Alzheimers - Things that surprise me

[SnowWhite]

Mum was only diagnosed about 6 months ago and I didn't really know that much about it. I just thought you went rapidly downhill and that was that. Ignorant I know but I have been to a Dementia Friendly day and am trying to educate myself.

Mum went straight on to a drug (forgotten name) to try to slow things down. It's just a low doseage and seems to suit her well.

I notice she is more forgetful if she's tired or stressed but other days she is a joy to be around and we have a great laugh.

She's in care but can tell me to go to her home and will pinpoint precisely where I am to find what she wants which I think is amazing. She recounts to me conversations she has with people and when I speak to my brother she's told him the same thing, word for word. She can tell you about a day out she had several years ago and who she was with, what they ate and where they went. She is clearly still retaining a lot of information.

However, She gets confused with what day it is and her handwriting has deteriorated and she prefers not to deal with money anymore. She forgets which greatgrandchildren belong to which grandchild. She is getting a bit obsessive with making sure she's near a toilet in case she needs to go and also about getting her meals on time.

I am learning quite a lot as I go along.

 

[Rosnpton]

Hi
I've learned so much around what to expect from this disease and what ,um is going through / what may happen in the future
Mum was initially diagnosed in 2014 and was cared for at home til Feb 2016.
We had times when she seemed to stop at a certain stage for many months and others where she seemed to change daily.
I downloaded loads of the fact sheets from Alzheimer's society which are really good to go back to and re read when things seem to be changing.

Unfortunately, I suspect a lot of carers and tp.users probably know a lot more then some gp.s, a + e staff etc
Ros

Mum was only diagnosed about 6 months ago and I didn't really know that much about it. I just thought you went rapidly downhill and that was that. Ignorant I know but I have been to a Dementia Friendly day and am trying to educate myself.

Mum went straight on to a drug (forgotten name) to try to slow things down. It's just a low doseage and seems to suit her well.

I notice she is more forgetful if she's tired or stressed but other days she is a joy to be around and we have a great laugh.

She's in care but can tell me to go to her home and will pinpoint precisely where I am to find what she wants which I think is amazing. She recounts to me conversations she has with people and when I speak to my brother she's told him the same thing, word for word. She can tell you about a day out she had several years ago and who she was with, what they ate and where they went. She is clearly still retaining a lot of information.

However, She gets confused with what day it is and her handwriting has deteriorated and she prefers not to deal with money anymore. She forgets which greatgrandchildren belong to which grandchild. She is getting a bit obsessive with making sure she's near a toilet in case she needs to go and also about getting her meals on time.

I am learning quite a lot as I go along.

 

[Amy in the US]

As I suspect is true for many of us, I found dementia/Alzheimer's to be a very steep learning curve. My mother had been exhibiting problems for some time before her diagnosis, and I knew something was wrong, but not what.

In hindsight, and knowing what I now know about dementia, a lot of her "problems" were classic symptoms--I just didn't know it at the time! I had no prior experience with dementia or Alzheimer's of any type, and had no understanding that it could affect anything other than memory, let alone executive function, visual perception, spacial orientation, appetite, personal hygiene, and so on. I didn't even know there are different types of dementia!

I find the information on the website of the UK Alzheimer's Society, and their factsheets, to be very helpful and clearly written. I still refer to these from time to time. Here are some places to get started, for anyone interested:

https://www.alzheimers.org.uk/info/...tanding_and_supporting_a_person_with_dementia

https://www.alzheimers.org.uk/info/20007/types_of_dementia

https://www.alzheimers.org.uk/info/20008/symptoms_and_diagnosis

I attend a support group and that has been a great help to me, as have workshops and lectures sponsored by local organizations (my local Alzheimer's Society chapter and others). I also read a lot of current and older threads here on TP.

I know there are a lot of books, but don't have any I can specifically recommend. I have watched a number of Teepa Snow lectures online (mostly on YouTube) and there's a lot of helpful information there as well.

I have also found the compassionate communication information helpful: http://www.alz.org/greaterdallas/documents/CompassionateComm.pdf

https://www.alz.org/co/documents/communication_strategies.pdf

 

[lemonjuice]

In hindsight, and knowing what I now know about dementia, a lot of her "problems" were classic symptoms--I just didn't know it at the time! I had no prior experience with dementia or Alzheimer's of any type, and had no understanding that it could affect anything other than memory, let alone executive function, visual perception, spacial orientation, appetite, personal hygiene, and so on. I didn't even know there are different types of dementia!

You're not the only one whose had to 'discover' this and it is one of my 'hobby-horses' why we need to educate the general public as to the true implications of the disease. Yes NHS doesn't even recognise it as a brain disease but just a social problem.