Vascular dementia with Altzheimers Diagnosis

[OlafLovesAnna]

My 74 year old dad has been diagnosed with the vascular dementia and altzheimers and put on medication.

He is pretty well.at the moment although his short term memory has deteriorated massively. He is also starting to get lost in our smallish village and have brief outbursts of anger at my mum who is his carer. Getting cross is very put of character for him but it's usually as a result of becoming confused about something.

My post here is really to ask how long was it for your parents/relatives with a similar diagnosis before they were seriously confused and unable to be at home?

He is very physically fit and still has a social life as a couple facilitated by my mum but won't engage with any ‘old person’ (his words) services, so my mum never gets a break.

I’m wondering if we are looking at an inpatient setting 5 years down the line, or 2, or 10? Or whether he’s likely to remain as he is for a number of year's and stay at home?

I’d love to hear your experiences

My experience is no two cases are the same. Everyone is an absolute individual. Tough news to receive . The way you pursue him to get help on your DM’s behalf is critical. If you nag him right now you might make him adopt a rigid stance to receiving support for him or her. Come up with a plan before you speak to him on the subject again. Your window of opportunity only remains open for a while.

It's so tricky as they are pretty much both in denial about it. My mother thinks if she basically takes over the 'adulting' then she can maintain the status quo but the stress on her is huge and she is now on BP meds and beta blockers.

I guess it's one of those things where we have to take it week by week really. We have LPA and my brother is helping them manage their finances so they will accept help from us and have a cleaner etc so that's all good. I thing the difficulty will come when he needs actual care.

Glad to see he has signed a LPA. Does he also have an up to date will and have you talked through advanced life directives with him? Do you know what he would like for his funeral? Might be a good idea to do that with both your Mum and Dad together so he doesnt feel singled out.

Apart from that, its difficult to advise you what to do specifically as everyone is different. Is he accepting of his diagnosis? My FIL went through the stages of grief when he was diagnosed and it took him a while to adjust to his new normal and accept that he would need to have help and support going forward (and not fight it)

Some practical elements, see if you can get your Mum and him used to using a reminder system for everything, so apps and calendars or lists on the fridge and alarms. The earlier you can set that up, the more chance he has of retaining it as his memory declines and it will protect his independence for longer.
If they have gas cooking in the house, consider changing it for induction - less dangerous if forgotten
Can he start a habit of always having a smart phone on him? Then you can track him if he gets lost
Can your parents set up a very regimented routine around the house, so always having clothes and toiletries in the same place and he always wears the same thing/uses the same brands…eats the same breakfast…does the same household jobs. Routines are his friend and will keep him independent for longer.

Firstly, sending you much love. This is a horrible thing for all of you to go through. My family member was able to stay at home with their partner and with carers coming in. Vascular dementia has an average life expectancy of five years , which is both awful and a blessing at the same time.

My step dad has vascular dementia and my mum is his carer. I would strongly encourage you to look at getting some respite /support for your Mum now. If your dad is resistant you could start slowly - for example a day centre that they visit together, with the aim to her leaving him there in the future. We didn’t support my mum enough, until a crisis hit. She got shingles (probably because of the stress she was under), and became physically unable to help him, and had a breakdown at the same time. It was hell - because you can’t just get care in overnight. My siblings and I had to basically take shifts caring for them while I desperately tried to find a care company with capacity to help. Social services won’t help, because you are there to do it for them. What I did find was that there are actually quite a lot of dementia related support services out there - for the patient, and their carer. I honestly wish we’d known that and engaged with them earlier.

My dad has vascular dementia and went down hill pretty quickly losing the use of his hands and inability to walk. Fortunately he had the good sense to tell social services he wanted to go into a home and not be a burden to my mum. He lived for another 8 years. Some days he knew us and some he didn’t. I would do anything to avoid having my children go thru the experience with me.
I am sorry for you and your mother but you need to get her some help. Apply for attendance allowance at the least and use it on carers, if only to give her a break.

My mum took about 5 years to decline rapidly but she didn't have any carers/partner at home for those years.
Social services got involved and after another 2/3 years I insisted she go into a home. She did pretty well it helped her a lot.
I totally agree to get some care/help in now and start the process slowly. As it's so difficult to find good carers overnight.

The Alzheimer's Society runs a Dementia Connect service that can signpost you to support in your local area for you or either of your parents. Even if your dad doesn't want to engage, it may be that your mum can use some advice or support.

There are assistive technologies that will help your dad stay living at home for as long as possible, and they can help with reminders and wandering. And some areas have Dementia Cafés where you can just get a cup of tea and chat in a friendly environment.

I think you need to see both your father and your mother as in need of support for this disease.

The Alzheimers Society can point you to support for your dad and to groups that support both Alzheimers sufferer and carer.But there is not much you can do to stop the progress of the illness in your dad. It progresses differently in different people so probably only those who know him and his medical details will be able to comment sensibly.

But you can do a lot to support your mother who will be the most impacted, and the most damaged, by this. Ideally she should start to get into the practice of having several sessions a week away from him and away from the home - going for a walk with a friend, helping with reading at the local school, joining the local Women’s Institute, taking up Japanese classes etc. The important thing is for her to be able to be herself and to relax by doing somehing other than being your dad’s carer. If she starts to do everything for him on a 24/7 basis she will also become ill.

Hopefully you/she will be able to arrange some respite cover to deal with your dad while she does this.

Sorry to hear your news.
My parents were the same and tried to “contain” the illness. They wouldn’t go to any dementia groups or coffee mornings or anything like that. I think they were massively in denial too, and tried to keep everything as normal as possible.
Unfortunately when they started to need help it all fell on my shoulders. Then once you’re in that situation it’s hard to get out of - you don’t realise how much you’re doing as it’s all gradual.
Looking back, there was never a period of stability. It took only 3 years from diagnosis for my mum to need full time care in a home. This was from a relatively high level of functionality.

I wish they had sought advice and help earlier but I understand why they didn’t.

Thanks so much for all the advice - it's so hard to be supportive without feeling as if I’m railroading them.

My dad used to love technology and has an up to date iPhone which he always carries and I set up find my friends on it after he got lost the first time. He is also quite keen on Alexa switching the lights on and off so that will help if he ever gets less mobile.

He obviously feels a but useless at the moment having gone from a very cerebral job to a busy retirement to not functioning very well. They sometimes pop up to see me and he is desperate for me to give him jobs to do and is very happy to carry boxes to and fro to the garage.

Brain function is so odd though - he could remember today that my daughter invited him to her Brownie badge ceremony last week but couldn't remember where my kitchen is (and I live in a bungalow!)

There is a great Age Concern centre close by so I may say to my mum to maybe go up there to see if there is a carers group and maybe there will be an activity that my dad chooses to do too. They are just so touchy about being labeled ‘old’.

He would really hate to be a burden and have the family doing intimate care but neither of them are really thinking longer term than the next couple of months. My mother booked a 3 week river cruise for them both in the summer but who knows whether he's going to be well enough.

My auntie has just been diagnosed with early stage vascular dementia- no advice but sending xx

I know this is brutal but my dad had vascular dementia. He went downhill in quite large steps. One week he was capable of walking a good few miles. The next he had lost mobility, a lot more memory, continence and was headed into a home. That sounds awful but it was an easier transition than the very slow slide. He was only 14 months in the home and died peacefully in his sleep.

So sorry to hear about your father's diagnosis. My dad was diagnosed just over 3 years ago. Sadly we lost him on Tuesday from what they think was a massive heart attack, but we are awaiting the post mortem. The huge steps he declined by was shocking, and it was a massive strain on my poor mum as he was up at 1.30am every night . Everyone is right ,the carer needs as much support as the patient in my opinion x

It depends on so many things. If they get an illness or break a hip, for example, they often don’t go back to being as well as they were before.
You need to think about what would happen if your mum couldn’t look after him suddenly.
We got my MIL a social worker and she was very good at getting her to accept the help she previously refused. She was basically told that she would be forced into a home if she didn’t accept help.
I agree that your mum needs respite and support.
Have you got SS involved yet for an assessment ?

GoodnightGrandma no SS haven't been involved yet. Is it best to get the ball rolling early with that?

The memory clinic nurse comes every couple of months but that's it so far.

Just be aware that people either alzheimers often lose the ability to follow even a simple process do technology may become just another thing to cause stress. My mum used to buy stuff over the Internet all the time but can't get the steps in the right order now. Last summer she got stuck on buying a new pond pump and by the time she told me "the stupid site isn't working" she had 10 in her basket.

@countrygirl99

Just be aware that people either alzheimers often lose the ability to follow even a simple process do technology may become just another thing to cause stress. My mum used to buy stuff over the Internet all the time but can't get the steps in the right order now. Last summer she got stuck on buying a new pond pump and by the time she told me "the stupid site isn't working" she had 10 in her basket.

That reminds me that we found very useful “spyware” that allows you to control one computer from another. Saved having to go round every time he rang to say his computer had gone wrong.

My dad had the same diagnosis. I would say it was five years from "I think there's a problem" to his death.

The last two years were horrific, for him and for us, he became very aggressive. We couldn't get anyone to provide home care because of his violence. Before the dementia he was the calmest, most polite man you could ever meet.

I think his case was extreme though, I haven't spoken to anyone who's had the same experience we did. Most people I know with family members who had dementia usually say the forgetfulness or incontinence has been the most challenging issue, not that their dad is trying to bite them!

If he doesn't already have it, Attendance Allowance can be payable, it's a non-means tested benefit. Also, he might be disregarded on the Council Tax bill, check with your local authority.

@OlafLovesAnna

GoodnightGrandma no SS haven't been involved yet. Is it best to get the ball rolling early with that?

The memory clinic nurse comes every couple of months but that's it so far.

Other people will know better than me, I know we needed it with my MiL. She was given a social worker. Hopefully others will answer this for me.

You said your Dad is ok with Alexa? Hey him to use the reminder facility such as to leave the house in one hour or to take medication at a certain time. You can set this up for him.

I think you've had very good advice

Mum and dad are kind of managing and don't want harp at the moment, so linking up with places like Alzheimer's society and age concern for information is very useful right now
Dementia declines in different ways for different types and different individuals - vascular goes down suddenly in drops and Alzheimer's can be a more even decline in stages - and some people can manage for years at home and some people can decline quicker and need residential care earlier.

Social services don't do "just in case for the future" - they more do crises when it is clear what someone needs but their websites are great for signposting to what is out there , as are the local offices of the organisations already mentioned

It's great that your dad is so physically fit, that bodes well as does if he is eating well and socialising where possible. They all keep him stimulated, routine helps.

Look into what Alexa can do- as you can set reminders in it and can connect to video chat set on a device and make internet calls by asking "call x" which helps when someone forgets numbers (but also can result in multiple repeat calls!)

Care not *harp