How quick does Alzheimer's progresd

[Sharon1969]

Hi,
Mum is waiting to see her doctor to be referred to mental health, she recently had MRI and showed benign tumour, we know now this isn't causing her behaviours etc so basically been discharged from neuro clinic, letter from neuro surgeon says the symptoms shown with the memory test etc is present with person with Alzheimer's, that's it...I spoke to clinic secreatary who said your mum has been discharged nothing else this clinic can do and to just keep a look out if she gets worse, it's been like a smack in the mouth as we're basically back to the start,
Mum is now convinced she's working, she retired couple years ago and that my dad is still alive, he died suddenly 7 years ago, she is putting the grill on closing the door and setting fire alarms off, she has folded up tea towels, hand towels etc all over the place she put a towel over the cooker last week, can anyone tell me if this is a more advanced stage, we just feel we get somewhere then shunted right back to the start and in the meanwhile mum is getting worse day by day, sorry for the long post xx

 

[Fenton12]

Hi Sharon

I am sorry to hear your news. My husband is at late stage at the age of 53 and he was diagnosed when he was 50 so it has been a rapid degeneration for him. It varies as to how the degeneration takes place. There is advice on late stage on the Alzheimer's web page. There are lots of people to give you advice but please ask if you have questions:

 

[chickenlady]

how quick

Hi,
Mum is waiting to see her doctor to be referred to mental health, she recently had MRI and showed benign tumour, we know now this isn't causing her behaviours etc so basically been discharged from neuro clinic, letter from neuro surgeon says the symptoms shown with the memory test etc is present with person with Alzheimer's, that's it...I spoke to clinic secreatary who said your mum has been discharged nothing else this clinic can do and to just keep a look out if she gets worse, it's been like a smack in the mouth as we're basically back to the start,
Mum is now convinced she's working, she retired couple years ago and that my dad is still alive, he died suddenly 7 years ago, she is putting the grill on closing the door and setting fire alarms off, she has folded up tea towels, hand towels etc all over the place she put a towel over the cooker last week, can anyone tell me if this is a more advanced stage, we just feel we get somewhere then shunted right back to the start and in the meanwhile mum is getting worse day by day, sorry for the long post xx

Try going on the web page of your local mental health trust to see if they have an emergency number, you can then ring them for advice on speeding up memory clinic appointments.
Meanwhile each person's progress through this illness is so different from everyone else's so try not to focus on how long will it last, focus on having happy times now.

 

[Sharon1969]

Hi Sharon

I am sorry to hear your news. My husband is at late stage at the age of 53 and he was diagnosed when he was 50 so it has been a rapid degeneration for him. It varies as to how the degeneration takes place. There is advice on late stage on the Alzheimer's web page. There are lots of people to give you advice but please ask if you have questions:

It just feels we have been left to sort things out ourselves without any guidance, I suppose once we go to her GP we will get more belp, thank you. It's strange because if a stranger was talking to mum she would come across as fine when she's talking about getting a new job and things what are happening in her street etc but because we know these things aren't true it's so sad to listen to, do we go along with her stories? We have just been saying things like oh that will be nice then distracting her to another covers station, the worse thing is she thinks dad is still alive he died 7 years ago, she won't go to bed because he isn't in then gets angry saying she's taking his key off him because he's out late again and hasn't been home all day, is this things you see in later stages? Just so worried, confused that we don't know what to do xx

 

[haribocrazy]

Hello Sharon

I understand what you mean. My mum has a mixed diagnosis (alzheimer, vascular and fronto-temporal lobe dementia).When she was first diagnosed a few months ago I thought-wow, now we will get some help. But no, there is no help. I was very upset at first, but have started to understand how it all works now.

You do not say where you are, and I know that soc services, memory clinics etc vary from area to area, but all are under a lot of pressure to NOT help and will let you do as much as you can on your own.

First--does your area run memory clinics? Do you need to see the gp and get referred? Or have you been given a definite diagnosis? The diagnosis is very helpful. There are drugs that can help. My MIL has been on aricept for about 18 months and we think it has helped.

Second--have a look at the soc services in your area. You are entitled to an assessment for your mum if she is not coping at home. TBH--the assessment surprised me. They said my mum was fine (she has set fire to the microwave and throws all the food away) but as she is clean and goes out on her own she does not need help.

Third--find out all you can about this condition. Try and find out what is available in your area, what you have to pay for and who runs it. Age concern is great for this.

Four--decide just how much you are willing and ABLE to do for your mum. I am sure that you love her and want to do all you can for her but caring is very difficult. It will take up all your time and then demand some more.
Is she able to live alone at the moment?
Does she need to live with someone in order to be safe?
What will happen when she cannot live alone? Is she going to pay for her own care?
Does she need people to go in during the day/night?
I know that it seems early to be thinking about this but if she falls etc are you willing to have her live with you? If she goes into hospital (even just overnight) you will be asked to take her home.

One thing that took me ages to accept was that mum was never going to get any better. Each day I see her is the best that she will ever be. The things you describe will be familiar to any one who cares for someone with dementia and its tough to come to terms with and understand.

Be kind to yourself and let yourself be upset, angry worried because this is a very difficult time.

As to the conversations--everybody is differnt but I just go along with whatever mum says. We still have arguments but mainly when she has thrown away all the shopping I have just bought around! It IS difficult. My mum told the gp etc that I lived in the same street and saw her each day. I live miles away and see her once a week!

And lastly--talk to anyone who can possibly help. Old friends that can pop in for a chat, family to go shopping-anything that will help you and give her a familar face.

Sorry to be so unhelpful, but since diagnosis I have been amazed at how much help there "isn't". Mums next appt at the memory clinic is in 6 months. I think this is because she is physically very fit and so looks as tho she needs no help. But we know that she does not sleep much, gets lost and hardly eats. But because mum still has capacity to make her own choices she will not let anyone in the house.

It really does vary from area to aarea. My MIL has had help from the start of her diagnosis.

Good luck with it all. These pages and forums have been a godsend to me. Pop back and let us know how you are .

 

[Kevinl]

It's different for everyone, my wife forgot how to get the bus home from work at 50 and had to give up working, Her decline for the next 12 years was very gradual.
Then in January this year she had some sort of meltdown in the course of one day and ended up sectioned is a secure unit for 6 months, she's now in an EMI home.
The memory clinic say there is nothing they can do, I doubt your GP will want to know either, AZ isn't treatable so there is nothing really the NHS can do, this often surprises people who expect that like any other disease the NHS will be the ones to help.
Help will come from 2 sources, you should contact social services and ask them to do an assessment as she is a vulnerable adult. The other source of help is charities: the AZ Society, AGEUK and the like, there are lots of local things too like drop in centres and dementia cafes but you'll have to look for them locally.
I think Haribo has summed it up quite well as to the next course of action.
K

 

[Sharon1969]

Hello Sharon

I understand what you mean. My mum has a mixed diagnosis (alzheimer, vascular and fronto-temporal lobe dementia).When she was first diagnosed a few months ago I thought-wow, now we will get some help. But no, there is no help. I was very upset at first, but have started to understand how it all works now.

You do not say where you are, and I know that soc services, memory clinics etc vary from area to area, but all are under a lot of pressure to NOT help and will let you do as much as you can on your own.

First--does your area run memory clinics? Do you need to see the gp and get referred? Or have you been given a definite diagnosis? The diagnosis is very helpful. There are drugs that can help. My MIL has been on aricept for about 18 months and we think it has helped.

Second--have a look at the soc services in your area. You are entitled to an assessment for your mum if she is not coping at home. TBH--the assessment surprised me. They said my mum was fine (she has set fire to the microwave and throws all the food away) but as she is clean and goes out on her own she does not need help.

Third--find out all you can about this condition. Try and find out what is available in your area, what you have to pay for and who runs it. Age concern is great for this.

Four--decide just how much you are willing and ABLE to do for your mum. I am sure that you love her and want to do all you can for her but caring is very difficult. It will take up all your time and then demand some more.
Is she able to live alone at the moment?
Does she need to live with someone in order to be safe?
What will happen when she cannot live alone? Is she going to pay for her own care?
Does she need people to go in during the day/night?
I know that it seems early to be thinking about this but if she falls etc are you willing to have her live with you? If she goes into hospital (even just overnight) you will be asked to take her home.

One thing that took me ages to accept was that mum was never going to get any better. Each day I see her is the best that she will ever be. The things you describe will be familiar to any one who cares for someone with dementia and its tough to come to terms with and understand.

Be kind to yourself and let yourself be upset, angry worried because this is a very difficult time.

As to the conversations--everybody is differnt but I just go along with whatever mum says. We still have arguments but mainly when she has thrown away all the shopping I have just bought around! It IS difficult. My mum told the gp etc that I lived in the same street and saw her each day. I live miles away and see her once a week!

And lastly--talk to anyone who can possibly help. Old friends that can pop in for a chat, family to go shopping-anything that will help you and give her a familar face.

Sorry to be so unhelpful, but since diagnosis I have been amazed at how much help there "isn't". Mums next appt at the memory clinic is in 6 months. I think this is because she is physically very fit and so looks as tho she needs no help. But we know that she does not sleep much, gets lost and hardly eats. But because mum still has capacity to make her own choices she will not let anyone in the house.

It really does vary from area to aarea. My MIL has had help from the start of her diagnosis.

Good luck with it all. These pages and forums have been a godsend to me. Pop back and let us know how you are .

My sister lives with mum anyway so we are ok on that side of things for the minute, when it comes to full time care i think we as a family need to get something in place, i know it will be so hard.
Yes there is a memory clinic local to us, they actually came out last year to assess mum and said nothing wrong with her and she was discharged.
She's got gp on Wednesday so hopefully get a diagnosis confirmed but I think we will be referred somewhere else, just got a feeling things won't click into place for a long time!
She's only 68 so I don't think that helps her!!
Just feel we have a long hard battle ahead of us, tnank you for sharing your experience and know that am not the only one to feel like this xx

 

[Sharon1969]

It's different for everyone, my wife forgot how to get the bus home from work at 50 and had to give up working, Her decline for the next 12 years was very gradual.
Then in January this year she had some sort of meltdown in the course of one day and ended up sectioned is a secure unit for 6 months, she's now in an EMI home.
The memory clinic say there is nothing they can do, I doubt your GP will want to know either, AZ isn't treatable so there is nothing really the NHS can do, this often surprises people who expect that like any other disease the NHS will be the ones to help.
Help will come from 2 sources, you should contact social services and ask them to do an assessment as she is a vulnerable adult. The other source of help is charities: the AZ Society, AGEUK and the like, there are lots of local things too like drop in centres and dementia cafes but you'll have to look for them locally.
I think Haribo has summed it up quite well as to the next course of action.
K

So sorry to hear about your wife, such a young age as well, heartbreaking..
I spoke to Alzheimer's society today the lady on the phone was lovely, really empathic and give me a lot of advice, she did more in 45 min phone call than all the doctors she's seen over last couple of months., thank you for your reply, big hugs xx

 

[daughterofpat]

It is so difficult. I would suggest writing to the gp and putting down the things you're concerned about and getting that referral to the memory clinic.
My mum (and the family) were concerned about her speech and memory, went to the gp and she passed the first memory test with flying colours - was diagnosed as depressed (we knew she wasn't). We didn't trust the diagnosis, and I wrote a letter to the gp detailing the things that were happening and why we were concerned. Two months later, we were referred to the memory clinic, and mum only scored 7 in the test and was diagnosed with mixed dementia, quite advanced. The psychiatrist (with appalling lack of a duty of care) was quite blunt about the issue saying we had to switch off all electrical appliances, get care in etc - all in front of my mum. It was a bit of a shocker. But then the care didn't come when they were meant to, didn't manage her medication, and there was a rapid decline, hospital admittance, house flood, wanderings, panicked phone calls; she couldn't even work out how to make herself a cup of coffee. So from being independent and mum (albeit rather confused at times) to all that happened in two months!! She is now in a CH, but on donepezil, and her condition's improved/stabilised. She cannot live independently, but she's more articulate now, and mostly content. I understand there are plateaus and dips. The medication slows the progression and hopefully there will be no more sharp dips for mum, but the decline will still come. One of the horrid things is that you just don't know when or how quickly. Medication can help, but you need the diagnosis first. Best of luck!

 

[Sharon1969]

It is so difficult. I would suggest writing to the gp and putting down the things you're concerned about and getting that referral to the memory clinic.
My mum (and the family) were concerned about her speech and memory, went to the gp and she passed the first memory test with flying colours - was diagnosed as depressed (we knew she wasn't). We didn't trust the diagnosis, and I wrote a letter to the gp detailing the things that were happening and why we were concerned. Two months later, we were referred to the memory clinic, and mum only scored 7 in the test and was diagnosed with mixed dementia, quite advanced. The psychiatrist (with appalling lack of a duty of care) was quite blunt about the issue saying we had to switch off all electrical appliances, get care in etc - all in front of my mum. It was a bit of a shocker. But then the care didn't come when they were meant to, didn't manage her medication, and there was a rapid decline, hospital admittance, house flood, wanderings, panicked phone calls; she couldn't even work out how to make herself a cup of coffee. So from being independent and mum (albeit rather confused at times) to all that happened in two months!! She is now in a CH, but on donepezil, and her condition's improved/stabilised. She cannot live independently, but she's more articulate now, and mostly content. I understand there are plateaus and dips. The medication slows the progression and hopefully there will be no more sharp dips for mum, but the decline will still come. One of the horrid things is that you just don't know when or how quickly. Medication can help, but you need the diagnosis first. Best of luck!

Hi sorry only just replying..oh wow I have just cried reading your post, why do these so called professionals get away with it? I have lost faith in mums GP, she has referred her back to memory clinic, like your mum passed the test just over year ago, she scored 8 2 months ago!! Her GP sent my sister out the room saying to mum are your daughters just being drama queens?!!! Mum knows what's wrong she won't talk about it and it's so hard talking to doctors while she's sitting there! We are noticing a decline daily but her gp has put on the referral appointment not urgent!! I rang clinic the other day said won't even look at mums case for at least 6/8 weeks, we are going to ring every other day they will give us an appointment to get shut of us hopefully, mum is only 68, it's heartbreaking as you know.. your poor mum that is such a fast decline it's worrying that if they don't medicate her soon it may be too late.. feel like screaming at someone.. xx

 

[Merlin1]

Complimentary therapies and vitamins

Hi my mum is recently diagnosed with Alzheimer's early stages. I was wondering if any one had any recommendations for vitamin supplements , diet etc

 

[Angie1996]

My dad was diagnosed this year Jan 2016 with severe Alzheimers so went from living in own in bungalow, to retirement flat on own august 2015, then being sectioned this august, to care home in 21 months in total.

I suspect he had it much earlier as he rapidly declined when my mum died last Jan 2015, however his decline is rapid!

The year before (2014) he forgot where I lived once only, however this was the only thing I recall as being very odd..........

Best of luck to you, you really have to fight to get help, the Alzheimers help line for me was also amazing and I got the best advise, and more importantly this forum is my life line........

My best top tip is read this forum a lot its invaluable, and I wrote everything down with his behaviour when he was diagnosed this year, once I got him into the memory clinic in January 2016 this is when it really took off as I had a key contact.......

His GP was useless!

Best of luck for your journey ahead of you, with the right support it helps....

 

[jhoward]

I have the early stage of Alzheimers, diagnosed about 18 months ago. I take donepazil, and keep to a "Mediterranean" diet (plenty of fruit and veg, olive oil, fish etc) and am more or less stable. I am 80, so expect to be a bit forgetful etc anyway.

It's still pretty demoralising, feeling your brain beginning to fold up as it seems. Some people are aware of what's happening, others seem to just drift into it. I think it's sometimes harder for relatives, seeing their loved one seeming to turn into a different person, than it can be for the person involved (although I'm pretty cross about it, I admit), and certainly harder for younger people.

Overall, the general advice seems to be to keep to a good diet and try for plenty of stimulation, (exercise, doing things you like, meeting with friends and so forth). I certainly have times when I want to stay in bed and read, but on the whole I get up and do stuff. I have good friends who come round, and I live in a friendly village with people who stop and chat if I'm in my little front garden.

We had a campaign a couple of years ago to be a "dementia friendly community" which is a lovely idea and makes a good difference. (I didn't know then that I'd end up with Alzheimers myself!) Among other things, it helps to take the stereotyping and fearfulness away from the idea of dementia.

 

[Sharon1969]

My dad was diagnosed this year Jan 2016 with severe Alzheimers so went from living in own in bungalow, to retirement flat on own august 2015, then being sectioned this august, to care home in 21 months in total.

I suspect he had it much earlier as he rapidly declined when my mum died last Jan 2015, however his decline is rapid!

The year before (2014) he forgot where I lived once only, however this was the only thing I recall as being very odd..........

Best of luck to you, you really have to fight to get help, the Alzheimers help line for me was also amazing and I got the best advise, and more importantly this forum is my life line........

My best top tip is read this forum a lot its invaluable, and I wrote everything down with his behaviour when he was diagnosed this year, once I got him into the memory clinic in January 2016 this is when it really took off as I had a key contact.......

His GP was useless!

Best of luck for your journey ahead of you, with the right support it helps....

Hi angie,
That's my worry regarding mums decline, she too once forgot my address, she was picking me up in a taxi but sent it to my old address I lived over 18 years ago, thing is she knew right away what she had done and rang to tell me, I rang taxi company to cancel it, we noticed a difference after dad died 7 years ago but thought she was repeating herself with so many people coming and going to pay their respects, we suspected years ago but so difficult to get her to go the doctors, in the end I had to lie to her saying it was a MOT check up that everyone is being sent for! Jeez she was angry once she realized why she was there!
Just waiting for memory clinic to sort her appointment out.
This forum is great and the support is overwhelming, I have had more answers from all the lovely people on here and on the Alzheimer's support line than we have had off doctors and consultants!
Big hugs to you and your dear dad xxx
Her GP is the same.. useless, it's like no one in medical profession wants to know!!

Xxx

 

[Sharon1969]

I have the early stage of Alzheimers, diagnosed about 18 months ago. I take donepazil, and keep to a "Mediterranean" diet (plenty of fruit and veg, olive oil, fish etc) and am more or less stable. I am 80, so expect to be a bit forgetful etc anyway.

It's still pretty demoralising, feeling your brain beginning to fold up as it seems. Some people are aware of what's happening, others seem to just drift into it. I think it's sometimes harder for relatives, seeing their loved one seeming to turn into a different person, than it can be for the person involved (although I'm pretty cross about it, I admit), and certainly harder for younger people.

Overall, the general advice seems to be to keep to a good diet and try for plenty of stimulation, (exercise, doing things you like, meeting with friends and so forth). I certainly have times when I want to stay in bed and read, but on the whole I get up and do stuff. I have good friends who come round, and I live in a friendly village with people who stop and chat if I'm in my little front garden.

We had a campaign a couple of years ago to be a "dementia friendly community" which is a lovely idea and makes a good difference. (I didn't know then that I'd end up with Alzheimers myself!) Among other things, it helps to take the stereotyping and fearfulness away from the idea of dementia.

I would just like to say what an inspiration you are... you haven't given up on yourself and haven't let this nasty disease wear you down ..
I feel mum give up after dad died suddenly 7 years ago, she has battled leukemia and now this I'm such a short time, she's 68..
I was reading about Mediterranean diet and thinking of doing it myself!! Upon reading fact sheets that seems to be the general pattern, good diet, plenty of exercise and stimulation, my sister lives with her who doesn't seem to get how important this is to mums well being, it's hard work.. xx