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.

Thanks for your reply CMOT.

I feel like having a parent with dementia is a taboo subject and the responsibility involved is completely misunderstood. For example, I wouldn't need it spelled out to me why people with babies or dogs have to consider them when making plans, but it doesn't seem to be the same with dementia.

Anyway, I have read a bit of the thread and am sorry to hear about the stuff with your brother.

Oops sorry didn't mean to post that above, will post properly later.

Hi, will post properly now.

Today my mum was diagnosed with dementia and although I expected it I'm feeling a bit upset/shocked/all over the place.
She's living in retirement flats at the moment and has three carer visits per day since leaving hospital after a fall.

Things with the carers are not going well. She's refusing help with personal care and won't do it herself. Her GP has put her on an antidepressant as he suspects she's depressed.
The next step is a brain scan to see if she can go on some sort of tablet to slow down the progression and lots of appointments with various professionals.

Just been wondering how to find an "independent" dementia assessor, as Mum is resisting going to her GP, but I see the ones who advertise on this page charge nearly £1000 for an assessment, and more for tests. I don't think that is best use of her money. She's just had a car accident, and though it would be called a minor one for any normal person (she pulled out of a parking area and hit - or was hit by - someone who had just come into the side road from the main road - or so she told me on the day, she can't remember now) the car is likely to be a write-off, she's talking about buying another car as she doesn't live very close to the shops, and we - and her stepson and his family - are not comfortable with her continuing to drive. Maybe we are over-reacting, but she forgets such a lot, and we have already had to tell her not to try and drive outside her local area as she got lost trying to get to us a couple of Christmases ago even though she had known the route for 30 years.

She forgets such a lot that in reality she can hardly organise anything herself - she can call people and make appointments, but then in a few hours she has forgotten what the appointment was about and then forgets she ever made it. But she is so articulate when you talk to her (and good with numbers, though that is slipping now as well) that I can't see how anyone is going to believe how much she lacks competence. She looks after herself fine on a daily basis, as long as she can follow her impulses and do things when she thinks of them, but as soon as she has do anything unfamiliar, or remember anything for more than an hour or two, she relies on us, and if she's anxious becomes frantic. She was calling my brother in law a dozen times a day at the end of last week, and again today, because she is worried about her car (and he has kindly taken on dealing with the insurance company, as he knows about cars). So we are in a position of having to organise everything for her, but we have no actual control over what she does at all.

I guess a lot of other families are in the same situation. It has finally sunk in that I can't ask the local Age UK if she can have the occasional volunteer visitor to fill in her social life a bit, because unless they are trained they won't understand her behaviour (life story, everything she wants, someone rings us up to "tell us" about all this and offer well-meaning but useless advice based on what they have "discovered", lots of new stress for us - it happened with my BIL a few months back after he went round to help her with a light bulb - fortunately they knew her so it only took an hour to get him up to speed ... ). So we can only look to dementia carers. And I don't know if they will take on providing a couple of hours of extra company a week for her. The worst is that she had been relying on taking out herself and a friend, who I think is much the same as she is, at the weekend, because she had a car. If that falls through, she may find herself with nobody to see at the weekend, as I think the car is her "trump card". I hope that isn't the case ... not that her friend means any harm, but like Mum, I think she just does things on impulse and takes the easiest course.

She was even talking about "walking up to the nearest shop" this morning, but she didn't, and I don't think she ever will. It's about half a mile each way, and she has no mobility problem except being 90+ and getting tired, but she hasn't been there for years without the car. Her intentions are genuine - she was even looking for her bag-on-wheels, which she hasn't used for years. So many of her conversations follow this pattern: she's going to arrange something, or go and see someone, but she never does. In the end we always have to make the call.

This is a rant, isn't it?

NotHilda- that was my concern when they first shifted the dementia board here. It is obviously tied in with this Red and Yellow care outfit, who must have paid mumsnet a fee for being on here and therefore we are faced with adverts for it whenever we visit this page.
The NHS should be your first port of call, diagnosing dementia is not usually done in a day and requires a range of tests, questionnaires, conversations with specialised staff and also brain imaging. It is all free! Your mum's GP is the place to start. I had to go through the process with my father it involved his go referring to psychogeriatricians at his local hospital, a couple of long questionnaires and 2 brain scans. It was of course hard news to face up to, but Dad was "only" 76, maybe at 90+ it's not such a big deal.It has been useful to have a diagnosis, and most of all for me having power of attorney has been essential as I have had to take control of Dad's affairs. Good luck

Hello all .. can't remember if I actually posted on here before, but I often read it ..
My mother has (possibly) got vascular dementia. Last year we went to the GP who said, 'If you really want a diagnosis, I suppose it is probably vascular dementia'. Later, when I said that my mother only wanted to be able to stay at home until she dies, dr said, 'Well, that's not going to happen.' but offered no more suggestions. I telephoned about a week later to talk to the surgery and ask if there was any medication which might help, but the gp I spoke to said there isn't really much point. That is the extent of the medical support she has had.
I registered as a carer and receive one telephone assessment a year of my needs and 20 hours subsidised carer help for my mother a quarter, which I use so that I can go to work - someone brings her lunch on my long days.
I have no support; my sister does not get involved, my DH doesn't particularly like my mother - she lives with us - and the only person who notices when I feel desperate is my 8-year-old daughter. When I started crying at work one day last year and couldn't stop, I was taken to (yet another different) gp by a friend and told to self refer for counselling. After 10 months I received an appointment with a counsellor. Unfortunately this has not been very helpful and I never seem to get time to read all the books and articles she recommends for me.
I would also never have believed that there is so little help there ... I miss my mother so much; she is ironically, the person who could best help me, if only I could reach her ... she had a long career in medical and caring services ...

Absolutely no point in writing all that really; don't know why I did it, when I should be washing up and making everyone breakfast ...

Nothilda, could you ring your mums GP, stress that you know they can't tell you anything about her, but that you are concerned about behaviours x,y,z and feel she really needs an assessment. Most GPs will call people in for a 'wellbeing check' or some other reason to see them and do an assessment.

BelleDame, do you get attendance allowance for your mum?

Yes, I do. And, ironically, having said all that, she was rather alert and lucid this morning, which hasn't happened for a couple of weeks. Didn't recognise her own house, room, etc, but did recognise me (I think) and the dog.

Thank you WhatAboutBob ... that gives me some idea what we might have to go through. But at the moment I can't get her to go anywhere, as she is waiting to see if the insurance company will write off her car after she pushed the front in against a van ...

I sent her a list of taxis (compiled by me) and suggested she called her friend and suggested they shared a taxi and go out on Saturday. But she wont'. She "knows" the friend won't want to pay for a taxi if she can get her supper at her sheltered flat. She just won't make the call. She won't try. This is the way she wouldn't think seriously about flats a year or 18 months ago, and now it is probably too late for her to go into a retirement flat.

If I try and push her, she tells me to go away and she will "sort herself out", but she can't ... she can do all the everyday things she needs to do, including her shopping, but she can't organise anything beyond that. "I want to move into a flat", she says, but when we go and see a flat, she's forgotten about it by the next day. The only one she remembers is the one who refused to take an offer from us because they had noticed that she forgets going there ...

I'm shocked at the lack of support that LaBelleDame is getting.

I don't mind "councillors" referring to books or articles, but it seems that this is all some of them do. The only time I went to a councillor for a while (about something much less harrowing than this) she gave me one book to read, but she led me through quite a few excercises that did help me.

CMOT thanks for the mention of a "wellbeing" check. She will be deeply suspicious if I try and go with her ... but maybe if the Dr sets it up, she can go by herself ... I don't know if this will work, as they may not be allowed to tell us anything (we don't have a H&W POA) ... unless they write her a letter and she doesn't notice it. (If it's something she doesn't like, it will go in the bin, though she normally keeps stuff for us to see.)

We are not having a great time of it here.
My mum's GP randomly paid her a visit and ended up cofusing and upsetting mum. I think Vascular Dementia is suspected and the doctor said something to my mum about mini strokes which she has had in the past but mum thought the dr was saying she'd had a mini stoke recently and hasnt got dementia.

We seem to be hitting a brick wall with the "help" available, no one really wants to know. The council said something about "too many elderly people and not enough resources to help them"
We also seem to get people saying one thing then saying the complete opposite or that they never said it in the first place.

One slight good thing is after an unhelpful call on Wednesday, we did receive a call yesterday from Adult Social Care that did seem a bit more positive so we'll see...

Chas, I agree that there is no help available ... write down everything everyone says, with name and date; I can't remember half of it. Everything is so emotionally charged that that sort of overwhelms my brain.
We found the local branch of Age Concern (are they still called that?) was really helpful. They sent out an advisor, a volunteer (ours was a retired hospital manager, so did know his stuff), to talk to us and help us find out if anything was available. He also filled in the forms for the attendance allowance, which was a great help as I was grossly underestimating what I was doing. I was putting down that my mother needed no care at night, for example, although I was always sleeping with 'one ear open' and getting up if I heard her move about.
I think one tends to not want to ask for help, or to complain too much ... so English.
If you haven't, try Age Concern.

Thanks for that.
Someone mentioned Alzheimer's Society so think it might be useful to give them and Age Concern a call.

AgeUK have been really good for my parents, and they had an Alzheimers Soc case worker who did really try, but the best thing she did was get AgeUK involved

CMOT, you are right ... they are now called AgeUK. Very good advisors who will come to your home to talk to you.

Hi all
Typing this at 5am as yet again I can't sleep. First question is what do dh and df and ds stand for- I get mil and fil - in laws but can't work out the D ones!
I've posted before as having bother re my 93 year old father.
He's deteriorating but I'm still batting my head against a brick wall. He's now taken to his bed having again refused extra care- he lives at his home and wants to stay there. The people who come when he presses his pendant after a fall rang me last night to say that now he's ringing them in appropriately to ask for a drink of water or whatever. We've tried getting him to have more care carer calls in the day but he refuses and as I posted before he's been deemed to have capacity but lack insight. Now the care people say I have to ring the social worker as next of kin not them, to say that he is misusing their service. But I'm guessing what social services will say -
Social work asst has now done a risk management assessment which states that he is aware of the implications of his decisions to not have extra care, not eat, drink, staying in bed etc. they say there is no role for the Gp until he has a medical issue. They will yet again argue that he has capacity so he can make those decisions.
It seems so wrong that it will take for him to break a hip when he falls for anything positive to be done. Also what a waste of NHs and social services resources!
Very fed up and tired!

Chill down my spine Savfu!

This is what happened to my former next door neighbour. She was left on a care package (I realise that now - to me it was just a folder with a phone number on the outside) until she fell and broke something. Then they took her and she was (another neighbour told me later) ranting and raving and attacking the doctor at the hospital.

She wasn't as bad as your father sounds either, she was just a bit vague (it seemed to me, but only the families or other people involved regularly ever see the reality).

My MIL has been ranting on the phone to my poor husband that "she never knew anyone who hates their mother more" because he will not go and buy her a replacement car. She is ranting at us and her stepson's family about this. This is not "normal" for her but it is part of her normal toolkit ... yet I heard her over the phone yesterday seeing her cleaners off, and she sounded just like a normal cheerful person.

She has now said she will see the Dr., because in her less angry moments she is noticing her own loss of memory, but whether I will be able to get her there I don't know. Perhaps if I hint that she won't get the car back until she has seen the doctor, it would help incentivise her, but I can see taking that tack having negative consequences. She takes the view that one of us has hidden her car, or that she's lost it. She saw the insurance people take it away on a trailer, but she doesn't remember anything about that, unless prompted. She's getting very good at picking up "prompts" about things she does't otherwise remember.

It is frightening that the social services won't help until the person actually injures themselves ... The AlzSoc helpline pointed out that the "duty of care" is with the social services, not the family, but it seems that they will do anything just to leave the family to try and deal with a situation where they have no right to make any decisions, only to try and influence someone who is fighting tooth and nail to get their own way when they are not actually able to cope with it.

MY MIL has Alzheimers. She started about 5 years ago to really show the signs and lived at home with my FIL. He could not really cope but would not for three years have any help at all (we live 250 miles away) insisting that he could cope. Social Services said they were powerless to force help on him. FIL would not shower MIL or provide ANY personal care - she was often dirty and smelly. In the end he agree to once care visit a day (self funded) to get her up in the morning. She clearly needed more and relucltanty he agreed to one evening visit too which we arranged. However MIL was becoming doubly incontinent so we told him he HAD to have four visits a day. He utterly refused saying it did not matter if MIL sat in her own S**t , he was not having any more people come to the house. My DH (who has power of attorney) said that if FIL would not have the help come into the house MIL had to be taken to a home. Which is what we ended up arranging . And a year later he had a stroke and followed her in. Care for both of them costs t hem £50K a year (they have too much savings) to qualify for any state help at present). They are still 250 miles from us. Care in a care home down by us would be £100K a year for two.

Hi both
Thanks for the response. I still don't know what DH stands for !
I have power of attorney - both sorts - but whilst I can do all his bills etc I am powerless to get him clean, well fed and safe! He's also doubly incontinent and the house is both hot as he feels the cold and smelly and there is also no oxygen as he won't open windows or doors. I feel quite wheezy after a visit there. My husband and I have said to our daughters that unless an illness strikes us and we don't know what is what, we will put ourselves in some sort of accommodation/ carers early so that they do not have to deal with what we are having to deal with.

MIL seems to be "seeing me around her house" on a more or less daily basis at the moment. She's imagined we or one of us is there before, or that she has been away, but this is the first time she keeps imagining one of us is there. I didn't know this happened - I've heard of dementia suffers becoming paranoid and imagining that things are being stolen (for example) but not that they hallucinate people they know.

Hopefully I will get her to the doctor soon, for what it is worth.

She says that "I" have not asked for a cup of tea, so we agree this is clearly not me really and when I DO come, she will know I am the real thing by the way I head for the kettle.

I hang on to the idea that this isn't typical, and maybe the doctor will find something that can be treated. She (the Dr) mentioned hypothyroidism - I thought perhaps she was just giving me "something to tell her" which wasn't scary, but it seems that can cause confusion in elderly people. But she has none of the physical symptoms.

Savfu and her husband are right ... MIL has dodged the question of going into a sheltered flat, because moving seemed like tough work and she didn't quite like the idea. Once she investigated and did like it, it was too late. We didn't know any better. We need to spread the word.

Nothilda - unfortunatly some forms of dementia do cause hallucinations.

DH and I have been trying to persuade his parents who live in a large house on top of a hill to think about moving into a very nice complex of flats with its own pool, gym, coffee shop, restaurant, but which has an onsite care team so you can buy in any care as and when you need it. They won't even consider it which really annoys me as they have enough time to really enjoy it. Instead, they admit the house is too big, but every house (not even a flat) they look at isn't right for some reason

Hi, I joined Mumsnet after being a lurker for a while, especially with the dementia threads. My mum has dementia and lung cancer, don't think the cancer has took a grip yet (they wont scan her as she has dementia) so me and my sisters are taking it in turns living with her (she still knows us). Just sometimes I feel I have no one to talk to as me and my sisters are all doing different shifts with my mum so she isn't alone, friends aren't interested (though I don't blame them), husband tries to care but when its not one of there own its not the same. Thanks for letting me vent, I have a busy life. kids/gran-children etc but never felt so lonely in all my life. x

May I join in? I have a very dear friend who is German, lived in this country for about 50 years, she is 73. Two years ago she was diagnosed with vascular dementia, which seem to be getting much worse. She lives two minutes away from me in an old building which has been converted into very lovely flats. She has one daughter in her 40s who lives in Ireland, not married. The rest of her family all live in Germany. She has a lot of friends here, good friends. Her daughter has arranged help for her 7 mornings a week, someone makes her something to eat every day etc. The problem is this. Once the carer has gone she is lonely, by 4/5pm she leaves the flat and starts wandering often calling in on me as I am just round the corner. She has been seen out in the dark, seen early in the morning, unsuitably dressed etc. She cries a lot, is very much aware of what is happening to her. I am so worried about her. Last night another friend and I had a long talk on the phone to her daughter in Ireland and told her our concerns. She said she was doing all she could do for now as her mum refuses to go into any sort of a home. She was upset when we told her about her mums wanderings, state of dress etc, said she didnt know she was doing that. The problem is although she has this army of help every morning, they see her safe in her home. They dont see what we see later on in the day. I suggested to her spreading her carers out, I have said for now she needs someone to be with her say from 6pm until 9pm, to put her to bed maybe as she does get very tired and likes to go to bed and listen to the radio. I appreciate the problem could be that she forgets the carer is coming and has gone off for a wander around 6pm!! The daughter said she was finding it very hard to find anyone willing to come in in the evenings or weekends. She has someone Mon/Tues/Weds from a service called "Twilife" but they dont offer an evening call. I am sure there must be other help available, we live in Kent btw. Thank you for letting me share, I am so sorry that so many of you are experiencing this with your parents, it must be heartbreaking. I love my friend very much, she has always been so kind to me, helped me in the past when I needed it. But I cannot take this on anymore than I am doing now, which is popping in 2/3 times week or seeing her here when she calls. My dh has been fighting bowel/liver/lung cancer for 6 years, they now think he may have Parkinsons possibly caused by the chemo, I have 16yr old triplets so my own life is pretty full and stressful! At the end of the day, I would just like to see her safe and as happy as she can be with some structure in her day and some company, things she has always thrived on in the past. She was always so active, played bridge and golf and ran her own catering business for years. So very sad :( Thank you.

Hello triplets and slipper.just read your posts and didn't want them to go unanswered. Triplets it sounds like your friend is at a similar stage to my dad. He is also restless and often goes out at night. He too has had a very active life, grew up abroad and lived in north africa for much of his life, used to making new friends, going out lots etc. maybe there is something of his former life in how he behaves now.he simply isn' t used to being indoors all day. He lives with my brother, who struggles with his own mental health issues and can t provide. 24 hr care, there are daytime carers. But at least bro can call the police if he s not back, or go for a walk and look for him. Wandering will often precipitate admission to residential care. I am not sure what more can be done for this lady, there are GPS systems but of course someone has to be responsible for finding and bringing the person back. Maybe you could ring the Alzheimers Soc helpline and see if they have any ideas? It sounds like you have done loads for your friend and it must be really stressful. Dementia has a horrible way of demanding ever increasing levels of attention, work and inevitably stress. Personally I have learnt a certain level of uncertainty, insecurity and surrendering of control is inevitable, in coping with my dad s dementia.
Slipper I can well identify with the loneliness. There is still stigma associated with dementia,it's not easy announcing in social situations " my parent has dementia" and truly people can t understand unless they ve been there. It sounds like you and your sisters are doing a fantastic job, it will not be for ever,your mother is lucky to have you, many elderly people are struggling alone as triplets has shown.
There are more posters with experience of dealing with dementia on the elderly parents board ,under "responsibility for elderly parents". Come over!