Early stages of dementia, planning for future...

I agree with @Papergirl1968 in principle. No one likes to be told they are exhibiting signs of dementia and it's easy to say 'i can sort that out for you if you like as I can do it online and it will take two minutes'.

But when it comes to sorting out POA and taking someone to a memory clinic appt you can't really do it without explaining it to them. The important thing is the tone you present info in.

I think I would start with the diagnosis - rather than 'sit her down' to talk about it, wait for a moment when you are watching tv or out for a walk and ask what regular health checks she has at the GP, then ask if they ever do any tests of her memory as 'I read that if you are starting to get forgetful there is medication you can take to preserve your memory'. See how she reacts to that then say how good it is there are treatments available to help prevent it just like blood pressure tablets or glasses for eye sight that isn't what it once was. But don't push her to go.

Do you or your DH ever accompany her to the docs? I was lucky in that my dad was quite ill at the time and we went to the GPs a lot as a family for his appts. I had a quiet word with the GP and he booked a double appt and then after my dad's appt asked my mum how she was and if he could give her a quick memory test. She did poorly so he asked if he could refer her for a more specialized test at the memory clinic. Elderly people don't like to make a scene to the doctor so she said yes.

She needed a lot of reassurance in the run up to the appointment that she wouldn't be sent to the 'funny farm'. We just laughed and said the funny farm didn't exist now and she was stuck with us and we would look after her regardless of what the doctor said and he could probably give her tablets to help if he thought she needed them.

Recently I had to ask the dr's receptionist for a copy of mum's Alzheimer's diagnosis letter. Mum overheard me and said 'what are you talking about? I don't have Alzheimer's.' My dad distracted her and the moment passed. I guess she either forgot what I'd said or maybe just decided it didn't matter as she is ok.

That sounds really difficult, Glitter.
I don’t think we’ve ever really had the conversation with DM. We’ve just gradually taken over the paying of bills, getting the shopping, arranging for a cleaner twice a week and a carer to do a meal four times a week etc.
There are times when I think DM must know, surely she must know? But then she’ll mention a friend or acquaintance having “lost their marbles” or being “with the fairies” without a trace of irony so I don’t think she does realise, or at least realise it’s anything more than normal elderly forgetfulness.
And if you can get to accept help without having to spell it out, maybe there’s something to be said for being left in ignorant bliss?

A social worker might be the right person to take control of someone 's bank account, but one would assume a better system would involve her needing to account for herself to a non social worker ( and not a colleague ). There is an unmet need for outsourcing the monitoring, not least to protect situations such as one sibling arousing suspicion, or even joint siblings being unable to agree.

One situation never caused scandal, because few would have spotted what was done. A solicitor drew a will for a modest living old woman in an ordinary house, but whose shares and assets and jewels were worth multimillions. The will left a couple of minor sums from the day to day bank account, plus an instruction that a neighbour could take certain bits of furniture. The house was to be sold and proceeds divided equally between various charities, and finally any remaining possessions and residue should go to (these were not the actual names involved) " my friend Mary Jones" but Mary was the solicitor, practising under presumably her maiden name, not Jones, and the initials D.M. Anyone viewing that would assume that "my friend Mary" was inheriting any remaining furniture and whatever was in the bank after fees were paid. All the jewellery and all the shares could be removed by a smart trusted person with a key, the moment the old lady was taken to hospital or a care home, and anyone smart could make sure they were concealed from the apparent value of the estate.

@SinisterBumFacedCat There's a worrying story in my local paper of a social worker who was able to acquire PoA for a vulnerable person she'd done a financial assessment for. I'm not sure how she got away with it and whether it'd be possible with family around, but you could use the argument that if she does it now, it's her wishes, rather than someone applying for deputyship when she no longer has capacity, who might not be the person she chose. I presume you're also basing your arguments around "what if you got hit by a bus" rather than loss of faculties through dementia which is such a horrible prospect it's difficult to face the reality that it may happen to us.

Depression can also be linked to dementia. My mum was prescribed anti depressants before being diagnosed with Alzheimer's. I visited the doctor with her and said she didn't need them and we would help with her feeling down.

Now she takes anti depressants daily - my parents like to follow doctors advice to the letter and, as my dad is with her 24/7, if she is in a better frame of mind it's easier on him. I'm too far away to help them keep her upbeat daily even without lockdown so need to let her take the meds.

I think many people with the beginnings of failing memory realise it is failing. They embarrass themselves a few times by asking questions they should know the answer to eg 'where did your parents spend Christmas Day glitter?' and then start to withdraw from socialising to prevent further embarrassment. Or they start forgetting to go to the coffee morning they always used to attend. This can be incredibly isolating and ultimately depressing for them.

www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/apathy#content-start

She may not wish for you or anyone to have LPoA which is her right of course.

About the attendance allowance which my mum who has dementia but lives with my dad has just started receiving.

If you call the DWP and get them to send you a form it is dated with the date you call and any payment is awarded from the date of that call provided you return the for within six weeks.

Age UK will help you fill the forms in, they talked to us and identified aspects of mum's needs that I hadn't even considered to put on the form. She needs to have needed help with something for six months before it becomes something covered by attendance allowance.

There seemed to be a big emphasis in my mum's case of being able to eat and wash herself both of which she can do. They also want to know about diagnosed conditions and medications so a formal diagnosis will add more weight but being in progress of getting it should also count. With my mum we said we need to take her to doctor to see if her memory problems are just regular getting older issues or something more and if it is something more there is medication she can take which will help. My mum is now on medication to try to stop it getting worse so it is definitely beneficial to the person to be tested and diagnosed.

My already diagnosed mum was refused attendance allowance at first. This was last Autumn.

I appealed and provided further information including her dementia diagnosis letter and more statements about how it impacts her. I then heard nothing for months and was told 'we are very busy and have a backlog' each time I called to check.

With lockdown I forgot about it as keeping them safe was my priority. Then one day a few weeks ago the DWP called me, apologised for the delay, asked a few more questions on the phone and decided to award it to her.

Am not sure what caused the sudden movement on their part. The cynic in me says the Gov have just let tens of thousands of pensioners die so the DWP now has spare budget.

So my advice is call and get the form sent by the DWP, start the process of getting her diagnosed and get appt with Age UK to help fill forms in.

Good luck!

Can I also point you in he direction of The Herbert Protocol. It’s a scheme run by police forces that is a pack of information the family / carers of someone with dementia fill in, so should that person wander and go missing, the info needed to run a swift and therefore likely to be most successful search, is already at hand.

I do @SinisterBumFacedCat. My relative was completely paranoid about money and other things and refused to sign a POA or allow anyone to help with her finances. In the end she was taken into care for her own safety and I had to apply to the Court of Protection to be her Property & Affairs Deputy in order to sort out her finances and legal affairs. This took about five months and cost approximately £3,000, which was paid out of my relative’s funds. I was lucky in that my relative had quite considerable income and assets. Health & welfare deputyship is almost never granted and I was advised not to apply for it, but I found that being P & A Deputy gave me sufficient status to be always consulted when health and welfare decisions were made. I had a lot of power by virtue of being her closest relative and her P & A Deputy.

Hope that helps. It’s so hard when a loved one is resistant but it’s very common in people with dementia.

Look, I know everyone on here says get POA as soon as possible, but what if you can’t, what if they keep refusing, what if asking causes them anxiety and cause to doubt your motives? I’m asking because my DM has flatly refused to the point of making it an issue but everyone talks about POA like it’s a silver bullet. Has anyone had experience of not being able to get POA and what happened?

The alarms with a fob that people wear around the neck, which Granadagirl mentioned are provided by companies such as Telecare.
My DM is quite repetitive and forgetful too. She can still hold a conversation but keeps turning it back to things she’s comfortable with talking about - the weather etc. She forgets her great grandchildren’s names and which one belongs to which grandchild, but she knows the rest of the family. She forgets one of her neighbours died 18 months ago.
But her short term memory is the worst. She’s started to phone me and then to call again an hour later. Or to phone me when she meant to call one of my sisters.
Or we tell her that her carer will be there in 20 minutes to do her meal and she’s started eating biscuits in the meantime. She’s developed a sweet tooth too!
She has to be reminded to change her clothes, and has the occasional toileting accident, although that might not be dementia related, just being in her 80s and having had three children.
I’m grateful she can still live alone with support and that for now she knows us.

Depending on where you live there is a fantastic network of support from the Alzheimers Society ( who have advisers and also run fantastic support groups) and other dementia related charities. You need an diagnosis to access the services of AS. The route for diagnosis depends on where you live. Some counties have Memory Assessment Services but often a GP will diagnose. There is treatment for the early stages which some people respond to well. It does not treat the disease but helps the brain to function better, so is worth asking the gp about. PofA is definitely worth doing but act soon. Also talk to her about her home, could she move nearer to you? Is that possible? Some people want the support of family, others prefer strangers. Dementia is a cruel disease but there is a lot of good support out there for her and for you both. Do educate Yourselves as much as possible. I wish I had known more about dementia when my own died had it, I could have helped make the end of his life so much better. Wishing you all the best

I cared and lived with my MIL, she had Alzheimer’s. Early on and pre diagnosis a lot of the things you mentioned were true of my MIL too.

Firstly with personal hygiene, there often becomes a fear with it early on. For us it was one of the first signs. Don’t be surprised if any sort of bathing/washing is minimal or even being done at all. My MIL ended up with a real fear/hate of water or being wet. If you look online you can get dry wipes for body washing and waterless shampoo for hair washing which can really help with keeping on top of cleanliness. Food also ended up being an issue for us, MIL developed a very very sweet tooth to the point she once got up in the middle of the night and demolished the entire sugar jar eating it with a just a spoon and nothing else. Whilst I agree with getting in whatever calories they will eat, we found that the sugar had a particularly negative effect on MIL, often making her aggressive and agitated I would suppose that was the sugar rush or sugar high and the inevitable crash that would follow.

Secondly, definitely get the power of attorney for finances as well as health as soon as you can. Many things will be so much easier to deal with down the road if you have these in place.

Thirdly, have a chat with your MIL about her wishes going forward, would she rather have carers come in or go into a home or sheltered/assisted living. Be prepared to have to go against these wishes for her own best interests/her safety at some point. These are things to discuss with your other half too, yes they are difficult conversations to have and he probably won’t want to talk about it, but it’s important to do it now.

Lastly I would advise you look up and join the Dementia Talking Point, it’s full of support and useful information and was very helpful for me.

Does she get all what benefits she should be getting
An awful lot of older people don’t know what there entitled to
You could go on something lik
Entitled2
You could ask gp for a memory test for your mil,

Is she the type of lady that would let another woman Help to shower her ?
If no meals on wheels in her area
There are other companies like
Wiltshire farms, anything from £3-5 meal but there frozen!!
So carer needs to cook from frozen,

My mil is a bit further down this route
She as carer’s twice a day, she’s at the stage now she won’t let them shower her(only daughter can) she tells them she doesn’t want the food she’s not hungry
she was in hospital last year for 6 weeks and lost a hell of a lot of confidence, she stop going out into the village. Now she won’t go anywhere! Just sits in her chair
She had a fall recently, when gp came she was very disoriented and very dehydrated so spent 2 days in hospital
Since then, she gone really bad with her memory for some reason. She only talks about 3 things and repeats every 5 mins the same questions
She was always ringing at one time(forget she’d rang) now she doesn’t ring anyone.

Oh get her an alarm, forget what there called
She has a fob she where’s round her neck, that she presses if she needs help. I think it’s about £15 mth and they ring the family on her List. If say she’s not well, had a fall etc

T/o This thread raises questions. It started to be a concern
regarding an elderly neighbour. First, about diagnosis. If M.i.l. is to make a power of attorney (or two, )and a will, she must have capacity. So, presumably, she must not have been declared senile by her g.p.?? But, all advice is to get early diagnosis even though there's no treatment, and to use the senility diagnosis to push the council to assess her.? So, get diagnosis but only a good while after getting paperwork in order and registered?

Then, is the social worker assessment going to benefit anyone who has savings, so won't get council funded care workers anyway? This m.i.l is in a dwelling with no saleable value, but has modest bank account savings. She is in the worst position. If she lived in a million pound house with a partner, but with no savings, the taxpayers would fund everything. (It does seem unfair there isn't even a charge put against eventual sale of a valuable house).

Also, what if the s.s. just declare she is unsafe to live alone? Would that mean they would force her into a care home , however much she and the family object, and then charge her a huge premium on the fees, because of the punishment for savings meaning she pays her own, plus a surcharge towards the fees of other residents who were spendthrift (or crafty) so who have no visible savings and therefore pay nothing.? (Plus, now, the self funders must pay the extra covid costs, for extra cleaning, extra p.p.e)

It's infuriating there are as many billions as anyone wants, for anything at all, even HS2, but still, still, not one penny for social care, just twenty years of talk.

Sorry to crash your post. Your m.i.l is lucky to be loved and cared about. (The neighbour is alone in the world, so couldn't presumably have any p.o.a, unless a solicitor, who would perhaps charge a fortune and have no real interest in her welfare) Thanks for raising it. Really, we all should know about this stuff and prepare, but we don't.

I reccomend you ask the GP to refer to the local memory service. There are several types of dementia and 2 of them are slowed down by medication if given early enough.

I also recommend Alzheimer's Society and Dementia Alliance websites for information.

It is the case that most people can live in their own homes with carers going in for a long time. Hopefully this will be the case for your MIL.

The key to management is acceptance of some very hard, very unpleasant facts.

1. No one can cure dementia. That means you can't either.
2. You can - and will - fix endless inventive crises but there will just be another one waiting round the corner.
3. You must look after your own health, which will be threatened by the strain, and you probably won't.
4. Managing a severely LD adult or a schizophrenic is a walk in the park compared to coping with a dementee.
5. Never trust 'nature to take its course'. You could be looking at 15 or 20 years of this. She will go into a care home too late.

Now the good news:

1. Talk to SS, the local carers' assn, the GP and everyone else they recommend. Push for a diagnosis (if she's smelly it helps) and home care visits every day.
2. Apply for all benefits and make a will with her. Will must be done at a solicitors as they can go wrong so easily. DIY the rest yourself, inc POA as above, it's all free.
3. If she doesn't cooperate, there's nothing you can do. In the end she'll fall or be sectioned. This happens quite a lot with the resistant dementee, and can be a godsend in keeping them safe long term.
4. Watch what the GC see - there are some things they shouldn't be exposed to, so don't forget how distressing the disease is to everyone.

My DM has vascular dementia. I don’t think she’s fully aware of it herself and she can be resistant to accepting help, and certainly to paying for it!
We have a cleaner twice a week and a lady who does her evening meal four times a week. The other days my sisters and I share between us.
We had to take the cooker out after a few near misses with it being left on or DM not being able to light it. She thinks it’s waiting for a new part.
We also have to check DM’s (thankfully low maintenance) pet is being fed.
And manage her money and bills.

Great advice above - POA, push the GP for a diagnosis, chat with social services.

Another key issue is going to be her attitude - does she understand/accept what’s happening? Is she willing to delegate some management to you/DH? Mood swings and personality changes can come with dementia so if she is currently stable it’s important to get things into place quickly. It may be worth tracking down local dementia charities to get a good understanding of how things will progress, and hints and tips on how to manage the situation.

There's two sorts of Power of Attorney, for Finance, and for health and Welfare. H&W only comes into play once she's lost capacity, Finance can be written so that it can come into play while she still has capacity - useful to be able to help her with finance and admin without having to have her at your side every time you ring someone. You can have more than one attorney - if more than once, you can act jointly, or jointly and separately. If you trust each other, jointly and separately is easier because it means you don't have to get approval of all attorneys before buying her a pair of slippers. However you do the documents, you need someone to provide a certificate of capacity. Once you've drawn up the documents, they need to be registered with the Office of Public Guardian. Once you've don this, using them is a matter of just letting anyone you're dealing with see a copy.

If she wants to write a Will, she'll need to do it while she still has capacity.

Apply for attendance allowance - think of her on a normal day not on her best days, and think about her needs, not about her needs-now-you-and-she-have-out-in-place-workarounds. And the less obvious needs - eg does she have an appreciation of danger?

The aim now is to support her in her home until such tome as a care home becomes inevitable. This won't be a comfortable process - she'll need to demonstrate conclusively to herself that she can't cope.

See if her area does meals-on-wheels - about 40% of LAs do. She'll have to pay, but it's a reasonable price - ours was £5 a day, £7.50 if you wanted a sandwich based tea left too. If she's losing her appetite, forget all you've learnt about healthy eating and concentrate on calories - full fat milk not skimmed, butter not marg, and her favourite foods.

Her money will run out quickly in care, so she might as well get benefit from it - a cleaner? Pay someone for help with shopping?

The symptoms you are describing are classic dementia symptoms. I'm not going to lie to you, if your MIL is not compliant you are at the beginning of a very difficult road. One of the most important things to understand is that sometimes it is not possible to solve every problem even when we think we should be able to do it. Until your MIL is judged to have lost capacity then she will be able to make decisions for herself - even if, to your eyes and the eyes of anyone rational they are not reasonable or sensible decisions. This can make things very difficult. It is particularly hard if other people start judging you for the state she/her home is in when she won't allow you to help. Try not to take it to heart, you can only do your best.

You've been given some good advice above. I would really recommend the Alzheimer's Society Forum and the website in general. Link to the forum is here: forum.alzheimers.org.uk/

Good luck.