Evening all, just found this site seems very useful. I am the carer for my wife who has vascular dementa and just to confuse the issue macular degeneration, ( advanced she is registered blind) She was diagnosed in hospital, by the dementia nurse, in august 2022 but had a mind assessment in may ( the hospital in their wisdom) wanted to do a scan but insisted that the speak to my wife to ask if she wanted the scan, she has dementia, she had no idea what she was supposed to have a scan for so said no. And in consequence we have never seen or spoken a consultant. I did ask the GP but the answer was unless she gets aggressive they can not do another, so we just have to live with it ( at this point the GP who is a friend told me she had vascular but that it was unofficial) . So we wait and watch as my poor wife goes down hill ( she of course has no idea that anything is wrong ). Apart for the endless stories and total forgetfulness the latest is she sometime thinks i’m someone just visiting and will go home soon to my family ( we have been inseparably for 43yrs so who am i ) worrying, at the moment it doesn’t last long. Wonderful disease dementia, someone was having a laugh when they thought that one up.
Welcome aboard. Nice to meet you.
Welcome. Have you claimed Attemdance Allowance for her? If so, then you can also claim exemption from Council Tax.
Hello @tonebear and Welcome. You’ll find lots of support on here from other members or from the articles and news sections.
There is a thread called “Roll Call” which is a general chat area where you’ll find some of us chat and changed experiences and is a great place to start finding support and advice/info. You can have a laugh or a moan about almost anything on there too. You might like to have a look and if you want to post a ‘hello’ I know you’ll get a great welcome.
Dementia is so cruel - particularly when you are caring for someone you love so much. Try to stay strong and draw on the help available on here.
Hi Tonebear, welcome to the forum.
There are carers on here who have experience past and present of caring for someone with dementia and/or visual impairment. I’m sure they’ll be along to offer advice and support.
The more general pressures of caring we all get so this is a good space to ‘say it as it is’ as we ‘get it’.
Hello Tonebear welcome to the forum
Sadly my late husband suffered strokes vascular dementia and other health issues.
Have you power of attorney? If you have you can make decisions on behalf of your wife. However, your wife having a scan may prove difficult as she probably hasn’t the capacity to keep still etc during the scan. Would be extremely distressing for her. Especially with her sight being very impaired. This is my humble opinion by the way. My husband had a complex bowel problem but the consultant explained she dare not do a scan because if his mood changed she could do more damage to him. Couldn’t have general anaesthetic.
I understand the awful feeling when a loved one confabulates. I found it bes to go along with it, especially if a happy confabulation.
I’m really sad for you. It’s a terrible illness as you say.
I’m sure my reply isn’t much help however keep posting and we are listening
thanks Pet66 bit hard to take but i’m learning. Most fortunately of all is my wife is and always has been a happy non aggressive and non demanding person, i’m a very lucky boy.
Another thing one has to learn to swallow is piglet time or dead slow and don’t push or it gets slower.
Welcome. Sending some warm empathy and sitting alongside you. I looked after my Dad who had congestive heart failure, which led to strokes, transient ischaemic evens, vascular dementia alongside a myriad of other health issues incl rheumatoid arthritis, and bladder cancer. He passed in 2020 and I look after Mum who has cancer.
I hope you don’t mind me saying but I’m a little confused - may I ask/clarify:
- the nurse diagnosed your wife had dementia and
- the MIND assessment and your GP-friend assumes it is vascular dementia but there’s no actual diagnosis or test that has been done?
- you have to wait to see if your wife has more difficulties - e.g. behavioral-aggressive they cannot do another test?
The reason for my confusion is that vascular dementia that my Dad has is usually linked to poor heart-health. It is only one of several different kinds of dementia: Types of dementia
I am not a doctor, nor an expert but from the outline of what you’ve mentioned, it could be worth getting a specific diagnosis done, as there could be some therapies to slow the progression, depending upon the diagnosis. Perhaps this doesn’t change anything but without a specific diagnosis and only an ‘unofficial’ diagnosis, you’ve no clarity…
Could you ask your GP for a referral to get a specific dementia diagnosis and treatment recommendation? Or perhaps contact https://www.dementiauk.org/ for their advice?
FYI Medication for dementia symptoms
Perhaps a memory clinic or request for a specific dementia diagnosis could help?..I don’t want to give false hope I just don’t like the ‘we just have to live with it’ approach suggested by your GP!..
It’s heartbreaking I know. FYI Dad’s vascular dementia impeded his cognitive, logic reasoning, he reminisced for hours about the past but he had a strong awareness of who we were, he became very frustrated and shifted moods rapidly; cantankerous…we had a psychiatrist do memory tests and he confirmed what we already knew vascular dementia diagnosis.
I hope I haven’t overstepped, I felt the need to reclarify and recommend you push the medics for more investigations and clarity, or investigate WHICH type of dementia/confirm vascular dementia. You may find that there’s something more to support her
Sorry only just seen this. Yes you have that exactly right. I will think on it but my feeling at the moment is, she has it and nothing will change that. All the relevant people know she has dementia. And ontop of all that she is 91yrs old so nothing I or anyone else can do will make much difference. If that sounds a bit uncaring, it’s not, it’s just why put her through a whole lot of tests and other stuff for no real gain. I would not want that to happen to me so don’t inflict it on her. Hope that all makes sense.
P.S. she is perfectly fit at the moment and quite happy and content.
Me again, just reread your message. I believe that the vasular was brought on by the fact that she had several episodes of sudden blood pressure drops brought on by pain, mostly, about 3yrs ago and this would have reduced the blood flow to the brain as it made her unconscious for a few minutes and when she came back very tired for the rest of the day. Went to hospital in ambulance on several occasions but nothing found ( at least that i was told about).
@tonebear I hear you and completely understand, It’s not uncaring at all! It’s taking the quality time rather than running through the gauntlet of tests etc. i would probably think the same for my dad if he was at that age. Any and every trip to a hospital is exhausting.
You’re both obviously making the most of your quality time together.
Tonebear - Graham had several episodes of blacking out in the last year (ambulances called but only taken in once and I took him to A&E once) - even though they saw what was happening, no one could find a cause til his BP was dangerously high and I got him to a NP at the surgery who took one look at him trying to stand and walk towards her in the waiting room and sent us straight to hospital. After ten days of tests they diagnosed Postural Hypertension. He’s now on high dose meds and BP is reduced a lot, but that leaves him exhausted - we don’t know if that is still from the stroke or the hypertension!!!
Even our wonderful GP said 'OK so now we have to play around with meds to see what does the trick - this will take a while… He’s now happy with the levels, so that’s a better sign.
Graham was exhausted after his time in hospital and it left me shattered gong back and forth each day. Having to take each day at a time is also tiring…
yeah, everything starts to revolve around going to hospital and when you get back a meal and sleep is about it. Done that too many times inthe last few years, I begin to realise i’m not a young man anymore.
Exactly, for me it was dog walk, breakfast, ring hospital, quick chores, visit and drive home (30 mins each way), dog walk, admin, food, update family/friends, sleep!