Cognitive Impairment OR dementia..

[Manchesterford]

My Mum had a series of small strokes during an operation in early 2017. She came out of the operation with delirium, and several months later we were told she had a mild cognitive impairment.

We haven't received much support, or care. She has chronic anxiety, apathy, and is often confused and disoriented. Her short term memory has deteriorated considerably and she struggles to find words. She suffers with incontinence and her balance / coordination are poor.

She is doing some more cognitive tests tomorrow and we suspect will be referred for a scan.

I am really hurting, and scared for the future. I am sad and wish that things were different. I just needed to put that down somewhere because I am trying so hard to be positive for everyone here.

Thank you for reading x

 

[karaokePete]

Hello @Manchesterford you are welcome here and I hope you find the forum to be a friendly and supportive place.

I hope you have time to take a good look around the site as it is a goldmine for information. When I first joined I read old threads for information but then found the AS Publications list and the page where a post code search can be done to check for support services in ones own area. If you are interested in these, clicking the following links will take you there

https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

https://www.alzheimers.org.uk/find-support-near-you

You will see that there are Factsheets that will help with things like getting care needs assessments, deciding the level of care required and sorting out useful things like Wills, Power of Attorney etc., if any of that hasn't already been done.

MCI will only go to full dementia in some 50% of cases so I wish both of you all the best.

Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.

 

[Manchesterford]

Thank you. Just being able to write honestly about the situation is so valuable.

I have looked at the resources and the admiral nurses have already been so helpful. Sadly the local services are very limited in East Anglia for cognative impairment.

I will continue to explore - thank you for the welcome.x

 

[Manchesterford]

Mum's assessment scores have changed from 70/100 to 50/100. They say it is impossible to say what that means, and results are going back to the psychologist for him to reach conclusions. There seems to be no sense of urgency despite how much we are struggling and how distressing this all is.

 

[karaokePete]

Mum's assessment scores have changed from 70/100 to 50/100. They say it is impossible to say what that means, and results are going back to the psychologist for him to reach conclusions. There seems to be no sense of urgency despite how much we are struggling and how distressing this all is.

In my area there is also what seems like a lack of urgency. It took a few years to get an MCI and then a Dementia diagnosis for my wife.

Those scores that you mention are a lot lower than my wife and I'm surprised by the comment that they can't say what that means, unless there aren't any reports of behavioural issues. It's worth looking at the Wiki page on the Addenbrooke's Test that can be found by clicking this link https://en.wikipedia.org/wiki/Addenbrooke's_Cognitive_Examination

As I watched my wife's deterioration I made diary style notes of all major issues and then produced my notes at the memory clinic. The behaviour was worse than her scores would indicate(although she was under the usual threshold for concern) so she was sent for CT and then MRI scans. These scans showed some vascular damage but not enough to explain the behaviours that I continued to document so she was sent for a PET scan(a deeper scan than CT or MRI). This last scan showed significant vascular damage and brain shrinkage in 2 areas and resulted in a diagnosis and medication that has slowed the deterioration.

The basic message in this post is to document all concerns and keep the pressure on for scans.

To quote the Wiki page:-

"The score needs to be interpreted in the context of the patient's overall history and examination"

 

[Manchesterford]

Thank you, I think the next stage will be a push for a brain scan. In terms of behaviours, I am not sure why they aren't getting the message about the changes as we have told them repeatedly and the OT see's her every week.

 

[karaokePete]

Dare I say that the problem could be costs. Scans are expensive, particularly PET or SPEC scans, which do the deep examinations.

There is that old saying about the noisy gate being the one that gets the oil. During some of my wife’s early consultations my questioning of the treatment was met with an arrogant ‘who’s the expert here’ type of reaction. At her last consultation I was asked for my opinion on the cause of one of her symptoms and I was thanked for my input.

Keep the pressure on and I wish you all the best with that.

 

[SaraKate]

I know this is an old post but if you come back to look, I just wanted to say, that it's terribly painful and worrying to be the one who raises the alarm - especially if no-one seriously responds. Karaoke Pete is right - you have to keep speaking up until you get the right treatment. It's awfully unfair that as well as suffering the distress and the hard work of caring you also have to fight the system but this might be the case. Hang on in there, and I wish you the very best of luck.