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Hello :)

Ann Mac

Registered User
Oct 17, 2013
3,693
0
Hi everyone,

I'm Ann, and 2 weeks ago, My mum in law, diagnosed with dementia around 3 years ago, went rapidly downhill and we hit the point where we realised that it just isn't feasible, sadly, for her to live independently any longer :(

I actually have a background in care, with a fair bit of experience in supporting people with dementia and Alzheimers - although I changed my profession a couple of years back, I know enough about the condition to realise that however much experience I have, its still going to be a long and hard road for all of us - my Mum in law, my husband, my kids and me. For a lot of reasons, we have decided to try and care for her in our home - don't know if we can sustain that, but we have to try.

Looking forward to getting to know everyone, and hoping that as I hit issues and problems, I'll maybe be able to find some advice here - and perhaps even be able to contribute a little to help others

Ann x
 

1954

Registered User
Jan 3, 2013
3,835
0
Sidcup
Hi Ann

Welcome to TP

We have moved my MIL in to our house and I am the main carer. I too have a nursing background so thought this would help. Unfortunately I don't think it has. It is a hard road for everyone. BUT at least you have found us and you will get lots of support/advice and help on this forum

Keep posting
 

Izzy

Volunteer Moderator
Aug 31, 2003
67,272
0
71
Dundee
My mum had vascular dementia. She lived with us for 5 years before she died. I won't pretend it was always easy but we managed. We did have the help of carers though. We're lucky enough to have free personal care for the elderly in Scotland though. She died at the age of 93 and I think if she had lived on it would have become more difficult for us to sustain caring for her at home.
 

Ann Mac

Registered User
Oct 17, 2013
3,693
0
Thanks 1954 :)

Yep, I guess its dawned on me pretty rapidly that its a whole new ball game when (a) its a relatively that you love, and (b) its in your own home - all the experience in the world doesn't prepare you enough, does it?

I guess initial 'unexpected' difficulties are mainly the impact on my hubby - as an only child, its really hit him, and supporting him is harder than I expected.

And also, the dealing with officialdom - 'Mum' went into denial over the diagnosis and kept putting off sorting POA - that's really an obstacle we are finding difficult to work round after the very rapid decline and the sudden change in circumstances. Hospital appointments, for the host of medical ailments she has, are a nightmare. Her GP has informed various departments that she has dementia, and that she can and will mislay/throw away appointment cards and letters, and therefore may miss appointments. But some departments still won't let us know about appointments because of 'confidentiality issues', and because we don't have POA- and then we find a 'snotty letter' threatening to remove her from consultants list because yet again she has failed to show up. Currently trying to get her back on heart specialist list, and also dealing with Pensions and benefits office :(
 

Ann Mac

Registered User
Oct 17, 2013
3,693
0
Hi Izzy,



Care support I am just looking into :) We are trying to be practical, and if there is support on offer, we figured we are sensible to look into it - just not sure what is available in our area, that might suit 'Mum's' needs yet :)
 

Tigers15

Registered User
Oct 21, 2012
238
0
Hello Ann Mac and welcome. We were never able to look after dad at home as shortly after his diagnosis he suffered two falls each of which required hip ops (one fall whilst in hospital). This of course all led to a very rapid decline. He is in a nursing home where he is being well cared for.

I do so wish that we had been able to have him home, even if only for a short while but it would have been a great risk for him and everyone else. It will be hard for you and your family, but I actually envy the fact that you will get this chance; having said that if you and your family start feeling the strain, then please rethink.

Well done for being prepared to give it ago.
 

Ann Mac

Registered User
Oct 17, 2013
3,693
0
Hi Tigers15,

So sorry to hear about your Dad's falls - but I am glad he is well looked after in the care home.

Its important to us to try, I think - we have all been so close, it feels the right thing to do - BUT I am determined not to live in cloud cuckoo land and assume that being determined to cope is enough to ensure that we actually can. The way her dementia has developed has shown me that despite experience, none of us can be sure of what we may have to deal with, or even if we will always be her best option - one day at a time, I guess :)
 

1954

Registered User
Jan 3, 2013
3,835
0
Sidcup
Thanks 1954 :)

Yep, I guess its dawned on me pretty rapidly that its a whole new ball game when (a) its a relatively that you love, and (b) its in your own home - all the experience in the world doesn't prepare you enough, does it?

I guess initial 'unexpected' difficulties are mainly the impact on my hubby - as an only child, its really hit him, and supporting him is harder than I expected.

And also, the dealing with officialdom - 'Mum' went into denial over the diagnosis and kept putting off sorting POA - that's really an obstacle we are finding difficult to work round after the very rapid decline and the sudden change in circumstances. Hospital appointments, for the host of medical ailments she has, are a nightmare. Her GP has informed various departments that she has dementia, and that she can and will mislay/throw away appointment cards and letters, and therefore may miss appointments. But some departments still won't let us know about appointments because of 'confidentiality issues', and because we don't have POA- and then we find a 'snotty letter' threatening to remove her from consultants list because yet again she has failed to show up. Currently trying to get her back on heart specialist list, and also dealing with Pensions and benefits office :(

I think I must have special powers because from the beginning of this road I have taken care of all MIL's things even though we don't have POA for health. All departments make sure I get letters and information as they know MIL can not and could not retain information or keep letters safe. We have been very fortunate

Could you write a letter saying that you need to have access to her information and get her to sign it? And give copies to the departments that deal with her. I did that originally in North London when she lived in her flat and she really had no idea what she was signing but it worked?
 

1954

Registered User
Jan 3, 2013
3,835
0
Sidcup
Have you contacted carers support uk? Befriending service? Alzheimer's society. I don't where you live but I found help eventually
 

Ann Mac

Registered User
Oct 17, 2013
3,693
0
We've asked advice from memory clinic, and GP - the nurses at the clinic said its a common problem, and its 'dependant' on the different departments and organizations that are involved. The GP has sent letters to several hospital department's for us - but actually, the surgery itself often neglects to inform us of appointments and medication changes. This morning, I found out that she has missed her flu jab appointment, and didnt respond to the letter the GP sent asking her to book her diabetic review - so frustrating.

Thanks for suggesting those organisations - I will definitely check them out :)
 

Noorza

Registered User
Jun 8, 2012
6,542
0
Does mum still have the capacity to make you her health and financial PoA's? If not then I'd contact The Office of the Public Guardian

http://www.justice.gov.uk/about/opg

I think it's a deputyship you would need but they are really helpful and free too.

I've found them a Godsend.
 

Ann Mac

Registered User
Oct 17, 2013
3,693
0
Noorza, thank you so much for that!

We have been told that the dementia has now progressed to the point where POA is not feasible - but have also been told that in order for us now to get the legal right to access and be involved in medical (and financial) decisions, we will have to go through a court process that would cost us around £2500 - £300 :eek: Any advice - especially free advice - will be most welcome :)
 

Noorza

Registered User
Jun 8, 2012
6,542
0
Call the OPG and represent yourself. You will pay a fortune in solicitors otherwise. I don't know the costs though. Is anyone likely to object or make it nasty? If it's straight forward the OPG will help you through it. I'll go and check costs.
 

stanleypj

Registered User
Dec 8, 2011
10,712
0
North West
Hi Ann Mac,

I've read posts on here suggesting that there are substantial and continuing deputyship costs.

Who told you that the progression of the dementia means that the POA is not feasible? I only ask because I found that there was a lot of confusion about this even amongst professionals. Would mum be happy to let you look after her financial affairs? Would she be able to say so?

If the answer's yes to both then all it needs is for someone who has known her well for two years or more to certify that she understands what is involved. It can be a very straightforward process.
 

nita

Registered User
Dec 30, 2011
2,433
0
Essex
I applied for deputyship for Mum's finances myself, saving the cost of a solicitor and also got exemption from fees as Mum is on a low income. You are also exempt from any continuing costs in this case and, as Mum's savings are low, they have not asked for an annual report though they can ask at any time.

If your Mum only has a state pension and benefits and no other income, it might be worthwhile just applying to be a DWP appointee. Perhaps that is what you are pursuing at the moment?

Can you intercept Mum's mail before she sees it. I know this seems a bit underhand but it might be the only way to keep track of appointments, unless you can get the surgery/hospital, etc. to send the letters to you.
 

Ann Mac

Registered User
Oct 17, 2013
3,693
0
Thank you so much for all this info - 1 day on here and I've been pointed at more useful tips than we have been given in 3 years. I'll be checking all this info out :)

Social worker, and a nurse at the memory clinic have both suggested that Mum is not capable of agreeing to POA now - her short term memory is so bad that she can forget in the space of literally seconds, and as she is so confused about who people are a lot of the time, what they have said made sense to us, and we had accepted that it wasn't an option now.

Mil has a pension from her late husband, who died before retirement age, so I would guess that would affect appointeeship?

We can get at the mail - now! Until she moved in, if it arrived before we visited (and we were there 4 or 5 days a week) it could be binned, shredded, or put just about anywhere - and she wouldn't remember that she had had a letter, let alone what she had done with it, sadly - to be honest, so far, I think we have actually been relieved of a lot of problems by her moving in - no more sorting out purchases from cold callers, or worrying about her eating properly or taking meds, or wandering out of the house in the wee small hours ... I guess that other concerns will take the place of those things, but the relief pf just feeling that she is safe is huge :)
 

nita

Registered User
Dec 30, 2011
2,433
0
Essex
If your Mum has a private pension, you can still get appointeeship for the government benefits in the mean time, but it might be advisable to go for the Deputyship under the Court of Protection anyway if you have to deal with the pension provider and with banks.

I applied for appointeeship with the DWP in the first instant and the advised me to set up a separate account into which her state pension and benefits could be paid. I used an account in my own name which didn't have any funds in it and they said that was OK. A lady from the DWP visited and sorted it all out in one visit.

It took about 5 months to be appointed a Deputy. If you look at the forms online, they are quite easy to fill in. Don't forget to take copies. If you need any help, I would be happy to advise, if I can. You use the forms that are recommended for cases where you don't need permission to apply. I did ring the CoP first and ask for advice and they sent me a pack but I filled in and printed out extra copies from the internet.
 

Ann Mac

Registered User
Oct 17, 2013
3,693
0
Thanks 1954 - really, really appreciate all the help and advice, from you, and everyone else x