DM in early stages of dementia

[iismum]

Sorry if this is long ...

DF (79) and DM (77) have been staying with us for about a week over Christmas. DM's memory's not been great for a while, but in the last 6-12 months it's become apparent that it's more than that - she gets confused about simple things, ask questions (particularly about future events like what will be happening tomorrow) 5, 6, 10 times within a single conversation, etc.

The worst thing is that she is horrid to DF. She's always been a little bit short-tempered and he is very mild and patient, so they've always had a bit of a dynamic where she snipes at him unnecessarily (to my mind) and he just takes it, but this has become hugely exaggerated. She's very frequently angry with him for 'not telling her' things about their plans which she has forgotten. She also gets angry when he helps her when she's confused, calling him 'smug', 'condescending', 'so bloody bossy' and saying he thinks he's so clever - really harsh and mocking. Yesterday, she announced at about 4.30 that she was going up to bed. DF gently reminded her what the time was and she just totally lost it, ending up by almost sobbing that she wished he wouldn't be 'so unkind'. The sniping is a bit in keeping with her character - although grossly exaggerated - but the emotional break down (which has happened twice this holiday) really isn't - she's very buttoned-up emotionally.

She's really hates accepting help. She has a real stiff-upper-lip, no-need-to-make-a-ridiculous-fuss attitude which has again become really exaggerated. She's been limping for about 12 months - maybe 18 - and we cannot get her to go and see the doctor. She becomes really angry with DF when he raises it. With DSis and me she's not so angry but is dismissive and prickly and closes the conversation down. I've actually got her to agree that she'll see a doctor about it now, but I'm not very hopeful - I think she was just fobbing me off, and even if not, I doubt she'll go through with it. I'm planning to talk to her about it again before she leaves (tomorrow) and then call her fairly often to ask her if she's been. Our hope is that she'll make a doctor's appointment and then we can brief the doctor beforehand on the situation. Even it this happens, though, I'm not that hopeful - I think she'll just be a bit dismissive of the doctor and not go again.

DF and DM are managing ok at the moment, but DF will be 80 next month and DM is getting worse. I live about 400 miles from them so there's not so much I can do on a practical front, though I'm trying to get down as often as I can. DSis lives near them and is great, but she works full-time and has two kids, one with ASD, and a partner who travels a lot for work, so there's only so much she can do.

DM is a very private person and would hate any of us to become involved in intimate care for her or even to know in much detail what is going on with her.

I'm just not sure what our next steps are - how we support her and my DF. I'd really like to hear from others who have been through similar. DFIL died from dementia recently so in a way we have been through this but the situation was very different - DFIL was quite passive and very happy to take direction from DMIL, so she always organised his care and there was no problem with intervention. I'm really worried.

tl;dr - DM in early stages of dementia; hates accepting help and is constantly angry with DF - what do we do?

I have been through this - we are a bit further down the line now. Your first step is to see if you can get power of attorney in place for her, whilst she is able to sign things. I had to approach mum very carefully, and take it slowly, but it is helpful if you have the paperwork.

Meanwhile, can you talk to your dad about it when she is occupied elsewhere - see if he is aware/willing to accept it/what he would like to happen? My mum was in a home for a while, but dad was very clear that he wanted her home, and so they have carers supporting him. It's exhausting, but its what he wanted.

In our experience medication has helped dm - she's on donepezil and it has made a difference to her understanding. She was also put on citalopram for depression at the same time, and seems calmer, more content.

Try to remember/explain to your dad that her aggression is born out of fear. She is not really angry with your dad, she is afraid and angry with herself for forgetting things, and is panicking. It doesn't always make it easier but it can help to remember that.

There is a dementia part of MN where you will find lots of other support and advice.

HTH

I'm afraid I don't have any brilliant ideas, but as someone whose dm is in a similar situation, you have my deepest sympathy.

My dm eventually made it to a doctor after much nagging from my df. He had primed the GP beforehand so that the GP could also talk to my dm about memory issues as we as the physical problem that my dm thought she was going to discuss. Medication has helped with my dm's dementia related anxiety, which was causing her enormous distress. Things like UTIs can make symptoms much worse and so are always worth checking out.

You might also wish to discuss your mums future plans about her health. If she has dementia, eventually her health will be out of her hands. She might prefer to write.down now what interventions she doesnt want while she has capacity. If you explain this once, then it is her choice going forward.
What does your dad say? All v sad

Not sure if this is helpful but when my DF started to get a bit like this we eventually managed to persuade him to go to the doctor for tests to humour us, as he thought it was DM's memory/behaviour that was getting worse! So he thought that was what the doctors would end up telling us.

Strangely my DF managed to pass all the tests, if my DM hadn't been with him I wouldn't have believed the results. So that bit isn't very helpful for you OP. Doctor said it was just old age.

Thanks so much for your responses, and great to know medication could help the anxiety. I totally agree the anger is born out of fear, and I think my DF understands that too. I think he would hate to have her in a home, but that may have to be what happens as there's only so much he can do long term.

Getting power of attorney would be a very difficult conversation. Perhaps DSis and I could suggest we get it for both our parents 'just in case' to make it less pointed - or maybe we just need to be blunt. But that would be very painful for all of us, and especially DM.

I'll keep badgering her about the doctor - but perhaps I should explicitly say that it's for her memory as well as her leg - though I think she will react angrily to this.

I'm just not clear how honest I should be with her about her memory. DF has been saying for months that he will talk to her about it but I definitely puts it off and I don't think he's going to do it. I think she does know on some level but it's never been explicitly discussed. DF & DM are big sweepers-under-the-carpet.

Ok, I think DSis and I need to sit both of them down and talk through things like power of attorney and end of life issues. Even though DF is in good health, and nearly 80 we should probably been on top of this. And then I will badger and badger my mum to go to the doctor and hope that will help. I very much doubt she'll want/allow my dad to go with her though.

Sadly DF passed away 6 months later as a result of terminal cancer, but in the last couple of months his memory/behaviour got worse. Took memory tests again and failed them all . His death certificate cited dementia as one of the causes of death.

I would second getting the POA in place as soon as you can. DM thought it would upset DF when we first broached the subject a few years ago. Once DF's mental capacity started to fail rapidly in the last few months it was too late to set one up as he didn't have the capacity to sign it.

In fact I would recommend people getting them in place even if relatives are healthy. It makes a stressful situation even more stressful when trying to deal with financial matters etc if there isn't one in place. Also might make it easier to persuade your DM to have one if you are doing a job lot of them, although they are expensive.

I very much doubt she will go to the go even with you phoning frequently to nag/remind her.
I would be inclined to call her gp in the new year and talk to them 're your concerns based on what you have observed....they then may agree to call her in for a "review" or may do a home visit to assess the situation. Taking medication in the early stages can really help for a while.
Getting POA's in place for both of them is also vital.....in fact a good idea for everyone to do so maybe you could say that you are doing them as well??
Good luck

Calling her doctor even without her getting an appointment is a really good idea - we'll try that. And definitely get on the PAO for both parents.

As someone who is just coming out the other side of this with my mother I would recommend the doctors who can refere to the memory clinic who in return can arrange for medicine for your mum .Th medication has made a massive change for my mum

Watch out for any type of UTi as this makes angers and confusion really really worse .
We get my mum to drink a glass water with the cystitis sachets each day as it good at preventing UTI but we also keep a spare packet of water infection tablets at hand just in case

If she is diagnosed you can then get back a big rebate on your council tax to the date when the doctor believe this started plus you get 25 or 50 percent off the council tax

Apply for Attendance allowance it's worth between 50 - 80 a week tax free in fact I woult apply for both of them at there age it's pretty much a done deal to get it .

My parent both get the high rate so they get about £165 a week on top of there pensions which is a massive help to them they OY for a lady to come in every other day and help my mum have a shower .

They also got a blue badge and a disabled space put outside there house and get the warm discount rebate from there energy supplier

One other thing to consider is a will especially if one of them need to go into a care home and they own there own house

You can have the will written so that the tenancy is split so they both own equal parts and when one dies there half goes to you / sister but the survinging spouse has the right to stay in the house

This also prevents the local authority getting there hands on the house should the remaining parent need to go into care as the local authority can only touch his part not yours and your sisters

This is perfectly legal and Mumblechum on here did this for my parents recently

Probably TMI but your dad should wherever possible check your mums urine .

If it's very dark / smells strong that indicates a water infection
You would honestly not believe how a simple water infection can affect the elderly .
It can cause delirium , hallucinations , serious aggression , and really bad confusion which all makes the you think the dementia is worse

Any type of infection like a cold ,or even a ear ache can cause problems with the elderly with regards to confusion but a UTI is the worse of them

My mother turns into Chucky and Freddy Kruger instantly when she has a UTI and in that state she could give the worlds worse serial killer a run for there money 😂

I had absolutely no idea about UTIs, that's very useful to know. I'll talk to DF and DSis about it too. Thanks as well for all the legal advice - will look through it carefully and make some plans.

Honestly UTIs and any sort of infection are the devil when it comes to the elderly
Often what happens is they get one , it clears up and they get another one straight away .so it's a never ending circle .

It really causes a lot of symptoms that is associated with dementia but if your not aware of it you just think the dementia is getting worse .

My mother is honestly like something out of the exorcist when she gets a UTI .
Her aggression and paranoia goes through the roof and her confusion is about 10 times worse .

That's why it's worth checking her urine for signs of it every other day or so . The tablets work really quickly so even a hint of a UTI can stop it in its tracks . You can ask the doctor to give you some so that you always have some ready just in case .

Also fhe cystius sachets you can get from boots / asda the cranberry ones are nice

We put it in a bottle of water and shake it up and my drinks it throught out the day and that seems to help her not get the infections so frequently

Magpie I'd forgotten about UTIs even though we had a flare up in the autumn. Did your mum's GP give you antibiotics for "just in case"?

My mother was diagnosed with dementia seven years ago, but (like your mother) had symptoms for a couple of years before this.
My advice would be:
Don't talk to her about her memory. She will likely feel victimised and take it out on your father. The memory loss can't really be treated effectively and she will keep forgetting these talks anyway.
Unless someone is in the very early stages and of a pragmatic dispositition, aricept does not help ease their anguish.
My mother was caught in a vicious and distressing cycle of getting upset about the same things over and over again. Anti-psychotic medication helped a great deal to break these circular thoughts. I would consider trying to get a referral to a psychiatrist - particularly if her behaviour begins to get (more) abusive or violent. It will make it easier for your father and her to spend quality time together. The danger here is that he and you will end up spending all your time with her trying to manage her behaviour.
Look into dementia-friendly forms of communication. Getting your mother to 'see reason' (or remember things) won't work. Although it sounds as though finding ways of communicating agreeably without being perceived as 'condescending' by her won't be easy to start with.
It does get better. It sounds awful, but once my mother stopped recognising that something was wrong and became oblivious, I was able to spend more enjoyable times with her.
This is just my experience, of course - but hopefully of some help to you.