Support for those with a parent suffering from dementia. Pull up a chair and talk to those who understand

[CMOTDibbler]

There seems to be lots of us here struggling with someone close that has dementia - be it Alzheimers, Fronto temporal, vascular, Picks or any of the myriad others.

So come and chat with those who know how it feels to have to choose a meal from a menu for their own parent, what its like having small children and a demented parent at the same time, and how you explain to children just why grandma says such odd things

[Numberlock]

Hello all

My mum is having a mental health assessment on Thursday and I'm hoping (in the sense that it will mean she will be able to get the right care) for a diagnosis of dementia.

So a question to anyone else who has had a relative assessed for the same thing - what did it involve, what diagnosis did you receive and how did you adapt their care afterwards? My mum lives in residential care but they do not offer specialist dementia care so I would need to move her, based on the results of Thursday's assessment.

Actually, the current home do have some residents with dementia, but they cannot offer care for my mum's outbursts of aggression to other residents and do not seem to think any medication would assist with this.

Thanks in advance for any replies.

[Beamur]

Hello, can I join in?
My Mum has recently been diagnosed with vascular dementia and perhaps some signs of Alzheimers - but she is still functioning very well (still working, in her own home, etc) but the prospect of what may be ahead is rather daunting - she is only 65 too.

[Numberlock]

Hello and welcome Beamur. Could I ask what was involved in your mum's diagnose? And what is the definition of vascular dementia and Alzheimers? I'm new to all this and haven't got round to researching all the different terminology.

[Beamur]

My Mum has a long term memory problem and her vascular dementia is linked to having has chemotherapy - so the bloods vessels in her body are prematurely aged. But her usual levels of forgetfulness changed and she seemed rather blank and unmotivated, plus she had some dizzy type spells - eventually she got her blood pressure checked at the GP's (and it was very high - not good for weak blood vessels) and was referred by the GP to a specialist memory clinic who have been helping to steer her back to better health. She's being treated for the hypertension, they also thought she was depressed and has had an MRI - which showed the vascular damage, I think for Alzheimers there are more tests, but the Dr she has been seeing says there are often both kinds at work to a greater or lesser degree. Treating her blood pressure should (hopefully) increase the length of time she has without too much more damage. The vascular dementia is caused by bleeding in the brain.

[Numberlock]

Thanks for that, I wonder if the stroke unit assessment that we are going to on Wednesday might show she's had a series of strokes that could have caused the dementia?

[WynkenBlynkenandNod]

My Mum's CT scan showed Multiple Infarctions I think it said, which was a series of small strokes which has led to Vascular part of her Dementia. I think the Consultant said it showed Involution which is basically brain cells dying if I understood it correctly, which indicates Alzheimer's. She also had questionnaires to complete as part of the assessment.

She did very very well on one called the MMSE, 29/30. However on the Addenbrookes she scored 68/100, where a score of under 82 indicates Dementia.

I'm still exploring homes for Mum but have found that aggression to other patients is the thing that a few homes have said they can't handle. Others have said they are trained to deal with aggression, it's part of the job so it seems to very much depend on the home. There is a term I keep coming across, EMI units, Elderly Mental Infirm. I think they are generally able to cope with pretty much anything thrown at them, does anyone know for sure about this ?

Mum's coming to look at the home with flats tomorrow. I'm not holding my breath.

[Numberlock]

Hi Wynken, yes I have also heard the term EMI mentioned.

I am just starting the process of looking at homes that cater for dementia, specifically with aggression, and am going to see two places tomorrow.

So I will let you know how I get on and pass on any advice/tips.

[whataboutbob]

Good luck Wynken, I hope it goes well, at least you have started the process and I'm sure your efforts won't be wasted. Even if it turns out the flats don't work out, you will have gathered information to help you narrow down to the best choice for her and eventually find something suitable.

[WynkenBlynkenandNod]

Thanks Numberlock that would be very helpful.

For those of you with parents at home, there is a thing with council tax once a diagnosis of Dementia is given. They then come under the heading of something horrible sounding (Severe Mental Infirmity?) and if receiving a benefit, including Attendance Allowance, exemption from Council tax is given if living on own, or reduction if someone else in house. I think this does vary a bit from council to council.

[Numberlock]

Is your mum in her own home at the moment Wynken and you're thinking of moving her into a warden-controlled flat?

[PostBellumBugsy]

Hello there, another one to join this club. Sympathy to everyone, as it is not a club you'd ever want to join.

My Dad has Alzheimers and has had a couple of strokes recently, meaning he has vascular dementia also. He is 77 and my Mum who is 79 is looking after him with some help coming in too.

I am visiting every weekend after working full time all week & looking after the DCs on my own (single parent) and it is really taking its toll. I dread the visits. It really depresses me seeing them barely coping and knowing that all the help I can give is never enough.

My Dad is like a huge toddler. He has to be watched every minute of the day & the stroke has left him incontinent, so he wears nappy type things that need changing. Fortunately, he is not agressive, but he is exhausting to keep an eye on. My Mum is not in the best of health herself, but is still in full control of her mind.

We managed to get the highest rate of attendance allowance for Dad, as he also has advanced cancer, so at least there is a bit of money coming in which helps with the extra care they need.

My biggest worry is that they live in an old farmhouse (crumbly & dilapitated), which is completely unsuitable and isolated and I'd love them to move into something more manageable, but my Mum will not consider it as an option at all. Weary sigh.

[WynkenBlynkenandNod]

Yes she lives on her own. We had drama last week when she was hallucinating people knocking on the door late at night and announced she wanted to go into a home. Looked but it's too early for the ones we saw. We did however find six self contained flats in the grounds of a nursing home. Meals provided or she could cook for herself, laundry and cleaning done, encouraged into the shower etc, trips out and others around. Then when she needed more help she could move into the main house.

If she became aggressive she'd have to move but I think it could give her a decent quality of life for a bit. And then I could have my life back which I know sounds selfish but I've had it at the moment.

[WynkenBlynkenandNod]

Welcome PostBellum and I'm sorry you're in the club too.

[Numberlock]

It would be great if you could find somewhere where she will be happy now and can also provide the specialist care she may need later down the line (including aggression).

That would be what I'd be looking for in your circumstances.

I'm in the situation of having to move my mum again after she's been in residential care for 4 years. With the benefit of hindsight, I would have moved her somewhere that covered all future options at that time. This move is going to be traumatic for us both, I can tell already.

I will let you know how I get on tomorrow.

[PostBellumBugsy]

Thanks Wynken.

With regard to feelings, I go through a roller coaster of emotions from resentfulness at giving so much of my time, to intense sadness as Dad is slowly but remorselessly lost, to extreme irritation at how stubborn my Mum is, to moments of joy at Dad's small triumphs and brief moments of "appearance".

I also feel very sorry for the DCs who have to trek down to the arse end of nowhere with me to help care for 2 difficult old people!

[WynkenBlynkenandNod]

Good luck, I'll keep my fingers crossed. I don't think I can find something that covers independence now but copes with aggression. All the ones that can cope with aggression have small rooms and offer a level of security that was depressing her at the thought of it.

I will keep looking in case I've missed something though. Can see that moving later will be traumatic but I've felt on the edge lately so would rather move her again if it came to it, once I've had time to recover, I think on balance.

[PostBellumBugsy]

Numbers & Wynken - are you (or your parent) having to fund these places? If you are, would it be worth considering live in care at home? It can often come in cheaper than some kind of residential home or sheltered accommodation.

[WynkenBlynkenandNod]

Yes Mum will be self funding for a Home (will sell house) but gets SS Care Package whilst she remains at home. I had it in my head that live in care is about £750 a week, is that right ?

[Numberlock]

My mum has been self-funding for the last 4 years in residential care, Post. I haven't sold her house yet but will need too soon to raise more funds. I can't see her being able to return home at this stage, especially as she would still be 70 miles away.

Then I have the issue of what to do when the money runs out so need to find a new home that will accept SS funding too.

[PostBellumBugsy]

Wynken, costs of care at home varies quite a bit. I'm researching at the moment, because it seems inevitable that somewhere along the line, we are going to need more than the 3 daily visits my Dad is getting at the moment.

I found one agency that starts from £62 per 24 hours all the way up to £800+ per week. There is a huge variation in costs.

[bizzey]

Hello ...I am introducing myself properly now after my silly quick post on Saturday !
Dad was diagnoised with ?early/mild Alzheimer's on Friday,and I think it has taken me till today to get my head around it and lose the "heavy" feeling I had.

Bit of background...poor dad has already got allot of of medical and physical issues and this is one we just did not want .

He lives at home with mum but I am his carer (and unofficialy mums as well !)

We have a lady coming on Friday to talk to us about help and benefits and things...but I was just wondering how long it took for any of you to notice the tablets making a difference ...he is on Donepezial(?sp reading it from the photo copied hospital sheet).

I will and can post more ..but it might get to long for now

[WynkenBlynkenandNod]

My Mum seemed to improve a bit after a week then a bit more round the 3 weeks stage on the 5mg dose Bizzey. We were told that we notice an improvement, just that she wouldn't deteriorate as much, but her Memory did improve. Unfortunately she's just come off as they were making her feel really sick, she's going to start Galatamine .

Thanks PostBellum. The ones who state their prices online in my area are £750 plus, maybe I need to ring more.

[Needmoresleep]

Welcome, if that is the right word.

My mum has been on a Aricept generic like Donepezial (the Doctor told me that Aricept came out of patent recently, and so is much cheaper to prescribe; hence apparently the Government push to do more diagnosis and care for a condition which was previously thought untreatable) for a week.

She sounds so much better. She herself says she feels "perky". The doctor also said that the treatment often has a positive impact on depression, as people become depressed because they sense they are getting slowly but surely worse.

Prior to her taking it, both her physio and the sheltered home manager had said they had seen some quite dramatic improvements in some of the people they worked with. However others either had nasty side effects or no improvement. Lets hope my mum is one of the lucky ones. No side effects so far.

[bizzey]

Thanks...my mum has said she thinks he is "perkier" already ...after 2 tablets !!...but I wonder if that is just relief ...I think he knew something wasn't "right" even though he would not admit it and it was mum and I who got the ball rolling with the GP and so on .

Different views on when to take it ..Doctor and pharmarsit said it did not matter ...leaflet and internet say night time ?due to drowsiness.

He had his 1st 2..sat and sun in the morning but I have told mum to start doing at night time now ...I suppose it will still work the same .

wynke...I scanned through the earlier posts quickly ...was it you who mentioned something about council tax help ?...If the form comes through with that title ..I had better warn mum...she is not going to handle that very well .

She is not a very "practical" person ...she worrries and always see the "black "side of things and would end up in a wailing heap on the floor !

Better stop now ! I tend to go on a bit !

[WynkenBlynkenandNod]

Bizzey there is no way you go on long as I do ! Yes it says that on the form, I haven't let Mum see it and am going to march in with my POA and make sure all correspondence comes to me - I'd hate her to see it.