time scales

dancingmum

Registered User
Sep 29, 2009
15
0
West Midlands
My dad was diagnosed with mixed type dementia last September; mild to moderate. I live next door to mum and dad. At the mo dad is just very forgetful and has forgotten how to do small things e.g the Sky remote control; which rubbish goes in which bin (mind you I defy anyone to work that one out!). He has also lost interest in gardening, reading and crosswords which used to be his passion. I just wondered if anyone could share some info about timescales, what will be the next stage etc and coping strategies for us all. We just all want to support dad in the best way that we can. Dad is 86, mum 83. Thank you:)
 

gigi

Registered User
Nov 16, 2007
7,788
0
70
East Midlands
Hello dancingmum,

It's very difficult to predict time-scales or progression to the next stage with dementia.

Have a look at this post and it will give you an idea of what to expect...

http://forum.alzheimers.org.uk/showpost.php?p=282329&postcount=132

Your parents are very lucky to have you living next door to them and wanting to offer support and help.

It's very hard to give a general answer to your question about coping strategies..there are so many! Is there anything specific you had in mind?

Keep posting and we'll do our best to support you..:)

Love xx
 

BeverleyY

Registered User
Jan 29, 2008
716
0
Ashford, Kent
Hi

Everyone is different.

My Dad is 84 next month and has had dementia (they think his is mixed Alheimers/Vascular Dementia) for probably 8 years now. He has NEVER had any medication for his dementia.

He is still totally mobile, needs no help dressing/washing (although I do choose his clothes).

He is forgetful (very) and the only thing he is able to prepare himself is a ham sandwich.

He does get really confused, but as I say, is still very able bodied etc. In the grand scheme of things, he is probably still deemed to be early-moderate stages (even though he scores really poorly on MMSE tests) even after all these years.

There are many others who have rapid declines so you really just cannot tell.

As for coping strategies.... all I can say is just breathe!! It's a tough road and it drives you nuts at times - but, it's a personal thing, and what some people find unbearable, others take in their stride.

Best wishes.

Beverley x
 

ChrisH

Registered User
Apr 16, 2008
281
0
Devon, England
As the others have said everyone is different.

Mum is 84 and has had mixed (vasc/alz)for probably 4 years.

She lost mental capacity last Feb, was taken into emergency respite and from there into full time care. At that time she still remembered relatives and we could have a reasonable conversation. Now she says she remembers the names I mention but I feel she has no real concept of their relationship to her. Even her memory of childhood events is very patchy and needs lots of prompting. It's very difficult to have a conversation with someone who can't remember anything. It's pretty much all about the weather and what's going on in her immediate vicinity. She too used to be an avid crossworder, baked lovely cakes and had a very active social life. She is also still very mobile - but at least she doesn't try to escape:).

Are you getting any help from social services or anyone?
Hopefully you have the support of other family members too.

As for coping - a sense of humour helps, (though mine gets a bit warped at times:D). Oh, and don't forget to keep popping in here - this place is truely magnificant when you're feeling low.

Chris
 

Izzy

Volunteer Moderator
Aug 31, 2003
73,996
0
72
Dundee
At the mo dad is just very forgetful and has forgotten how to do small things e.g the Sky remote control; which rubbish goes in which bin (mind you I defy anyone to work that one out!). He has also lost interest in gardening, reading and crosswords which used to be his passion.

Hi there. My husband Bill was diagnosed over 8 years ago and on the whole if people don't know him they wouldn't know he had Alzheimer's. He is around the beginning of the moderate stage I would say. Close family and friends see that he can't do all of the things he used to do. What you describe here is exactly like Bill. He used to love crosswords and was very good at them. Gradually he has stopped even looking at them now. He used to do all of the housework, the ironing, loved reading etc etc. He can't do any of that now. Well, he can read but he can't follow a story. He does, however, still love coming on holidays abroad, going away for weekends, going for a walk with me, going to the cinema or theatre with me, going out for nice meals etc etc. Although he has lost lots of his abilities I think we are really lucky that the disease has not advanced as quickly as I thought it would. He has been on Aricept for all the time since diagnosis and he is about to be changed to another medication. I suppose what I'm saying is that everyone is different. We have been lucky as the disease has progressed slowly. I wish you that kind of luck too. Take care. Izzy x
 

dancingmum

Registered User
Sep 29, 2009
15
0
West Midlands
thank you Gigi

Thank you so much Gigi; that article is so useful; something concrete to refer to. Dad is still meticulous with his hygiene and can dress himself with no problem. Last time he did the test he scored 23 which is brill but that was some months ago. My major problem is remaining calm and my patience is sometimes not what it should be. I was widowed 10 years ago and am a Headteacher as well as having 2 teenage daughters so I think i just spread myself too thinly at times. Will try harder though and again thank you for your reply:)
 

dancingmum

Registered User
Sep 29, 2009
15
0
West Midlands
Thanks Beverley

Thank you so much for your reply Beverley; it is so good to know there are others in a similar position to myself. Dad was not prescribed medication; we were told that the element of vascular dementia makes it unsafe to receive medication. Did your dad ever have any falls? Dad went through a very "clumsy" stage a couple of years ago and injured himself quite badly at times requiring medical intervention. Looking back I wonder whether he had mini-strokes.
Mum also chooses dad's clothes for him but then again she always did :)
Hope to hear from you again; always good to compare notes
 

Izzy

Volunteer Moderator
Aug 31, 2003
73,996
0
72
Dundee
. My major problem is remaining calm and my patience is sometimes not what it should be. I was widowed 10 years ago and am a Headteacher as well as having 2 teenage daughters so I think i just spread myself too thinly at times. Will try harder though and again thank you for your reply:)

I too am a headteacher! I can empathise with you totally. I don't have children of my own but I have my husband with Alzheimer's and my mother (92) with some kind of dementia. It's hard dealing with all of this and running a school as well - mind you sometimes it's the school which keeps me sane!! Izzy x
 

sallyc

Registered User
Aug 20, 2008
1,674
0
47
suffolk
hi dancing mum. ↲I look after my grandad. He was diagnosed with AD around 2 years ago. He's still very active and strong. He's 87 and still fiercely independent. He can get himself up, washed, dressed and do his breakfast cereal etc but then doesn't put the milk away or wash up. He has carers in in the mornings to make sure he's done all this and give his meds. He can't choose his clothes, and doesn't realise when they need changing. We sort that out for him. He can't use his tv or washing machine. He can't cook a meal, but can heat himself a tin of soup and make a sandwich. His score, several times, last year was 20 (both before and after a house move from yorkshire to suffolk to live near us ). He lives on his own in a bungalow. In october he scored 26! Even tho he had got worse, and at xmas was scored by a consultant as 22. The scores to me don't seem to mean much because he's so much less able to fend for himself, and we can see his deterioration so clearly, yet officially he scores better now than he did a year or more ago! We had no choice but to get him to move near to us, despite the fact we were advised that it would make him much worse, which it no doubt has, though not as badly as we feared it would, yet his scores suggest an improvement. I think everyone is different and you can't really put timescales on it. However, as far as coping strategies are concerned it's been a steep learning curve for us to go from seeing him every month or two, to seeing him every day or two. We try to keep a sense of humour through it. Whilst this may seem harsh, if we didn't we'd just cry. We take each day as it comes and take comfort in the fact that we can help him, as far as possible, to enjoy his life. He also adores my two children, aged 7 and 2, and they are both brilliant at dealing with him. I hope you get some better answers than mine. ↲Love sal x
 

Bookworm

Registered User
Jan 30, 2009
2,580
0
Co. Derry
Stage/time scale?

I just wanted to say what a really good thread - I'm grateful to see Bruce's chart. I agree with the two "heads" - work keeps you sane. Also there is something quite weak about the whole approach to stage - for me it is more about the impact on those closest - as Izzy says - people outside may not see much, but as Dancingmum says - finding patience is a problem - for us caught up with this - sometimes it is hard to go at their pace - for me the difficulties all centre around lack of awareness & denial & cover ups - stage is just not a question - except to ponder how long? My Hb used to love crosswords too & I think he probably could still do quite a tough one - maybe I'll get the Sat paper next week again like we used to.

Welcome Dancingmum - you are among friends who will support you here. By the way I'm in Education too - at a Uni.
 

BeverleyY

Registered User
Jan 29, 2008
716
0
Ashford, Kent
Thank you so much for your reply Beverley; it is so good to know there are others in a similar position to myself. Dad was not prescribed medication; we were told that the element of vascular dementia makes it unsafe to receive medication. Did your dad ever have any falls? Dad went through a very "clumsy" stage a couple of years ago and injured himself quite badly at times requiring medical intervention. Looking back I wonder whether he had mini-strokes.
Mum also chooses dad's clothes for him but then again she always did :)
Hope to hear from you again; always good to compare notes

Hi

In the beginning, they thought Dad purely had vascular dementia and advised us that the meds available were not licensed for that type of dementia.

A few years later, one CPN indicated that there was probably a strong chance that he had mixed dementia as there were signs of sort term memory loss before the mild stroke he had around 7 years ago.

We revisited the idea of medication, but his consultant highlighted that as Dad has glaucoma, it may not be advisable. The decision, was ours to make and I decided against medication because I would never have forgiven myself if he had gone blind. Whilst I may not be able to stop the advancement of dementia, I can stop the loss of his sight through daily eye drops (his eyesight is perfectly stable). For me, the thought that he will end up confused, scared AND blind, was just horrifying and I took the decision I thought right for my Dad.

Personally, I am sceptical of the alzheimers medication and it's effectiveness. Given that this disease affects everyone differently: fast through to slow deterioration nobody can accurately say that the medication has worked. If someone is on meds, and deteriorates slowly, well it's possible that they would have deteriorated slowly without meds (like my Dad). The only way to know for sure if they works is if the same person could be on them and off them at the same time in a parallel universe!!!

My Dad has never been clumsy, and to my knowledge he has only had the one stroke which left him with a mildly slurred speech for a while. His speech returned to normal within a few months, so I guess it was quite mild.

Given that they still believe he has at least some margin of vascular dementia, I do all I can to help keep the physical risks to a minimum to avoid further strokes. He has aspirin every day, takes medication for high blood pressure and cholesterol. I manage his diet and make sure he doesn't have anything too unhealthy (apart from the pack of biscuits he has every day!:rolleyes:) I try to manage his diabetes, but given that he cannot remember buying or eating the biscuits, it's a battle I don't always win.

Feel free to compare notes at any time:D

Beverley x
 

Izzy

Volunteer Moderator
Aug 31, 2003
73,996
0
72
Dundee
I know what you say is very reasonable. It may be that Bill's decline might have been just as slow without meds, who knows. Having been give meds and having been on them for so long it still scares me that he will decline rapidly without them. As you say there is no way to tell.
 

BeverleyY

Registered User
Jan 29, 2008
716
0
Ashford, Kent
I know what you say is very reasonable. It may be that Bill's decline might have been just as slow without meds, who knows. Having been give meds and having been on them for so long it still scares me that he will decline rapidly without them. As you say there is no way to tell.

Exactly, and I'll be honest Izzy if it hadn't been for the glaucoma, I would have jumped at the chance of the medication for Dad. I just felt the risks were ones I wasn't prepared to take. Gambling with his sight was not something I wanted to be responsible for.

I wonder what would have happened though if he had been on meds? After 8 years of this disease, I can't imagine he would have been any better than he is now. He is very stable, and deterioration is slow so I am actually not convinced that they would have slowed it down even more.

Oh to have a crystal ball...!

Beverley x
 

maryw

Registered User
Nov 16, 2008
3,809
0
Surrey
Hello dancingmum and welcome,

I think you'll find many friends here and lots of people challenged by trying to "juggle" their lives, keep everyone happy and try to stay sane themselves.

It can be quite lonely out there as the outside world doesn't come into such close contact with your relative as you do, so it can seem like you're the only one who notices the change in their behaviour and then it is oh-so frustrating as Bookworm says. TP offers support and friendship and I cannot praise it highly enough.
 

Izzy

Volunteer Moderator
Aug 31, 2003
73,996
0
72
Dundee
Let's hope they both stay as good as they are for some time to come!! Take care Izzy x
 

dancingmum

Registered User
Sep 29, 2009
15
0
West Midlands
what wonderul support

How great it is to be able to talk to people who know what you are going through. I appreciate that the scale is only numbers and our consultant said that when the individual is very intelligent sometimes they can get an unrealistically good score on the test. It just helps me look at potential deterioration, a kind of chronology to it all and it has certainly helped me see dad as part of "the bigger picture".
I am in the system ; have had OT input, social worker etc but at this moment mum and dad don't want any outside input; I know it is there if needed in the future. Mum and dad have always been v devoted and done things together so want to carry on that way as long as possible. Dad did not enjoy the 8 week assessment period at the hospital; he went 1 day a week and it really stressed him but he went along with it bless him. there was an option for him to attend a club once a week but he refused.
I am v much on my own as a carer; only child;widow; have 2 fab daughters who are always there for me but i worry about holidays and such like.
my job has actually helped me keep a balance and several of my colleagues are going through what i am but being the boss i like to be there for them which in itself can be waring.
 

dancingmum

Registered User
Sep 29, 2009
15
0
West Midlands
thanks again bev

Hi



Given that they still believe he has at least some margin of vascular dementia, I do all I can to help keep the physical risks to a minimum to avoid further strokes. He has aspirin every day, takes medication for high blood pressure and cholesterol. I manage his diet and make sure he doesn't have anything too unhealthy (apart from the pack of biscuits he has every day!:rolleyes:) I try to manage his diabetes, but given that he cannot remember buying or eating the biscuits, it's a battle I don't always win.


Beverley x

Dad is on exactly the same meds; he sometimes forgets he has eaten so eats more than he should!!!!! Dad is on amisulpride (v low dose) and paroxetene(is that how you spell it?)He has put weight on but he was v thin
 

BeverleyY

Registered User
Jan 29, 2008
716
0
Ashford, Kent
Dad is on exactly the same meds; he sometimes forgets he has eaten so eats more than he should!!!!! Dad is on amisulpride (v low dose) and paroxetene(is that how you spell it?)He has put weight on but he was v thin

My Dad eats 3 biscuits with every cup of tea, and he has a cup of tea virtually every hour.

He then tells us the children have eaten all the biscuits, and that he only has 2 biscuits a day at the most.... because.. he's a diabetic, and he knows he has to be good!:rolleyes:

My doctor told me you can't battle both illnesses... let him have the biscuits, and control the spikes in sugar with insulin if his blood sugar gets too high.

Beverley x
 

momkey58

Registered User
Aug 17, 2009
9
0
Somerset
Mum has Vascular Dementia but her Consultant decided to try her on Aricept for a while. It made her very much WORSE so it was stopped after a month!

I agree with what you all say about scores. Mum's has hovered around 22/24 for a couple of years now but she is most definitely a lot worse. The test doesn't measure how anxious or confused she is and as she is a very intelligent lady I watch her talking her way into letting us think she has got the answers right to some of the questions!

There has been a different doctor each time - in fact one of them was so hard to understand that I couldn't have answered when he asked her to spell WORLD - we didn't know what he was saying until he had repeated himself 5 or 6 times. How embarrassing!

Still it made us laugh - that is the best way to get through this I find!
 

dancingmum

Registered User
Sep 29, 2009
15
0
West Midlands
sense of humour essential

Still it made us laugh - that is the best way to get through this I find![/QUOTE]

We have to laugh or else we would cry...know what you mean about not understanding...dad locked his credit card up the other day and i tried to sort it out by phoning HSBC. Obviously they needed to talk to dad and take details etc but the lady confused him so much i took the phone back and explained she would have to speak v slowly and clearly duuuurrrrrrr....got there in the end and just had to laugh....
Sorry to hear about the drug problem; maybe when they deteriorate slowly the drugs would not help anyway and I have heard the side effects can be horrendous.
I think, as someone previously wrote we have to focus on what our loved ones can still do rather than what they can't. As Head of a special school for profoundly disabled children I know i can do this professionally; just need to transfer my positivity to my home circumstances .
 

Forum statistics

Threads
138,134
Messages
1,993,244
Members
89,789
Latest member
Anne Paterson