Today was D-Day

Rachael81

Registered User
Dec 31, 2015
59
0
Dewsbury, West Yorkshire
Hi all!

I've already posted a couple of messages on the "memory concerns and diagnosis" section. Today was Diagnosis Day or D-Day for short. And after a few questions and looking though notes my mum's been diagnosed with the early stages of vascular dementia. Her CT scan shows 3 areas of the brain that have already been damaged by mini-stokes and she's been on a blood thinner and statin for a year now since her first TIA. She doesn't smoke and is a healthy, moderately active 74 year old. I don't know what else can be done to reduce her risks of other "events" that will lead to more brain damage and therefore more symptoms of dementia. She also has a blockage in an artery within her thigh which affects her walking speed and distance.. Basically it seems that all her arteries are causing problems as the TIAs have been narrowed down to a blockage in her neck.

Her doctor today said we need to notify the DVLA and insurer on the car but for now if she's happy she can drive. I completely disagree with this: we don't know if and when she'll have another TIA or a full blown stroke (and the stroke specialist said these were likely) - is getting behind the wheel really safe? Not just for my mum or anyone she has in the car, but for anyone on the road/pacement around her!

The doctor also described her as having mild and early dementia, but I'm almost loosing my temper with her everytime I see her. The repeating information, the worry of has she managed to cook a meal, the longer than 28 days between repeat prescriptions is really getting to me and it's been 6 months since GP referred her and a year since her first TIA. I'm not sure what to do as mum believes she's not ill enough to require any assistance or support. All her appointments seem to have fallen in "good" days and she forgets to tell them what she's forgotten.

She's lost a little over a stone in the last year, she's 5'7" and only 8st 4lb. I'm fearful that she's not eating if I'm not there, she says she is but I think she might forget she's forgotten.

As my mum had me slightly later in life I'm only 35, only moved out of home 6 years ago and only a year into a relationship with the guy who's been my rock through mums health scares and problems. I have a good boss that I can talk to, who I've nearly cried in front of, and who I've told I will ask for flexible working if I need it in the future. It's just been a lot to take stock of during the last 1 year 10 days.

If you've stuck with me this far, thanks for reading I just needed to brain dump somewhere!

Rachael
 

Amy in the US

Registered User
Feb 28, 2015
4,616
0
USA
Hi Rachael, and if nobody has said, welcome to TP.

I'm sorry to hear about your mum but good for you for getting the appointments and diagnosis.

There is so much about dementia that is slippery and confusing and hard to understand, but sometimes you have to go with your gut instinct. If you are concerned about her driving, then by all means have the doctor report things to the DVLA and get her away from the car. My own mother drove for some time after it was apparent she should not and I can't tell you how many sleepless nights I had worrying she would injure or kill someone. Get rid of the car and sleep better!

My mother was also someone who said she was cooking and eating regular meals, but was not. She ended up losing a lot of weight and becoming malnourished. Again, listen to your instincts.

You might find some of the excellent information and factsheets from the Alzheimer's Society helpful. When you get a chance, have a look on their website. Here are a few to get you started:

About vascular dementia: https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=161

About the progression of dementia: https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=133

About caring for someone with dementia: https://www.alzheimers.org.uk/caring

There is a section in here about repetitive behaviours: https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=159

Many families report that the earlier they get in help and start activities such as day care, lunch clubs, et cetera, the better, as the PWD (person with dementia) will only get more resistant to help and changes in routine. You may have to gently insist, or have the doctor "order" the carers visits, or use some subterfuge (sell the carer as a friend of yours who needs extra income). Help doesn't just have to be carer visits, it could also be help with cooking, shopping, errands, cleaning, grocery deliveries, sending out the laundry, a handyman, a gardener, anything to remove some of the burden from you.

If you've not yet sorted out the legal bits and PoA, that is something I'd do sooner rather than later.

I know what you mean about appointments being on good days, and your mum not telling them things. My own mother (73, Alzheimer's and no short term memory) can still put up an incredibly good front for the doctor or whoever, but can't sustain it very long. It is sometimes called "hostess mode" and can be an amazing ability to appear with it and compos mentis. In my mother's case, she would decompensate the minute the appointment was over and sort of collapse in the car. It's probably better if you send information to the doctor ahead of the appointment (fax 2-3 days ahead of time and then take a copy with you, to hand over the desk) or subtly hand the doctor a note or whatever as you can't rely on your mother to accurately self-report.

And many of us definitely know what you mean about the PWD (person with dementia) not being able to understand that they need help, and so refusing it, when it's desperately needed. It's hard to know if this is stubbornness, part of the disease, or both, but you might want to Google "anosognosia in dementia."

There is lots of good information here on TP, in old and current threads, and never hesitate to ask questions. I know I do a lot of reading here.

Best wishes to you and your mum.
 

Shedrech

Registered User
Dec 15, 2012
12,649
0
UK
Hi Rachael81
A warm welcome from me too

I see you are in Dewsbury - have you come across this
http://www.kirklees.gov.uk/beta/health-and-well-being/dementia.aspx

I do agree that getting as much help as you can as soon as you can makes life easier - I have found Kirklees helpful, so do contact the Gateway to Care - you may need a GP referral, so have a chat with your mum's GP

Does your mum actively want to drive - or is she herself amenable to a bit of 'emotional blackmail'? My dad had several TIAs too and his sight was affected so he was 'happy' to accept that this meant he shouldn't drive - is there something that would work as a reason for your mum? I may add that as soon as he agreed, we sold the car so it wasn't around to tempt him. I believe it was a relief to him as he was finding driving much more difficult than he wanted to openly admit.

Have you found this too
http://www.ocagingservicescollaborative.org/wp-content/uploads/2013/03/Compassionate-Communication-with-the-Memory-Impaired.pdf
It's a useful guide - though I doubt if any of us manage to keep to it all the time - we're only human :)

I hope you are mooching around the site as there's lots of helpful information
Do keep posting
Best wishes
 

The Chewtor

Registered User
Feb 6, 2016
295
0
68
Gillingham, Kent
Hi Rachael, yes we are sticking with you and pleased to do so. even when you are not getting posts back many people are still here and keeping a watchful eye on proceedings so you are never alone. they just do not jump in until you really seem to need it.

like your mum I seem to only get appointments on good days, I do not believe that I am any great need of support yet and probably do forget what I have forgotten so do not even realise that a problem is there some days.

keep on keeping on she loves you whether it shows every day or not

wayne
 

Rachael81

Registered User
Dec 31, 2015
59
0
Dewsbury, West Yorkshire
Hi Rachael, yes we are sticking with you and pleased to do so. even when you are not getting posts back many people are still here and keeping a watchful eye on proceedings so you are never alone. they just do not jump in until you really seem to need it.

like your mum I seem to only get appointments on good days, I do not believe that I am any great need of support yet and probably do forget what I have forgotten so do not even realise that a problem is there some days.

keep on keeping on she loves you whether it shows every day or not

wayne

Thanks Wayne, one of the hardest things she forgets most is to say "love you" as part of goodbyes - even if I say it to her!