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Subject Topic: So weary, Two parents with dementia
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21/7/2018 at 10:03pm
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That is an excellent idea - it would be great if he could be persuaded to go for that, on the grounds that it will save him money - as he is keen on doing so!


24/7/2018 at 9:33am
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Quote: Originally posted by Jax365 on 07/6/2018
I'm just having a whinge....

Both my parents have dementia, my old dad (88yo) has mild to moderate, my Mum has vascular dementia (87yo) following a bad stroke and is getting worse day by day.

It's so sad to see them get so distressed over even the smallest of things. Just lately my mum has been agitated about her bank account, and is convinced that someone is stealing money from her... a delusional week caused by a change in meds, which has now been remedied, hopefully.

I am the main carer for them both, although my Sis who works full time also helps out when she can. We have carers who go in each morning, and a domestic cleaner worth her weight in gold once a week. Both carers and domestic were fought for long and hard to get them, my parents refuse to pay for anything if they think they don't need it, and only agreed to pay for care in the morning for 5 days and cleaning for 2 hours after over a year of pleading with them.. They are terrified someone will drag them away in chains and put them in a home.

I wish they would drag me off in chains and put me in a home, for a rest! We've suggested respite care, they won't have that. They would have to pay for it!

Just lately I feel totally overwhelmed, there hasn't been a day gone by without some sort of drama. I would love a holiday right now, but I daren't leave them for very long.

We have lots of help but ultimately, most of the dramas fall on me to solve.
I'm not asking for help or advice... I'm just so very very tired. Even if I could go on holiday in my little caravan, I'm not sure I could summon up the energy to go!

Has anyone else had two parents to look after at the same time in this state? I've met a lot of people who have only have one parent to look after like this. It's double trouble.

I just keep calm and carry on the best way I can.





Hi Jax, in Australia we have a thing called NDIS Which is a National Disability Insurance scheme for all people with a disability. Now the man who trained me is a Englishmen who worked on something similar in UK. It pays for all sorts of support for the person that has a disability. I hope that this helps you. I work within the sector and sometimes we have to take a break. If we dont it affects the way we can support yyhe people that we care for and if a loved one as well. You are doing a wonderful job under enormous pressure, stress and you should be commended. Keep strong.

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Aussie mick


24/7/2018 at 1:35pm
 Location: south cheshire
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Thanks for the ideas, Romany girl and HH.. Both my parents were assessed for mobility equipment but their needs have changed now, so perhaps it's time for an upgraded assessment of their needs. I will chase that suggestion up.

Aussie Mick, I don't think we have anything like that in the UK... someone correct me if I'm wrong! :)

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24/7/2018 at 3:32pm
 Location: Lancashire
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Is Mick describing Attendance Allowance?


24/7/2018 at 9:06pm
 Location: Wollongong NSW Australia
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Quote: Originally posted by Jax365 on 24/7/2018
Thanks for the ideas, Romany girl and HH.. Both my parents were assessed for mobility equipment but their needs have changed now, so perhaps it's time for an upgraded assessment of their needs. I will chase that suggestion up.

Aussie Mick, I don't think we have anything like that in the UK... someone correct me if I'm wrong! :)


I will ask the person i was talking about. I will send him a email and get back to you.


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Aussie mick


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27/7/2018 at 7:30am
 Location: Yorkshire
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The Community Support team at your local council can provide help with washing and dressing, meal prep, administration of meds etc. Worth giving them a ring? The service is initially free then is means-tested. Integrated care so will link in with social and medical needs and subject to ongoing assessment.

Chin up. Sounds like you could do with some support. What Bulldogmick says is exactly right; if you don't get a break it can affect the ones you're caring for, so find out whatever help is going and take it!


27/7/2018 at 1:51pm
 Location: south cheshire
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Hi and thanks for the advice. They both get AA at the higher rate, and that was paying for minimal 3/4 of an hour care once a day up until my younger Sis decided to give up full time work for part time, and now she does most of their physical caring (2x per day). I see to the shopping, assist them in paying the bills and take them for appointments to the docs, etc.

Lidds - they have been means tested and have to pay for care. Which they won't!! You're right about needing a break as well. We don't get them often enough though.And the parents won't consider respite care as they would have to pay for it themselves.

I've been looking after them while Sis took a break, it was like running like a hamster on a wheel. My turn for a break come September! :)

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27/7/2018 at 1:54pm
 Location: Lancashire
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So did they give up the AA jax?


27/7/2018 at 1:55pm
 Location: south cheshire
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Quote: Originally posted by franbee on 27/7/2018
So did they give up the AA jax?



No, they still get that. AA is paid to those who need it, regardless of income or savings. What you spend it on is entirely up to the person receiving it. I too us a while to get it through to them that the extra money was to pay for people/service/aids to help with their care, not to simply squirrel away like they do their pensions!

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27/7/2018 at 3:37pm
 Location: Lancashire
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Yes, I was only asking as had to deal with that with MIL. She used it to pay for carers extra to the ones she got anyway.


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11/8/2018 at 12:13pm
 Location: south cheshire
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An update! Sister and myself had a horrible week with them a fortnight ago. Dad caught a virus which led to his mobility really going down, and he kept falling whilest getting ready for bed. So Sis had to go and stay overnight for three nights...both of us there most days. Sis suggested they tried respite care for a week, just to give us a break, and to my utter astonishment, they said yes! We got them a double room in a residential home in Wrexham, just over an hour's drive away. Sis's daughter is the manager there. So far, so good, they are enjoying the break, the food, the company... and we are having a rest!

We are using an excess of AA to pay for this, but it won't last long. £800 a week per person, so £1600. And worth every penny from our point of view. We have told the parents it's paid for from their AA, which is what it's supposed to be spent on. We haven't told them how much it's costing as they would have a fit! It's allayed their fears that a 'Home' is actually a workhouse or a prison.

I didn't get enough notice to actually go camping anywhere, but if I ever get the chance again, I will go away at the same time, knowing that they are safe and well looked after.

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11/8/2018 at 3:19pm
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I do hope this has removed the fear of the unknown that was obviously preying on their minds, and that they will agree to further visits. It's certainly a step in the right direction and will give you and your sister some hope.


12/8/2018 at 12:37pm
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Quote: Originally posted by Hedgehugger on 11/8/2018
I do hope this has removed the fear of the unknown that was obviously preying on their minds, and that they will agree to further visits. It's certainly a step in the right direction and will give you and your sister some hope.



It certainly does, HH! They are home Wednesday next, so we'll see what they thought about it in more detail then. If they can remember! Ho ho...

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12/8/2018 at 9:16pm
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jax thats brilliant.

i went away last week as mum has settled into her new flat.

the family insisted i didnt call her for the week i was away, as i needed the break and we were trying to force her to be more independent.

so, i gets back and called her to tell her i was going down.

i was told to leave it till thursday, as she had bingo monday, bocca tuesday, chippy tea wednesday, flower arranging thursday but she doesnt go and bingo friday.

shes bought an electric wheelchair and whizzes round like davros denting all the doors.

went to see her and the change is astounding. she looks more alert and has started doing puzzles and crosswords again.

not bad for 88


there is hope.

good luck


14/8/2018 at 11:01am
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Geds, my Mum has been the same whilest away. She has been a lot more lively and the stimulation from the other folk in the home has done her a lot of good. Not so my Dad, he doesn't like mixing with other folk, doesn't like not having Mum's complete attention solely on him (but moans about her constant repetition when it is!) so you can't win! They are back tomorrow, so back to the usual for me and Sis. Hopefully they will go for respite in the future. I'll be ready with my caravan all set up and ready to go if there's a next time! :) It's been lovely to be able to just sleep without worrying about them all the time.

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