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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

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WynkenBlynkenandNod · 03/06/2013 12:55

I'm sorry CMOT. Mum gets worse after she has a turn too, but after a couple of weeks she seems to improve.

PostBellum, that sound reall hard work, the kind of situation where you go back to work for a rest. Maybe you should refuse to do the mowing to force your Mum's hand a bit ? If you keep doing it there's no incentive for her to sort something. That was my epiphany at Easter.

My week has started. With the care agency on the phone. Mum is refusing to let them use flannels on her legs, won't shower whilst they are there as per increased care package, keeps losing her paper with the visit times nd two Carers complained about her being rude last week. How I love Mondays .

PostBellumBugsy · 03/06/2013 14:03

Wynken, I do wonder sometimes about the care agencies complaining about rudeness or uncooperativeness. At the end of the day, they are looking after people with dementia - they are not going to be pleasant and cooperative. Are the carers who help your Mum trained to deal with elderly people with dementia / Alzheimers?

Dad will not have male carers. If they come, he takes himself to bed & hides under the covers and shouts "Love" to my Mum over & over again. Having watched him cough his food out deliberately on Saturday evening, he can be really unpleasantly uncooperative too - but that is part of the condition. The man he was 12 months ago, even 6 months ago would have been horrified by that kind of behaviour.

The brutal reality is we need to stop "enabling" Mum & Dad to live in their crumbly old farm, but that is so hard. It was their dream home 35 years ago and they loved it and in my Mum's case still love it. To me it is like a bloody great millstone - but it is their dream. Dad is unlikely to live for more than 2 years because of the cancer, let alone the repeated bleeds in his brain - so the whole thing has a finite point. That's why I feel like a bitch for hating it so much - but at least I can come on here & rant a bit.

WynkenBlynkenandNod · 03/06/2013 15:28

I think the rudeness was less of an issue but mentioned if you see what I mean. She did say all carers are dementia trained and said she pointed this out to the Carers. A stack of flannels ordered plus a whiteboard for the Carer to write down time of next day's visit on. Also firm talking to Mum that Carers will vary a little in the time they arrive as depends on traffic, what happened with previous client. That it's no good talking about changing care agencies, she'll hate the next lot too and it's not the Carers fault her legs flared, she stopped her Meds , yes it was 3 weeks ago but they take a long time to go down. And breathe...

Enabling is the word that jumped into my mine at Easter PostBellum. I can see what a difficult situation it is for you though. Can your parents afford to get the help? If so maybe that's the thing to focus on. Keep ranting, we all need to be able to.

WynkenBlynkenandNod · 03/06/2013 17:02

Ooooooo, Amazon Prime membership just taken out . Things to arrive at her front door quickly, at the click of a button. That was my first major decision as Attorney and £50 seemed so extravagant I scuttled off to check with my brother!

CMOTDibbler · 03/06/2013 17:17

Amazon Prime is fabulous - you wouldn't believe the things I get for my parents on it. Urine bottles, crutches, all sorts!

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WynkenBlynkenandNod · 03/06/2013 17:27

Excellent, that has made my day Smile

I guessed are lucky that technology has moved on and it does make things a bit easier. I could order Mum's leg cream at a click of a button and the pharmacy will deliver.

One brilliant thing I read was someone using a mobile where you can record your own ring tone. They recorded a message to say Mum you haven't replaced the receiver on your phone, please put it down. The Mobile stayed plugged in then all that was necessary was to ring the number if the main phone was left off the hook. Scope for other uses I think.

bizzey · 03/06/2013 17:28

Hi all ..back on after a busy weekend. It was ds's birthday on Friday and I took him and 7 friend's bowling ....to make up for the one I forgot to take him to ....and gave them lots of change to play on the other arcade game's.....slight guilt OTT but he had fun Grin

Took dad for sight and hearing test today....he has a cateract inone eye and cannot see a thing out of it ....I never knew !!! He told the lady he has never been able to see out of it Confused.....I will check with mum later .

Hearing test was weird...my kid's have had them where they press abutton when they hear a beep at different tones ....but this one was....

Background cracklling noise and a "non word" said and he had to touch the screen of the "word"said ...he did make lots of mistakes but I am not 100% sure if it was a hearing problem or an understanding problem ?

Anyway Audiologist appointment booked for through check....

We went to Specsaver's ....is that the norm sort of testing for adults or just their way ???

Poor dad I had been telling him he was going to hear beeps and he would have to press the button Grin

Council tax form applied for and it is coming to me

DLA form completed ...not sent

Blue badge renewal completed....not sent

Bloomin heck ...how difficult is for me to remember to put them in the bloody great big red box !!!! Grin

Taking mum to the doctors tomorrow to disscuss the result of a lump she found on breast and bring up councilling for her

DS3 is having a MRI on Weadnesday

Friday all day at hospital .....

That's my week sorted then !!!

Flowers to you all

PostBellumBugsy · 04/06/2013 09:32

Glad your DS had a good birthday party Bizzey and liking the sound of this Amazon Prime thing.

No idea on the hearing test - it is forever since I had one but what you describe sounds odd & is definitely different from my DCs had.

Question on the council tax. Am I right in thinking there is some kind of reduction if there is an adult in the house receiving attendance allowance?

Also query on the Blue Badge. Dad has to walk with sticks now following his stroke. Is that enough to get a Blue Badge or does it have to be a registered disability?

WynkenBlynkenandNod · 04/06/2013 10:04

Flipping heck Bizzey, you are living up to your name. Really glad DS had a good time. I hope your Mum's results are ok. Has your DS had an MRI before ? DS had one last year and it was better and quicker than I thought it would be.

PostBellum, yes. Diagnosis of dementia is what is termed Severe Mental Impairment. This plus Attendance Allowance equals discount. I'm about to take Mum's form to council office with POA as I want to stress it must be sent to me, Mum will be devastated to see the wording Severe Mental Impairment. Haven't done blue badge yet so not sure.

More fuss from Mum about the Carers. Apparently her legs are red because the Carers don't do their jobs properly. When I said it was because she stopped her water tablets she said that was weeks ago. Er no, she's only bern back on them for two weeks. I'm very tempted to just go to the Post Office and stick a redirect on her post. She isn't rational however much she seems it some of the time.

Needmoresleep · 04/06/2013 12:04

Bizzey, I remember the long lists. I ended up with a big bag of key papers, including my mothers passport, which I trundled up and down the motorway. At one point it was a Curver box. Now I am down to a tin where I keep stuff I need to take down on my next visit, and ....yippee...this week so far I have nothing in it.

You should find the list gets smaller as some things, like initial diagnoses and assessments, will be one offs. And you have spurred me to sort out my mother's Council tax. I am mainly done with registering the POA, and the junk mail has dried up to a trickle, so the the only big mountain still to climb is three years of tax returns. I may email my accountant and ask him to start nagging me.

BWN. Do get the mail redirect done. One possible rule of thumb might be

  1. Is it something that will have to be done sometime within the next six months anyway?
  2. Will it either make your life easier, or increase your mothers well being or financial security.

It is implicit in her signing the POA. She may rail initially, but I simply told my mum she had agreed (she had - I got her to sign the Post Office form though she may well not have known what she was signing). I take her anything she needs and print off her bank balances regularly. Looking back I am pretty sure her desire to retain control was because she was terrified of in some way losing her money and being left with none. However she could not cope and judging from the notes she used to write to herself, she found it all extremely stressful. Now we are through the storm and both in a better place, she has relaxed and other than demanding a cheque book, has not asked about anything.

Again where do you need to be in six months time? If so there is a good argument for bracing yourself and being assertive.

On the sheltered housing I feel it is worth looking at possibilities especially those linked with dementia homes. You should look at the extent to which they are future proofed. My decision was made easier because my mother was already in hospital/convalescent care and so the "moving twice" option was her going home first and then moving to sheltered housing - so relatively easy to move her straight. Her housing is quite future proofed and any next move will be at a point when she is not really aware of where she is, so perhaps less disruptive.

Your brother is not there every day. He does not hold his breath each time the phone rings wondering what crisis is about to happen. (Solar panels!) He does not have to then drop everything to sort it out. He does not have to ask his family support him at the end of the day when he is emotionally and physically exhausted, when actually you want to be the one providing support to your kids and DH.

  1. Moving early allows better routines to be established, and therefore more skills retained and a better quality of life.
  2. Vacancies in good places can be few and far between, so you may have to go on a wait list and take something when it comes up.
  3. You should have a plan of action should your mother find herself in hospital. You can then dress it as "convalescence", with the promise that she can go home when she is feeling better. Knowing full well that "better" will never happen and with a fair certainty that she will soon forget about going home. (I was told that the home that my mother talks about going back to might well shift over time to somewhere she had lived in the past.)
  4. Company, good food, and less stress should help her make the most of her remaining capabilities.
  5. Once settled you both can relax and resume a much more normal relationship.

Oliver James suggests setting a point at which the decision on a move is made based on the point at which a carer feels they can't cope. Something like a given number of middle of the night phone calls, a level of incontinence, or whatever. He suggests that quite often when someone thinks about it they realise that the point has already passed.

On a different subject on what is a very long post and from today's Daily Mail.

MEMORY LOSS: FAST EVERY OTHER DAY
Keeping your memory sharp involves making certain lifestyle choices, particularly in relation to food, says Dr Sandrine Thuret, head of the neurogenesis and mental health laboratory at the Institute of Psychiatry, King?s College London.
?There are specific neurons ? brain cells that communicate with each other ? involved in memory. The more you have of these neurons, the better your memory will be.
?Recent research shows it?s possible to create more in adulthood,? she says.
?Diet has a huge impact. I try to do intermittent fasting. Every other day I?ll just have a light breakfast and a very light dinner ? about 600 calories in total ? although often it?s because I?m too busy for lunch.
?Studies show that if healthy people reduce their calorie intake by about 30 per cent and increase time between meals, it improves their memory by helping create more of these neurons, although we don?t yet know why.
?I also have fish such as salmon ? full of omega-3 fatty acids ?every other day, and keep fresh blueberries in my fridge. The flavonoids they contain are good for memory.
?Exercise has a dramatic effect on these neurons, too, so every other day I run to work and back ? about eight miles.?

Get running all.....

CMOTDibbler · 04/06/2013 12:05

Mum and dad both have blue badges due to their poor walking - although the forms are long and require a lot of evidence of identity, getting them was very easy for them. Its made a huge difference to them.

I think a redirect on your mums post would be very sensible Wynken

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WynkenBlynkenandNod · 04/06/2013 13:17

Thank you Needsmoresleep, excellent post. I have actually taken a deep breath and did it in way back from council offices so it should start in a few days. Very easy, just waved POA and some id , waved the new debit card from her account and done. Haven't told her but there will be a letter confirming the redirect at which point she'll hit the roof.

Council tax is also done. It took the POA, exemption form signed by doctor, copy of attendance allowance and that will be back dated. Delivered Mum's new slippers and found her heating food in microwave which was good. She'd apparently just called me (though didn't tell me that) . Think it was to tell me she's rang the agency and complained about one of the Carers. Asked why and she said she had a list, had been keeping notes. Hopefully that will be on her file for SS to see if needs be. I can't be arsed to ring the agency, they will have to ring me if they want to discuss it.

I will go and see these extra care places I think and then I know what I'm talking about. I don't think I can do the fasting with gallstones but I can cut calories and eek out the time between meals. I'm getting a dog walk in every school day morning (she and the other dogwalkers would look at me like I've lost the plot if I try and run and there will be a mini earth tremour) Think I'm starting to feel a little bit better and my energy levels have fractionally improved. DD very tearful at the moment and doesn't know why so I do need to focus on her a bit more. Have to say the memory of the solar panel crisis does bring a smile to my face!

WynkenBlynkenandNod · 04/06/2013 14:26

That was interesting. Rang the extra care flats with Nursing home on site. She was very helpful but said that they would need to have a doctor's report or further info as there is the concern that timeline of selling her house, buying a flat then selling again might be problematic given she has TIA's and could deteriorate rapidly.

They can't guarantee place in nursing home and sometimes some people need a higher level of nursing home, guess an EMI unit. She also said about the Dmentia deteriorating when moving though she said it often settles. I get the feeling with the Vascular element present, she was trying to gently suggest that she might be better of where she is then into a NH. She's sending me a brochure and I can look but I came off with doubts.

CMOTDibbler · 04/06/2013 20:39

Its worth a visit though Wynken - the more places you see the more you'll know what you do and don't like. Rather like choosing a nursery!

Dad rang earlier to say his catheter had blocked and the DN and GP had been unable to get a new one in so he was waiting for an ambulance to take him into the urology ward. He'd put mum to bed downstairs so she would be OK till the morning. Heres hoping they get it sorted tonight.

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bizzey · 04/06/2013 21:24

Wow ,,What a rollercoaster of a day !!! If I had posted 1 hour earlier I was on a high on how good a day it was .....Then booooom one sentence can make it all come apart !!!

Story today .....

Appointment with mum with GP....Lump thing ..no cancer ..under obs...she has agreed to "talking" to someone about dad ....

Went to specsavers to book her appointment for hearing test (as well!!).... they had one in an hour that we took...she failed hearing as expected ...she was quite happy to talk about hearing aids...(which is a massive +++++ when you consider how "vain"my mother is !!! Grin )

A "refreshment "was had Wink and a bit of clothes shopping for our holiday in July.....

Only for my dad to go into one saying "they "had no money for her to have a hearing aid...and she just needed to turn the T.V up a bit (60% loss!!)

Gutted Sad ...normally he would just say ...."with a sigh " !! how much do you need ??

For my mum fo be even agreeing to the aids is massive ...she was really excited ...and then dad done something ....???so not like him is hard ???

He has never refused my mum a thing (might moan about doing it for a day ...but you know what i mean !!)

A few years ago he would have said "Right ..you need them ...we will sort it out!"...or...."Boomin hell ...thought you were never going to get them ...that will be good "....

or something along those lines ifykwim !!

As anside I know we are going "private with these"....but are they better than NHS ???

Cant believe how many high and lows you can have in one day !

Wrong council tax rebate form sent !..

Posted other forms !Grin

Blue Badge due to dad's HMR DLA slready done

Still gutted about dad's comment's !

topknob · 05/06/2013 18:30

So mother managed to lock herself out today of her flat ! Good job I have a spare key here and she is a two minute drive away. She had to use the pull cord to contact the warden though who then contacted me. Funny thing is she never let's go of those keys normally they are always in her hand even when she is at home.

CMOTDibbler · 05/06/2013 18:47

Bizzey, its not your dad talking, its the dementia. Your mum needs the hearing aids (and I understand the digital private ones are lots better), so she can't expect your dad to affirm things like he once did.

Hmm on the keys Topknob. Did you find them? Would a checklist on the inside of the door help?

Dad spent the night in hospital after a litany of incompetence from the ambulance control. But a lovely nurse who had looked after him when he was admitted last time eventually got a catheter in, then called him a taxi at 6am as he couldnt sleep for worrying about mum. Bless him, it was the first taxi he'd ever paid for

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topknob · 05/06/2013 19:44

CMOT, your poor dad xx What happened with the ambulance people?

Fab idea about the poster, will do that shortly and put it up tomorrow. This isn't the first time, but the last time I actually found her keys in her handbag which she had. This time they were on the table in the flat.

CMOTDibbler · 05/06/2013 20:00

Well, the gp phoned them at 5 in front of dad. They said it could be up to 2 hours which is fair enough, but obv his catheter had been blocked since lunchtime so getting painful.
At 8, he phoned to find out how much longer, and they denied all knowledge of any such call, and couldn't the oncall gp sort it out? On call gp says no, course not, phones ambulance control again, no , no record and told theyd take up to another 2 hours... Gp had a strop at them, but dad didn't get to hospital till 9.45 and though the nurse asked them to wait in the circs they wouldn't.

DN was coming to look at mums scar today as one bit hadn't healed. It was obv the nice dn who came out to dad as the other one wouldn't have looked at it

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CMOTDibbler · 06/06/2013 20:55

And now dads back in the hospital after his catheter blocked again and now the DN, GP and 2 hospital drs have had a go and can't get one in. Waiting for the consultant to come in to have a go now. Someone on the ward lent him their mobile to ring me.

Mum totally confused by it all, and is now obv asleep as the phone is ringing and ringing.

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topknob · 06/06/2013 22:11

Sorry to hear this, sounds a total balls up tbh. You ok?

Needmoresleep · 06/06/2013 22:38

Poor you.

CMOTDibbler · 07/06/2013 07:41

Ward phoned at 11.30 to say he was going home by taxi. Will be telling him we need to find somewhere for her to go for a week so he can have his op without worrying.
There is what looks like a nice Friends of the Elderly home near them with a dementia unit and secure gardens, so may start there for brochures

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WynkenBlynkenandNod · 07/06/2013 07:42

Really sorry CMOT Sad please keep posting if you have time. We will listen and ply you with virtual Wine. Am hoping today is a much better day for you all.

Memory clinic appointment for Mum today with a planned increase in dose of Galantamine. I think she might refuse to take the higher dose, we'll see.

PostBellumBugsy · 07/06/2013 09:02

Sorry to hear about all the stress for your poor Dad as well as the catheter complications CMOT. Hope you manage to find some respite for him with somewhere for your Mum while he has his op.

Good luck with your Mum today Wynken.