you is routine, routine, routine.
Anything outside the daily routine, is heading down a rabbit hole.
Yeah thanks Mows and your advice is spot on, albeit I fear he’s gone past that now.
A friend who was a nurse and had a father with Alzheimer’s also said this. She pointed out the fact that he’d lived in the same house for 44years and was always a creature of routine even before his diagnosis would help him and maybe slow it down as oppose to putting him in a strange home.
He would often take Poppy out, who doesn’t care if he’s got dementia lol and loves him to bits, but all that came to an end when we got a letter from the council about having his dog off a lead in a section of the cemetery with no graves with living relatives. It’s a just a racket really from the council and my mother just wanted to pay the hundred bats bill to make it go away. After some upset and shouting, she finally relented to let me ring em up about it?
I wasn’t nasty but told them, they had basically charged an obvious Alzheimer’s sufferer with a £100 fine and not even for dog fouling but merely sat there.
After just five minutes they quashed the fine, albeit I was quick to point out that this could happen again and they have basically just stopped my from ever being able to go out on his own into the cemetery next to our house.

He would once read for hours but now he can still read better than anyone I know but can’t remember what he’s just read.
 

Andrew B

Well-known member
Messages
3,028
Reaction score
2,320
Location
Colne
I understand, it's tough Andrew, the hardest thing is you being aware of the slide. All you can really do is be patient, not get annoyed and just make sure you do the things that make him happy. Towards the end we had to be careful with Dad, it was tough on mum who had to keep a careful eye on him and keep him in sight. Dad was one time military and once beckoned me over and after a quick glance around said under his breath 'she's holding me prisoner you know' I'm just glad he largely remained content and if it's any comfort I suspect that this condition is harder on those around the sufferer.
Oh wow Ozzyian you really get it and on point.
My cricket hero Ian Botham who went through this with his dad said “that nobody should judge unless they been there”

I’ve always been able to just pretend he’s telling me something for the first time as oppose to pointing out it’s the 33rd time he’s told me.
He’s been content for ages but he’s now developed a habit for having to follow my mother about and sometimes pulling his hair out.
He can still have his moments of being really funny, but I fear his recent thing of joking with passers by, could see him getting lamped by the wrong person.
Also I reckon you’re right about it being worse for those around the sufferer.
 

mows

Well-known member
Messages
4,468
Reaction score
3,602
Location
edzell
A point to ponder.
Much as its hard dealing with someone with alzheimers or dementia.
Its important to still treat them respect.
With my mum, the worse she got, the more she craved sugar and the more sugar she ate the worse she got.
In the end she had almost no short term memory.
However, after a spell of illness where she didnt eat for a few days, she had a day or so being lucid once more, and fascinatingly, during that period of lucidity she could remember almost everything from the last 2 weeks including the fact that she hadnt got her weekly paper 4 days before.
It seemed to me that memories were still stored as normal, it was just accessing them was the problem, and sometimes they can still be accessed.
 

Finglas

Well-known member
Messages
683
Reaction score
508
Location
East Kilbride
Hi Andrew,

sounds very hard going and I sympathise with you. Glad you found your dad safe and well.

my grandmother has stayed with us now for over 3 years. She was diagnosed with vascular dementia at the same time so we have known for about 3 years that that was her diagnosis. Things ha e certainly worsened in that time but probably not by as much as I’d have expected. She is definitely very hard work and though she can be in the house herself she gets very distressed. I came in from work yesterday for example to find her panicking about losing her bank card and having no money. How was she going to go anywhere or get food etc if she didn’t have her bank card? Then it was a story about my mum having thrown my grans bank card away….all of it made up nonsense. Then the tears followed and we basically just went round and round in circles for the next few hours.

Incredibly frustrating stuff! My gran gets upset a lot too which is apparently a symptom of dementia but it brings everyone in the house down. She complains a lot about not seeing her friends when in reality she seems them multiple times a week. My mum is really the main carer (even though she works full time) but my gran is very attached to her and panics when my mum isn’t around. We were warned this would happen.

next week will be a big test because my mums away on holiday and me and my brother are het for looking after my gran for that week. Going to be a hard one because my gran won’t really listen to myself and my brother. Still sees us as 12 year old kids even though I’m 28 now! It normally takes for my mum to speak with her to settle my gran down but that won’t be an option next week!

sorry again to hear about your father, glad you quite quickly found him safe.

jamie
 

Andrew B

Well-known member
Messages
3,028
Reaction score
2,320
Location
Colne
Hi Andrew,

sounds very hard going and I sympathise with you. Glad you found your dad safe and well.

my grandmother has stayed with us now for over 3 years. She was diagnosed with vascular dementia at the same time so we have known for about 3 years that that was her diagnosis. Things ha e certainly worsened in that time but probably not by as much as I’d have expected. She is definitely very hard work and though she can be in the house herself she gets very distressed. I came in from work yesterday for example to find her panicking about losing her bank card and having no money. How was she going to go anywhere or get food etc if she didn’t have her bank card? Then it was a story about my mum having thrown my grans bank card away….all of it made up nonsense. Then the tears followed and we basically just went round and round in circles for the next few hours.

Incredibly frustrating stuff! My gran gets upset a lot too which is apparently a symptom of dementia but it brings everyone in the house down. She complains a lot about not seeing her friends when in reality she seems them multiple times a week. My mum is really the main carer (even though she works full time) but my gran is very attached to her and panics when my mum isn’t around. We were warned this would happen.

next week will be a big test because my mums away on holiday and me and my brother are het for looking after my gran for that week. Going to be a hard one because my gran won’t really listen to myself and my brother. Still sees us as 12 year old kids even though I’m 28 now! It normally takes for my mum to speak with her to settle my gran down but that won’t be an option next week!

sorry again to hear about your father, glad you quite quickly found him safe.

jamie
Thank you it means a lot.
Putting my dad aside for a minute, we had a very similar situation with my Grandma who when diagnosed with dementia would exhibit the exact same fears about money, albeit in her case it was real cash, drawn out for a month.
I personally think it their last grip on trying to be independent and in my grans case her only way of saying thanks, who by the way I always enjoyed her company anyway but she’d make me take some money for helping her Anyway of which I’d return to my mother who had power of attorney.
I had the thread cancelled about losing my grandma in a care home that’s been investigated and found negligent by the care commission a thing that government did get right.
It’s awful hard when like my dad he becomes very hard work and won’t let me help him as though he’s paranoid of me or something. We certainly don’t want to see him in a home and I don’t know how we would afford one when the time comes
 

Andrew B

Well-known member
Messages
3,028
Reaction score
2,320
Location
Colne
A point to ponder.
Much as its hard dealing with someone with alzheimers or dementia.
Its important to still treat them respect.
With my mum, the worse she got, the more she craved sugar and the more sugar she ate the worse she got.
In the end she had almost no short term memory.
However, after a spell of illness where she didnt eat for a few days, she had a day or so being lucid once more, and fascinatingly, during that period of lucidity she could remember almost everything from the last 2 weeks including the fact that she hadnt got her weekly paper 4 days before.
It seemed to me that memories were still stored as normal, it was just accessing them was the problem, and sometimes they can still be accessed.
It’s awful hard but yes I do try and treat him with respect as —1 he’s still my father and commands my respect and at times he does surprise us.
The neighbourhood knows but still there’s been times when we’ve been seen losing our temper which is so hard at times.
 

Grassy_Knollington

Well-known member
Messages
3,941
Reaction score
1,998
Well done guys, you have all shown / are showing the love and care for your family which we all hope to receive. Stick with it, don’t be too hard on yourself or others, take a break and trust your judgment.
 

budge

Well-known member
Messages
2,484
Reaction score
1,382
Hi Andrew, after a similar ordeal with my mum I can fully understand what you are going through. She was diagnosed with vascular dementia in her early seventies and we witnessed a steady decline over the following seven years until she passed away 18 months ago.
I wouldn't wish this on my worst enemy as like has been stated it's the close family who suffer the most.
The worst decision comes when care at home becomes too difficult and they have to be taken into care.
My advice would be to get as much help as possible, it is out there but you have to look for it. Financially my dad was lucky as mum was sectioned so the bulk of her care was funded. Almost £1000 per week would soon put a strain on anyone's finances

Sent from my CPH2127 using Tapatalk
 

Andrew B

Well-known member
Messages
3,028
Reaction score
2,320
Location
Colne
Hi Andrew, after a similar ordeal with my mum I can fully understand what you are going through. She was diagnosed with vascular dementia in her early seventies and we witnessed a steady decline over the following seven years until she passed away 18 months ago.
I wouldn't wish this on my worst enemy as like has been stated it's the close family who suffer the most.
The worst decision comes when care at home becomes too difficult and they have to be taken into care.
My advice would be to get as much help as possible, it is out there but you have to look for it. Financially my dad was lucky as mum was sectioned so the bulk of her care was funded. Almost £1000 per week would soon put a strain on anyone's finances

Sent from my CPH2127 using Tapatalk
Thanks for the advice and I believe the vascular one is even faster in its decline?
I am currently trying to ring around and arrange some help, even if it’s something where he could be taken out for a while to give my mum a break. Typically that’s where we’ve been slow to react as we’ve only just gotten the disability badge for the car which saved a bunch of money so far and it should of been done years ago.
I’m not to happy with his doctors though, albeit this Pandemic has caused many worse off than us, to feel like like they shouldn’t call their doctor. It’s quite sobering just how many on here, have been through the same thing.
 

tenet

Well-known member
Messages
2,991
Reaction score
993
Location
cotswolds
Such a terrible disease- my FiL aged 91 has slowly declined over the past few years with vascular dementia and alzheimers. It took forever to get a diagnosis from the Memory Clinic people with diagnosis given eventually after a face to face consultation. The wanted him to have an MRI scan but due to mobility problems and confusion this was a non starter. Anyway having got formal acknowledgement we have now applied to the council for a 25% reduction in Council Tax backdated to the point in time of diagnosis which is available to all in similar circumstances.
 

Andrew B

Well-known member
Messages
3,028
Reaction score
2,320
Location
Colne
Such a terrible disease- my FiL aged 91 has slowly declined over the past few years with vascular dementia and alzheimers. It took forever to get a diagnosis from the Memory Clinic people with diagnosis given eventually after a face to face consultation. The wanted him to have an MRI scan but due to mobility problems and confusion this was a non starter. Anyway having got formal acknowledgement we have now applied to the council for a 25% reduction in Council Tax backdated to the point in time of diagnosis which is available to all in similar circumstances.
Yes quite right too. After his diagnosis, which was really put off by ourselves to be honest, we had a neighbour who had worked for the council and the first thing she did was to make sure we applied for the council tax reduction as it does add up when you work it out.
So I’m sure you’ll have no problem on that. We didn’t have a clue about anything re what you can legally ask for and claim and so invariably we missed out on things that should of been looked into ages ago.
There is also the carers allowance that depending on what’s coming in, can be claimed for if you and another person are caring for him for 30 hours a week. After seeing my doctor about my own head in dealing with this, he advised me to look into this and explained that the carers allowance is for the person doing the caring, which gave me a new perspective on it.
I try and sort things so my mum can have a break at the weekend so she can go and have a drink at her sisters house or visit a flower show and do my bit as it were.
You have my sincere apologies for having to deal with this, and even though he’s 91 apparently according to the doctor it’s not necessarily an age thing in any case. The cruel thing is it robs the person of who they were and should be?

Having read a genuine report the other day about our water supply having higher fluoride content than ever? I’ve looked into the effects of fluoride and I’m seriously thinking of getting a water purifier as without wanting to come across as a conspiracy nut, just a simple google search on the stuff did make me wonder about my Dad who drank copious amounts of horrible tasting water in the foundry and as he developed a brittle bone disease in conjunction with Alzheimer’s, which is another condition associated with fluoride it has made me wonder🤔
 

tenet

Well-known member
Messages
2,991
Reaction score
993
Location
cotswolds
Yes Andrew - the Council Tax rebate has come through at the 25% reduction backdated to when the memory clinic diagnosed him. Some time ago we arranged for FiL to get carers allowance which is not means tested. We applied for attendance allowance for MiL but as her state pension exceeded the allowance available this was not allowed. We had all sorts of delays getting the CT rebate as our local council employees were all working very hard from home and to the best of my knowledge still are. Bloody disgrace 😞
My in laws are somewhat luckky in that my wife, her sister and brother all live within a couple of miles of the family home and have daily face to face contact with their parents helping with shopping, chores etc.
 

mows

Well-known member
Messages
4,468
Reaction score
3,602
Location
edzell
Yes quite right too. After his diagnosis, which was really put off by ourselves to be honest, we had a neighbour who had worked for the council and the first thing she did was to make sure we applied for the council tax reduction as it does add up when you work it out.
So I’m sure you’ll have no problem on that. We didn’t have a clue about anything re what you can legally ask for and claim and so invariably we missed out on things that should of been looked into ages ago.
There is also the carers allowance that depending on what’s coming in, can be claimed for if you and another person are caring for him for 30 hours a week. After seeing my doctor about my own head in dealing with this, he advised me to look into this and explained that the carers allowance is for the person doing the caring, which gave me a new perspective on it.
I try and sort things so my mum can have a break at the weekend so she can go and have a drink at her sisters house or visit a flower show and do my bit as it were.
You have my sincere apologies for having to deal with this, and even though he’s 91 apparently according to the doctor it’s not necessarily an age thing in any case. The cruel thing is it robs the person of who they were and should be?

Having read a genuine report the other day about our water supply having higher fluoride content than ever? I’ve looked into the effects of fluoride and I’m seriously thinking of getting a water purifier as without wanting to come across as a conspiracy nut, just a simple google search on the stuff did make me wonder about my Dad who drank copious amounts of horrible tasting water in the foundry and as he developed a brittle bone disease in conjunction with Alzheimer’s, which is another condition associated with fluoride it has made me wonder🤔
Flouride may well be an issue Andrew.
However, im of the opinion that sugar certainly is.
Its the one drug, that has managed to fool the public for a 100 years.
Unlike smoking that eventually was caught fudging the scientific papers.
Theres probably as much early deaths due to sugar as there ever was by smoking, but we carry on regardless because it tastes so good.

Both my mum and dads dementia was noticably worse when the ate a lot of sugar.

Now whether the sugar caused the dementia in the first place or just makes it worse, i dont know, but it certainly made them worse.

Its only when you try and not eat any sugar at all for week that you will appreciate just how addictive it is.
By not any, i mean any food with sugar as an ingrediant or additive.
 

Andrew B

Well-known member
Messages
3,028
Reaction score
2,320
Location
Colne
Flouride may well be an issue Andrew.
However, im of the opinion that sugar certainly is.
Its the one drug, that has managed to fool the public for a 100 years.
Unlike smoking that eventually was caught fudging the scientific papers.
Theres probably as much early deaths due to sugar as there ever was by smoking, but we carry on regardless because it tastes so good.

Both my mum and dads dementia was noticably worse when the ate a lot of sugar.

Now whether the sugar caused the dementia in the first place or just makes it worse, i dont know, but it certainly made them worse.

Its only when you try and not eat any sugar at all for week that you will appreciate just how addictive it is.
By not any, i mean any food with sugar as an ingrediant or additive.
Apparently my dad used to be ridiculous with sugar in his tea. I mean I’m embarrassed at having two and he was known for having five bloody sugars. To be honest my father has always been what you call different. Lost his real mum at four and was passed around grandmas until his hard drinking grandpa who was actually a good man, took him and showed him the countryside. I’m sure now there would se some kind of spectrum term but back then one just had to shape up. I’ve mentioned my dubious life choices and whilst my dad quit being a hippie when he met my mother he was murder for popping the most silly pills like ibuprofen. He also grew up with a bad stammer, which he learned to cope with.
Shame is both young and old loved my dad with his taste in music from Elvis to Radiohead, which is what kills me.
I’m gonna have to think about the sugar intake myself as it’s alwa Been ridiculous.
What frightens me more than anything is at 45 I’m forgetting the names of boxers and cricket players that I should know?
I do believe the system in general is awful, with the likes of chemicals in food ect so who knows nut I’m ever hopeful they’ll find some medication in time🤔

I’ve no doubt fluoride was used with good intentions but I can immediately tell the difference when staying on a caravan site with spring water?
 

Andrew B

Well-known member
Messages
3,028
Reaction score
2,320
Location
Colne
Yes Andrew - the Council Tax rebate has come through at the 25% reduction backdated to when the memory clinic diagnosed him. Some time ago we arranged for FiL to get carers allowance which is not means tested. We applied for attendance allowance for MiL but as her state pension exceeded the allowance available this was not allowed. We had all sorts of delays getting the CT rebate as our local council employees were all working very hard from home and to the best of my knowledge still are. Bloody disgrace 😞
My in laws are somewhat luckky in that my wife, her sister and brother all live within a couple of miles of the family home and have daily face to face contact with their parents helping with shopping, chores etc.
I know how you feel. I know people my age, totally messed up on alcohol and drugs, with no respect for life and you know what, they somehow know every trick in the book to get a benefit called PIP, which seriously is over a grand in their hand, with house paid for and they don’t even realise or respect that?
Maybe I’m being cynical but it does seem as if these things are made as difficult as possible to put the working people off applying as I can tell from your post as my family are, that you’re honest as the day is long.
My poor grandma who passed away in a care home, that’s now been found by the care commission as negligent, took all of my grandmas savings and whilst we don’t care about the money we gonna ask for it back.

In the meantime you keep on keeping on as the alternative doesn’t bare thinking about
 

Kype King

Well-known member
Messages
388
Reaction score
265
Location
Bath
I can recommend a book called ‘Contented Dementia’ by Oliver James. Found it really helpful for my mum with vascular dementia and my dad with late onset Alzheimer’.
 

Andrew B

Well-known member
Messages
3,028
Reaction score
2,320
Location
Colne
I can recommend a book called ‘Contented Dementia’ by Oliver James. Found it really helpful for my mum with vascular dementia and my dad with late onset Alzheimer’.
Oh ok I may just check that out. Great title as he’s not a contended as he were. Things change so fast and now he has to follow my mum around even upstairs. Fortunately he his happy and still tries to crack jokes. Oh and the great thing about having a dog, Poppy loves him to bits and doesn’t care one bit about his condition lol.
 

Kype King

Well-known member
Messages
388
Reaction score
265
Location
Bath
Oh ok I may just check that out. Great title as he’s not a contended as he were. Things change so fast and now he has to follow my mum around even upstairs. Fortunately he his happy and still tries to crack jokes. Oh and the great thing about having a dog, Poppy loves him to bits and doesn’t care one bit about his condition lol.
That’s something to be thankful for Andrew. Often the long term memory is much better than the short and accessing it using photos and the like can be really helpful. The book has lots of good tips.
 

Andrew B

Well-known member
Messages
3,028
Reaction score
2,320
Location
Colne
That’s something to be thankful for Andrew. Often the long term memory is much better than the short and accessing it using photos and the like can be really helpful. The book has lots of good tips.
Absolutely and to be honest I never got tired of listening to old people’s tales of the past anyway. Sad bit now though is where he could once tell you what year the Beatles made each album, I’m afraid he now lost that, which is particularly sad as that was my dads whole identity but at least he still loves music.
I’ve just today had another ding dong with the council whom run a bit of a racket in the cemetery re dogs n fines.
He no longer goes out on his own so this was from ages ago re poppy being off the lead. After a letter with a 100 bats fine, my mother was just gonna pay it. After a lengthy argument she let me call them and after I politely told them he had Alzheimer’s they quashed the fine, albeit I did say it could happen again. Anyway as if nothing had happened we got a threatening letter with court proceedings. This time I lost my rag with em as I don’t believe it’s a police matter and after telling em, they should have it on their records about my dads condition they cancelled it within minutes.

First time they got my dad was in the early stages, where he’d just been to his daughters funeral and he actually lost his rag and he’s unable to give a false name anyway. My mum equates this to having a police record or something and automatically just wants to pay and have done. By the way the place in question is without graves and is a public footpath over what would of been very early graves out of memory as you can see hollows, plus my dad always had poo bags. This Colne council ended up on Dominic littlewoods morning show for nefarious/racket type behaviour form councils.
How many honest folk in similar circumstances are being targeted like this I wonder? Respect for reduced council tax for those in need but conversely I will call out what I perceive as wrong.
Anyway can I just say thanks to all the replies on this thread by those showing concern, those with advice and perhaps a little sad, those on here who have been though the exact same thing.❤️👏👏
 
Top