Early stages of dementia, planning for future...

[Glitterlikeawinner]

Hoping someone can offer some advice for my MIL who appears to be in the early stages of dementia.
Just to give you a bit of back history....She lives alone in a permanent static caravan (has always lived there when my DH was growing up). My FIL died before I met DH and shortly after we met his DS suddenly died. A couple of years ago we moved around 1hr away, it's still easy to visit which we do, although not a quick round the corner (we were previously 20 mins away),and particularly difficult with lockdown which she didnt and still doesn't fully understand.
Over the past year I've noticed she has started to forget things, repeat herself a lot but nothing I wouldnt put down to old age. Then around September she admitted she had been suffering with stomach ache but wouldnt go to GP, then over Christmas she told me she had some period bleeding for 2 days. I was obviously worried and DH basically forced her to go to GP to get looked at - nothing conclusive but said nothing to worry about after numerous tests. In the meantime while she stayed with us over christmas she started showing more forgetful symptoms, my parents joined us on christmas day and after they had gone in the evening MIL asked me what my parents had done for christmas this year.. massive alarm bells and we knew something was going on but DH didnt want to believe and wanted to monitor more. Forgetfulness continued and DH eventually managed to arrange a 3 way call with his mum and GP back in March, which said not much they could do with covid 19 so weve just been keeping an eye on her since.
She has since started to unplug things and then calls my DH to say something isnt working, he will go to her house and find shes unplugged it but she doesn't remember doing it. This has been going on throughout lockdown and he has now resorted to taping plugs that dont need unplugging.
She looks like shes lost weight and doesn't have much desire to eat. A few months ago we realised the food she was eating was often out of date, possibly causing the stomach ache. She has also admitted this weekend that she is no longer bathing and just uses a washing up bowl and sponge in the living room, I also noticed her toothbrush looked years old and head down in murky water. She came to stay with us pre lockdown for a week and refused to bath or shower saying she prefers her own bath but weve since realised she has switched her boiler off so no central heating or hot water, although the shower is electric and she said she boils water in kettle to get hot water she needs.
God, writing it all down like this sounds even worse and like a form of neglect. My DH knows something has to happen but doesn't know what and if she will let it as she just wants to stay at home - possibly carers coming in to look after her? He says she would never want to go into a home but it's a possible future thought I assume if this is dementia?
She has never had a lot of money, the caravan has little value as it will go back to the landowners, she receives a state pension and widows pension I think, however when DSIL died, MIL recieved money from a work death in service (around 40k I think) and has this in the bank never being touched, assuming it will be passed down to DH. Reading online though it looks like this money would be used to pay for carers / nursing home, is this right? We are considering her sorting a will and possibly power of attorney but dont want to appear to other wider members of the family that we are doing things underhand but while she is still in some frame of mind it seems helpful to do this now?
I guess my 2 questions are, what help or support should we be getting in place to help her with a diagnosis / any carers to ensure she is safe and looking after herself (food and hygiene). And any advice re financial support, wills, power of attorney etc!
Sorry for all the info, feels like lots going on and were feeling a bit overwhelmed at the moment. Thanks in advance x

Hi. Sorry you’re going through this. Been there, it’s shit.

So first thing first, you need to get Power or Attorney. Without it your life will be a hundred times harder. You need to act fast as she needs to have capacity to understand what she is doing. You can do this yourself fairly easily with two witnesses who know her well. It’s probably quicker this way too.

Yes any money she has will be eaten up by care fees. She can be left with £14k I think so I’m not sure I would mess about upsetting anyone with a will right now. Perhaps if she still has capacity after the POA is through then maybe. If she doesn’t have much a will kit maybe be easier. You could spend upwards of £1k on a solicitor writing it.

Once you have POA I would start getting a diagnosis. Dementia sounds likely given what you’ve said but still, there are professionals who know much more.

As she doesn’t have a great deal of assets I would get on to social services who can do an assessment to see what support she needs. It’s particularly important to get into their ‘system’ as she doesn’t have money to pay the fees if she needs residential care (prices start at £1k/week so her cash won’t last a year). My experience of social services is that they don’t really care at all and are not there to help. You need to nag them.

You could put in place your own carers now, you don’t need a diagnosis. You pay about £20/hour to a care agency who send someone in to do whatever you ask (help her wash, give her a meal etc). Would she be willing for this?

I really wish you all the best. And sort POA.

My tip is to do the PoA online, it is much cheaper and a lot less hassle than trying to take someone with memory problems to a solicitors office at a particular appointment time.

You can apply for attendance allowance which will help towards the cost of paying for carers.
Someone else might be able to advise on whether to do this now or wait for a diagnosis.

Oh wow thank you for support and advice so quickly! My DH and I are feeling very overwhelmed at the moment with what to do first / next without upsetting his DM as it must be quite frightening for her to be going through. Will look into POA and local social services, will also see about arranging appointment with GP and see where a possible diagnosis takes us. Thank you again,much appreciated x

Get power of attorney straight away as already advised. Also phone up and get attendance allowance form, you don't need to wait for diagnosis of anything and it is not means tested. But put every little detail of her problems on the form. The money will help pay for anything she needs to help her.

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.

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?

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.

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.

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.

Thank you all, felt quite emotional this afternoon after reading all of your advice and support, it all feels quite real and by the sounds of it the start of what could be a difficult path. Were going to bring her to stay with us at the weekend and have an honest chat with her about possible next steps I've printed off application form for attendance allowance - I'd never heard of this before so thank you to everyone who suggested this!

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.

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.

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

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.

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

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.

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?

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.

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.

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!

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

Thank you again, DH has had a brief call with her today and she sounded really down and fed up. He said she will come over at the weekend and she can bring all Bill's and we will go through and sort out, we will talk more when she is here and go through POA etc. I think she is in the right frame of mind at the moment to comprehend the reason for it, you can still have conversation with her so it's probably the best time.
Long road ahead by the sounds of it, my DH is dreading a day when she asked where DSIS is, it will break his heart.

Sorry just to add again, I'm so grateful for all of the advice, we considered POA and Wills but some of the other suggestions and advice we would never have known about! I've just called now for an attendance allowance application form on the advice it would be backdated to today so that was a great tip. So very much appreciated

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