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Parents with dementia - where do I start?

(15 Posts)
notquitegrownup2 Sun 28-Feb-16 20:19:50

So mum stopped being able to remember anything recent about 5 years ago, although she does know who I am and who her other close friends and relatives are - she just seems to be deleting anything less important and hanging onto key people and events. She's in a happy bubble/goldfish bowl. Dad has been reasonably healthy until recently and taken on household duties (and both have refused to accept that it is anything other than forgetfulness).

However in the last 6 months dad has also started to struggle. He is losing his language. Most of the nouns have gone now, so conversation is a bit of an adventure. He is letting me help more and more, which is great, and I had the financial POA in place. Finally, they agreed to Health and Welfare POA a while ago and the papers have just arrived.

So I can now see their GP again (who refused to see me without the POA) although he did set up their medication in dosset boxes. I assume I should I be making sure they are tested and diagnosed so that we are in a stronger position to access care services as needed, or asking for a referral to a memory clinic. Is there anything else specific I should be pushing for, now? Am I right in saying that there is no specific "memory medication", other than anti anxiety medication?

Any advice much appreciated.

PixieChops Sun 28-Feb-16 20:46:35

Sorry you are going through this OP thanks I didn't want to read and run. I'm sure they get prescribed similar drugs to epilepsy now but don't quote me on it as I may be barking up the completely wrong tree.
I don't have much knowledge on POA as my step dad dealt with it all when his mum was diagnosed with Alzheimer's.
You have my deepest sympathy. Any kind of dementia is not a nice thing to have to deal with. You sound like you have everything in hand so far but yes to regular dr checks as they can monitor just how quickly your parents are deteriorating and will allow you to get other things in place such as a home if needed.

notquitegrownup2 Mon 29-Feb-16 08:39:46

Thank you Pixie - bumping for daytime traffic, in case there is any more advice out there

ZaZathecat Mon 29-Feb-16 08:48:59

Hi notquite my dm and mil both have mixed dementia (alzheimers/vascular) and are both on a drug called Donepezil but I think it's only aimed at the Alzheimers part. It's supposed to be "an enzyme blocker that works by restoring the balance of natural substances".
No idea if it really works for either of them - they're both still deteriorating but maybe slower than they would have done. We had to halve dm's dose as she was getting scary dreams and hallucinating.
You have my sympathy - I know what you are going through.

CMOTDibbler Mon 29-Feb-16 08:53:07

Both my parents have dementia too sad Mums is severe, and started with losing her nouns. Dads is more forgetful and recent. Mum failed to get on with all the dementia medication, dad will probably be offered it.

Getting a diagnosis does help in getting appropriate care overall - its not a magic bullet, but being able to say definitively what is going on helps.

You need to push for a social services assessment - the waiting list can be long so get on asap - you may be able to self refer for it.

Are you close enough to be able to go through the mail with your dad and make sure everything is paid and they aren't being scammed?

notquitegrownup2 Mon 29-Feb-16 09:01:48

Thanks ZaZa and CMOT - food for thought. Yes, Dad's letting me sort the post for him - he's struggling to read now, so appreciates the help, as long as he remembers where he's stashed it!!

Big learning curve ahead - I'm sure that I will be back.

I will push for the SS assessment. Their council are very good, although cutting back like all others. It's just a case of balancing their needs and not frightening my parents too much as their memories are so much better when they are happy/and when the sun shines. I'm hoping that we can fit in a good summer . . . have a feeling that things will come to a head next winter, but of course things may accelerate.

CMOTDibbler Mon 29-Feb-16 09:10:53

You could talk to him about getting their post redirected to you so you can deal with it directly if stashing is a problem. It will also prevent any scam stuff getting through - mum was very vunerable to things as she just didn't understand what she read or what people said on the phone

QuerkyJo Mon 29-Feb-16 09:22:55

I asked for a dementia assesment for step dad who is severely disabled. That was in January. I think his LA moved quite quickly. Your GP will organise a blood test and that result will lead to appointment. Home visit in his case.

This diagnosis is essential because it is a gateway to other help. My stepdad is now severely sight restricted as well as a million other problems. One of the best thing I did was to get his mail redirected. it is £65 per person but worth its weight in gold. All bank statements,utility bills and appointments now come straight to me.

7 years of caring for him and my mother has taught following.

Collect up every piece of paper you can find from their home.
Start a file for them.
On the front of the file write their, dob. Place of birth, Ni number, doctors details. Full names and address.
Keep their repeat prescription list with it.
Keep notes of their hospital appointment details, doctor seen etc.

Make a header sheet and note down every time you make a call on their behalf. Time, date, person you spoke to, phone number and outcome.
You know that 'this call will be recorded message' . Well that plays in your favour. Unfortunately nothing gets resolved on just one phone call. Promises are broken and if you can say, 'just listen to your recording' on such a time and date. You suddenly find that the thing they said they could not do suddenly happens.

Contact all of their utility companies to tell them you have PoA. Ask them to confirm in writing that they will speak to you.

Once dementia kicks in, every problem seems to magnify. Things going wrong in the home can be sorted out from your own place rather than someone telling you,"sorry we can only speak to the person concerned named on the bill.

Sorry for the essay, but hope it helps

bilbodog Mon 29-Feb-16 10:50:20

You could also contact your local alzheimers group who may be able to help or at least give you useful tips. I found a forum on line where people with early onset Alzheimer's who were still articulate posted their thoughts and feelings which I found very interesting and gives you an insight into what your DPs may be experiencing.

notquitegrownup2 Mon 29-Feb-16 17:46:45

Wow thank you ladies - I am printing out your list QuerkyJo to put at the front of my file for them. Many thanks

Alfieisnoisy Mon 29-Feb-16 17:53:35

That's a great post QuerkyJo. Thank you as I am supporting my Mum in caring for my Dad.

Sorry for hijacking your post OP.

Glad I came in to read it though and am glad you've found it helpful.

Helenluvsrob Mon 29-Feb-16 17:58:28

Come over to the elderly parents board and say hi. I think most of us there have dementia experience.

Sounds like you are doing all the right things. Referral for diagnosis ? meds - absolutely and also do a self referral to social services so they are aware and fid out what is available locally as sure as eggs is eggs your parents will need input of various amounts before long and " being on the books" is helpful ( especially if you need to get a finance assessment rolling)

Auriga Mon 29-Feb-16 18:06:58

Excellent advice QJ. I'm in the early stages of taking over my Mum's financial & health affairs and every tiny thing needs multiple calls and emails.

Never let anyone out of the house or off the phone with you unless they've given you all their contact details.

Never let anyone tell you that it's not their department & you need to ring someone else, without getting their details and the someone else's.

QuerkyJo Mon 29-Feb-16 19:25:57

Usually people working at banks/ agencies/ utilities companies give their name when they answer the phone. Write it down straight away.

If you get stuck or stonewalled, this is the phrase that will get things moving. Learn it off by heart.

I am trying to do my best for a very vulnerable person. I cannot continue to be moved between person to person. What I need you to do now Mary/John is move this up to a Senior Complaints Manager

Said quietly and firmly they will go off relieved that they can pass you on to somebody else. I guarantee that their line manager will not come to the phone. They will however "in the circumstances" give you what you asked for.

lionheart70 Mon 29-Feb-16 19:35:54

Sorry to hear about this, op. Good advice already, but just to say, if you've not already looked into it, then see if they might be entitled to Attendance Allowance.

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