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Idiot's Guide to A Parent With Dementia please?

(27 Posts)
PostBellumBugsy Fri 01-Feb-13 13:44:00

So, as well as having been diagnosed with cancer my Dad seems to be rapidly dementing too. Apparently, the hormonal cancer treatment will accelerate a dementia process.

DD still lives with DM in an old (not posh) farm house in the middle of nowhere. They have both decided that they are not leaving it, unless they are carried out in boxes (great help, thanks DM&DD).

They are both late 70s. DM is finding it increasingly hard to cope with DD, as he is very forgetful (can't remember what day it is), bad tempered and rigid (gets very agitated if he doesn't eat at set times etc).

They are going to the Memory Clinic in a few weeks. What will that show? Is there any help they can get?

twentyten Fri 01-Feb-13 17:28:44

Oh I'm so sorry.Not an expert but Age Uk and the Alzeimers society are really good- Social services can do an assessment to look at allowances like attendance allowance etc.Macmillan may also be able to advise-there are resources out there but they take finding...Do you have power of attourney?Really important.
Good luck

fridayfreedom Sat 02-Feb-13 20:58:04

They will assess his memory, take a detailed history re his health and background. From this they can determine the likely cause of the dementia. They may send him for a scan to aid diagnosis. If they think it is due to Alzheimer's then they may prescribe mess such as Aricept but this would also depend on any health contra-indications.
They can refer to Adult Services for advice and setting up of a care package if this is needed. They may also signpost to other support services eg localAlzheimers group, Mind etc.
They can give advice on attendance allowance, council tax reduction due to diagnosis of dementia, get 25% off, and power of Attorney.
Follow up may be at the clinic, community mental health professional or GP.

fridayfreedom Sat 02-Feb-13 20:59:23

Forgot, they may have a carers group for advice and support. Alzheimer's website is very good.

I don't know the legal/financial side in England, but up here we found that the cancer nurses were a brilliant source of information on what was available, and Macmillan Nurses were in and out of the house all the time when my Dad was ill. Though that was specifically for the cancer, not for dementia.

Do try to get legal stuff like wills and power of attorney sorted out if you possibly can, while your mother is able to b involved (just in case)

Corygal Sat 02-Feb-13 21:19:08

Well, take heart. No one wants to leave their home, but your parents may well change their mind. By the time dementia has set in, the carer may well not be able to do it all and not have much choice if they want to keep their loved one safe, or, more likely, the person with dementia will actually miles prefer being in a home.

Here's my piece - I really, really wouldn't wish being trapped in an old house alone with a grumpy senile man who was bigger than me on my worst enemy.

The big risks with home care when someone is that ill are, frankly, to the carers as much as the patient. There's a reason why care jobs are hard to fill - dementia care is long term and, even paid at private rates of 20 an hour, unquestionably the most unrewarding of types of care. Most home carers end up on strong ADs and many have proper suicidal breakdowns, which in your late 70s is no joke.

Patients themselves usually become horrifyingly nasty, if not dangerous (only about a fifth are dangerous, to be fair). Bear in mind the whole brain is failing, not just memory. Personality, skills, instinct, ability to tell night from day - you name it, it flickers, then goes. Sometimes new 'personality aspects' or psychoses appear instead - frightening and tiring for other people.

Often the patient is larger than the carer, mobile and, of course, universally uninhibited in their physical and verbal response to situations that are always strange and frighten them too. 'Uninhibited' is the one of the medical profession's most notorious euphemisms.

The patient can't be left alone for a moment, in case he/she eats the flowers brought for them, hides faeces in their chair, pushes their hand through a glass mirror to talk to the person on the other side, etc etc.

WynkenBlynkenandNod Sat 02-Feb-13 21:23:37

Fridayfreedom has covered the Memory Clinic. Your Mum should have a Carer's assessment.

Someone pointed me towards googling 'Contented Dementia' which is helping a lot, much less conflict. Mum loves her Clock with the day and time on. The surgery can arrange for medicine to be dispensed in blister packs if it isn't already.

Social Services care package can be carers coming in up to 4 times a day. A financial assessment is carried out . If they have assets of over 23.5k (approx and not including the house) then they will need to pay the full cost of care. There are day centres and respite breaks can be provided I believe. We're only at the care package carers coming once a day stage.

Attendence Allowance claims are being turned down left right and centre at the moment apparently but there are Charities who can help with appeals and represent you at tribunals for a small amount. Alzheimer's Society pointed me towards our local one and were extremely helpful . Our local one will visit at home for emotional support if required but it's not the same all over the country.

Milk and More deliver basics to a lot of areas and are very handy. You can set up for them and put things on a repeat order. Lots of delivered meals options which are fairly flexible and good as a back up. Be very kind to yourself, it's a lot to take in , especially if you are trying to juggle children / work etc. things got so bad here I emailed Social Services which has turned out to be a good move for us. Mum has a sympathetic SW but moving over to another soon. I had to say I could not care for her which felt awful to say but has been a good thing as help in place. Keep a diary of what is going on and the sort of things he is doing, will help with the Memory Clinic. See if you can persuade your parents to give consent to their GP to discuss their medical issues with you, definitely helpful if they will agree. Really sorry you're going through this.

WynkenBlynkenandNod Sat 02-Feb-13 21:31:09

Arrange a couple of things that you want to do and can look forward to, this is really important. Do not be so busy dealing with everyone else that you neglect your own health. It is very easy to overlook things and put feling unwell down to stress when it's not <reaches for antibiotics !>

fridayfreedom Sat 02-Feb-13 21:35:38

Just read Corygals post, sorry but I find it a bit alarmist.
Yes, looking after someone with dementia is difficult but everyone is different and not everyone gets aggressive or does the things mentioned above.
Getting support and information is essential as understanding what is happening for the person with dementia really helps to reduce some of the problems.

Corygal Sun 03-Feb-13 14:16:27

Oh dear, sorry if that came off a bit shrieky. You're right if course - some people are easier to keep safe than others.

Hard as it is however, I do think it's worth spelling out the possibilities at the start of the dementia journey - information is all we have, really - partic if the prospective carer is old and vulnerable themselves.

pippop1 Sun 03-Feb-13 15:11:21

Fridayfreedom mentioned this in passing above but can I just highlight that if a person with dementia lives alone (carers coming in and out for example) they are entitled not to pay any Council Tax whatsoever. The person needs to be classified as having a "Severe Mental Impairment".

Phone your Local Authority i.e. Council, and they will guide you through the process. There's a form to fill in, GP has to write a phrase or two as evidence and the whole thing took a few weeks but it worked.

We were able to get council tax refunded from when she first had dementia diagnosed (a couple of years ago) and started having carers.

This is not a means tested benefit and so it is irrelevant as to what saving she has or the kind of house she lives in. Put it like this, it will pay for a few months worth of two carers a day.

Anyway, worth looking into. My DH has both types of POA activated so I'm sure that helps as evidence too.

We were very surprised that no one had pointed this out to us in the past e.g. the NHS Memory Clinic, the organisers of the carers that we'd had a couple of year's occasional meetings with or her GP.

I just happened to come across it whilst Googling...

WynkenBlynkenandNod Sun 03-Feb-13 16:56:53

The form from our local council for the council tax says they have to be in receipt of one if a list of benefits. That includes Attendance allowance but Mum has just been rejected for that. Apparently loads of AA claims are being turned down at the moment, we have a Disability Charity helping us appeal and they will represent us at a Tribunal if it comes to it.

pippop1 Sun 03-Feb-13 17:36:56

Ah. My MIL does get Attendance Allowance so I guess that helped. Good luck with it all.

PostBellumBugsy Mon 04-Feb-13 10:00:22

Thank you all so much - very, very helpful.

At this stage they seem determined to stay in their old freezing cold farm house. In the cold snap in January, they were both wearing woolly hats & coats inside during the day. There is no gas supply where they are, so they heat the house with oil & it costs a fortune. They close up the rooms they don't use & when I visited the closed rooms were all only just above freezing (about 5 degs) and damp. The room with the TV in it, has a gas canister wheeled heater which my Mum sits about 2 inches in front of to try and keep warm.

Maybe it will get too much for Mum - clearly if he gets as bad as Corygal's scenario, she will not be able to cope at all. At the moment, the routine of some of it seems to be good for Dad. There are dogs & cats, which he feeds and he still brings wood in for the fire. He also still drives every day to the village to get the paper & Mum usually gives him one item to buy from the shop. I have no idea how long he'll be able to keep driving for.

I suspect they won't get any help from the state, as they have spent their whole lives being "careful" trying to put a bit away so that they could "enjoy" their retirement. God, what a joke. sad My sister and I are going to spend Saturday trying to help sort out the money situation and check that Mum has power of attorney.

Theas18 Mon 04-Feb-13 10:12:40

Memory clinic will be really help but my first bit of urgent advice is get power of attorney for health and finances. Worth getting one for your Mum to take on your dad if he becomes incapeable, but I'm wondering if a "2nd tier" is possible for you to hold it if SHE can't manage things ?

They don't seem to be looking after themselves very well at the moment. This almost comes under "self neglect" already doesn't it? Certainly if your mum were imposing these conditions on your dear demented Dad , social services might get involved in some sort of adult protection type thing.

Just got milk and more for my parents. Its great!

Have a hug. This being responsibly for parents is a crap place to be.

carameldecaflatte Mon 04-Feb-13 10:30:24

Can't add to what's been written above re practical advice but at the beginning my mum was adamant that my dad would be cared for at home by her (late 70's) "in sickness and in health". She had wonderful support from social services as she came to terms with my day's condition and grieved the cruel and gradual loss of a wonderful husband and dad.

Eventually she began to realise that she couldn't cope and the odd day's respite became the odd week and then two. My dad is now in a lovely care home where he is happy, his day is structured and calm and my mum has lunch with him once a week. Her own health has improved no end but she had to get to the point of realising that she had done all she could herself.

PostBellumBugsy Mon 04-Feb-13 11:45:46

Theas18, my parents could easily fall into the self neglect category. I could write a book (well, a small pamphlet at least!) on their eccentricities and very old fashioned approached to self care. I guess stuff that just seemed funny or a bit quirky when they were younger could easily become more serious as they get more acopic.

I'm so thankful I have a brother & sister, as I'm a single parent working full-time and one of my DCs is AS - so I've already got alot to be getting on with.

Dom2 Fri 08-Feb-13 13:03:57

Message deleted by Mumsnet for breaking our Talk Guidelines. Replies may also be deleted.

royguts Thu 07-Mar-13 18:11:03

There's some really useful help on coping with dementia on a site called myageingparent.com

Lucyellensmum95 Thu 07-Mar-13 18:19:00

I am sorry to hear about your poor dad. Can i just say, please do look at care homes now rather than later. You do not want to find yourself in the position that we did. My mum was determined to care for my dad at home but in the end, she just couldn't do it it was too much. Because we were adamant there would be no care home, we didnt look around and when the time came, my dad was admitted as an emergency due to carer breakdown, we had to accept the first place on offer and it was awful. So even if your dad does stay at home, make sure you have researched local care homes and find one that will suit him because of waiting lists. Better to do these things with time on your hands.

If he wanders - make sure he has his name and adress written in his wallet, coat pocket etc. Make sure all the clocks are at the right time (seems silly).

whataboutbob Fri 08-Mar-13 08:41:31

Sorry to jump in on this. Lucyellen, sometimes one receives a piece of advice at the right Time. My dad has Alzheimer's, still lives at home with support from me. Went to see him yesterday and he had forgotten who my brother is. They live together. My brother has mental illness. Dad seemed to think hewas some kind of lodger. I ve always thought dad would have to be really far gone to go to a nursing home, as he d never agree. Now I m not so sure. His sister, who lives abroad is coming in may (or so she says, I ve been let down by dad s family before). She wants to look at nursing homes and I m realising it s probably a good idea. So thanks lucyellen for your advice.

Lilymaid Fri 08-Mar-13 09:15:10

For dealing with a demented parent, read Contented Dementia by Oliver James. DH has found it very useful in the way he interacts with MIL.

Lucyellensmum95 Fri 08-Mar-13 09:58:52

Im sorry to hear about your dad whatabout - the thing is, you just have to look, you dont have to commit to anything but the differences between homes are really huge and what suits one person wont suit another. Its a horrible disease and my dad had a terrible time. I did however see a lady in the last home my dad was in (we finally found him somewhere decent) and she was lovely 90 years old she was, but convinced she was 15, flirted with my DP terribly - she was so sweet, then she would get a bit anxious because she needed to get home to her nan before 9pm or she was grounded smile So for all the grimness there are glints of joy.

People with dementia often lose short term memory but their knowledge (even if it becomes abstract) and long term memory isn't affected - they find it comforting to talk about the old days. This is something we can all learn from too - poor old Ruby was stuck in 1930 but sometimes i wished i could go there with her

amothersplaceisinthewrong Thu 14-Mar-13 21:38:34

I would second the advice to look at homes sooner rather than later. We have just put my MIL in a care home as my FIL can no longer cope andand we are 250 miles away. Thankfully we had looked around a while ago to get some idea, even though FIL was adamant he would cope. The standards vary hugely.....

grigorypogulsky Fri 15-Mar-13 06:43:19

Memory loss is the one of the common symptom in people with dementia. I just bought big button mobile phone from Homecaretechnologies.ie for my grandmother. As the phone contain special features like memory reminders, SOS button, panic button, pre programmed dialed numbers and many other. So it gives comfort to their daily life also and to other family members also.
Hope this helps you.

lainiekazan Sun 17-Mar-13 18:26:55

I agree about looking at care homes.

Mil descended from being a bit "dotty" into full blown dementia in a matter of weeks. Fil was looking after her but she became doubly incontinent and didn't know night from day. It was actually quite difficult to find a home that would take someone with advanced dementia as opposed to a bit of forgetfulness.

I snort when I read think tank proposals for "dementia friends" and suggestions about talking about the old days. Most people with dementia soon fly past this stage and it is quite harrowing for a spouse/child to deal with their nearest and dearest who no longer knows who they are and in fact has a completely different personality.

WynkenBlynkenandNod Sun 17-Mar-13 19:09:04

I need to go and look at care homes. Mum got her diagnosis last Friday, I'm just going to get through Easter then look. Dreading it but would hate to be making a decision in the middle of a crisis.

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