Support for anyone with a parent with dementia - drop in for support, a rant, or a cry. All welcome.

[CMOTDibbler]

Welcome to the thread no one wants to be on, but we are all travelling with our loved ones along their journey with dementia.

Very hard when it is like that and I suspect how some of the abuse gets covered.

This definitely happened to Mum and she had to get to her alarm button trying to fend him and his waving stick off and keep fending him off till help arrived. The one member of staff I saw today was very cagey.

She called for someone as wanted a hot drink, pressed at 2.25pm. No one came until past 3.05pm as I timed it. Then turned up with drinks for both of us (lovely), no reference to the bell having been pressed and didn't cancel the flashing light.

It's terrifying, isn't it? Knowing that their life and happiness is in your hands.

Absolutely, so hard. I posted in Chat just after lunch asking for opinions as wanted more traffic and opinions on the situation . One reply and that is from someone who posts in this section.

It's called 'incident in Care Home' or something similar. Swap that for 'Incident in Nursery' and I bet there would be far more replies.

I'll have a look for it, thanks! I agree about the nursery thing- I think it's often overlooked just how vulnerable elderly people can be.

Hi. Thank you everyone for posts - daft thing to say I know when it is people's sad and stressful stories. I don't know where we are going now, but it's going to be in the same direction and I know even now I am having difficulty coping.

Mum (DH's mum) is still pretty independent, but she's lost a lot of capabilities and I can see it growing slowly but steadily.

I've noticed her having mood swings during the day (we live quite a long way away. She calls often several times a day. I field the calls as DH does difficult work that needs a lot of concentration. I've taken to leaving the phone off the hook when I am out, so that people he's working with can Skype him and mum can't call for an hour or two.)

Now recently she's taken to telling us we've cancelled visits, that we come on regular days, and that we are disrupting the "other people" in her life by changing things (which we hardly ever do). There's no argument. We see her once a month, on weekends that both of us can manage, and are more or less on call if something goes wrong, even though we are an hour and a half away. She's done "cancelled visits" a couple of times before, but it's been for a reason (badly written diary, or we really have changed something for a reason) but now it's like a blanket accusation. I'm not handling it well. I've never dealt well with being told that I am lying or making things up, and though I know it's mainly her loss of memory speaking, I don't know how to deal with it. At the moment I am just arguing, because I don't know what else to do or how to end the conversation!

Also, she likes quarrelling, she's even admitted it and this makes my skin creep even if I try not to react. My wise late FIL apparently told her early in the marriage that he wasn't going to rise to a quarrel, because "things get said". He had a much stronger nerve than I do. I just feel backed up against the wall and don't know what to do.

DH handles her differently but doesn't react any better. They just bicker. She has always been a strong personality ( ... ) and she is a strong personality at him - she's more spiteful to him than she is to me, becasue she knows I answer back ... this sadly is her dark side, not the illness. She's not like that all the time, but it's a constant undercurrent.

Venting a bit ... I don't know if it makes me feel better but at least it puts it into words. We don't know how it will go, but it is scary. She is in very good physical health, despite being over 90, apart from glaucoma, which so far she has controlled. My friend's mother was accusing him of hitting her before her life ended, and they had a really good relationship when she was well. Despite her combative personality, I cannot imagine my MIL doing that (she's verbal ...) but I am coming to realise that nobody is immune from anything with this disease. We will have to start handling her financial affairs at some point, too. At present she's glad to discuss things with me, and now I realise this too may change.

At present all I am doing is fielding her calls and visiting as regularly as we can while having a life. It's rung one, and I am already not coping well :-( Has anyone got any suggestions? I noticed some people have been getting counselling. That never occurred to me. I have had some workshop help for anxiety (not just about this, but it's a main cause. The rest is just my personality, I think.). I don't know how to find a suitable counsellor, but I guess I could start by asking my GP?

Will stop now before I use up all the letters in the computer :-)

Morning everyone

Just to let you all know an advisor from the Alzheimer's Society will be on this thread today between 2 - 3pm, so please do pop onto the thread if you have any questions, or simply want to share your experiences

NotHilda, your post made perfect sense.

Have you had any form of diagnosis?

I found it really helpful for there to be a label. First because it makes it easier to say "it is the illness, rather than the person", second because you then have a network of professionals you can call on for help and advise, and third so that her file is appropriately flagged should she end up in hospital.

To do this I would:

1. write to the GP explaining that there may be some memory issues and could he see her. (If she is willing for you to go along, especially if he refers her for a full test at the memory clinic, so much the better. You get a good chance to understand where memory has diminished.)
2. ask social services for an assessment. This sounds grimmer than it is. They will want to keep her living in the community for as long as possible, and can help you support her.
3. Explain to her that it is worth having her memory tested as there are now drugs out there that can help. Also encourage her to set up POAs. (If you have a health and welfare POA make sure the GP knows and he will be able to speak to you directly.)

Some of the mood swings may be caused by fear and depression, which are as a direct result of not being able to remember much. Certainly my experience is that now my mother is in sheltered housing, which she likes, now Aricept has stabilised the pace at which she is losing memory, and now I handle all the bills and finances, she is settled and the difficult episodes less frequent. (She was never destined to be a sweet old lady.)

However, although she is reasonably happy, she says she is bored and wants to die. Her general health is such that she faces perhaps a decade of declining memory and faculties. If you don't remember who your grandchildren are you cant take pleasure from their achievements, if you can remember you cant read a novel etc. I find it difficult to have a good conversation only for it to be repeated the next day as she now has very little short term memory left, and to realise that my mother has half gone. You cant escape that dementia is awful. But you can make the process better for both you and your mum.

Hello all,

I have posted on here under another name in the past but name changed for this. I have just created a website called www.dementiapoetry.com to express the honest emotions a caregiver can feel.

Please feel free to stop by!

DG x

Ok having just read through this thread I will also tell my story.

It's a bit of an unusual one in that I find myself caring for my mother-in-law for the last three years, but am just 32 (my penance for marrying an older man).

I didn't know when I moved back to the UK for him that his mum was already going down that road.

She is not as bad as many other posters have had to deal with, but still successfully manages to drive husband and I insane on a daily basis...

Am not a very patient carer (at least not inwardly) I'm afraid - hence the poetry to help me vent in a "safe" place and not to MIL's face!

DG x

Your poetry is lovely

Not hold a that sounds tough. My Mother loves arguing and used to deliberately provoke one although I told her I found it very stressful. I had subsidised counselling through a charity a friend pointed me towards.

Demented girl I love the Memory Clinic one - I'm sure anyone who has ever been will nod their heads in recognition. Are Carers an option to help you out with MIL?

Irony alert. Letter from Aunt today.after long session with Google translate it turns out that my Mother who made it clear she expected me to put her care before work etc refused to let one Aunt give up a crap job and move in with their Mother after my Grandfather died.

Instead she insisted my Grandmother should go into a Home - one of those places she insisted she herself shouldn't go recently. The Web of lies she spun is falling apart now. Seems she told my Aunt my Dad forbid us to learn Germany unsurprisingly Das has no recollection of this. And my Grandmother died of pneumonia not hypothermia as Mum told me.

@needsmoresleep

Thank you, a lot of that makes so much sense. I don't know anything about care assessments, that has reassured me. She is still cautious about being intruded upon (and so am I! We are somewhat alike in some ways, though not in lifestyle or interests at all). We have POA for her money, but not for Health, and it hadn't occurred to me that her GP might not talk to us without one. But maybe in due course he can help us set one up. Or maybe the surgery would just accept a letter from her. It's early days yet.

For the first time we are starting to talk seriously about her moving into flats just for the company, though till now she has insisted she would not move unless she had to give up driving. (She has a very good driving record, but we are noticing that she and "car park furniture" seem to have an increasing attraction for each other. Mind you she is 5'2 and how she could ever see any of these low walls in many supermarket carparks is beyond me.) There are likely to be financial issues, but she should be OK as long as she doesn't go bananas on her spending as some dementia sufferers do. She's always been very responsible.

So here we go again - I feel I should look at the possibilities that might be available in having a visiting carer - not so much that she needs help, as just to have someone to touch base with. It worked well for a friend's mother but they happened to know someone personally, who was a carer. In my case I don't really know where to start ... I know you can hire regular visiting care, but not how to locate someone cheerful whose main task is just to check in and listen for a while. Yet something like that might win us a breather while we try and work out the longer term plan.

That is one of the ways SS can help. In my mums area there is some sort of befriending service run by volunteers, who come round regularly for a chat. There are all sorts of other things like University of the Third Age and various groups and day centres.

You could just phone SS anonymously, describe your MILs situation and ask what is available.

You may find it difficult to find a regular carer. I use a care agency to come in and prompt on taking medications, but am being driven mad by staff turnover and the inability to address wider problems, noticing that sheets needed changing. No sooner than we get someone who will take a bit of interest and responsibility but rotas change and it starts all over again.

In contrast having my mum move to very sheltered accommodation has been great. She has company on tap and I have someone I can phone. One day they will tell me she is no longer coping and needs to move to a care home. The best guess is that this is about three years away. She is happy with as much independence as she is capable of and I wont face having to make future difficult decisions on my own.

You could phone the GPs reception to ask whether they need the POA or simply permission from her, in order for them to speak directly to you. POA forms can be downloaded and ypu don't need a solicitor. I think my mums GP asked her if she was willing to have me involved. It was at a point when she needed someone to support her (she had a UTI and was quite out of it, plus was getting treatment for a broken hip) and the POA forms were signed and submitted so the GP may have been proactive in encouraging her to agree. I have not had problems booking appointments, chasing prescriptions and blood tests, etc so worth making sure you have this access.

Can't add much to NMS' s posts but just wanted to mention the Alzheimer's society. My local branch was very helpful. Also when someone gets a diagnosis here they are allocated a Memory Support Worker who supports the person and their carer until the point residential care comes into play.

Worth also noting that a diagnosis could help a claim for Attendance Allowance which in turn can lead to exemption from Council Tax. The two combined can be about £500pm which would pay for someone coming in each day to check on her.

Thank you all. I am seeing her in a couple of days and we are going to be talking about moving into a wardened flat. She's now suggesting it positively (I think the dismal weather recently has been the last straw for her). She's been in the same house for over 50 years, it's going to be a wrench so if she is talking about it positively she must be serious.

That is progress Nothilda, though obviously a difficult step to take. Some places have someone there 24 hours a day, include cleaning, can help organise care packages etc which would help her retain her independence for longer.

Hope everyone has had a calm and peaceful half term. We are hoping to book Mum into a new place for a couple of weeks as a trial as the CH are voicing doubts as to how she will take the move from her flat to the main house.

They are also put her on the list to see the CPN as her paranoia has ramped up even further after the incident with her neighbour. Think she is currently having a psychotic episode and suspect they might decide to medicate. Brother and I have discussed anti psychotics and decided we will agree to them despite the risks if they do decofe they are appropriate as she's clearly quite tormented with her beliefs that her food is being drugged etc.

Unfortunately the place I would really like her to go is still being built so not an option. Just hoping there is space in another I have seen. DD has first GCSE paper this week and being difficult so I think the current peace in the house is the calm before the storm. On the plus side FIL much more coherent and no more disasters for now and we've had worse so hoping to keep things at home as calm as possible.

How I envy those though who aren't dealing with parents and children at the same time.

Hi all a newbie here.
Short version, 90 plus year old parent, passes capacity assessment as he can deduct 7 from100 till the cows come home! They didn't ask him day of the week/ prime minister / name of an item. He didn't know day or month or year. Is totally unsafe. Has left gas on , cancelled his care package to a minimum. Now accusing carer of stealing food! All food present and correct - I triple checked. He's violent, eats mouldy bread, puts cleaning products in his mouth, has locked carer out before. He doesn't remember names, who we Are. Gp no help as views him as awkward but has capacity. Swkr said he hadw capacity but lacked insight into his often strange choices! He refused to go and have a scan for dementia.
Now is again threatening to go to the police about the carers. I'm not interfering in the hope that someone will realise he needs help and actually do something. He won't go into a home, or have the help he needs. Oh and he's doubly incontinent. He tells the district nurses to go away as well.
Hence my username - sad and very fed up! Thanks for reading.

Hi Savfu, very sorry to hear this. I think you and your Dad are being let down by the professionals involved in his care. My Mother could score 29/30 on the NMS but was deemed not to have capacity as she did not have insight into the implications of choices she made about her care so could not make an informed decision. People have the right to make choices others may consider to be unwise but they need to be able to understand the implications of this. It is a grey area though and I think people don't like making that call because of the implications and the fact that capacity fluctuates.

I think you are right to stand back but would suggest you keep a diary. If you do decide at some point you need to force the issue I suggest a letter to the SW outlining everything he has been doing and stating that you consider him to be a danger to himself due to his condition, lack if insight and behaviour. Give as much detail as you can about behaviours that mean he is a danger to himself, say that you do not consider him to have capacity and therefore is a vulnerable adult and you hold SS responsible for his safety.

We forced the issue with my Mother but it caused a huge falling out. DH feels FIL would now fail a capacity test but he is in Spain and there is nothing we can do but I don't think we would force the issue with him if he was here (he will be in the summer) as one of my BIL's is very much indenial about the situation and we were in that situation with my Brother which got very nasty.

Please do use this as a sounding board whilst you are standing back, we all get it

Savfu that is shocking. Not in UK so don't know a lot of legal advice or what you can do, but

DGran had a swallowing assessment but it took ages because she was so confused and was angry, but she seemed to be very certain about wanting me to be there, which is definitely a positive as she normally seems to want me to go away. I was worried it was going to be an infection as she'd most likely be placed on nil by mouth and I have no idea how she'd cope with a nasogastric tube, but also worried that it wasn't an infection and it would just degenerate even further. Her sucking is stronger than her swallowing and she's using short straws and is being given a lot of small meals rather than a few main ones. She seems a lot calmer in general though

Hi thanks for the replies.
When I first started caring for him, I went on a carers course run by the local carers org. They advise you to keep a record of everything, so I have documented lists of what happened when, who spoke to who, who visited etc. however it doesn't seem to make a happorth of difference. Under human rights, he has the right to make the decisions he does until someone says he lacks capacity. I have both lasting powers of attorney both registered and use the finance one as he has been unable to pay bills etc for many years. I would say he lacks capacity but until a medical person agrees we are stuck.
I have expressed my view that he lacks capacity and is A danger to himself and others, but it's the score that counts apparently. And the fact that re refuses to leave the house to be assessed further is his right to do so.
one of the most frustrating things is I suspect he'd like being in a home if he only tried it, as he thrives on order and routine. In a home, he'd get regular meals at regular times, with a ltd number of regular staff, allowing for different shift patterns. It's so frustrating. I haven't had any calls yet today so don't know if he's phoned the police or not. Thanks again.

Are you in the UK ? There is a correlation between MMSE score and incapacity [m.pb.rcpsych.org/content/32/2/56.full here]] but the Mental Health Act does not say if someone scores highly on the MMSE then they have Capacity. I have read the guidance not as for Health Professionals making Capacity Assessments and it absolutely does do not say that.

If you want to take it further I'd suggest looking for a Carer's Advocate to help. I have copied of both Capacity Assessments carried out on my Mother and they make no reference to scores on tests. One was by SS and one was by an Independent Capacity Assessor. It really isn't the score that counts and unless I am missing something, I'm pretty certain you are being fed a line . The bit about his Human rights until lacking capacity is bang on but capacity does not depend on the score on a test. Mum for example got 29/30 on the MMSE (ie normal) but 68/100 (82 is cut off) on the ACE-R which highlights her cognitive deficits.

If you have decided you're going down the withdrawing route, please ignore that. I think sometimes that is the easiest way of retaining your own sanity in these hugely difficult situations.

Hi yes I'm in the Uk. I had a phone call from the care agency yesterday asking what had happened about the Gp visit last week and I said I hadn't heard anything - which is usual. They were going to chase it up as the duty social worker had phoned them for an update. Father had fallen out with yesterday's carer apparently. Haven't heard anything today. It's all very well biding your time, but it doesn't half put your life on hold !!
How did you get an independent capacity assessor can I ask.

It does take over your life, very definitely and create a constant underlying stress. My Brother instructed the Independent Assessor as he was contesting the Capacity Assessment carried our by the Psychiatrist. I have the details of him if you'd like him but he is down south.

Fun and games here. Mum's bloods back and she has low grade heart failure. GP wants to do EGG and then give medication. She refuses to do anything until we have removed her from current home.

Wah. Dad is back in hospital, mums at home.... At least this time the emergency carers came out.

Sounds like dad might have to stay in, and hes very resistant to the idea of respite care. But if it has to happen, then he'll have no choice tbh