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Elderly parents

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

997 replies

CMOTDibbler · 01/05/2013 09:04

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

OP posts:
bizzey · 13/05/2013 22:06

Well I told my selfish brothers tonight by phone as I did not want mum to have to do it as she would get too upset.

One said ""Well isn't that just old age ""....AHHHHHHHHHH !

Off to get paper bag to breath in now !!!!

Needmoresleep · 13/05/2013 23:07

My mums doctor said he preferred people to take it in the morning. They are strong drugs and he felt they were better absorbed when people were up and about. Suits us as the carer was already coming in in the morning. I was told Aricept would not be prescribed unless there were measures to ensure doses were taken regularly. My mother has a nap after lunch anyway so it probably does not make much difference.

The attendance allowance needs to come through before considering council tax. I deliberately did not show the application to my mother as she would have been upset. I wrote it with the help of a care professional and it was accurate. However she would have hated seeing a description of her day to day struggle to manage set out in black and white.

PostBellumBugsy · 14/05/2013 09:39

Second all those saying don't show the person concerned the attendance allowance form. We got the highest rate for my Dad and I completed the 27 page form & it was a very depressing thing to do. There was no way on earth I would have let my Mum read it.

Basically you are writing that the person is incompetent in all aspects of life & needs constant watching, care & attention.

My brother has power of attorney, so he was able to sign the form on behalf of my Dad, who can barely remember his name anymore, let alone sign it.

Hard to believe my Dad was still running his own business 18 months ago.

WynkenBlynkenandNod · 14/05/2013 10:06

I have a feeling you can sign even if you don't have POA on the Attendance Allowance. Also Mum's was turned down initially despite help from the OT filling it in. We were told a lot are being turned down at the moment.

S eons said they are turning loads down first time round. A charity helped me write a letter asking for reassessment which was successful. The lady who helped said make it clear that the help has been going on for at least 6 months and that help is needed throughout the day. I'd written lots but she said the most relevant was needs prompting at regular intervals through the day to take fluid, particularly important as she's taking water tablets.

Does anyone know anything about this £108 a week for people in a nursing home needing care from a RGN? I assumed Mum wouldn't get it but one place said they claimed for everyone and hadn't had one turned down yet. That sounds a bit dodgy to me.

PostBellumBugsy · 14/05/2013 10:25

Wynken, you can sign it without POA if the applicant cannot manage their affairs due to a mental-health problem or learning disability (which covers alzheimers or dementia) or they are too ill to sign the form themselves.

We got a supporting letter from my Dad's GP, which may have helped too.

bizzey · 14/05/2013 12:01

Dad is already on DLA high mobility and middle care rates. The form arrived today to try and up it to high care rate...but I am confused with this Attendance allowence that has been mentioned....

Is that different to DLA care rate or the same thing just without the mobility component ?

The support lady is coming in on Friday and I just need to get my facts and questions straight so I undestand in advance .

I have told him I was going to try and up his money ....bless him he understood that ok Grin and said write what you have to .

I looked into council tax reduction a few years back for him but the form gave us the impression we couldn't get it because the adaptions we had made to the house were not to be included ...ie stair lift ..bath thing and rails ?

I do not want POA for him (yet) as his bank statement reading keep him going and that side of things are ok ...just normal grumpy old man telling his wife to stop using the phone too much ....LOOK AT THE PHONE BILL !!! (They are on anytime plan and it is basicly the same amount each bill !!!)

He claims he never uses the phone ...but there are allot of mobile numbers to his sisters in Ireland !!

My "heavy" feeling has gone now thank goodness and I am back into practical mode....got a bit scared for a while how I was feeling...so not me .

I have a ds with SEN as well (they share the same birthday ) so I feel I just seem to be constantly dealing with hospitals/appointments and diagnose's
all the time and I am mum and dad's only support and i am a LP .

Wierd to say but I am looking forward to Friday's meeting as I hope it will open up new door's for dad and he will just not "vegetate away"

(Said I could do long posts Grin )

PostBellumBugsy · 14/05/2013 12:45

bizzey, I think DLA only goes up to 65 & attendance allowance if for over 65s. Not 100% sure of this, but I think that is the case.

Sympathise with you as I'm a single parent & my DS is ASD. It really does feel like a weary load sometimes most of the time.

bizzey · 14/05/2013 16:59

I have phoned and checked....i think because he was on DLA before he was 65 he stays on it ....if you claim for care after 65 it is AA....I think !!!

Dad needs night time care now so going to try and get high care DLA.

I have got the form and wierdly know all the answer's for him....but am still struggling to fill in ds3's 1st DLA form Confused

bizzey · 15/05/2013 17:55

What a S*T dAY ....tHIS IS GOING TO BE LONG !!!...I will try and bullet point it .

  1. DWP want me to go for some interview thing to check my eligability (sp I know)...I cant do the date/time on the letter due to alz nurse coming

2)He gave me a the week later (I am being very accomadating with my diary to sort this out )...I can't do that one as taking dad for ultra sound ..bladder and kidney's need investigating Wink

3)Man said if I cant do either of these day's/times my benefits will be stopped .

I was made to feel like a fraudster...believe me I do not want to be on benefits and would love a job that gave me my life back again ....but what job is going to let me have all that time off every week to do appointments and check on him (medication/wee bottle/toilet clean up ......)

Never have I felt like I did today ...he was horrible and I burst in to tears when I put the phone down.

I have spoken to a manager person who is going to look into it but if I do have to have this appointment he will make sure it is with someone else but.....I am on Carer's Allowence and therefore reduced IC...all above board and declaired.

I know they have to check for fraud people and stuff......oh dear tears are starting now so might have to stop for a while...I will get a water logged laptop other wise ...

Bugger I thought I was made of sterner stuff than this ....but feel weak today

I do NOT want to have to be in a position that I have to look after my dad like this ...but I do ....and now they are making feel like I am conning the system ..

(said it would be long !)

Oh and I got a parking ticket today as well....disabled badge don't always work ...

bizzey · 15/05/2013 17:59

Met him at hospital today with ds3...he intoduced ds3 as his ...nephew Sad

Needmoresleep · 15/05/2013 19:14

Poor you. I have had my share of meltdown days in recent months and fell into some pretty dark holes. Probably unavoidable. However on better days I was able to believe there were more kind people than jobsworths or meanies.

It all takes so long and what ought to be a simple task never is. Hang on in there.

WynkenBlynkenandNod · 15/05/2013 21:26

Bizzey, have some Wine Flowers. Fully relate to meltdown, that was me the end of last week, I so relate to wanting my life back. Can you appeal the parking ticket ?

If we stand back and look at what we're coping with I guess it would be almost more worrying if we didn't meltdown every so often.

bizzey · 15/05/2013 22:56

Wynken..you are right ...this melt down has been brewing....nearly 4 years I have been a full time carer...holding it together along with separation from ds's dad and new home and new life for the kids 's

Can't get dad to understand what these tablets are about ...ie trying to get him to tell me his "other effects "to them ....he is really grumpy and tired after 5 days of tablets ...AHHH he is not helping mum and I to help him

....deffo need a book on how to do this !!! """ How do you NOT get annoyed at your dad when all you want to do is help him and get him back to how he was"""

Needmoresleep · 16/05/2013 08:25

Not what you need, but staff at my mums sheltered accommodation warned me that a recognised side effect of Aricept type drugs is aggressive behaviour. I dont know how your health authority monitor tolerance, but if there is a problem you should mention it as it could be drug related. We are two weeks in and experiencing the reverse. My mum's improved orientation means she is more in control and therefore happier.

I am coming out of 4 months of full on involvement, sparked by a fall. I got home and essentially took to my bed for a week, stirring only to download on MN. I was physically and emotionally shattered. You don't want your life. I don't want your life either.

Not sure what I can say other than take satisfaction from what you can, eg you got through yesterday. And prioritise looking after yourself. Is there any respite support available: day care centre, neighbours, friends, family. A sibling living further away could come down for a few days and give you a break, or even post you a cheque so you can enjoy a with family treat or a girls night out. Something that takes you away for a bit and helps you see the wood for the trees. Or allows you to remember who you really are.

In terms of books, Hugh Marriott was my friend. His Selfish Pigs guide covered the ground pretty completely. On dementia, I am in two minds about Oliver James "Contented Dementia" but found it useful to accept that the demented person was in a different reality and it was easier for you to go to them, than them to come to you. One result is that your expectations of what they will achieve in your reality, eg taking pills, being there for appointments, etc are reduced, so less disappointment and the ability to take practical steps to solve problems without relying on the unreliable. It was also useful to identify short standard answers to the ever repeated questions, which were accepted and closed down the topic.

I hope today is better. Blue skies and sunshine here.

Numberlock · 16/05/2013 19:17

My mum has had two days of tests and assessments and has been diagnosed with moderate to severe dementia, a combination of frontal lobe, Alzheimer's and vascular. So at least now I have a formal diagnosis and can work out the next stage of her care, whether it is EMI or EMD.

She will now be seen by a psychiatrist to decide whether to prescribe medication.

Beamur · 16/05/2013 20:01

Numberlock presumably this isn't a surprise to you - but it can still take a while to come to terms with.

My Mum has been taking the generic form of Aricept for a week too Bizzey and she hasn't been very well at all, although she seems to be feeling better now.

Numberlock · 16/05/2013 20:10

No it's no surprise and I'm glad we've finally got somewhere. I just want to get her in a home near me ASAP now so I can spend more time with her and so can my boys.

WynkenBlynkenandNod · 17/05/2013 07:24

Sorry Numberlock. Even when you absolutely know and are pleased a formal diagnosis has been given, it can still be hard to deal with as Beamur said.

Bizzey, how's you Dad doing ? Mum started her Galatamine yesterday (well she doesn't think she did but i did leave instructions for the carers)am hoping she can tolerate it. Needmoresleep I'm really pleased you are coming out the other side again, can only imagine how shattered you were.

It's been a much better week here. Mum seems happier and says she is more accepting of the situation. I haven't needed to do as much plus the increased care package starts Monday. Crisis over until the next one. The SW was right hen she said she wa having a blip. I think depressingly it was the Aricept.

Needmoresleep · 17/05/2013 09:48

WBN. I may have spoken too soon. My mother sounded very down yesterday, completely unlike her, and thus confused. The carer said she had been difficult since Tuesday.

My personal theory, though I will speak to the doctor, may be that the improved lucidity has increased her awareness of her decline. This would be depressing.

It has brought home the fact that though you can solve all sorts of problems along the way: hoarding, allowances, assessments, care packages, accommodation, and, and, and, you cant do much about the underlying problem, which is the dementia. No solutions, just a long bumpy road.

Numberlock · 17/05/2013 11:35

Thanks, Wynken.

WynkenBlynkenandNod · 17/05/2013 14:22

Oh dear Needmoresleep that's not good Sad. Depression is supposed to be common as people realise what's happening. My Mum rang my brother to ask him to order Omega capsules as she read they can help Vascular Dementia. I'd rather she didn't read up on it as it must be awful knowing you have it.

You're right, nothing changes the main problem . I've told my brother the current crisis is over, for now- with the emphasis on the for now bit. I'm in self preservation mode and trying to be more selfish and do things I want to a bit rather than running round after everyone else.

whataboutbob · 17/05/2013 14:57

Sending supportive thoughts to everyone on this thread.
I invited Dad to come here for the weekend, at least in part to give my brother a break (he can still just about make the trip ,3 hours on public transport) but instead he came today, I was out and he scrawled a message on my "no flyers etc" card. Must have gone straight back home poor man (well i hope so anyway). Am in 2 minds about inviting him again for the week end. It could easily be another stuff up, for example him turning up when I'm taking the kids to drama club.

MrsFrederickWentworth · 17/05/2013 15:25

Please may I join?

Ma has memory probs, epilepsy, heart, bp, blackouts, Is resisting a carer, a home and is behaving appallingly.

I have to rush now but will seek help when I get back

Numberlock · 17/05/2013 17:49

Welcome MrsF. Hope we can offer you support.

WynkenBlynkenandNod · 17/05/2013 19:24

Welcome Mrs F. Sorry about the circumstances you're here under.

Bob, your poor Dad. It's great he can still get on public transport. Can you invite him tonight to come tomorrow but with you ringing him before he is due to leave or your brother prompting him ?

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