Vascular dementia - don't know what to do or where to turn

[FreckledLeopard]

My mother has had a series of TIAs over the last six or so years and last year was diagnosed with vascular dementia. She has always been pretty independent, active, outgoing. However, over the course of the last 9-12 months, she's gone fairly rapidly downhill. Her short-term memory is bad - she repeats herself lots. She has also lost confidence in her ability to do things. She now sends all paperwork to me, refers questions to me and is increasingly fearful of doing anything out of her routine.

She's managed to get lost twice now, coming to visit me in London - each time she's had written instructions and her phone with her, but this hasn't helped. I tried meeting her off the train - she got off at the wrong stop.

I've just had her call me, hysterically crying, saying she doesn't know how to get to the station to get a train tomorrow to see DD's new school and my new house. I'd written down instructions, talked through them, but she got it into her head that the plan had changed . I said she didn't need to come, which made her cry even more because she wanted to come. She seems to have calmed down now, understands the plans and is still planning on coming to new place (where I will collect her in car).

BUT, I really feel shaken by today's episode. I'm an only child. I'm only 30. My dad died when I was seventeen. I'm getting divorced, starting a new job in a new place and it feels like my mother is being taken from me when I still need to rely on her. It's a kind of role reversal - I have to try and take care of her, myself and DD. Her brothers and sisters live miles away, there's no other support and I have to work full-time to keep roof over mine and DD's head. I can't move closer to my mother at the moment as I need a job. I'd rather she stayed in her own environment and home to try to keep her bearings, rather than moving closer to me.

I don't know what to do. Or what's best. She was sobbing that she wanted to go into a home. She never cries but is getting more emotional week by week. She panics now. She's only 73. GP/specialists say there's nothing they can do to help.

Anyone got any pearls of wisdom?

Not sure I can help but I can certainly empathise. My mum has not been diagnosed with dementia although she is under the memory clinic, but what you describe is her to a tee. I know she can't go anywhere alone now - she constantly forgets where everything is in her flat, is pretty disorientated whenever not at home, is scared of getting lost, locked in strange toilets etc. and can't make simple decisions without referring to me.

It must be really difficult for you being too far away to pop in. On the plus side if she actually wants to go into a home maybe she should - preferably close enough for you to visit. As she's been diagnosed with dementia can you not get some help e.g. attendance allowance? This money can be used for whatever she most needs it for like maybe taxis to you if that's at all viable?

Thank you for empathy. I just feel so out of my depth, especially as she's gone downhill so quickly. I will look into attendance allowance etc - didn't occur to me to do any research into that area so will see what's what.

Has your mother gone downhill quickly or has it been gradual? With mine it seems like there's a plateau, then a sharp drop, then plateau again. It's not slow and steady.

My mum's seems slow and steady for about the last 6 years. That may be why she has not been diagnosed. My aunt-in-law had dementia the last few years of her life and it was definitely sharp drops and plateaus - her doctor also explained that that is the usual way with dementia.

In a way I am happy not to be told my mum has it (yet) but on the other hand I feel I am dealing with all the symptom anyway. When I take her out it's like taking a child - I have to think of everything, make sure she doesn't fall over, get lost or lose anything. I only have to step away for a second and she's panicking that I've disappeared. I love my mum but I miss the 'real' her that I used to know.

DPs Mum went through this stage with her vascular dementia, it was upsetting and worrying all round but we did get our heads together and found ways to cope.

There is a lot to take in and do when you first get the diagnosis. It sounds as if your Mum still has capacity and if this is the case now is the moment to get things like Lasting Power of Attorney, discussions about wishes, appointee for pension service, third party on bank account etc so that it is all in place if they are needed. This is not easy but really important.

DPs Mums wanted to stay in her own home and be cared for by family as much as possible so we have worked with in mind that all the way along. She doesn't have many financial resources so has a care package from the council which DP is in charge of and uses to pay carers to help her at home. To begin with she just needed someone going in a couple of times a day but now it is 24/7 and her care package is similar to what the council would pay if she was in residential care. I used to help out now and then but I'm now on the rota of paid carers as its the only way to stretch the budget.

If your Mum would pay her own care home fees she could choose to start by having a live in carer to help her organise things and might even find this is manageable for a while.

Maybe the most important thing to say is that although DPs Mum used to get upset about things, as you describe, these days she is mostly happy most of the time and knows she is loved. She gets grumpy at times but then she needs complete personal care, help with eating, walking, everything - who wouldn't be a bit grumpy. It's really tough on the family but it can be ok for the person with the dementia.

HTH a little, good luck xIs

I'm sorry to hear that this has happened to your mother. Although there are no dementia drugs for Vascular dementia there are other practical things that may help.
It may be worth asking for an Occupational Therapy assessment from the local older persons mental health team. They will be able to assess what kind of help may be helpful at home or whether she would benefit from sheltered accommodation.Going into a care home is another option but she may actually be too able for this to be the best option at the moment. If there is no OT ask for a assessment by Adult Services or both.
Also consider whether she is getting depressed. Depression is very common with dementia and should be treated in it's own right. Speak to the specialist or GP about this.
Re finances, she can apply for attendance allowance which is not means tested. She may also qualify for council tax exemption , speak to the local council about this. You also need to consider taking out a Lasting Power of Attorney. google the office of teh public gardian for more info.
She may also be able to access help from teh local Alzheimer's branch, Admiral Nurses or other support in her area. The specialist should have signposted her to these.
Hope this helps.

OP, all my sympathies to you and your mum. My father had vascular dementia for the last 5 years or so of his life and it's horrible and very distressing - as you know, obviously.

Not much specific help I can give, I'm afraid, but might it be worth contacting the Alzheimer's Society? They don't just deal with Alzheimer's; they give support for any type of dementia, and also have a forum where you can go for advice and help. It's here

ok, same info as above but just thought about something else which may also be helpful for Kikithecat.
You can get different alarms such as 'buddi' or other satnav based ones which the person can carry sos you can locate them or they can call for help. On a course last week they mentioned one which you could use to locate someone nearby eg in a supermarket ( getting one for DH!!) google ' centre for useable home technology' for more info. the rep was very helpful.

Sorry, bit of an x-post with fridayfreedom. Agree about the depression, though. Do be firm about asking for help from GPs - ours wasn't really that interested and didn't want to refer Dad for any further investigations. I've always felt that he got a raw deal and really regret that we didn't insist on exploring every avenue for as much help as possible.

Thanks for the tip Friday.

I think you need to arrange to go and see her GP with her to talk about things and get her a referral to the memory clinic. They can't treat vascular dementia, but the memory clinic is the gateway to support services.

If your mum is receptive to entering residential care, then I'd try and sort that out close to you asap. It will save a lot of heartache, and she will settle in much faster than you might think.

Its hard though - my mum is 73 too, and has another form of dementia. Never thought I'd have a young child and be dealing with all this at the same time

Yes my mother had dementia and I looked after her at home. The first period when you can't quite believe that she could possibly have forgotten everything you said quite so quickly can be irritating, but as she deteriorates you'll begin to accept this and get used to using simple sentences, and wont expect her to remember anything more than a couple of minutes.
She will probably remember her younger days much more clearly than the present, so you could try talking to her about her childhood. She really shouldn't be travelling alone as it is very frightening to find yourself in a strange place, when you don't know how to get home.
Yes, if you manage to find a home for her try to find one that you can easily get to, as it is important that you visit very regularly to check that she is being looked after properly. My mother never took drugs apart from low-dose aspirin to prevent strokes, and I would be very suspicious if your mother is given any drug in the home that makes her less responsive and lively, so you have to watch out for that. There's also a tendency in homes to wheel people about from place to place as this is quicker than getting the patient to walk, so you need to check that she is getting enough exercise too. The other thing is to visit at a mealtime - if you wouldn't like to eat it then neither would your mother. Hope things work out for you.

Thank you all so much for your messages. Things better this week. My mother is at her own place and is calm and happy. Nothing out of the ordinary going on, so when she has her own routine it's better. Longer-term I don't know what to do, but guess taking things day-by-day is the best option.

Just posting my sympathy. Dad has vascular dementia but probably Alzheimer's on top ( he's 88). He's also deaf ( leaving to shouting matches with my mum because she can't tell how much is him not hearing , not taking it in or not wanting to hear it! ..... Or even, as last week loosing the battery our of his hearing aid so he really had no idea what was going on!) and can't see well.

Alzheimer's society for advice and move on power of attorney fast.

Had a brain MRI scan and I have an increased risk of vascular dementia. Looking at the symptoms I do think it's happening.
My children won't be able to help me unless I can learn to sleep standing up in a cupboard.
I've wanted to post about this for a long time, but I'm frightened - a large glass of wine has helped release my worries.
I am so worried. know there's nothing to be done; I'm doomed and I'm pissed off.

Mary, what a sad post, though well done for admitting there might be a problem.

Having said that, with at least 2 generations of Alzheimer's in my family, I suffer from acute dementia hypochondria, but so far things improve after a good night's sleep. (And a break from the stress of looking after my mother!)

Three suggestions.

The Alzheimer's Assn is a pretty open dementia church and has a forum for sufferers.

Look at POAs now. They need only be used when you lose capacity. Discuss with your family.

Look at very sheltered housing options. Some are fantastic. Independence as long as you have capacity, then support when you need it.

Good luck.

I am 68 and thanks to an MRI scan I am at increased risk of vascular dementia. I've looked at the symptoms and it does actually seem to be happening.
I am frightened.
Two glasses of wine, so I'm posting.
So scared.
Looks like vascular dementia is here and now.

Oh Mary I am sorry. Please follow up nms’s suggestions- And try and take control. Voice those fears. And there is always support here.

Hope ive posted in correct place.
Really dont know where to go from here. My mum has been diagnosed with dementia and is getting gradually worse. She doesnt know me anymore really but loves my wife and daughter and sees them as friendly. She always carrys a bag with her now and always wants to leave the house shes in.My dad is getting very angry stressed and depressed because he cant help anymore.But he still is angry with her because he cant make her understand and always pushes her to remember people which she cant. She does say she doesnt like the angry man and wants him to go . This frustrates my dad even more.He wont listen to us and justs keeps on at her to do stuff.They dont eat properly anymore so go out everynight and try to get to peoples houses for dinner.He says i have to get her out of house as she needs to be with company,real reason my dad wants the company not mum My wife and i believe he is making her worse.He refuses to get help but wants us there all time for moral support all the time. Both myself and wife work full time and have a daughter who is 16.It is getting so draining on us and feel selfishly our lives are also on hold . We tell dad to go to drs and tell them shes getting worse but he wont. My dad is 82 and mum is 80 next. My dad is difficult to talk to because he just says "oh my fault is it,tell me off you try living with it" My mum is really bad at times but my wife always calms her just by being patient and caring.Something my dad doesnt do . My dad always been in charge always his way very regimental. My dad takes everything my mum says to heart,we keep telling him mum is ill. He just wont listen and is doing this his way and basically getting everyones backs up in way hes handling things. So basically dont know how to handle situation really.My dad is harder to look after than mum. Apologise for rambling on sorry.

Greg what an awful situation. Can I suggest starting a new thread with what you have said? There are lots of v wise poster. Including social workers etc on here- but sounds like you may need to involve social services under vulnerable adult/ at risk situation.... but I am no expert. Age uk may be a useful contact.

Thank you for your reply i have hopefully started a new thread.Not sure if done it right though. Hopefully someone can throw some words of wisdom my way.Thank you