Thanks for reading

[Nat12]

Hello. My mum has mixed Vascular Dementia and Alzheimer’s. She also has had and we think is still having lots of mini strokes. She is very poorly now and on the palliative care pathway. I just read a letter from the consultant that said:
“She scored just 20 on the ACE-Ill, and a CT head showed global atrophy, with mesial temporal atrophy grade II on the left advanced for her age, along with mild small vessel ischaemic change.”
I’ve googled it all and think I understand some of it but if anyone can give their opinion on it I would be grateful.
The GP said she will get sleepier and sleepier and eat less and less and she is dying.
The heartbreak I’m feeling is astronomical. It’s hard to put into words.
Thank you

 

[SeaSwallow]

Hello. My mum has mixed Vascular Dementia and Alzheimer’s. She also has had and we think is still having lots of mini strokes. She is very poorly now and on the palliative care pathway. I just read a letter from the consultant that said:
“She scored just 20 on the ACE-Ill, and a CT head showed global atrophy, with mesial temporal atrophy grade II on the left advanced for her age, along with mild small vessel ischaemic change.”
I’ve googled it all and think I understand some of it but if anyone can give their opinion on it I would be grateful.
The GP said she will get sleepier and sleepier and eat less and less and she is dying.
The heartbreak I’m feeling is astronomical. It’s hard to put into words.
Thank you

Hello @Nat12 and welcome to Talking Point. I am so sorry to read about your mum and wish you strength for the time ahead.
I do think that it would be best to ask the GP to explain the report. In the meantime please keep posting as it can help to share how we feel.

 

[SherwoodSue]

About the opinion
I think you would like certainty going forward as to exactly what will happen now. Thing is even if you understood exactly what each of those words meant it wouldn’t help you to have any greater understanding of what happens next. Clearly nearer death than a year ago yet in the same way each pregnant ladies labour and delivery is different. Some rapid, some almost stuck , death and dying is a process and it picks its own path.

My dad had terminal bowel cancer. I could have sat an exam the amount of research I did. Tried to picture it all and prepare myself.
He fell in the kitchen and died as complications to fractured hip. Didn’t see that one.

Such a cliche yet so true
Day at a time stuff
Be good to yourself.

 

[SAP]

Hello @Nat12 , I don’t know what all that medical talk means but just wanted to let you know that you are not alone. This journey we are all on is horrendous, watching our loved ones slip away. I’m not sure having a lot of information is necessary a good thing, just making sure your mum is comfortable and well cared for uses enough energy. Take care of yourself too, it’s a bumpy ride.

 

[canary]

Hello @Nat12

Your mum has obviously got very advanced dementia now and is at the final stage, hence she is on palliative care

There is no knowing how long she will be at this stage before she reaches the end, though. It may be several months, or it may be mere days
xx

 

[winterbell]

Hopefully one of her medical team can explain it to you in more detail, but I'll give it a go,

ACE-III is one of the tests used to help diagnoise mental impairement - you can see a copy of the test here https://neurovascularmedicine.com/ace.pdf. It is similar to the mini-mental test but is marked out of 100 instead of 30.

Atrophy is a medical word for shrinkage (I can't think of a better word!). Usually it would be used to describe muscles - like your leg might show atrophy if you'd been in plaster for a while. With the brain it seems to be used to describe that that the connections in the brain (between the different types of cells) have reduced. Global is saying that is not just in one part of her brain.

The part about age, is saying it is more than you would normally expect in someone her age.
The last part is saying that there are some mild changes in the way the blood is flowing in small vessels in that part of her brain.

As others have said, its a bumpy ride, and as hard as it is, make sure you have time for you. I know that's easier said than done, and the guilt can be immense, but is so crucial to look after yourself. There is no "standard" pathway of progress, and I think we've probably all been caught out with our person with dementia, and thinking (inc medical professionals) that their time with us was reaching an end, and then a short time later they've "bounced back" a little, and we start the roundabout again. Dad was as strong as an ox, and stubborn to the end, and boy did he keep us on our toes.
Although I didn't post on here till after he died, I read the forums alot, took solace that there were others that knew what it was like, and took so much useful information and tips from different members. We're all different and need information at different points. I didn't try and take in the "whole" process in one go, and just took what info/ help I thought was going to be useful in the next short period or time. I think that helped manage all of our expectations in a way that was right for us.

Take care of yourself

 

[Lawson58]

I thought your GP explained the important things in a very nice way and maybe that’s what you really need to know for the moment.

Thinking of you.